I truly have no way to accurately describe what a typical day is like around here. Some days we have long periods of quiet and utter boredom. I spend my time quietly, always afraid to upset the balance. Other days are tension-filled from the moment Mom wakes up. Yesterday was a day of such extreme stress that I thought I would explode from it.
When Mom is agitated, very little will calm her down. Most often, the agitation lasts a few hours. But, occasionally, like yesterday, it is an all day occurrence. It began about 9 am and didn't end until almost midnight. The agitation usually starts off with a her asking a simple question. "Are you going out?" It then escalates depending on which wrong answer that I choose. And because her mind has difficulty processing simple information, all answers are wrong answers. So, "Yes, we are going out", becomes "I'm being left behind.". "No, we aren't going anywhere", becomes "Well, then I will go by myself. Where are my shoes? Who stole my purse?" Being evasive is even more disastrous. She becomes furious if you don't answer the question. And fury is not a good thing.
I think one of the most difficult things is when she wants a normal conversation. I have tried several times to write an example of her conversations but they just don't translate to the page. In fact, looking back, the conversations are so absurd that I begin doubting that I even heard what I know that I heard. This is one of the mild conversations that we have on a very regular basis... as in daily.
Mom: "Will someone be here to pick me up?"
Me: "Why do they need to pick you up?"
Mom: "To go home."
Me: "You live here."
Mom: "Nobody told me that! What time will they be here?"
Me: "Nobody is coming."
Mom: "You just lost me my job! Now what will I do?"
Me: "Mom. You live here. This is your home. You don't have to work."
Mom: "Oh my! They are going to hurt me. And you don't even care."
Me: "I care. I won't let anyone hurt you. That's my job."
Mom: Calmness. "So what time will they be here to pick me up? Where is that man? He told me he would be here."
Me: "I guess he'll be here in a little bit then."
Mom: "No, he won't. He doesn't like you so how do you know he's coming? He won't come if you're here."
Me: "I'm sorry."
Mom: "No you're not. When are they coming then? I need my things. Did you take my things?"
Me: "Does anyone hear that hammer?"
You may change this up as you see fit for the next several hours. And, that is my life. Well, that and a lot of yelling.
Monday, December 31, 2012
Sunday, December 30, 2012
She gets it...
Last week when we saw the new doctor for the second time, I felt my load lighten a little bit more. She greeted Mom and talked to her a little bit. She then looked at me and said, "Well, you look so much better. Tell me what has changed." She gets it. And that is such a huge blessing to me. Yes, Mom is her patient but she is not the only one being effected by the disease. She does what she can for Mom medically. But, she is there supporting me.
After the check up she told me that Mom is lucky to have me. I responded with a sarcastic laugh. The doctor asked why I laughed and I told her that I didn't think Mom would feel very lucky to have me. I am really ticked off all the time. And she then asked me when I would realize that anger is normal. She said that she would be angry too. And that she, with a medical degree, could not do what caretakers do. Yes, she gets it.
After the check up she told me that Mom is lucky to have me. I responded with a sarcastic laugh. The doctor asked why I laughed and I told her that I didn't think Mom would feel very lucky to have me. I am really ticked off all the time. And she then asked me when I would realize that anger is normal. She said that she would be angry too. And that she, with a medical degree, could not do what caretakers do. Yes, she gets it.
Sunday, December 23, 2012
Worthy of the truth...
"The worst part about being lied to is knowing that you aren't worth the truth."
The past 24 hours have been enlightening to me. Two things happened that were related and very surprising to me. I have mentioned that we have become very good liars in order to keep Mom pacified. "Yes, Mom, you are only 30." "No, Mom, I'm not your daughter." "Yes, it is Sunday." "Yes, your parents will be here in a little bit to pick you up."
What I didn't realize was how easy lying becomes. I hate lying and I have no respect for people who do it. So, it is startling to find out that I have become a liar. When a friend asked to stop by I responded by telling her that I wouldn't be home. Which was a bald-faced, inexcusable lie. She is not deserving of the disrespect that a liar shows others. She is worth more than that to me.
So, the other thing that happened? The reason I lied? I am embarrassed by where I live. I don't mean the, "Sorry, the place is a mess" type of embarrassed. I mean I don't want anyone coming here. Period. Mom's house has never been a palace but, up until I started being with her 24/7, she was on her way to becoming a hoarder. Oh, the crap she has brought into this house. I am finally able to start throwing things away... she doesn't remember that she had the stuff. But, there is only so much room in the trash can each week. And, even being here with her every minute of every day, I cannot keep up with her stashing. If there is a flat surface or crevice, it will be filled with cookies or bread crusts or lint from under the cushions on the couch. Or worse. I just cannot handle it. It embarrasses me.
I do not want to lie to any of you. Ever. So, until I am able to be comfortable here, I will ask you to understand that I have things here that need dealing with and please don't expect an invitation in. You are worthy of the truth.
The past 24 hours have been enlightening to me. Two things happened that were related and very surprising to me. I have mentioned that we have become very good liars in order to keep Mom pacified. "Yes, Mom, you are only 30." "No, Mom, I'm not your daughter." "Yes, it is Sunday." "Yes, your parents will be here in a little bit to pick you up."
What I didn't realize was how easy lying becomes. I hate lying and I have no respect for people who do it. So, it is startling to find out that I have become a liar. When a friend asked to stop by I responded by telling her that I wouldn't be home. Which was a bald-faced, inexcusable lie. She is not deserving of the disrespect that a liar shows others. She is worth more than that to me.
So, the other thing that happened? The reason I lied? I am embarrassed by where I live. I don't mean the, "Sorry, the place is a mess" type of embarrassed. I mean I don't want anyone coming here. Period. Mom's house has never been a palace but, up until I started being with her 24/7, she was on her way to becoming a hoarder. Oh, the crap she has brought into this house. I am finally able to start throwing things away... she doesn't remember that she had the stuff. But, there is only so much room in the trash can each week. And, even being here with her every minute of every day, I cannot keep up with her stashing. If there is a flat surface or crevice, it will be filled with cookies or bread crusts or lint from under the cushions on the couch. Or worse. I just cannot handle it. It embarrasses me.
I do not want to lie to any of you. Ever. So, until I am able to be comfortable here, I will ask you to understand that I have things here that need dealing with and please don't expect an invitation in. You are worthy of the truth.
Saturday, December 15, 2012
The hammer...
If anyone wants to know what it is like caring for an Alzheimer's patient? Imagine some one hammering a nail just 2 steps behind you. You never know when it is going to start. It can happen while you're asleep. Or when you are lucky enough to get a shower. It can happen in public. You don't know. But the one thing that you do know? It will start. And when it starts, it will not stop. You cannot stop it. You cannot control it. It just keeps hammering. And hammering. Until there is nothing left but the hammer striking the nail. Over and over.
Please...
Please...
-send me a little more patience. Okay, a lot more. I am going through it quickly these days.
-forgive me my anger. See above.
-remind me that this is a disease and she does not choose it.
-allow my children to remember their mother before she was a screaming shrew.
-let me see Your sunrise and see the beauty instead of the anger.
-whisper in my ear that I am the example that my children will become.
-know that I am grateful for each and every blessing that I receive each day.
-guide me in remembering You, not just when saying my prayers, but in all things.
-help me to see things through her eyes and show compassion when it does not make sense.
-teach me again, that Your love is stronger than my frustrations.
-hold me in Your loving arms and forgive me. Again.
-
-send me a little more patience. Okay, a lot more. I am going through it quickly these days.
-forgive me my anger. See above.
-remind me that this is a disease and she does not choose it.
-allow my children to remember their mother before she was a screaming shrew.
-let me see Your sunrise and see the beauty instead of the anger.
-whisper in my ear that I am the example that my children will become.
-know that I am grateful for each and every blessing that I receive each day.
-guide me in remembering You, not just when saying my prayers, but in all things.
-help me to see things through her eyes and show compassion when it does not make sense.
-teach me again, that Your love is stronger than my frustrations.
-hold me in Your loving arms and forgive me. Again.
-
Tuesday, December 11, 2012
Make-up
"Sometimes I feel like a clown who can't wash his make-up off." - Zac Brown Band
I try so hard to keep an even mood. There is so much anger and negativity in this house that I figure if I can stay positive and in a light mood that things will go more smoothly. Mom needs an even, calm atmosphere or her disease makes the situation spiral into paranoia and delusions. My children need a parent who is calm and respectful. They deserve that Mom.
Then there is me. I swallow so much anger and frustration that I feel as if I will burst. When people look at me, do they see the make up or do they see the person inside who is screaming to be let out?
I know these feelings are normal but they are not acceptable to me. I am not an angry person. Strike that. I am an angry person but I don't want to be. In the past when I have made a discovery about myself that I found unacceptable I have worked hard to change it. When a job brought out a negative aspect of my personality, I walked away from the job. I cannot walk away from this. And, I guess that is the lesson. I need to deal with who I have allowed myself to become, who I am. And I need to decide whether to change what I cannot accept or continue wearing the make-up.
I try so hard to keep an even mood. There is so much anger and negativity in this house that I figure if I can stay positive and in a light mood that things will go more smoothly. Mom needs an even, calm atmosphere or her disease makes the situation spiral into paranoia and delusions. My children need a parent who is calm and respectful. They deserve that Mom.
Then there is me. I swallow so much anger and frustration that I feel as if I will burst. When people look at me, do they see the make up or do they see the person inside who is screaming to be let out?
I know these feelings are normal but they are not acceptable to me. I am not an angry person. Strike that. I am an angry person but I don't want to be. In the past when I have made a discovery about myself that I found unacceptable I have worked hard to change it. When a job brought out a negative aspect of my personality, I walked away from the job. I cannot walk away from this. And, I guess that is the lesson. I need to deal with who I have allowed myself to become, who I am. And I need to decide whether to change what I cannot accept or continue wearing the make-up.
Friday, December 7, 2012
Mass murders and tampons...
Today I discovered two things:
#1 Cookies mixed into the canister of Tide Pods:
#2 Cookies mixed into the jar of peanut butter:
And while I find these discoveries disconcerting, I also see the humor in them. Especially the murder suicide that the hippopotamus apparently masterminded. I would have loved it just that much more if it had been the work of the elephant.
But, these finds reminded me of the many treasures that I didn't think far enough ahead to document. I never would have thought those times would be the good old days of this journey. So, I will try to describe some of the discoveries... and, believe me when I tell you there is at least one that you will be glad that I did not capture for all eternity in a photograph.
Early on, the disease showed itself in the normal memory problems but it progressed to things like putting dishes away dirty. I would try to find the humor while grabbing a dirty utensil from the drawer and asking, "Hey, does anybody know when we had spaghetti last? I don't know whether this spoon is ok to use."
I used to buy a lot of items in bulk. Used to because I came home from work to find 25 pounds of cat food and a large box of Tide combined into a big container. When I asked Mom why she did it, her response was because it saved space. The time she combined the cat food and the cat litter, I actually thought was kind of clever. It really would be nice if the cats saved me a step and just left already formed clumps.
Or the time that she emptied every package of noodles, macaroni and rice into one large container. It might have made an interesting dish if she hadn't added the instant mashed potatoes to the mix.
I have to admit that I did not see the humor when she took the lid off of every single item in the cupboards. I mean every item. To this day, I still have not found her stash of lids.
Probably my favorite, and the one I am most thankful for no pictures being taken, was the souvenir she brought home from one of her walking trips. I drove into the driveway and there, impaled on the wrought iron plant hanger, was a pink, used tampon applicator. I wondered what that represented in her mind. Was it to serve as a warning like a head on a pike? Or just a pretty bauble that she enjoyed seeing? Whatever the reasoning it made me laugh long and hard. Especially, when I wondered how many people saw it before I did.
The funny stuff is becoming more rare with each passing day. And knowing what is coming with this disease makes these times that much more special. So, I will enjoy the mass murders and tampon impalements while they last. And I will laugh until I cry.
#1 Cookies mixed into the canister of Tide Pods:
#2 Cookies mixed into the jar of peanut butter:
And while I find these discoveries disconcerting, I also see the humor in them. Especially the murder suicide that the hippopotamus apparently masterminded. I would have loved it just that much more if it had been the work of the elephant.
But, these finds reminded me of the many treasures that I didn't think far enough ahead to document. I never would have thought those times would be the good old days of this journey. So, I will try to describe some of the discoveries... and, believe me when I tell you there is at least one that you will be glad that I did not capture for all eternity in a photograph.
Early on, the disease showed itself in the normal memory problems but it progressed to things like putting dishes away dirty. I would try to find the humor while grabbing a dirty utensil from the drawer and asking, "Hey, does anybody know when we had spaghetti last? I don't know whether this spoon is ok to use."
I used to buy a lot of items in bulk. Used to because I came home from work to find 25 pounds of cat food and a large box of Tide combined into a big container. When I asked Mom why she did it, her response was because it saved space. The time she combined the cat food and the cat litter, I actually thought was kind of clever. It really would be nice if the cats saved me a step and just left already formed clumps.
Or the time that she emptied every package of noodles, macaroni and rice into one large container. It might have made an interesting dish if she hadn't added the instant mashed potatoes to the mix.
I have to admit that I did not see the humor when she took the lid off of every single item in the cupboards. I mean every item. To this day, I still have not found her stash of lids.
Probably my favorite, and the one I am most thankful for no pictures being taken, was the souvenir she brought home from one of her walking trips. I drove into the driveway and there, impaled on the wrought iron plant hanger, was a pink, used tampon applicator. I wondered what that represented in her mind. Was it to serve as a warning like a head on a pike? Or just a pretty bauble that she enjoyed seeing? Whatever the reasoning it made me laugh long and hard. Especially, when I wondered how many people saw it before I did.
The funny stuff is becoming more rare with each passing day. And knowing what is coming with this disease makes these times that much more special. So, I will enjoy the mass murders and tampon impalements while they last. And I will laugh until I cry.
Thursday, November 29, 2012
Random thoughts...
A few random thoughts today:
I am fighting this sadness for all that I am worth. I want to look forward to my days again. I feel guilt each time I look at my mother and realize that I am looking forward to her being gone. Yes, I want her to find peace. I want that so much for her. But, selfishly, I want it more for my family. And, no matter how normal that feeling is, it isn't something that is easy to accept.
I yearn to be active once again. So much of my life has to be sedate and non-exciting just to keep Mom in a non-agitated state. Today I tried to hang new curtains. I became so frustrated with her that I stopped and furiously returned to the love seat and my laptop. The love seat that will never recover from my ever growing butt's pressure and the laptop that has become my outlet to sanity.
Each entry I make here is about my perception of this disease and how it effects my life. I have been kicking around the idea of writing an entry from Mom's point of view. And that is as far as I can get. This disease is so random that I am not sure Mom has a perspective. Maybe I need to explore her possible feelings towards us... how random and erratic we must seem to her. I need to think on this one.
Mom's hoarding has become worse. She goes to the kitchen a dozen times an hour to find anything that she can fit into her pocket. She walks by me with pockets bulging with her treasures and then scurries to hide them in her room. Today's "theft du jour" was tea bags. But, she was picky. She only wanted the Lipton.
Mom likes McDonald's cheeseburgers. Thankfully. Sometimes, when she is disoriented and agitated, the only thing that calms her is a ride (again a toddler). We usually end up at Walmart, which is ironic because I dislike Walmart. But, she loves pushing a cart and the anonymous bustle of it all seems to calm her. So, we wander a bit and stop at McDonald's on our way out. And that damned cheeseburger is the only thing that I have put in front of her for the past year that isn't too big, too small, too hot, too cold, too salty, too whatever. She eats it and has no comment. And that is high praise these days.
I am fighting this sadness for all that I am worth. I want to look forward to my days again. I feel guilt each time I look at my mother and realize that I am looking forward to her being gone. Yes, I want her to find peace. I want that so much for her. But, selfishly, I want it more for my family. And, no matter how normal that feeling is, it isn't something that is easy to accept.
I yearn to be active once again. So much of my life has to be sedate and non-exciting just to keep Mom in a non-agitated state. Today I tried to hang new curtains. I became so frustrated with her that I stopped and furiously returned to the love seat and my laptop. The love seat that will never recover from my ever growing butt's pressure and the laptop that has become my outlet to sanity.
Each entry I make here is about my perception of this disease and how it effects my life. I have been kicking around the idea of writing an entry from Mom's point of view. And that is as far as I can get. This disease is so random that I am not sure Mom has a perspective. Maybe I need to explore her possible feelings towards us... how random and erratic we must seem to her. I need to think on this one.
Mom's hoarding has become worse. She goes to the kitchen a dozen times an hour to find anything that she can fit into her pocket. She walks by me with pockets bulging with her treasures and then scurries to hide them in her room. Today's "theft du jour" was tea bags. But, she was picky. She only wanted the Lipton.
Mom likes McDonald's cheeseburgers. Thankfully. Sometimes, when she is disoriented and agitated, the only thing that calms her is a ride (again a toddler). We usually end up at Walmart, which is ironic because I dislike Walmart. But, she loves pushing a cart and the anonymous bustle of it all seems to calm her. So, we wander a bit and stop at McDonald's on our way out. And that damned cheeseburger is the only thing that I have put in front of her for the past year that isn't too big, too small, too hot, too cold, too salty, too whatever. She eats it and has no comment. And that is high praise these days.
Monday, November 26, 2012
A different set of memories...
I have always felt sadness when I hear of people who do nothing more than tolerate the month of December. They find no joy in the season and definitely no peace. For whatever reasons, the Christmas season has become something they get through rather than embrace. But these years as Mom's caretaker have given me a new perspective on
how hard the season can be for many.
I have always loved the season. I cherish the opportunity to celebrate the birth of my Savior. And I love the traditions that the holiday entails, regardless of their origins. Christmas holds many happy and precious memories for me. And, I suppose that is what makes this situation difficult for me. I know that my daughters won't have the memories of Christmas that I so want to give them. We have been forced to adapt our celebrations of joy to small windows of time and compromises. I want them to remember the bustle of preparations, the anticipation of the holiday and the joy of Christ's birth. I understand that I am leaving them with a different set of memories, I just wish they could be happier.
I have always loved the season. I cherish the opportunity to celebrate the birth of my Savior. And I love the traditions that the holiday entails, regardless of their origins. Christmas holds many happy and precious memories for me. And, I suppose that is what makes this situation difficult for me. I know that my daughters won't have the memories of Christmas that I so want to give them. We have been forced to adapt our celebrations of joy to small windows of time and compromises. I want them to remember the bustle of preparations, the anticipation of the holiday and the joy of Christ's birth. I understand that I am leaving them with a different set of memories, I just wish they could be happier.
Tuesday, November 20, 2012
But for the Grace of God...
I sat down today to tell you all how sorry I was feeling for myself after spending the day at the County offices where I was trying to apply to be Mom's paid caretaker. Two sentences were written before my perspective was changed. Yes, I still have a wall to climb and hoops to jump through, but I have a strong back and able legs. Here is the original post that was supposed to be a "woe is me" entry:
One of the most difficult things to accept about this entire situation is the fact that I have become one of the infamous 47% who need help. And it is killing my pride. I have never been one to begrudge or even judge those that need help. Each time I have thought of those less fortunate, I think, "There but for the Grace of God go I".
But, I have come to think of that phrase in a new way. Because if God's Grace saved me from falling on hard times, then it must be His lack of Grace that allowed it now. And I cannot accept that reasoning. Even in these difficult times I am still receiving His Blessings. Every minute of every day. So, I will swallow my pride, learn humility, and walk on with hope in my step and praise in my heart.
One of the most difficult things to accept about this entire situation is the fact that I have become one of the infamous 47% who need help. And it is killing my pride. I have never been one to begrudge or even judge those that need help. Each time I have thought of those less fortunate, I think, "There but for the Grace of God go I".
But, I have come to think of that phrase in a new way. Because if God's Grace saved me from falling on hard times, then it must be His lack of Grace that allowed it now. And I cannot accept that reasoning. Even in these difficult times I am still receiving His Blessings. Every minute of every day. So, I will swallow my pride, learn humility, and walk on with hope in my step and praise in my heart.
Friday, November 16, 2012
Mom's conversation...
Mom's conversation while she is eating her lunch, a big plate of spaghetti with garlic bread. It might be hard for some of you to read because it is so random. But, this is her life. And this is her reality. The entire conversation took about 10 minutes.
It was sure nice of that man to fix me food before the police get here.
I wish that thing would level out so I could see the driveway.
I don't want anybody hurt.
I wonder if I could slip out before they get here.
I haven't eaten in two days.
These socks are taking the air out of my thumbs.
That guy sure hit me hard that last time.
I need to get out of here.
I'm sure glad I'm alone.
Don't hurt them.
What time are the police supposed to be here?
It's 11:00.
This is good. I like it.
I'm glad no one is here to listen to me.
Are you going to be leaving soon?
I'm hungry and they haven't fed me in 3 days.
That man sure is nice. Maybe he'll take me get something to eat.
Maybe that cat will take me for some coffee.
I'm scared. I didn't mean to tear the bread.
I sure could go for a rest right now.
THAT'S IT! I'LL SHOW YOU!!
Wow. Those trees are really moving. OH! Did you see that?
Look at that! There's papers falling off of those trees.
I wish someone would feed me.
Why would anyone do that?
Do you want me to put my empty plate on the counter?
Oh my! There's a big dog on the book case!
They stole my purse again.
And now I'm the bad guy.
I'd like to take a walk.
I wish I could go down and have a cup of coffee.
I guess not. What do you expect from people who won't give you a tissue.
It was sure nice of that man to fix me food before the police get here.
I wish that thing would level out so I could see the driveway.
I don't want anybody hurt.
I wonder if I could slip out before they get here.
I haven't eaten in two days.
These socks are taking the air out of my thumbs.
That guy sure hit me hard that last time.
I need to get out of here.
I'm sure glad I'm alone.
Don't hurt them.
What time are the police supposed to be here?
It's 11:00.
This is good. I like it.
I'm glad no one is here to listen to me.
Are you going to be leaving soon?
I'm hungry and they haven't fed me in 3 days.
That man sure is nice. Maybe he'll take me get something to eat.
Maybe that cat will take me for some coffee.
I'm scared. I didn't mean to tear the bread.
I sure could go for a rest right now.
THAT'S IT! I'LL SHOW YOU!!
Wow. Those trees are really moving. OH! Did you see that?
Look at that! There's papers falling off of those trees.
I wish someone would feed me.
Why would anyone do that?
Do you want me to put my empty plate on the counter?
Oh my! There's a big dog on the book case!
They stole my purse again.
And now I'm the bad guy.
I'd like to take a walk.
I wish I could go down and have a cup of coffee.
I guess not. What do you expect from people who won't give you a tissue.
Thursday, November 15, 2012
I am thankful...
I went 3 weeks without any outside help with Mom. I had reached the point that it was harder to deal with the hurt and disappointment of my brothers' lack of help than it was to take care of Mom. I had a letter written to both of my brothers saying that I was done being a part of the family. I would rather do it alone than to have my needs and the needs of my daughters be rejected and forgotten.
I went through quite a mental dilemma as to whether or not I should even take her to my brother for the first time in 3 weeks. But my desperate need to recharge outweighed my delivering of the letters. I was not in the best mental condition to deal with the confrontation that would result.. So, I took Mom and did my normal Tuesday tasks.
When my brother dropped Mom off late in the afternoon he and I talked. Still not being mentally ready for the confrontation, I allowed the conversation to remain on a superficial level. And the strangest thing happened. He looked at me and said, "Nancy, I know that you feel abandoned by us. But, I can only speak for me. What can I do to make this situation better for you and the girls?" And, with that, a weight was lifted off of my shoulders.
That was 2 days ago and I have had more true help in that time than I have had in years. And I am thankful for it. But more importantly, I am thankful that I still have my family. I am not alone.
I went through quite a mental dilemma as to whether or not I should even take her to my brother for the first time in 3 weeks. But my desperate need to recharge outweighed my delivering of the letters. I was not in the best mental condition to deal with the confrontation that would result.. So, I took Mom and did my normal Tuesday tasks.
When my brother dropped Mom off late in the afternoon he and I talked. Still not being mentally ready for the confrontation, I allowed the conversation to remain on a superficial level. And the strangest thing happened. He looked at me and said, "Nancy, I know that you feel abandoned by us. But, I can only speak for me. What can I do to make this situation better for you and the girls?" And, with that, a weight was lifted off of my shoulders.
That was 2 days ago and I have had more true help in that time than I have had in years. And I am thankful for it. But more importantly, I am thankful that I still have my family. I am not alone.
Tuesday, November 6, 2012
Extremes...
It has been a rough couple of days.
My life has become a life of extremes. Mom is either very calm and placid or she is agitated and violent. The problem lies in the quickness that she shifts between the extremes. I cannot adjust quickly enough to encourage one while defending myself from the other. She is living in a very delusional state and, since I am not privy to her thoughts, the simplest wrong answer sets her off.
Today it was the introduction of a new pair of pants. Her reactions varied from anger that she didn't like the pants, to accusations that I had stolen the pants, to denial that she stole the pants, to fear that she was going to lose her job because the pants were the wrong color, to gratitude that I bought her new pants, to violence that I had no right getting into her stuff, to accusations that "that man" was going to kill me for stealing the pants, to can we go for coffee now? This, and various degrees of each reaction, all occurred in a matter of an hour. And were replayed for 2 more.
How can I keep up? How can I remain calm enough to prevent the escalation of the situation when she uses violence and then has no recollection of it? I am not ready to make nice. How can I answer a simple question correctly? How can I stay sane?
I know that each day that I have any semblance of normalcy with her is rare. I know that this disease only becomes worse. I know that the world of medicine can only do so much for this heinous disease. And I know that we are probably past that point. I have to face the fact that I will soon have to make a more permanent decision. For my sanity, for the sake of my family and for her own safety.
My life has become a life of extremes. Mom is either very calm and placid or she is agitated and violent. The problem lies in the quickness that she shifts between the extremes. I cannot adjust quickly enough to encourage one while defending myself from the other. She is living in a very delusional state and, since I am not privy to her thoughts, the simplest wrong answer sets her off.
Today it was the introduction of a new pair of pants. Her reactions varied from anger that she didn't like the pants, to accusations that I had stolen the pants, to denial that she stole the pants, to fear that she was going to lose her job because the pants were the wrong color, to gratitude that I bought her new pants, to violence that I had no right getting into her stuff, to accusations that "that man" was going to kill me for stealing the pants, to can we go for coffee now? This, and various degrees of each reaction, all occurred in a matter of an hour. And were replayed for 2 more.
How can I keep up? How can I remain calm enough to prevent the escalation of the situation when she uses violence and then has no recollection of it? I am not ready to make nice. How can I answer a simple question correctly? How can I stay sane?
I know that each day that I have any semblance of normalcy with her is rare. I know that this disease only becomes worse. I know that the world of medicine can only do so much for this heinous disease. And I know that we are probably past that point. I have to face the fact that I will soon have to make a more permanent decision. For my sanity, for the sake of my family and for her own safety.
Monday, November 5, 2012
I miss me...
I am going crazy. I am so very lonely. My friends have become the words written by people who care about me. I need more than words but I have no way to find more. I pray for help and it does not come. Apparently it has more important things to do. I look for answers but the hoops are too high for me to jump through. I miss me. My brain has short circuited and simple things are more than I can comprehend. I just don't care anymore. I have nothing left to give. I wonder what I did to deserve this.
Monday, October 29, 2012
Guess what? I'm still hot...
As you can probably tell by my lack of posts, we are status quo right now. We're still going crazy on a daily basis but there is nothing new in that.
The only thing that has changed is the weather. We have transitioned from Mom being comfortable while the rest of us swelter (without air conditioners being turned on) to Mom freezing while the rest of us swelter (with the heat being cranked up). Add my hot flashes into the mix and we are all having a lovely time. Care to join us?
The only thing that has changed is the weather. We have transitioned from Mom being comfortable while the rest of us swelter (without air conditioners being turned on) to Mom freezing while the rest of us swelter (with the heat being cranked up). Add my hot flashes into the mix and we are all having a lovely time. Care to join us?
Thursday, October 25, 2012
Regularly scheduled insanity...
I know you all are missing my regular updates of the hit daytime drama Just a Moment in Time. So, while I negotiate my way through a whacky medical system trying to get Mom into the Adult Day Care... I give you your choice of Saturday Night Live skits that represent the latest episodes of this journey.
The Whiners OR Debbie Downer
http://bit.ly/SlNkQA http://youtu.be/yqcrg-ObwnU
We will soon return to regularly scheduled insanity.
The Whiners OR Debbie Downer
http://bit.ly/SlNkQA http://youtu.be/yqcrg-ObwnU
We will soon return to regularly scheduled insanity.
Sunday, October 21, 2012
No, but thanks...
I like helping people as much as the next person. But, when my mother sticks her head into my shower and asks, "Is there anything I can help with?" I say that is over the line of normal helptitudism.
Tuesday, October 16, 2012
Answered prayers...
We received some news today that brings me hope. I was told of an Adult Day Care in the area that might be able to take Mom for a few hours a week. So, today Kylie and I stopped by to get some information to see if Mom could be put on the waiting list. Long story, short... there is no waiting list! It is a just a matter of getting a referral, going through the evaluation and we are there.
This place was so kind and accommodating. They immediately took us on a tour and answered questions. They have meals, activities, medical personnel on staff, exercise classes, therapy, counseling... They even have pick up and delivery! They do everything I do and more. I am excited to think of what this means for my family, but I am equally excited for what this can mean for Mom. I think she will be so happy there. I literally walked out of there with tears in my eyes. I am so thankful for this opportunity.
This place was so kind and accommodating. They immediately took us on a tour and answered questions. They have meals, activities, medical personnel on staff, exercise classes, therapy, counseling... They even have pick up and delivery! They do everything I do and more. I am excited to think of what this means for my family, but I am equally excited for what this can mean for Mom. I think she will be so happy there. I literally walked out of there with tears in my eyes. I am so thankful for this opportunity.
Saturday, October 13, 2012
A little peace...
Mom has always enjoyed music. So, I have been playing different types to see if it calms her. A CD of Elvis did not, and to be honest I was a little relieved. John Denver fared a little better. But, tonight Katie asked if she could bring a TV into the living room so that she could play a movie for her Grandma. Mom was very agitated at the time so I held out little hope that it would make a difference. Katie picked Snow White because she thought that Mom might find it more familiar than more recent movies. I was more than a little surprised when Mom settled down and watched it. She didn't remember seeing it before, but she seemed to enjoy it. The most surprising part was that she commented on the quality of the drawings.
I am left wondering whether she was able to follow the story or whether, like the child that she is resembling, the colors and movement were comforting. Nothing was asked of her involvement. Following the story line was not a requirement for enjoyment. Whatever the reason, I am thankful that she found peace for even an hour.
I am left wondering whether she was able to follow the story or whether, like the child that she is resembling, the colors and movement were comforting. Nothing was asked of her involvement. Following the story line was not a requirement for enjoyment. Whatever the reason, I am thankful that she found peace for even an hour.
Thursday, October 11, 2012
Welcome to the drama zone...
You know the depth of the love that someone has for you when they ask you to taste their bread to make sure there is no poison in it. I find that so absurd that it is funny. Mom then went into her room, laid down on top of her bed and said that after 3 days of no food she ate something and is waiting for it to "take her". No drama in this house...lol
Wednesday, October 10, 2012
Four letter word...
I hate that I have to watch what I say but I' need to say it anyway.
I hate that I have to protect other people's feelings by swallowing my own.
I hate that my way of expressing myself hurts people.
I hate that I am the source of anyone's worry when they have enough in their own lives.
I hate that people think I am doing something amazing when I am only doing what I have to do.
I hate that this blog has become so negative while I search for something positive.
I hate that I make this about me while my mother is dying.
I hate that this nasty, four letter word is now familiar to me.
I hate this damn disease for everything that it has taken from us.
I hate that I have to protect other people's feelings by swallowing my own.
I hate that my way of expressing myself hurts people.
I hate that I am the source of anyone's worry when they have enough in their own lives.
I hate that people think I am doing something amazing when I am only doing what I have to do.
I hate that this blog has become so negative while I search for something positive.
I hate that I make this about me while my mother is dying.
I hate that this nasty, four letter word is now familiar to me.
I hate this damn disease for everything that it has taken from us.
Tuesday, October 9, 2012
Lullaby...
Stressful evening but I'm currently listening to Mom singing herself to sleep. What song do you think would give her comfort and relax her? Why, yes, a rousing rendition of that Tony Orlando and Dawn classic lullaby Tie a Yellow Ribbon Round the Old Oak Tree would do just that.Monday, October 8, 2012
ATM syndrome...
Mom was once told that she had ATM syndrome... Addicted To Misery. Meaning that she wasn't happy unless she was unhappy. In my opinion, that was probably the most accurate diagnosis that she ever received. But I've always called it her "Woe Is Me" mood. It is her WIM mood that most reminds me of how she was before she got sick. It was always her way to manipulate us and it is still the fastest way to push my buttons.
Long story short is that today I have responded to her demands to eat 5 times in 4 hours. She has chosen to eat all or part of her food on all of those occasions. She is now in her room wailing to God about how mean I am. And that she hasn't even seen food in 3 days.
Yep, I need patience. It turns out that I have a more common form of ATM syndrome.. there's nothing left at the bank after feeding her all day.
Long story short is that today I have responded to her demands to eat 5 times in 4 hours. She has chosen to eat all or part of her food on all of those occasions. She is now in her room wailing to God about how mean I am. And that she hasn't even seen food in 3 days.
Yep, I need patience. It turns out that I have a more common form of ATM syndrome.. there's nothing left at the bank after feeding her all day.
Thursday, October 4, 2012
The great escape...
Last night my oldest daughter and I were up at 2 am preparing for her early morning trip to the airport. We kept the house dark so that we didn't disturb Mom. As we were sitting in the darkened living room, there's Mom's head poking around the corner to see if anyone was up. She didn't see us so she scurried to the kitchen. Kylie followed and watched to see what she was doing. By the glow of a small night light, she watched Mom go to the cupboard and begin rummaging. Her first acquisition was a restaurant sized bottle of garlic powder... but wait!!! She spies the tea bags... not just any tea bags but Lipton tea bags! It is obvious that she has just hit pay dirt! She returns the garlic powder and shoves about 8 tea bags into the pocket of her housecoat. She moves on to another cupboard where she finds our hidden supply of Milk Bone dog biscuits. Dang, I was saving those for a special occasion. But, Mom is thrilled. Could this night get any sweeter? In they go into the housecoat. She scurries back to her room where we hear dresser drawers being opened and closed. I couldn't help but think MacGyver and wondering when she is planning her escape.
Wednesday, October 3, 2012
Final score...
I am beside myself with some frustrated mirth. As you know, a few days ago I kid-proofed all the doors leading outside. As my first line of defense, I put hook and eyes on the top and bottom of both doors leading outside. Everything I read said to put latches out of Mom's line of vision. So, once they were installed and I knew that she couldn't get out, I walked into the kitchen to get a drink of water. Yes, I was that bold. I immediately heard some rattling, so, I scurry back to the living room in time watch her reach up to undo the top latch while simultaneously unhooking the bottom latch with her foot. Dang, but she is good.
For those of you keeping score... Mom 1, Nancy 0.
I was then forced to add those irritating, spinning covers to the knobs on the doors. Lucky me, when she is agitated and wanting to get away? The knobs that I can't maneuver without a great deal of trouble turn easily in her 78 year old hands.
And Mom pulls ahead with another point... Mom 2, Nancy 0.
But , the truly funny part is that when she is calm and just wants to get some fresh air? Then the blasted things don't work for her and I literally hear hours of griping and requests to be shown how to open the door.
Final score... Mom 3, Nancy 0. Well played, Mom, well played.
For those of you keeping score... Mom 1, Nancy 0.
I was then forced to add those irritating, spinning covers to the knobs on the doors. Lucky me, when she is agitated and wanting to get away? The knobs that I can't maneuver without a great deal of trouble turn easily in her 78 year old hands.
And Mom pulls ahead with another point... Mom 2, Nancy 0.
But , the truly funny part is that when she is calm and just wants to get some fresh air? Then the blasted things don't work for her and I literally hear hours of griping and requests to be shown how to open the door.
Final score... Mom 3, Nancy 0. Well played, Mom, well played.
Tuesday, October 2, 2012
To my family and friends...
To my family and friends:
I just want to say thank you for your support. I read all of your messages but I just can't respond right now. I know many of you are praying for me and my family, I am grateful and I love you for it. At this point, I think prayer will probably be the only thing that gets us through this. I just want you to know that I am taking a break for a day or two. I won't be on Facebook (I say that now...lol). I just need to regroup and search for guidance. And, please, just remember that it truly is a moment in time and we will be ok. Nancy
I just want to say thank you for your support. I read all of your messages but I just can't respond right now. I know many of you are praying for me and my family, I am grateful and I love you for it. At this point, I think prayer will probably be the only thing that gets us through this. I just want you to know that I am taking a break for a day or two. I won't be on Facebook (I say that now...lol). I just need to regroup and search for guidance. And, please, just remember that it truly is a moment in time and we will be ok. Nancy
Monday, October 1, 2012
Absence of faith...
How do I do this? I am flipping going crazy. I don't know how to
be pushed while being pulled, praised while being cursed, threatened by
a hand raised in anger at me while the same hand extends to me
for help. All of these things occur, what seemingly feels like,
non-stop. But my failing faith is what is killing me. I thought I had a
solid relationship with God and a strong faith. But each day I am
drifting further and further away. After each nasty and vile word that
she spews at me she says, "God Bless You" in a calm and soothing way.
And each day and most of the night I hear her prayers. I am being bombarded with her never ending litanies of begging Him for mercy, begging Him for mercy and the answer is always no.
This is all a bad dream. And I can't wake up. In the dream I am showing up for class and taking notes. I am trying to hear what the Professor is saying to me. But, each day I am failing the test. And it's as if the test never ends.
My friends tell me to pray. To read the Bible. But I can't talk to Him. I feel He has turned His back on me. I know He hasn't and that I am just not listening. But I am being bombarded to the point that I cannot hear anything but HER. And each time that she has said these hateful and vile things, and I am at the end of all that I have, she turns to me and says, "God Bless You!" As if it is a curse and a blessing all rolled into one sentence. But the worst, the absolute worst for me, is in that moment when I hear her say those words, my immediate reaction is, "Maybe someday."
In my calm moments when the house is quiet, I recognize that I have many, many blessings. And I still find moments in my day when I offer up thanks for the small blessings that present themselves. And I still ask for his guidance and His forgiveness. But, when I am dealing with Mom, I doubt Him and I am angry with Him. I am finding that the doubt is spilling over more and more into my quiet time.
I hate Alzheimer's for taking my mother, my girls' childhoods, my family, my financial security and my way of life. But I despise it for taking my faith.
This is all a bad dream. And I can't wake up. In the dream I am showing up for class and taking notes. I am trying to hear what the Professor is saying to me. But, each day I am failing the test. And it's as if the test never ends.
My friends tell me to pray. To read the Bible. But I can't talk to Him. I feel He has turned His back on me. I know He hasn't and that I am just not listening. But I am being bombarded to the point that I cannot hear anything but HER. And each time that she has said these hateful and vile things, and I am at the end of all that I have, she turns to me and says, "God Bless You!" As if it is a curse and a blessing all rolled into one sentence. But the worst, the absolute worst for me, is in that moment when I hear her say those words, my immediate reaction is, "Maybe someday."
In my calm moments when the house is quiet, I recognize that I have many, many blessings. And I still find moments in my day when I offer up thanks for the small blessings that present themselves. And I still ask for his guidance and His forgiveness. But, when I am dealing with Mom, I doubt Him and I am angry with Him. I am finding that the doubt is spilling over more and more into my quiet time.
I hate Alzheimer's for taking my mother, my girls' childhoods, my family, my financial security and my way of life. But I despise it for taking my faith.
Sunday, September 30, 2012
Once a woman...
I'm paraphrasing a quote a friend shared with me when he found out I was being the caretaker to my mom, "Once a woman, twice a child".
Saturday, September 29, 2012
How do I...
How do I answer questions that have no answers?
How do I calm fears that aren't rational?
How do I get someone to trust me who doesn't know who I am?
How do I calm someone who can't accept comfort?
How do I bring peace to a mind that is slipping deeper into turmoil?
How do I keep her safe when she is her own danger?
How do I take away the fear of something that happened 70 years ago?
How do I separate myself from the anger that is bombarding me?
How do I help someone whose reality is not real?
How do I accept that this is my reality?
How do I calm fears that aren't rational?
How do I get someone to trust me who doesn't know who I am?
How do I calm someone who can't accept comfort?
How do I bring peace to a mind that is slipping deeper into turmoil?
How do I keep her safe when she is her own danger?
How do I take away the fear of something that happened 70 years ago?
How do I separate myself from the anger that is bombarding me?
How do I help someone whose reality is not real?
How do I accept that this is my reality?
Friday, September 28, 2012
A lost soul...
It's almost 2 am and I have to be up in 4 hours. Yet, here I am creating an entry for my blog. But, I have to keep busy. You see Mom is wandering and sleep will be a long time coming. For both of us.
Let me start at the beginning. I started sleeping in the living room because it is there that I will have the best chance of keeping her safe. She has to go by me to get anywhere that she becomes a danger to herself. She has wandered before but never this late and never after she has been asleep. I've been expecting this new symptom, but not with any amount of excitement. It is actually very quiet, almost stealthlike.
Back to the wandering... I was asleep and heard a very quiet movement in the dining room. So, I woke up and watched Mom pace from kitchen to dining room, to front door, to bathroom and back around again. She was fully dressed and ready to start her day. I stayed quiet and just watched for over an hour. She didn't attempt to leave, but I am sure that is coming. After awhile she realized that I was awake and treated me to a play by play of her actions. "I am going to the kitchen to get a drink of water. I am sitting at the table and looking outside. I am drinking my water now. I am driving my daughter crazy now (okay that one was mine) "
So, what causes this? I'm guessing she is searching for something familiar. She is looking for the home that is buried in her mis-firing brain. She wants to find her family. She wants to find that time when things made sense. She has no true concept of time anymore, so, 2 am feels like noon, feels like dinnertime. I wish I could reach into her brain and soothe it. Until I find a way to do that I will lie here on this uncomforable couch and listen for the quiet sounds of a lost soul. And I will blog at 2 am.
Let me start at the beginning. I started sleeping in the living room because it is there that I will have the best chance of keeping her safe. She has to go by me to get anywhere that she becomes a danger to herself. She has wandered before but never this late and never after she has been asleep. I've been expecting this new symptom, but not with any amount of excitement. It is actually very quiet, almost stealthlike.
Back to the wandering... I was asleep and heard a very quiet movement in the dining room. So, I woke up and watched Mom pace from kitchen to dining room, to front door, to bathroom and back around again. She was fully dressed and ready to start her day. I stayed quiet and just watched for over an hour. She didn't attempt to leave, but I am sure that is coming. After awhile she realized that I was awake and treated me to a play by play of her actions. "I am going to the kitchen to get a drink of water. I am sitting at the table and looking outside. I am drinking my water now. I am driving my daughter crazy now (okay that one was mine) "
So, what causes this? I'm guessing she is searching for something familiar. She is looking for the home that is buried in her mis-firing brain. She wants to find her family. She wants to find that time when things made sense. She has no true concept of time anymore, so, 2 am feels like noon, feels like dinnertime. I wish I could reach into her brain and soothe it. Until I find a way to do that I will lie here on this uncomforable couch and listen for the quiet sounds of a lost soul. And I will blog at 2 am.
Tuesday, September 25, 2012
Perspective...
This last weekend I spent more time at the ER with my oldest daughter than I ever want to spend there again. Without explaining her medical history for the entire world to read, I will just say that she was there for a serious issue and was experiencing severe pain.
While we were there my 2 brothers were forced to stay with our Mom and be her caretakers for 6 hours. The situation had some interesting results...
First, both of my brothers were forced to see what my family lives on a daily basis. And, remarkably, they finally understood They got it. They understood how bad it has become. They are now considering solutions. That in itself is amazing.
Second, the time that I focused on my daughter was a bittersweet respite from our everyday life. Once the medicines that she was given were allowed to start to work, she and I had a very peaceful evening. I wasn't on edge, listening for every sound from the nest room, waiting to defend, protect, cajole or pacify at a moment's notice. And she received undivided attention from me, attention that she hasn't had in years... attention that every child deserves. In a warped way, it was any enjoyable evening.
So, what was a truly horrible time, ended up with some positive results. Perspective is a remarkable gift.
While we were there my 2 brothers were forced to stay with our Mom and be her caretakers for 6 hours. The situation had some interesting results...
First, both of my brothers were forced to see what my family lives on a daily basis. And, remarkably, they finally understood They got it. They understood how bad it has become. They are now considering solutions. That in itself is amazing.
Second, the time that I focused on my daughter was a bittersweet respite from our everyday life. Once the medicines that she was given were allowed to start to work, she and I had a very peaceful evening. I wasn't on edge, listening for every sound from the nest room, waiting to defend, protect, cajole or pacify at a moment's notice. And she received undivided attention from me, attention that she hasn't had in years... attention that every child deserves. In a warped way, it was any enjoyable evening.
So, what was a truly horrible time, ended up with some positive results. Perspective is a remarkable gift.
Saturday, September 22, 2012
Words of comfort...
Each night as Mom unwinds for the day she says her prayers. Loudly. Most nights the pain of her pleas is heartbreaking to hear. Sometimes, like tonight, they are bittersweet. She prays the way we all should pray. She talks with Him and listens for the answers. And, by her responses, she sometimes gets them.
The other night I sat in the chair beside her bed and felt like I was listening to one side of a phone call between two old friends. Mom chatted with Him. She listened and responded to His answers. Occasionally, she would laugh at something funny He said. And some of the discussion was about me. Several times I heard responses like, "I know! That's what I told her! But, shhhh, she's sitting right here." and then laughter.
I believe that He is talking to her and comforting her. I wonder why she isn't able to hear Him every night. Maybe she is still in our world enough that she doesn't allow herself to hear His answer. How many times have I prayed and been so busy talking that I can't hear His words.
But, there is one thing that I do know. My faith is being tested now more than ever before. And His conversations with Mom comfort her and me.
The other night I sat in the chair beside her bed and felt like I was listening to one side of a phone call between two old friends. Mom chatted with Him. She listened and responded to His answers. Occasionally, she would laugh at something funny He said. And some of the discussion was about me. Several times I heard responses like, "I know! That's what I told her! But, shhhh, she's sitting right here." and then laughter.
I believe that He is talking to her and comforting her. I wonder why she isn't able to hear Him every night. Maybe she is still in our world enough that she doesn't allow herself to hear His answer. How many times have I prayed and been so busy talking that I can't hear His words.
But, there is one thing that I do know. My faith is being tested now more than ever before. And His conversations with Mom comfort her and me.
No left turn...
Recently, I wrote about taking a physical step to the left to remind myself to step into my mother's world. For me, it was also a reminder to make the effort to find patience for her and her illness. Today, I am finding all kinds of things to my right... but the other direction? There is nothing left.
Sunday, September 16, 2012
The destruction of a family...
The effects of caring for a terminally ill family member can be devastating to any family. You truly discover the weak links in what was an otherwise strong unit. My family remained strong after the early deaths of two brothers and the horrific cancer death of my father. I was proud of them all while settling my grandfather's estate... there was no greed or hard feelings about any of his possessions as they were given to those who wanted them.
But, this. This heinous disease that has taken so much from my mother has also taken my once strong family. The hard feelings and anger at my remaining brothers' inconsistent and often non-existent offers of help are hard to be forgiven, but will be. It will be much harder to forgive the fact that they have been a part of my family but I am no longer a part of theirs.
A few years ago my oldest nephew was married. I was originally invited to the ceremony but was uninvited because they were afraid that I would bring Mom. I was not even offered the option of attending without Mom. Today was my other nephew's wedding. I was told of the ceremony, shown the invitation and had the details of the upcoming nuptials described in detail. But, I wasn't considered worthy of an invitation. I actually feel better about this one because I wasn't given some insulting reason for the omission. It is truly ironic that I feel like the hired help, yet, at the same time I am not being paid and being forced into bankruptcy.
It is both heart-wrenching and freeing to realize that you are not an important part of the family which you have always cherished. I would like to walk away from the entire situation and tell them both to suck eggs. But, those times when their schedules allow a few hours to be a son to their mother and a brother to me are the only breaks that I get. I feel like a hypocrite each time that I smile and say the right words when they share the stories of their families' happy moments.
I truly wish my nephews and my brothers much happiness. I only dream that they could wish the same for my daughters' and mine.
But, this. This heinous disease that has taken so much from my mother has also taken my once strong family. The hard feelings and anger at my remaining brothers' inconsistent and often non-existent offers of help are hard to be forgiven, but will be. It will be much harder to forgive the fact that they have been a part of my family but I am no longer a part of theirs.
A few years ago my oldest nephew was married. I was originally invited to the ceremony but was uninvited because they were afraid that I would bring Mom. I was not even offered the option of attending without Mom. Today was my other nephew's wedding. I was told of the ceremony, shown the invitation and had the details of the upcoming nuptials described in detail. But, I wasn't considered worthy of an invitation. I actually feel better about this one because I wasn't given some insulting reason for the omission. It is truly ironic that I feel like the hired help, yet, at the same time I am not being paid and being forced into bankruptcy.
It is both heart-wrenching and freeing to realize that you are not an important part of the family which you have always cherished. I would like to walk away from the entire situation and tell them both to suck eggs. But, those times when their schedules allow a few hours to be a son to their mother and a brother to me are the only breaks that I get. I feel like a hypocrite each time that I smile and say the right words when they share the stories of their families' happy moments.
I truly wish my nephews and my brothers much happiness. I only dream that they could wish the same for my daughters' and mine.
Saturday, September 15, 2012
Be careful what you ask...
Each day on my Facebook page I ask a Fun Question of the Day. In today's question I innocently asked if anyone believed in ghosts and whether they had any experiences with one. People shared some truly interesting and, for me, startling experiences. My own answer was that I believe that they exist but that I had never had any personal experiences.
That all changed tonight. The house has settled. Mom has been relatively quiet for a few hours. The girls and pets are asleep. I am lying on the couch having a little "me" time on the computer. I have a small fan next to my head keeping me cool and drowning out the small sounds of the night. The rest of the house is dark except for the low glow of the bathroom light. The only light in the living room is the bright glare of my laptop. Anyone who has used one in a dark room knows that there is a total blackout beyond the perimeter of the screen.
As I am sitting there I think I hear the sound of change jingling in a pocket. Or, possibly after the ghost stories that I read today, I am hearing chains rattling? I talk myself out of it. There are probably some kids walking by and I hear them through the open window. Back to the glare of the laptop. Wait, there it is again. And it is getting closer. I stop what I am doing and I listen. All is quiet. I tip the laptop towards the hall door to see if I am hearing Mom moving around. Nope. She's not there. I am just a little rattled from the stories. My imagination is running wild.
Suddenly to my right there is a pale, glowing face bending down towards me! An eerie, vacuous, unearthly face with empty eyes! I scream as it gets closer to me. Ok, scream is a mild description, I shriek! My terror does nothing to slow it down. As it moves well within the light of my laptop I realize that Mom looks very ghostlike in laptop light. Her hands are jingling change in the pocket of her housecoat as she calmly says, "I've been asleep and I just wanted you to know that I won't be getting up anytime soon."
That all changed tonight. The house has settled. Mom has been relatively quiet for a few hours. The girls and pets are asleep. I am lying on the couch having a little "me" time on the computer. I have a small fan next to my head keeping me cool and drowning out the small sounds of the night. The rest of the house is dark except for the low glow of the bathroom light. The only light in the living room is the bright glare of my laptop. Anyone who has used one in a dark room knows that there is a total blackout beyond the perimeter of the screen.
As I am sitting there I think I hear the sound of change jingling in a pocket. Or, possibly after the ghost stories that I read today, I am hearing chains rattling? I talk myself out of it. There are probably some kids walking by and I hear them through the open window. Back to the glare of the laptop. Wait, there it is again. And it is getting closer. I stop what I am doing and I listen. All is quiet. I tip the laptop towards the hall door to see if I am hearing Mom moving around. Nope. She's not there. I am just a little rattled from the stories. My imagination is running wild.
Suddenly to my right there is a pale, glowing face bending down towards me! An eerie, vacuous, unearthly face with empty eyes! I scream as it gets closer to me. Ok, scream is a mild description, I shriek! My terror does nothing to slow it down. As it moves well within the light of my laptop I realize that Mom looks very ghostlike in laptop light. Her hands are jingling change in the pocket of her housecoat as she calmly says, "I've been asleep and I just wanted you to know that I won't be getting up anytime soon."
Tuesday, September 11, 2012
Note to self...
Note to self: Run the dishwasher later in the evening. Apparently it looks like an oven to Mom and she wants to constantly open it and "see what's cooking".
Monday, September 10, 2012
Who you are...
Ok, today was not a "moment in time". It was a freaking day in Hell. My positive and loving enlightenment lasted until about 11:00 am. It is now 11:48 pm and I am hearing quiet for the first time today.
The more days that I have like this, the more I believe that the behaviors of an Alzheimer's patient are like a drunk who blames his actions on alcohol. When in reality, it isn't the alcohol at all, it is who they are without their inhibitions or filters. All of these behaviors that I am now seeing in Mom were always there. They are just running free with no filters. She was an intelligent woman who knew that these traits were not acceptable in most situations and that people did not want to be around an angry, unhappy person. So, she filtered them, but they were still there.
I have spoken to other caregivers who have few trying days. For the most part, their family member is kind, sweet and docile throughout the progression of the disease. But, it is my belief that these people were always that way. I do not believe Alzheimer's changes who we truly are... but that it intensifies it and removes our ability to monitor our own actions.
If this is sounding like a harsh judgement on my mother, I don't mean it as such. I love my mom and appreciate her many wonderful traits. But, anyone who knew my mom before knows that she was angry and very unhappy. If I have learned anything through this trying time it is how important it is to truly be kind to those you love. Make it a habit. Make it who you are. Because at some point you might not have a choice.
The more days that I have like this, the more I believe that the behaviors of an Alzheimer's patient are like a drunk who blames his actions on alcohol. When in reality, it isn't the alcohol at all, it is who they are without their inhibitions or filters. All of these behaviors that I am now seeing in Mom were always there. They are just running free with no filters. She was an intelligent woman who knew that these traits were not acceptable in most situations and that people did not want to be around an angry, unhappy person. So, she filtered them, but they were still there.
I have spoken to other caregivers who have few trying days. For the most part, their family member is kind, sweet and docile throughout the progression of the disease. But, it is my belief that these people were always that way. I do not believe Alzheimer's changes who we truly are... but that it intensifies it and removes our ability to monitor our own actions.
If this is sounding like a harsh judgement on my mother, I don't mean it as such. I love my mom and appreciate her many wonderful traits. But, anyone who knew my mom before knows that she was angry and very unhappy. If I have learned anything through this trying time it is how important it is to truly be kind to those you love. Make it a habit. Make it who you are. Because at some point you might not have a choice.
Friday, September 7, 2012
A breaking heart...
I have been diligently trying to remain calm with Mom. As I have stated before, I cannot even imagine how terrifying it must be to recognize no one in your life. And she is at the point in her disease that she does not know who I am. She recognizes me as someone who is familiar and caring, but that is as far as it goes. She does not accept that I am her daughter. In fact, most days she refuses to believe that she is old enough to have children.
And, for the most part, the patience has made a difference in our daily exchanges. She is calmer and much more loving, as am I. She still pushes the buttons that have been primed by a lifetime of her anger and disappointments. But, for the most part, I do not respond.
So, why is it breaking my heart? Was my anger just a defense against feeling her pain? Am I so shallow and selfish that it was easier to hurt than to be hurt? Because listening to her brokenhearted questions about her family forgetting her is crushing. And even knowing that she lives in another reality, it hurts when she talks about her daughter Nancy betraying her and neglecting her. But the most devastating is listening to her cry herself to sleep every night while begging God for help.
And, for the most part, the patience has made a difference in our daily exchanges. She is calmer and much more loving, as am I. She still pushes the buttons that have been primed by a lifetime of her anger and disappointments. But, for the most part, I do not respond.
So, why is it breaking my heart? Was my anger just a defense against feeling her pain? Am I so shallow and selfish that it was easier to hurt than to be hurt? Because listening to her brokenhearted questions about her family forgetting her is crushing. And even knowing that she lives in another reality, it hurts when she talks about her daughter Nancy betraying her and neglecting her. But the most devastating is listening to her cry herself to sleep every night while begging God for help.
Monday, September 3, 2012
In her world...
I just read a blog written by a man who is an Alzheimer's caretaker for his mother. He dealt with questions being repeated over and over until he became frustrated and angry. His answer was to not just remember that his mother's short term memory was gone but to acknowledge that he couldn't change that fact. Instead, he changed his response.
He calls the life that you and I live the Real World and the life his mom lives the Alzheimer's World. When speaking to his mom he literally takes a step to the left before responding. This is his way of reminding himself to enter her Alzheimer's World. By taking a physical step he is able to remember that the Alzheimer's World is an actual, physical place where his mother lives.
Mom lives in Alzheimer's World. Her short term memory is non-existent. It truly breaks my heart watching Mom become frustrated that her parents are late picking her up. Or that her family is waiting for her and she is heart broken that they are worried for her. I cannot imagine how alone it must feel to know absolutely no one around you. What a terrifying and isolating feeling to have. When she repeatedly asks the day of the week, she is not doing it to irritate. She is asking for confirmation that she is still in control of her mind.
I am going to try to remember to enter Alzheimer's World when I am responding to Mom. I probably will forget to take the step to the left before entering. But, I can make the effort. And while making the effort, I can try to respond with more comfort in my voice. Even though she probably does not understand a lot of the words that I am saying, she can understand the comfort and compassion that she can hear in my voice. And I will pray she finds peace in her world.
He calls the life that you and I live the Real World and the life his mom lives the Alzheimer's World. When speaking to his mom he literally takes a step to the left before responding. This is his way of reminding himself to enter her Alzheimer's World. By taking a physical step he is able to remember that the Alzheimer's World is an actual, physical place where his mother lives.
Mom lives in Alzheimer's World. Her short term memory is non-existent. It truly breaks my heart watching Mom become frustrated that her parents are late picking her up. Or that her family is waiting for her and she is heart broken that they are worried for her. I cannot imagine how alone it must feel to know absolutely no one around you. What a terrifying and isolating feeling to have. When she repeatedly asks the day of the week, she is not doing it to irritate. She is asking for confirmation that she is still in control of her mind.
I am going to try to remember to enter Alzheimer's World when I am responding to Mom. I probably will forget to take the step to the left before entering. But, I can make the effort. And while making the effort, I can try to respond with more comfort in my voice. Even though she probably does not understand a lot of the words that I am saying, she can understand the comfort and compassion that she can hear in my voice. And I will pray she finds peace in her world.
Thursday, August 30, 2012
Not her daughter...
Just a quick funny from Mom:
Mom seems to be especially confused right after she wakes up. I'm guessing it's because her dreams take her to another time when her memories are stronger. So, when she wakes up her present doesn't seem real. Anyway, she took a short nap this afternoon and woke up very agitated. We had a long conversation (that is a very generous word for what we did, lol) about where and who she was. She asked who I was and I said, "I'm your daughter." She responded very angrily, "You couldn't be my daughter. I'm younger and better looking than you!!"
Mom seems to be especially confused right after she wakes up. I'm guessing it's because her dreams take her to another time when her memories are stronger. So, when she wakes up her present doesn't seem real. Anyway, she took a short nap this afternoon and woke up very agitated. We had a long conversation (that is a very generous word for what we did, lol) about where and who she was. She asked who I was and I said, "I'm your daughter." She responded very angrily, "You couldn't be my daughter. I'm younger and better looking than you!!"
Wednesday, August 29, 2012
The wall...
Yesterday I shared that my brother saved the day with Mom. What I didn't emphasize enough was that he also saved my sanity. I had basically slammed into a wall with the expected results... it hurt. And, just like Wiley Coyote trying to get dinner, I was doing the only thing that I knew how to do... I was backing up and slamming into it again. Each slam hurt more than the last, until my body and my mind just couldn't take it any longer.
But a funny thing happened when he offered and gave help... he moved the wall away from me just a bit. I'm still running for it but now I have time to think about what will happen if I allow myself to slam into it. And the time is just enough that I am able to think of things that I would rather do than slam into it. This has allowed me to become more like the person that I believe I am. And, in doing so, Mom has become calmer. And a calm Mom nudges that wall just a little farther away from me. She is still combative and argumentative. The difference is that I'm not.
Tuesday, August 28, 2012
A helping hand...
It has been a rough few days. Mom's situation with the medical issue got much worse... not her condition... but her refusal to get help. She yelled at me all weekend that she needed to see a doctor. So, first thing Monday morning I got her into the car, got her to the doctor, and and was able to do a little bit of the paperwork before she began attempting her escape. She started very quietly, just a few steps towards the door. Soon, she began vehemently shaking her head and screaming that she was NOT going in there. Short of physically forcing her (and, at this point I couldn't have done it anyway) we had to leave once again.
In the parking lot, I called one of my brothers hoping that he could come take over. I sobbed that I couldn't do it anymore. I was done. He listened and said all the right things and then he told me his plan. I took her home and let her yell at me for the rest of the day about how badly she needed to see a doctor. Oh, the irony.
Then first thing this morning (Tuesday) I loaded Mom up, took her to breakfast and then drove to the doctor's office. As I approached the office, I saw my brother standing there at the entrance with a wheelchair. He opened the door and said, "Hello, Mrs. Bullock. We're all ready for you." He took her in and I drove away. 30 minutes later he texted me and said they were done and that he was filling her prescriptions.
Tonight I feel like the weight of the world has been taken off of my shoulders. It is amazing how a helping hand at the right time can make it all better.
In the parking lot, I called one of my brothers hoping that he could come take over. I sobbed that I couldn't do it anymore. I was done. He listened and said all the right things and then he told me his plan. I took her home and let her yell at me for the rest of the day about how badly she needed to see a doctor. Oh, the irony.
Then first thing this morning (Tuesday) I loaded Mom up, took her to breakfast and then drove to the doctor's office. As I approached the office, I saw my brother standing there at the entrance with a wheelchair. He opened the door and said, "Hello, Mrs. Bullock. We're all ready for you." He took her in and I drove away. 30 minutes later he texted me and said they were done and that he was filling her prescriptions.
Tonight I feel like the weight of the world has been taken off of my shoulders. It is amazing how a helping hand at the right time can make it all better.
Monday, August 27, 2012
Roommates...
I used to have a roommate, who like most roommates, sometimes drove me crazy. We were good friends and we spent a lot of time laughing together. But she had some really annoying habits. Most were superficial things that occur when two strangers live together. But, I used to gripe to my mom every time she irritated me. And I never realized how bad my griping had become until my mom admitted that she disliked her. I was shocked! She was a great person. But, all my mom ever heard was the bad stuff. She never heard about the time that we declared a water fight on our neighbors but never announced it to them. Or the all-night laugh fests with our pals Ben & Jerry. Mom was never privy to the positive times.
I bring this up because I have a different roommate now. And I feel like I only talk about the painful "she's driving me crazy" stuff. Don't mistake me, this is real and it is horrible. But, there are positives. And just as soon as I think of some I will tell you all about them.
I was going to stop there because it made me laugh. But, that wasn't the purpose of this post. Of course, there are positives. Some days are better than others. I just don't want anyone to think that every moment of every day is horrible. Every moment is a challenge, but they aren't always bad. And as stressful as these times are for me, I cannot fathom how scary and horrendous they are for her.
I bring this up because I have a different roommate now. And I feel like I only talk about the painful "she's driving me crazy" stuff. Don't mistake me, this is real and it is horrible. But, there are positives. And just as soon as I think of some I will tell you all about them.
I was going to stop there because it made me laugh. But, that wasn't the purpose of this post. Of course, there are positives. Some days are better than others. I just don't want anyone to think that every moment of every day is horrible. Every moment is a challenge, but they aren't always bad. And as stressful as these times are for me, I cannot fathom how scary and horrendous they are for her.
Thursday, August 23, 2012
Sweet, little, old lady...
Today has been one of those days that I just question what I am doing here and why do I even try.
Mom has a non-emergency condition that needs to be seen by a doctor. It causes her some pain that is manageable with some Tylenol but still needs to be addressed. She reminds me every chance she gets that I am cruel and inattentive by not taking her to the doctor. NOW. She has attempted to walk to the doctor on a Sunday afternoon. She has threatened me to get me to take me to the doctor.
Now, my side of the story. I have tried on several occasions since Sunday to get her to the doctor. Each time she refuses. Either she denies she has a problem or refuses (physically and verbally) to go. Today I had had enough. Come Hell or high water she was going to see some one. I took her to Urgent Care because the other appointments had to be cancelled. I try to help her out of the car. Nope. She doesn't need a doctor and she will not go in. Short of dragging her, I am forced to get back in the car and drive home.
We walk in the house and she starts yelling at me that she needs to see a doctor!! Yes, Mom, I know you do. And judging by the aroma in here, apparently, you now need a shower. What proceeds can best be described as verbal chaos. Between the two hours of her arguments that she took 3 showers last night and the demands that she be allowed to put the nasty clothes that she is wearing back on... we did not make it to the doctor again today.
All of this has me wondering whether every Alzheimer's patient is this stubborn. Is it their way of maintaining some semblance of control in their lives? Is it another type of short circuit in the brain? Why does asking someone to do something so simple have to be so very hard?
And then it hit me. This is the woman who drove around on an expired license for 2 and a half years! Why? Because she was told that she had to renew it. That's right someone was telling her she had to have a current license so she refused to renew it. Stubborn? You bet.
So, why am I writing this and showing everyone our tension filled and trivial situations? Because Alzheimer's is not always to blame for the crap in my life. It might aggravate it. And it certainly brings it to a head. But, it does not turn a stubborn woman into a sweet, little, old lady.
Mom has a non-emergency condition that needs to be seen by a doctor. It causes her some pain that is manageable with some Tylenol but still needs to be addressed. She reminds me every chance she gets that I am cruel and inattentive by not taking her to the doctor. NOW. She has attempted to walk to the doctor on a Sunday afternoon. She has threatened me to get me to take me to the doctor.
Now, my side of the story. I have tried on several occasions since Sunday to get her to the doctor. Each time she refuses. Either she denies she has a problem or refuses (physically and verbally) to go. Today I had had enough. Come Hell or high water she was going to see some one. I took her to Urgent Care because the other appointments had to be cancelled. I try to help her out of the car. Nope. She doesn't need a doctor and she will not go in. Short of dragging her, I am forced to get back in the car and drive home.
We walk in the house and she starts yelling at me that she needs to see a doctor!! Yes, Mom, I know you do. And judging by the aroma in here, apparently, you now need a shower. What proceeds can best be described as verbal chaos. Between the two hours of her arguments that she took 3 showers last night and the demands that she be allowed to put the nasty clothes that she is wearing back on... we did not make it to the doctor again today.
All of this has me wondering whether every Alzheimer's patient is this stubborn. Is it their way of maintaining some semblance of control in their lives? Is it another type of short circuit in the brain? Why does asking someone to do something so simple have to be so very hard?
And then it hit me. This is the woman who drove around on an expired license for 2 and a half years! Why? Because she was told that she had to renew it. That's right someone was telling her she had to have a current license so she refused to renew it. Stubborn? You bet.
So, why am I writing this and showing everyone our tension filled and trivial situations? Because Alzheimer's is not always to blame for the crap in my life. It might aggravate it. And it certainly brings it to a head. But, it does not turn a stubborn woman into a sweet, little, old lady.
Monday, August 20, 2012
She knows what she likes...
Just a quick funny from Mom:
Tonight she asked me if I would like some tea or coffee. I said, no, that I don't drink either. She responded with, "I drink coffee when I go out because they know how to make it. That's why I only drink water here."
Tonight she asked me if I would like some tea or coffee. I said, no, that I don't drink either. She responded with, "I drink coffee when I go out because they know how to make it. That's why I only drink water here."
She can feel your love...
This is a note to my family and friends.
I know that you love my Mom. She is your sister, aunt, grandmother and friend. I know some of you want to come see her. But, she is not here anymore. She is gone. Watching this hideous disease rob my mother of her very dignity breaks my heart every moment of every day. And while I will not keep her from you, I truly don't think any of you are prepared to see her as she is now. Each day I get up and think that as long as it isn't any worse than the day before that we can get through it. But, each day is worse than the day before. What worked yesterday doesn't work today. And, what works today probably won't work tomorrow. Our chances of her having a good day are very slim. And getting slimmer. She would be devastated to have you see her like this. So, I ask you to continue loving my Mother. But, please remember her the way she would like to be remembered. Full of piss and vinegar. Avoiding cameras. Making peanut butter gravy on steak and rubber hamburger in her tacos. And, when the need to see her becomes strong? Please offer an extra prayer for her to find peace. I know that deep inside where her very soul remains intact and whole, she can feel your love.
I know that you love my Mom. She is your sister, aunt, grandmother and friend. I know some of you want to come see her. But, she is not here anymore. She is gone. Watching this hideous disease rob my mother of her very dignity breaks my heart every moment of every day. And while I will not keep her from you, I truly don't think any of you are prepared to see her as she is now. Each day I get up and think that as long as it isn't any worse than the day before that we can get through it. But, each day is worse than the day before. What worked yesterday doesn't work today. And, what works today probably won't work tomorrow. Our chances of her having a good day are very slim. And getting slimmer. She would be devastated to have you see her like this. So, I ask you to continue loving my Mother. But, please remember her the way she would like to be remembered. Full of piss and vinegar. Avoiding cameras. Making peanut butter gravy on steak and rubber hamburger in her tacos. And, when the need to see her becomes strong? Please offer an extra prayer for her to find peace. I know that deep inside where her very soul remains intact and whole, she can feel your love.
Thursday, August 16, 2012
A message of thanks...
I started this blog pretty much on a whim. Most of my early entries (deleted now) were about random things. But I soon found myself writing more and more about my experiences taking care of my Mom. It was a natural transition to dedicate my writings to my journey as an Alzheimer's caretaker.
What I never anticipated was the relief that I felt when I shared my experiences, and more importantly, my feelings. It has been bittersweet sharing the funnier, lighthearted times. And talking about my shortcomings and disappointments has been both eye opening and painful. But, mostly, this experience has been very cathartic when I talk about the struggles of each day.
Some days, it truly feels as if I am baring my soul for the world to dissect and judge. And I wonder if other bloggers experience my same hesitation as they hover the cursor over the Publish button. Is this entry too much? Do people really want to know this crap? How can anyone possibly care about this? I usually end up telling myself that no one will read it anyway. So, I push the button.
And then this amazing thing started happening. People began responding and sending me private messages. Some sent words of encouragement to let me know that I am not alone. Some were messages of appreciation that I was able to put a face to the disease. And a few were a combination of both.
So, this post is a message of thanks. Thank you for sticking with me. Thank you for being there for me and for caring. You are all amazing.
What I never anticipated was the relief that I felt when I shared my experiences, and more importantly, my feelings. It has been bittersweet sharing the funnier, lighthearted times. And talking about my shortcomings and disappointments has been both eye opening and painful. But, mostly, this experience has been very cathartic when I talk about the struggles of each day.
Some days, it truly feels as if I am baring my soul for the world to dissect and judge. And I wonder if other bloggers experience my same hesitation as they hover the cursor over the Publish button. Is this entry too much? Do people really want to know this crap? How can anyone possibly care about this? I usually end up telling myself that no one will read it anyway. So, I push the button.
And then this amazing thing started happening. People began responding and sending me private messages. Some sent words of encouragement to let me know that I am not alone. Some were messages of appreciation that I was able to put a face to the disease. And a few were a combination of both.
So, this post is a message of thanks. Thank you for sticking with me. Thank you for being there for me and for caring. You are all amazing.
Tuesday, August 14, 2012
Like a thief in the night...
A few weeks ago, I posted some of the myths concerning Alzheimer's. But, in my experience, the most commonly held misconception is that Alzheimer's is simply a disease of forgetfulness. I've heard it referred to as "Old-timer's disease", inferring that it is just part of getting old. But the forgetfulness is what people originally observe... the tip-off that something is wrong. And while that is certainly a very big part of the disease, there is so much more that people just don't see.
We have experienced everything from her accusing me of reporting her for using too many ice cubes to her trying to get out of a moving car. Twice. Reality has disappeared. She asks questions over and over and becomes furious if the answer is not what she believes it to be. We have become very accomplished liars just to pacify her and keep her calm. She trusts no one, yet, panics if I am out of her sight. The only thing that we can count on is frustration and anger. She imagines conversations and believes them to be true. Her few remaining memories are based on a tidbit of fact, yet, remain true for her. The many family portraits on the wall have become something to count rather than a collection of memories. She has always had a strong faith in God but now believes she is Catholic. Many of her fears no longer scare her. Yet, many of the things that have long comforted her now are the enemy. At this point, the only consistent thing that she remembers is her sister Kathy. Those memories bring her comfort.
On many occasions, I have compared Mom to a toddler. But, with a small child there is excitement each day of what the child will learn and acquire. The reality of Alzheimer's is that it is a deadly disease. It will slowly take away more than her mind. And instead of excitement, we face each day with dread wondering what this heinous disease will steal this time.
We have experienced everything from her accusing me of reporting her for using too many ice cubes to her trying to get out of a moving car. Twice. Reality has disappeared. She asks questions over and over and becomes furious if the answer is not what she believes it to be. We have become very accomplished liars just to pacify her and keep her calm. She trusts no one, yet, panics if I am out of her sight. The only thing that we can count on is frustration and anger. She imagines conversations and believes them to be true. Her few remaining memories are based on a tidbit of fact, yet, remain true for her. The many family portraits on the wall have become something to count rather than a collection of memories. She has always had a strong faith in God but now believes she is Catholic. Many of her fears no longer scare her. Yet, many of the things that have long comforted her now are the enemy. At this point, the only consistent thing that she remembers is her sister Kathy. Those memories bring her comfort.
On many occasions, I have compared Mom to a toddler. But, with a small child there is excitement each day of what the child will learn and acquire. The reality of Alzheimer's is that it is a deadly disease. It will slowly take away more than her mind. And instead of excitement, we face each day with dread wondering what this heinous disease will steal this time.
My Day...
I have always been able to see both sides of almost any situation. I was lousy in debates because I would agree with both sides. I am the kind of middle of the road voter that politicians should seek out (but they don't). I can empathize and sympathize with the best of them.
But today is Tuesday. And Tuesday is my day, my time, and my choices. It is my day to be selfish. So, why am I here putting up with this? Because I don't have "plans". Or, rather, my plans aren't important enough to be considered. I am here because I understand that things come up that make giving me my day inconvenient. So, here I am dealing with the very things that make a selfish day necessary. And I am not feeling very compassionate or empathetic right now. But I am feeling pissed.
But today is Tuesday. And Tuesday is my day, my time, and my choices. It is my day to be selfish. So, why am I here putting up with this? Because I don't have "plans". Or, rather, my plans aren't important enough to be considered. I am here because I understand that things come up that make giving me my day inconvenient. So, here I am dealing with the very things that make a selfish day necessary. And I am not feeling very compassionate or empathetic right now. But I am feeling pissed.
Sunday, August 12, 2012
An Alarming Thought...
Going shopping with Mom can be quite an experience these days. She tells random people bits of useless information. Most people smile kindly and keep going. She has long, one-sided conversations with people who don't speak English. She waves at kids and tells them thank you when they wave back. She offers people a nickel if they will take her home with them. She walks at least 5 paces behind us. Always. Today we were in the middle of our second store when I realized that her pants were on backwards. All silly things in which I can see the humor.
Lately, though, she has been setting off the shoplifting alarms when we leave and when we enter stores. I have searched her purse and her wallet and cannot find what is activating it. The stores don't seem to mind when we are coming in but they often question us as we are leaving. I have a feeling that one of these days we are going to get someone who won't believe me and will want to strip search her. That's okay by me as long as they put her pants on right when they are through.
Lately, though, she has been setting off the shoplifting alarms when we leave and when we enter stores. I have searched her purse and her wallet and cannot find what is activating it. The stores don't seem to mind when we are coming in but they often question us as we are leaving. I have a feeling that one of these days we are going to get someone who won't believe me and will want to strip search her. That's okay by me as long as they put her pants on right when they are through.
Wednesday, August 8, 2012
Just For Grins...
I had this posted on my Facebook page but it just makes me smile so I want to keep it a little more permanently.
This reminds me of Mom when she wakes up before I do:
One morning she even asked me, "Did you know that you are asleep?"
This is obviously a Disney/Pixar picture from Finding Nemo.
This reminds me of Mom when she wakes up before I do:
One morning she even asked me, "Did you know that you are asleep?"
This is obviously a Disney/Pixar picture from Finding Nemo.
Saturday, August 4, 2012
Darkness...
I am trying so very hard to find positive in this entire situation. But, tonight it's just not working. I am feeling lonely and sad. I am in the midst of people but I feel invisible. I know that I am loved but I feel betrayed.
I know that this is not about me but I want to be selfish. Where is my caretaker? Where is my support? I know people have their lives and their issues but just a kind word or an acknowledgment that I am here would mean the world. My daughters do an amazing job of making my life easier and giving me a reason to get up and embrace the sunshine each day. They have been forced to give so much. They have given their childhoods. But when I'm in my deepest, darkest place and I need them the most I cannot ask for more and they do not offer. They have already given too much. And I am alone.
I know that this is not about me but I want to be selfish. Where is my caretaker? Where is my support? I know people have their lives and their issues but just a kind word or an acknowledgment that I am here would mean the world. My daughters do an amazing job of making my life easier and giving me a reason to get up and embrace the sunshine each day. They have been forced to give so much. They have given their childhoods. But when I'm in my deepest, darkest place and I need them the most I cannot ask for more and they do not offer. They have already given too much. And I am alone.
Friday, August 3, 2012
Sometimes...
Sometimes, I wish that I wasn't always so eager to volunteer.
Sometimes, I want to grab my children, run, and never look back.
Sometimes, I wish this horrible disease would just stop.
Sometimes, the cruelty of this disease is overwhelming.
Sometimes, it is so sad that it is funny.
Sometimes, I want to go back to when this disease was just starting and I didn't think that it could get worse.
Sometimes, I wish my kids were able to remember their grandmother when she wasn't angry.
Sometimes, I would like to be the person that I thought I was.
Sometimes, I need to remember that we do what we have to do and that there is no other choice.
Sometimes, I want to scream but I say nothing at all.
Sometimes, the guilt is the hardest burden of all.
Thursday, August 2, 2012
Myths...
I thought I'd share some myths about Alzheimer's.
1) There is a test to diagnose Alzheimer's. There is not... They basically rule out other possible causes of the symptoms. The final diagnoses is made after death. However, they are close to developing a blood test to diagnose it.
2) You can stop the disease with medications. Basically, the medications buy some time. It can slow the symptoms but there is no cure. Some patients do not even respond to the meds.
3) Alzheimer's is not a fatal disease. Because the disease usually occurs in the elderly they often die from other causes. But, it is a progressive disease that can lead to death.
4) Alzheimer's only affects the elderly. 9 out of 10 Alzheimer's patients are over the age of 65. But, there are patients who are diagnosed as early as their 30s.
5) Depression causes Alzheimer's. Patients with Alzheimer's are often depressed but it is not a cause.
6) Symptoms of Alzheimer's are reversible. They are not. Part of the reason for this misconception is that marketing for some drugs seem to claim remarkable results.
7) Aspartame, aluminum or silver tooth fillings cause the disease. There is no proof to any of these claims. When there is no real proof it is easy for rumors and speculation to spread.
8) Annual flu shots can trigger Alzheimer's. Simply not true.
9) Just a little more effort will overcome Alzheimer's. No amount of effort or work will stop this hideous disease. Maintaining an active lifestyle, including physical and mental activities, can improve the quality of life but they do not stop the progression of the disease.
10) Caregivers can do it alone. They can not. They need support and they need a break.
11) Alzheimer's is the normal result of aging... Everyone will get it if they live long enough. It is not.
My personal opinion, and it is just that, is that it is caused by the multitude of lifestyle and food choices that the last few generations have chosen. Never before have we been bombarded by so many chemicals and "modified" food products. Everything from trans-fats, to hormones, to non-stick pans and stain resistant clothes, to artificial sweeteners, to our dependency on our electronics and becoming couch potatoes. I believe all of these things contribute directly or indirectly to this disease. But, again, that just my opinion.
If you are interested, this is my source: http://bit.ly/OKNWxi
1) There is a test to diagnose Alzheimer's. There is not... They basically rule out other possible causes of the symptoms. The final diagnoses is made after death. However, they are close to developing a blood test to diagnose it.
2) You can stop the disease with medications. Basically, the medications buy some time. It can slow the symptoms but there is no cure. Some patients do not even respond to the meds.
3) Alzheimer's is not a fatal disease. Because the disease usually occurs in the elderly they often die from other causes. But, it is a progressive disease that can lead to death.
4) Alzheimer's only affects the elderly. 9 out of 10 Alzheimer's patients are over the age of 65. But, there are patients who are diagnosed as early as their 30s.
5) Depression causes Alzheimer's. Patients with Alzheimer's are often depressed but it is not a cause.
6) Symptoms of Alzheimer's are reversible. They are not. Part of the reason for this misconception is that marketing for some drugs seem to claim remarkable results.
7) Aspartame, aluminum or silver tooth fillings cause the disease. There is no proof to any of these claims. When there is no real proof it is easy for rumors and speculation to spread.
8) Annual flu shots can trigger Alzheimer's. Simply not true.
9) Just a little more effort will overcome Alzheimer's. No amount of effort or work will stop this hideous disease. Maintaining an active lifestyle, including physical and mental activities, can improve the quality of life but they do not stop the progression of the disease.
10) Caregivers can do it alone. They can not. They need support and they need a break.
11) Alzheimer's is the normal result of aging... Everyone will get it if they live long enough. It is not.
My personal opinion, and it is just that, is that it is caused by the multitude of lifestyle and food choices that the last few generations have chosen. Never before have we been bombarded by so many chemicals and "modified" food products. Everything from trans-fats, to hormones, to non-stick pans and stain resistant clothes, to artificial sweeteners, to our dependency on our electronics and becoming couch potatoes. I believe all of these things contribute directly or indirectly to this disease. But, again, that just my opinion.
If you are interested, this is my source: http://bit.ly/OKNWxi
Monday, July 30, 2012
The Lurker...
Mom may have lost some of her memories but she has made it up in the sneakiness that she has acquired. It just makes me laugh that she thinks that she is so sly.
Katie loves to go outside in the evenings and enjoy the cool weather. She plays or sits or just hangs around. But, it drives Mom absolutely bonkers that "that little girl is out there all alone!" So, Mom tries to go out. When I ask her not to, she always listens. For a few minutes. But if I am distracted, she is outta here. She'll come back in when I ask. But, she will keep trying to slip out. It becomes funny when she acts like she is going to get a drink of water. Next thing I know she has slipped out the back door and is bugging Katie to come in.
Late in the evening when she is getting ready to go to bed, she will go to the kitchen many times for a drink of water. She walks back through with her housecoat pockets bulging. I say, "Mom? What do you have in your pockets?" "Nothing", as she tucks the folds to hide the pockets. I get her to show me and she has stuffed her pockets with bread. She is so cute when she acts like she didn't put it there. Picture a 2 year old getting caught in the cookie jar.
She will stand almost out of sight from wherever we are. We call her "The Lurker", You can hear her talking to herself and popping her knuckles. We know she is there but it upsets her if we speak to her while her invisibility force field is in place. Doesn't that sound like a toddler?
But, my favorite (and most irritating, as well), is that she picks. Apparently, a small percentage of dementia patients scratch at themselves. We spend the day doing this dance: she bends at the waist and picks at her legs, I ask her/tell her to stop. She pretends she is looking at a picture on the wall, or is pulling down the cuff of her pants, or that she has always hung her hands around her ankles like a monkey. I am never surprised when she quotes a 2 year old and says, "I didn't do it."
The upside is that she still has the capability to think through the act of being sneaky.
Katie loves to go outside in the evenings and enjoy the cool weather. She plays or sits or just hangs around. But, it drives Mom absolutely bonkers that "that little girl is out there all alone!" So, Mom tries to go out. When I ask her not to, she always listens. For a few minutes. But if I am distracted, she is outta here. She'll come back in when I ask. But, she will keep trying to slip out. It becomes funny when she acts like she is going to get a drink of water. Next thing I know she has slipped out the back door and is bugging Katie to come in.
Late in the evening when she is getting ready to go to bed, she will go to the kitchen many times for a drink of water. She walks back through with her housecoat pockets bulging. I say, "Mom? What do you have in your pockets?" "Nothing", as she tucks the folds to hide the pockets. I get her to show me and she has stuffed her pockets with bread. She is so cute when she acts like she didn't put it there. Picture a 2 year old getting caught in the cookie jar.She will stand almost out of sight from wherever we are. We call her "The Lurker", You can hear her talking to herself and popping her knuckles. We know she is there but it upsets her if we speak to her while her invisibility force field is in place. Doesn't that sound like a toddler?
But, my favorite (and most irritating, as well), is that she picks. Apparently, a small percentage of dementia patients scratch at themselves. We spend the day doing this dance: she bends at the waist and picks at her legs, I ask her/tell her to stop. She pretends she is looking at a picture on the wall, or is pulling down the cuff of her pants, or that she has always hung her hands around her ankles like a monkey. I am never surprised when she quotes a 2 year old and says, "I didn't do it."
The upside is that she still has the capability to think through the act of being sneaky.
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