I've been working on my anger. I'm doing better but I still have a long way to go.
One of the things that I am trying to do is to observe Mom when she isn't trying for attention by being angry and negative. Last night while I was lying on the couch in the dark I watched her stand in the dimly lit hallway. She was mildly agitated, but not angry. As she stood there, I could see the confusion and frustration. She seemed to know that she was someplace familiar but knew it wasn't her home. She was quiet, not bothering anyone (that would soon come) but clearly not comfortable. It was after 11 and she had gone to bed several hours before. She was up and down for almost a half an hour before she loudly said, "I need to go home. NOW!" I ended up spending almost 3 hours in her room, just sitting next to her bed, letting her know that I was there. I have to be honest, it was more to let my daughters get some sleep than it was to calm Mom. But, I wasn't angry.
I am hoping that by focusing on her when she is calmer, I will see the human side of her suffering. I need to focus on the disease and not her behavior. I need to accept that she is the victim. I need to stop blaming her and know that Alzheimer's is the villain. I need to feel her pain and remember that she did not choose this journey.
I may be taking small steps, but they will still get me where I need to go.
Saturday, April 19, 2014
Tuesday, April 15, 2014
I am angry...
I have been thinking about yesterday's posts... a lot. I know that I have a problem with the anger that I am feeling in this situation. And I am very angry. I believe that some of my anger is justified. My family and I should not be in this alone. I have siblings that should do more. I am broke and scared that no one will want to hire me when this is all through and I won't be able to dig my way out of this mess. I am angry at this disease. It is evil. It has devoured, or at least snacked on, every area of our lives. I am angry that my children will remember me as a basket case... as someone whose moods jump from anger, to despondency, to silliness, in a blink of an eye. At any given moment, the don't know who their mom will be. And I am angry that my health has suffered from the stress. I don't want to be a statistic is this journey. I want to be here for my kids.
But, I think the worst anger that I feel is the one that isn't justified. I am angry at my mother. I know that anger is part of grief and we are certainly grieving. But, normally, when there is anger during grief, it is aimed at someone who is no longer here and can't be hurt by the anger. It is a phase of grief that we tend to work through and let go when we accept that the person who is gone, in most cases, did not choose to leave us. But, Mom is still here. And that in itself makes me angry. Why is she still here? Why is she made to suffer and live like this? Why does she have to be the center of everything in our lives? There is no decision that is made that she isn't the primary concern. We don't/can't even use the bathroom without considering whether she will need it or even wake up when she hears it being used. Reality tells me that my anger should be reserved for the disease, but I am angry with her nonetheless.
Before things became really bad here, one of my daughters was very snippy and rude to her grandmother. It wasn't like her and it wasn't called for. When I asked her about it, she cried and said, "I guess it's easier to be angry at her now then to hurt when she's gone." And there it is. I think that anger is an easy emotion. It is so much easier to be angry than it is to feel the pain of loss.
I will be working on the anger. It helps to understand it. It helps to stop using it as an excuse or justification for poor actions. I know I won't fully erase the anger, but I can choose how I handle it. I cannot change Alzheimer's. I can choose how I respond to its challenges.
“It is wise to direct your anger towards problems -- not people; to focus your energies on answers -- not excuses.” - William Arthur Ward
But, I think the worst anger that I feel is the one that isn't justified. I am angry at my mother. I know that anger is part of grief and we are certainly grieving. But, normally, when there is anger during grief, it is aimed at someone who is no longer here and can't be hurt by the anger. It is a phase of grief that we tend to work through and let go when we accept that the person who is gone, in most cases, did not choose to leave us. But, Mom is still here. And that in itself makes me angry. Why is she still here? Why is she made to suffer and live like this? Why does she have to be the center of everything in our lives? There is no decision that is made that she isn't the primary concern. We don't/can't even use the bathroom without considering whether she will need it or even wake up when she hears it being used. Reality tells me that my anger should be reserved for the disease, but I am angry with her nonetheless.
Before things became really bad here, one of my daughters was very snippy and rude to her grandmother. It wasn't like her and it wasn't called for. When I asked her about it, she cried and said, "I guess it's easier to be angry at her now then to hurt when she's gone." And there it is. I think that anger is an easy emotion. It is so much easier to be angry than it is to feel the pain of loss.
I will be working on the anger. It helps to understand it. It helps to stop using it as an excuse or justification for poor actions. I know I won't fully erase the anger, but I can choose how I handle it. I cannot change Alzheimer's. I can choose how I respond to its challenges.
“It is wise to direct your anger towards problems -- not people; to focus your energies on answers -- not excuses.” - William Arthur Ward
Monday, April 14, 2014
When the credits roll...
"When you objectify a person living with dementia you dehumanize them. Once dehumanized the person becomes a villain." - Bob DeMarco
In my last blog entry I shared some quotes that spoke to me. The quote above didn't just speak to me, it screamed at me. I actually considered not including it in the list of quotes because it also convicted me. It's what I have done. It's what I do. Mom is no longer a victim of Alzheimer's, I've turned her into the villain in this drama. And that's a humbling admission.
Sometimes I feel like I am living that old Bill Murray movie, Ground Hog Day. He kept living the same day over and over again until he got it right. Each day was a test and it was his choice whether he learned from the results. Well, if my life is that movie then I have been failing the test every day for years. What a boring, sad movie I'm living. I have felt for a long while that this movie will not end until I can pass the test.
This disease has progressed very slowly for Mom, but so has my ability to give her what she needs. I must stop the anger and focus on what is real... she is not a villain, she is the victim. And victims deserve compassion and empathy.
I have to decide whether I am the person that I think I am... the person who can make this right. It will be a long journey and I know that years of anger will not be undone overnight. But, I vow that I will find a way to end this story with more dignity and kindness than I have shown for the majority of the movie. And if I can get this right, then maybe, just maybe, I will find it easier to accept the title of hero when the credits roll.
Wise words...
As you can imagine, I spend a bit of time reading and learning about Alzheimer's Disease. Sometimes it is to understand it better and sometimes to help me understand my reactions to it. These are some quotes that helped with both or simply spoke to me with their truths.
"I'm in awe of people out there who deal with Alzheimer's, because they have to deal with death 10 times over, year after year." - Marcia Wallace
"With Alzheimer's patients, you have to be very careful what you say when you're looking at them over their bed. Because once in awhile they understand it." - Nancy Reagan
"Alzheimer's is literally killing us, and the only way to fight this 'crime' is through a groundswell of people who continue to raise their voices and funds to ensure it gets the attention it deserves." - Tess Gerritsen
"Caring for an Alzheimer's patient is a situation that can utterly consume the lives and well-being of the people giving care, just as the disorder consumes its victims." - Leeza Gibbons
"When someone living with Alzheimer's believes something to be true it is true - in Alzheimer's World." - Bob DeMarco
"Alzheimer's caregivers ride the world's biggest, fastest, scariest, emotional roller coaster every day." Bob DeMarco
"When you objectify a person living with dementia you dehumanize them. Once dehumanized the person becomes a villain." - Bob DeMarco
"I'm in awe of people out there who deal with Alzheimer's, because they have to deal with death 10 times over, year after year." - Marcia Wallace
"With Alzheimer's patients, you have to be very careful what you say when you're looking at them over their bed. Because once in awhile they understand it." - Nancy Reagan
"Alzheimer's is literally killing us, and the only way to fight this 'crime' is through a groundswell of people who continue to raise their voices and funds to ensure it gets the attention it deserves." - Tess Gerritsen
"Caring for an Alzheimer's patient is a situation that can utterly consume the lives and well-being of the people giving care, just as the disorder consumes its victims." - Leeza Gibbons
"When someone living with Alzheimer's believes something to be true it is true - in Alzheimer's World." - Bob DeMarco
"Alzheimer's caregivers ride the world's biggest, fastest, scariest, emotional roller coaster every day." Bob DeMarco
"When you objectify a person living with dementia you dehumanize them. Once dehumanized the person becomes a villain." - Bob DeMarco
Alzheimer's
is literally killing us, and the only way to fight this 'crime' is
through a groundswell of people who continue to raise their voices and
funds to ensure it gets the attention it deserves.
Read more at http://www.brainyquote.com/quotes/keywords/alzheimer_2.html#lcr3wI0OEXIpruYu.99A
Read more at http://www.brainyquote.com/quotes/keywords/alzheimer_2.html#lcr3wI0OEXIpruYu.99A
I'm in awe of people out there who deal with Alzheimer's, because they have to deal with death 10 times over, year after year.
Read more at http://www.brainyquote.com/quotes/keywords/alzheimer.html#bEyWVuhPAZRQx5Z4.99
Read more at http://www.brainyquote.com/quotes/keywords/alzheimer.html#bEyWVuhPAZRQx5Z4.99
Thursday, April 10, 2014
It will have to do...
Well, we made it through another visit to urgent care. It was not fun. I can honestly say that they will remember us now. Who could forget an adult patient who tells you to "shut the f up"? Who could forget a patient who calls the doctor a "bitch"?. Who could forget having to throw away 3 boxes of gloves that an adult patient threw all around the room?
Yep, we made it through. And that is the positive that I am able to see at this point.
Yep, we made it through. And that is the positive that I am able to see at this point.
Wednesday, April 9, 2014
The stye is the limit...
Things have been fairly normal around here lately. Well, normal for us. It's been so quiet that I've been waiting for another shoe to drop... not the proverbial other shoe because that would mean that there were only two.
Mom came home from day care yesterday with a little redness in her right eye. I looked closer and it looked like she was getting a stye. Sure enough, by this afternoon her eye was irritated and starting to swell. It didn't seem to bother her until a couple of hours ago when she found the irritation. With the discovery, the shoe dropped and Mom picked it up and threw it at me. I won't go into a lot of detail, but, let's just say that keeping her hands clean and away from her eye is a battle. Each time she touches it she thinks is the first time. She doesn't remember being told to leave it alone. Trying to help her feels like a war. A warm compress on the eye is met with screams of torture. We'll be heading to urgent care in a little bit. Day care and the chance for a normal day will be cancelled tomorrow.
In the grand scheme of things, this is a small shoe... but it packs a heck of a kick. And I just want to cry.
Mom came home from day care yesterday with a little redness in her right eye. I looked closer and it looked like she was getting a stye. Sure enough, by this afternoon her eye was irritated and starting to swell. It didn't seem to bother her until a couple of hours ago when she found the irritation. With the discovery, the shoe dropped and Mom picked it up and threw it at me. I won't go into a lot of detail, but, let's just say that keeping her hands clean and away from her eye is a battle. Each time she touches it she thinks is the first time. She doesn't remember being told to leave it alone. Trying to help her feels like a war. A warm compress on the eye is met with screams of torture. We'll be heading to urgent care in a little bit. Day care and the chance for a normal day will be cancelled tomorrow.
In the grand scheme of things, this is a small shoe... but it packs a heck of a kick. And I just want to cry.
Sunday, April 6, 2014
Just a quick funny...
We have a pet who had surgery recently and is wearing a cone. I have to keep her away from Mom because every time Mom sees her she tugs on it and tries to pull it off because "it belongs on the lamp!"
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