Mom is sick again. We have been careful to keep the yuckies that are everywhere this time of year from her. Apparently, the yuckies are more clever. This time she brought them home to us. Not wanting to put her through another month long hospital ordeal like the last time she got sick, I was at urgent care the second day of her cold. But, it was already too late. It had already turned into pneumonia.
The doctor we saw was wonderful. He listened to me when I told him of the experience in November when they basically strapped her down for a month in order to treat her for pneumonia. He then allowed me to make the choice of whether to treat her at home or to send her to the hospital. He politely, and tactfully, spoke about reaching a point that going through heroic measures in cases like Mom's is not always merciful or in her best interest. I am so grateful for his compassion and understanding. I asked whether I could be held legally accountable for not admitting her to the hospital if she ended up worsening. His response was that he, as her attending physician, at this time, did not see the benefit of hospitalization for someone with Alzheimer's that is as advanced as Mom's. He added that restraining someone who has a terminal disease and has no ability to understand why she is being restrained, just to treat her for a secondary condition, was cruel. He made notes in her chart in support of my decision to treat her at home. As long as she is comfortable and doesn't worsen, she will be at home.
Mom has advanced Alzheimer's. She is terminal. I don't want her to die. I truly don't. But, I don't want her to live the way she is living. Scratch that. She isn't living. She is existing. What little dignity that Alzheimer's has left her will soon be a memory. There is no hope of a cure. There won't be in her lifetime. But, I do want my mother to find peace. And if that means that I won't do everything in my power to "save" her, then so be it.
Saturday, January 31, 2015
Thursday, January 8, 2015
A fun evening...
It's been a fun evening. No, really.
-I heard a quiet whooshing sound a little bit ago. It lasted about 6 seconds. Silence. Whooshing. Silence. Whooshing. I got up to see where it was coming from and found Mom in the hall. She had her mouth next to the switch and was blowing on it. I guess she was trying to "turn it on".
-While I was sitting in my usual spot on the love seat, blocking Mom's escape route, she pointed at my arm and said, "Excuse me. Would you mind if I broke your right wing? I'd really like to crush it."
-Awhile later she was sitting "quietly" across from me, looked up and said, "I can't wait until I get my fingers all over you." After the incident in the hall, I let that one pass.
-And, finally, while Katie and I were playing fetch with the dog, she yelled, "Stop it! We don't use animals for sex!"
I'm glad she remembers important things.
-I heard a quiet whooshing sound a little bit ago. It lasted about 6 seconds. Silence. Whooshing. Silence. Whooshing. I got up to see where it was coming from and found Mom in the hall. She had her mouth next to the switch and was blowing on it. I guess she was trying to "turn it on".
-While I was sitting in my usual spot on the love seat, blocking Mom's escape route, she pointed at my arm and said, "Excuse me. Would you mind if I broke your right wing? I'd really like to crush it."
-Awhile later she was sitting "quietly" across from me, looked up and said, "I can't wait until I get my fingers all over you." After the incident in the hall, I let that one pass.
-And, finally, while Katie and I were playing fetch with the dog, she yelled, "Stop it! We don't use animals for sex!"
I'm glad she remembers important things.
Tuesday, January 6, 2015
10 signs...
10 signs that I am a caregiver for an Alzheimer's victim:
1. I keep earplugs on my person at all times. I can still hear, but the yelling and complaining just isn't as mind-numbing.
2. I think that 4 hours of uninterrupted sleep is a good night.
3. I keep the equivalent of a baby diaper bag with me when I go out. Snacks, diapers, wipes, bottles (I enjoy the little cocktail sizes that the airlines serve), etc.
4. People remember us wherever we go.
5. We have places that we can't visit anymore because the people remember us a little too well.
6. We stay at the front of stores because the farther we go the farther it is to come back out when she's having a meltdown.
7. I can tell by how she's breathing whether she's heading for a tantrum.
8. I react politely when told that "You're lucky to still have her."
9. I respectfully accept the same well-meaning advice that I've heard dozens of other times and act like it's the first time I've heard it.
10. I mentally strangle strangers every time someone says, "Oh, isn't she cute!"
1. I keep earplugs on my person at all times. I can still hear, but the yelling and complaining just isn't as mind-numbing.
2. I think that 4 hours of uninterrupted sleep is a good night.
3. I keep the equivalent of a baby diaper bag with me when I go out. Snacks, diapers, wipes, bottles (I enjoy the little cocktail sizes that the airlines serve), etc.
4. People remember us wherever we go.
5. We have places that we can't visit anymore because the people remember us a little too well.
6. We stay at the front of stores because the farther we go the farther it is to come back out when she's having a meltdown.
7. I can tell by how she's breathing whether she's heading for a tantrum.
8. I react politely when told that "You're lucky to still have her."
9. I respectfully accept the same well-meaning advice that I've heard dozens of other times and act like it's the first time I've heard it.
10. I mentally strangle strangers every time someone says, "Oh, isn't she cute!"
Saturday, January 3, 2015
It is time...
It's been quite awhile since I posted. I just don't seem to have much to say. Things are more of the same a few new challenges. In talking to a couple of people, I realized that many thought that Mom was in a facility already. She's not. She's still at home as I try to place her. This time, her Alzheimer's doctor is helping us.
She just started back to day care this last week. In the two months that she was out, no one at the facility told me that she had to have a medical release to return. It makes sense, but it wasn't at the top of my worries at the time, and it would have been nice to have been told. We finally got the release and Mom is going 4 days a week again. I've spoken to a couple of the workers and Mom seems to have calmed down just a bit. One of the aides, who Mom was especially close to, said the Mom seems to be spiraling downward. She doesn't recognize people by sight anymore, including the aide.
I see it in daily activities. She rarely understands basic dialogue anymore. She saw her neurologist and he immediately commented that her language has deteriorated. For the most part, she isn't capable of responding to simple directions. Something as easy as asking her to wash her hands is met with confusion and frustration. She has begun eating with her hands, even something as messy as spaghetti. Her bathroom habits are a constant challenge and that is a major concern. She can't do it all by herself but refuses help.
Overall, there is nothing new that is earth shattering. She's still hungry all of the time and is eating most everything that we put in front of her. But, we are at the point that I can't care for her as she needs anymore. For her sake, and ours, it's time.
She just started back to day care this last week. In the two months that she was out, no one at the facility told me that she had to have a medical release to return. It makes sense, but it wasn't at the top of my worries at the time, and it would have been nice to have been told. We finally got the release and Mom is going 4 days a week again. I've spoken to a couple of the workers and Mom seems to have calmed down just a bit. One of the aides, who Mom was especially close to, said the Mom seems to be spiraling downward. She doesn't recognize people by sight anymore, including the aide.
I see it in daily activities. She rarely understands basic dialogue anymore. She saw her neurologist and he immediately commented that her language has deteriorated. For the most part, she isn't capable of responding to simple directions. Something as easy as asking her to wash her hands is met with confusion and frustration. She has begun eating with her hands, even something as messy as spaghetti. Her bathroom habits are a constant challenge and that is a major concern. She can't do it all by herself but refuses help.
Overall, there is nothing new that is earth shattering. She's still hungry all of the time and is eating most everything that we put in front of her. But, we are at the point that I can't care for her as she needs anymore. For her sake, and ours, it's time.
Friday, December 12, 2014
Clap your hands...
Do you remember leaving your child for the first time at preschool or kindergarten? You probably had mixed emotions. You knew that they were in well trained and caring hands. They needed to be there. But, the screams of "Don't leave me here!" broke your heart. You expected to hear about all of the things that they learned and how nice the people were that helped them. That part is exciting, but the bad habits that they seem to pick up are frustrating and a new challenge that must be handled.
This walk down memory lane is pretty much what happened when I left my mom in well trained and caring hands at the hospital. Yes, there was screaming as I walked away. And, instead of hearing about wonderful experiences when she came home (no, I really didn't expect a miracle), I received a physically healthier mom. For that I am thankful. Unfortunately, we were also gifted with some new bad habits to challenge us.
Here's a quick little story that will make sense in a minute... When I was 10 or 11, Mom used to take me to the convalescent home where she worked. I hated it. What I most remember is the screams. It seemed like every room had a resident screaming, "Help me! Oh, please, help me! Don't leave me here!" I'm sure that there weren't that many screams, but, to my young ears, it sure sounded like it. It made me feel helpless and scared.
Which leads me to one of Mom's newly acquired behaviors... screaming. "Help me! Somebody help me!" It is still heartbreaking to hear. And I feel just as helpless. There is little to do to soothe her. Offers of help are met with anger and frustrations. Distractions are non-existent these days. Offering a hand to hold is grounds for getting that hand slapped. Helpless. Both of us.
My favorite new challenge is the the tapping. And clapping. And poking (strangers like this one, too). And knocking. And pounding. If there is a surface, or body, or even two available hands (like the two she has) she will make some kind of rhythmic noise. If she needs your attention beyond the yells and crying, she will poke you. Often. And anywhere. On anyone. It's a fun challenge. Tonight we received a special performance, I could actually pick out the rhythm of a song.
It would have been the perfect ending to this post if the song had been "If You're Happy and You Know It, Clap Your Hands." She could have changed the words in the final verse:
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
If you're unhappy and you know it, then your hands will surely show it,
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
This walk down memory lane is pretty much what happened when I left my mom in well trained and caring hands at the hospital. Yes, there was screaming as I walked away. And, instead of hearing about wonderful experiences when she came home (no, I really didn't expect a miracle), I received a physically healthier mom. For that I am thankful. Unfortunately, we were also gifted with some new bad habits to challenge us.
Here's a quick little story that will make sense in a minute... When I was 10 or 11, Mom used to take me to the convalescent home where she worked. I hated it. What I most remember is the screams. It seemed like every room had a resident screaming, "Help me! Oh, please, help me! Don't leave me here!" I'm sure that there weren't that many screams, but, to my young ears, it sure sounded like it. It made me feel helpless and scared.
Which leads me to one of Mom's newly acquired behaviors... screaming. "Help me! Somebody help me!" It is still heartbreaking to hear. And I feel just as helpless. There is little to do to soothe her. Offers of help are met with anger and frustrations. Distractions are non-existent these days. Offering a hand to hold is grounds for getting that hand slapped. Helpless. Both of us.
My favorite new challenge is the the tapping. And clapping. And poking (strangers like this one, too). And knocking. And pounding. If there is a surface, or body, or even two available hands (like the two she has) she will make some kind of rhythmic noise. If she needs your attention beyond the yells and crying, she will poke you. Often. And anywhere. On anyone. It's a fun challenge. Tonight we received a special performance, I could actually pick out the rhythm of a song.
It would have been the perfect ending to this post if the song had been "If You're Happy and You Know It, Clap Your Hands." She could have changed the words in the final verse:
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
If you're unhappy and you know it, then your hands will surely show it,
If you're unhappy and you know it, clap your hands, bang the walls, poke someone.
Wednesday, December 3, 2014
Let right win...
It has been an emotional and stressful couple of weeks. Here is an update on Mom's condition:
Mom is doing well as far as her physical health is concerned. She has recovered from the pneumonia. She is understandably weak and has been in a skilled nursing facility for several days. The original goal was for her to stay only long enough to get her strength back and then come home. Unfortunately, she is about an hour away and I don't get to go to see her every day.
After seeing her at the home yesterday, the goal has changed as I have realized that I am just not qualified to give her the kind of care that she will be needing soon. Additionally, Medicare rules being what they are, we might not have the opportunity to place her in a long term facility again. So, we are trying to find a permanent home for her where her needs and comfort can be met.
This was not a decision made quickly or without a lot of thought. I believe it is the best choice for her overall comfort and care. I have made comments and observations that the woman I have taken care of for all of these years is not my mother. It is a horrible disease destroying her body and her mind with very slow, very sure steps. But, the bottom line is that disease ravaged person is still my mom. Regardless of how I feel about the impact of the disease, I want my mom to be safe and comfortable. I think this choice will help make that happen.
Finally, I would be less than honest if I said that part of the decision is for my and my family's well-being. We have survived this disease but the cost has been enormous. I have lost a sibling, my financial stability and my children's childhoods... and sometimes even my own sanity.
I hope and pray that this decision works out. There are still a lot of hoops to jump through and red tape to be cut. But, I'm a firm believer in what is right will win.
Mom is doing well as far as her physical health is concerned. She has recovered from the pneumonia. She is understandably weak and has been in a skilled nursing facility for several days. The original goal was for her to stay only long enough to get her strength back and then come home. Unfortunately, she is about an hour away and I don't get to go to see her every day.
After seeing her at the home yesterday, the goal has changed as I have realized that I am just not qualified to give her the kind of care that she will be needing soon. Additionally, Medicare rules being what they are, we might not have the opportunity to place her in a long term facility again. So, we are trying to find a permanent home for her where her needs and comfort can be met.
This was not a decision made quickly or without a lot of thought. I believe it is the best choice for her overall comfort and care. I have made comments and observations that the woman I have taken care of for all of these years is not my mother. It is a horrible disease destroying her body and her mind with very slow, very sure steps. But, the bottom line is that disease ravaged person is still my mom. Regardless of how I feel about the impact of the disease, I want my mom to be safe and comfortable. I think this choice will help make that happen.
Finally, I would be less than honest if I said that part of the decision is for my and my family's well-being. We have survived this disease but the cost has been enormous. I have lost a sibling, my financial stability and my children's childhoods... and sometimes even my own sanity.
I hope and pray that this decision works out. There are still a lot of hoops to jump through and red tape to be cut. But, I'm a firm believer in what is right will win.
Saturday, November 22, 2014
I am thankful...
The girls and I left the hospital earlier than usual tonight. I try to stay until Mom is settling down for the night. But, I think the long week was taking its toll on me. I was just simply out of patience.
We had dinner and came home. I encouraged the girls to go out and just relax for the evening. They decided to go bowling and just have a little fun. As they were leaving, Kylie looked at me and said, "I'm sorry, Mom. I should have asked you if you wanted to come with us." It's was strange to realize that going with my girls was a choice that I could make. We have left someone behind for so long that it never occurred to any of us that my joining them was an option. It has been a very long time since we've had the luxury of doing things with just us.
Now, as I sit here in the quiet of the house, I find myself with one ear towards Mom's bedroom, listening for movement, preparing myself for the turmoil that Alzheimer's brings to our home. When it remains quiet, I remember, she's not here. She's a few miles away, safely tucked into a bed with people better equipped to care for her.
For this small period of time, my mother is safe, my children are happy, and there is peace in this house.
And I am thankful.
We had dinner and came home. I encouraged the girls to go out and just relax for the evening. They decided to go bowling and just have a little fun. As they were leaving, Kylie looked at me and said, "I'm sorry, Mom. I should have asked you if you wanted to come with us." It's was strange to realize that going with my girls was a choice that I could make. We have left someone behind for so long that it never occurred to any of us that my joining them was an option. It has been a very long time since we've had the luxury of doing things with just us.
Now, as I sit here in the quiet of the house, I find myself with one ear towards Mom's bedroom, listening for movement, preparing myself for the turmoil that Alzheimer's brings to our home. When it remains quiet, I remember, she's not here. She's a few miles away, safely tucked into a bed with people better equipped to care for her.
For this small period of time, my mother is safe, my children are happy, and there is peace in this house.
And I am thankful.
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