Our journey through Alzheimer's is over. The ramifications of the experience will last for years.
Here's one that I'm working through:
Mom became so agitated with the slightest activities around the house that I let a lot of things go in the last 2 years of Mom's illness. We rarely cooked. We did little cleaning besides what was absolutely necessary for health reasons. We didn't decorate for holidays. If something broke, we found a way to make it work with minimal disruption to Mom. Needless to say, the house is a mess.
It was only 6 months ago that I chose to place Mom in a facility that could care for her better than I could. I thought, "Wow! I can do things again. I can finally get the house put back together." Unfortunately, these energetic thoughts were followed with an unbelievable sense of hopelessness and apathy. I just didn't care. I don't know if I believed that she was going to be sent home again (it entered my mind) or whether I just needed the time to lick my wounds and heal a bit.
Whatever the reason, since Mom's passing, I have been filled with a sense of urgency and energy to get things done. I need to get up and move. I need to clean, fix, and purge. I need to work. And I have been. The house is still torn up, it always looks worse before it can look better. But, I am getting there.
As I said, I will be working through the repercussions of this journey for a long time. It feels good to take a first step back to my life.
Monday, October 19, 2015
Tuesday, October 13, 2015
No tears...
It didn't end the way I imagined.
The first call from hospice letting me know that Mom's condition was deteriorating rapidly hit me hard. I think part of my brain actually considered her "outliving us all". Unrealistic, I know. But, it was something that we said, and probably believed, during the stressful times. Physically, she was strong and healthy for a woman in her 80s. The Alzheimer's had progressed slowly. So very slowly. There was no reason to think it wouldn't continue in the same way. I knew that she would be there on my next visit, yelling that she was hungry.
But, she's gone. She's been gone almost two weeks. I am actually happy that she is gone. I am finding that most people are shocked by that. I shed many tears for my mother over the years. I grieved for her each day that I was forced to watch her slow and cruel death. My children and I said our goodbyes to her many years ago. She was spared the final suffering that many Alzheimer's victims are forced to endure.
So, no, I have no tears for my mother's passing. I do have a sense of relief and an overwhelming feeling of gratitude for her final and glorious peace. I know where she is and, more importantly, she does, too. She is whole.
Alzheimer's did not win.
Eternal peace did.
The first call from hospice letting me know that Mom's condition was deteriorating rapidly hit me hard. I think part of my brain actually considered her "outliving us all". Unrealistic, I know. But, it was something that we said, and probably believed, during the stressful times. Physically, she was strong and healthy for a woman in her 80s. The Alzheimer's had progressed slowly. So very slowly. There was no reason to think it wouldn't continue in the same way. I knew that she would be there on my next visit, yelling that she was hungry.
But, she's gone. She's been gone almost two weeks. I am actually happy that she is gone. I am finding that most people are shocked by that. I shed many tears for my mother over the years. I grieved for her each day that I was forced to watch her slow and cruel death. My children and I said our goodbyes to her many years ago. She was spared the final suffering that many Alzheimer's victims are forced to endure.
So, no, I have no tears for my mother's passing. I do have a sense of relief and an overwhelming feeling of gratitude for her final and glorious peace. I know where she is and, more importantly, she does, too. She is whole.
Alzheimer's did not win.
Eternal peace did.
Wednesday, September 30, 2015
Soon...
For so very long things have moved so very slowly. Mom's journey seemed to take forever. I saw the early signs almost 15 years ago. Now it is all just moving so unexpectedly fast. Hospice called yesterday to prepare us for what is coming. After all of these years you'd think that I would be ready.
I'm not. It hit me hard. I'm getting through this horrible waiting by remembering what I have spent countless hours praying and wishing for: Her peace. I am mentally happy that she is about to go home to a peace that we cannot comprehend. But, it's my mom and I am going miss her and feel a huge whole with her passing.
Surprisingly, this grief that I feel is almost comforting. I thought I would feel little but relief that my obligations are through. It's wonderful to know that some compassion remains that was not stolen by the cowardly thief that is Alzheimer's.
I'm not. It hit me hard. I'm getting through this horrible waiting by remembering what I have spent countless hours praying and wishing for: Her peace. I am mentally happy that she is about to go home to a peace that we cannot comprehend. But, it's my mom and I am going miss her and feel a huge whole with her passing.
Surprisingly, this grief that I feel is almost comforting. I thought I would feel little but relief that my obligations are through. It's wonderful to know that some compassion remains that was not stolen by the cowardly thief that is Alzheimer's.
Tuesday, September 29, 2015
I thought I was ready...
No matter how much you've prepared, how much you think you're ready, sometimes it just sneaks up on you and whacks you upside the head. It's a hard whack, too!
Wednesday, September 2, 2015
You can pretend you did not see me...
It's been a long time since I've been here. I've thought about stopping by but wasn't sure what to say. It feels a little bit like running into an old friend at the grocery store. You wonder whether to speak or just pretend you didn't notice her. You were good friends so you decide to go ahead and say something and then instantly regret it. Too much time has passed. You both talk about the kids, the weather, anything that isn't too personal. You agree to catch up soon, knowing you won't do it.
This blog was the best of friends to me. It listened, without judgement, no matter what I said or when I said it. It was always here. But, it was about my journey through Alzheimer's. And, that journey took a detour that isn't as all-consuming as it once was. Mom is still in the nursing facility, still under hospice care. I had a meeting last week with the hospice personnel and her nursing staff. It was more of an update on her condition (same) and trying to find something that will comfort her. I wish I knew the answer to that question. I've wondered that for most of my life.
So, here I am trying to share the journey. But, now it is just about me. It all seems too personal. This blog, like the friend in the grocery store, just feels awkward. I should stop by and catch you all up to date. But, I think next time I might just pass by without stopping. Or maybe I'll ask you about the weather.
This blog was the best of friends to me. It listened, without judgement, no matter what I said or when I said it. It was always here. But, it was about my journey through Alzheimer's. And, that journey took a detour that isn't as all-consuming as it once was. Mom is still in the nursing facility, still under hospice care. I had a meeting last week with the hospice personnel and her nursing staff. It was more of an update on her condition (same) and trying to find something that will comfort her. I wish I knew the answer to that question. I've wondered that for most of my life.
So, here I am trying to share the journey. But, now it is just about me. It all seems too personal. This blog, like the friend in the grocery store, just feels awkward. I should stop by and catch you all up to date. But, I think next time I might just pass by without stopping. Or maybe I'll ask you about the weather.
Thursday, May 7, 2015
Just an update...
I've been trying to write something on here but the words feel forced. I guess I will start by updating Mom's situation and condition.
After being told that there was nowhere to place Mom, a caseworker finally suggested that they look for a hospice bed instead of a nursing bed. Within 24 hours she was placed into a facility. And just that quickly our lives changed.
Mom is doing well at the facility. The staff is attentive and kind to her. Her condition has definitely deteriorated since she left home in March, but I would still consider her strong. She looks frail and helpless at times. Other times she is as demanding and forceful in her wants as she ever was with me. For the most part, she is still eating well. The staff is efficient in getting her snacks between meals and takes her demands in stride.
Mom's placement has left me and my family with many more freedoms. No one has to stay behind and take care of Mom. We can do things as a family that we haven't in years. A simple thing like going to the movies is a reality for us now. It's wonderful. Not surprisingly, we've adjusted well to the freedoms.
Personally, it's been difficult adjusting to her being so far away and no longer being under my care. I miss her. I want to see her, but logistically, it is difficult to visit her often. When I do visit, I seem to agitate her more than comfort her with my presence. She isn't comfortable with displays of affection for more that a few moments at a time. She doesn't recognize me at all anymore. The visits are more of a check-up on her care than a visit to Mom. There is little I can do for her but be her advocate.
I'm having a hard time knowing what to do with my time. I find myself just sitting, thinking there are things to be done, but not having the energy or desire to do them. I'm feeling a little lost. I've applied for a few jobs, but, so far, no one is interested. I think that is adding to my apathetic attitude. I need to get up and move. Maybe I'll do that tomorrow.
After being told that there was nowhere to place Mom, a caseworker finally suggested that they look for a hospice bed instead of a nursing bed. Within 24 hours she was placed into a facility. And just that quickly our lives changed.
Mom is doing well at the facility. The staff is attentive and kind to her. Her condition has definitely deteriorated since she left home in March, but I would still consider her strong. She looks frail and helpless at times. Other times she is as demanding and forceful in her wants as she ever was with me. For the most part, she is still eating well. The staff is efficient in getting her snacks between meals and takes her demands in stride.
Mom's placement has left me and my family with many more freedoms. No one has to stay behind and take care of Mom. We can do things as a family that we haven't in years. A simple thing like going to the movies is a reality for us now. It's wonderful. Not surprisingly, we've adjusted well to the freedoms.
Personally, it's been difficult adjusting to her being so far away and no longer being under my care. I miss her. I want to see her, but logistically, it is difficult to visit her often. When I do visit, I seem to agitate her more than comfort her with my presence. She isn't comfortable with displays of affection for more that a few moments at a time. She doesn't recognize me at all anymore. The visits are more of a check-up on her care than a visit to Mom. There is little I can do for her but be her advocate.
I'm having a hard time knowing what to do with my time. I find myself just sitting, thinking there are things to be done, but not having the energy or desire to do them. I'm feeling a little lost. I've applied for a few jobs, but, so far, no one is interested. I think that is adding to my apathetic attitude. I need to get up and move. Maybe I'll do that tomorrow.
Wednesday, March 25, 2015
No more hoops...
Mom is still in the hospital. And we are still searching for a home to place her long term. The decision to place her was much easier than the reality. From her having an insurance that is not accepted by most facilities, to government agencies failing to do their jobs (which prevents me from changing her insurance), finding a bed for her anywhere within a 2 hour driving distance has been a difficult task.
Yesterday, was a series of highs and lows, mostly lows. They found a place for her in a facility that I do not like. But, the alternative is bringing her home to an ill-equipped, untrained, and desperate person to care for her. For many reasons, in home help is not an option.
Just as I had resolved myself to the non-choice, the insurance case worker called and said that the space for her was no longer available. Add to that the fact that Mom's case worker for Medi-Cal still has not updated the system to reflect that I am Mom's legal representative (after signing the document 3 years ago and a request 3 months ago to correct the oversight) which leaves Mom without a voice. I cannot make any changes to her insurance to make this move easier.
I spoke to a woman yesterday who has been caring for her Alzheimer's mother for 13 years. She needed Social Security to help her resolve something at her mother's bank, only to be told that they could only speak to her mother. They did not recognize the legal documents that she has that has made her the voice of her mother for the past 13 years. The woman had to get a lawyer involved to resolve the issue.
How many families are forced to go through this? How many loved ones are being held hostage by a system that is broken and has no compassion for the very people it is supposed to protect? Being a caregiver is difficult enough without having to jump through never ending hoops to do it.
Yesterday, was a series of highs and lows, mostly lows. They found a place for her in a facility that I do not like. But, the alternative is bringing her home to an ill-equipped, untrained, and desperate person to care for her. For many reasons, in home help is not an option.
Just as I had resolved myself to the non-choice, the insurance case worker called and said that the space for her was no longer available. Add to that the fact that Mom's case worker for Medi-Cal still has not updated the system to reflect that I am Mom's legal representative (after signing the document 3 years ago and a request 3 months ago to correct the oversight) which leaves Mom without a voice. I cannot make any changes to her insurance to make this move easier.
I spoke to a woman yesterday who has been caring for her Alzheimer's mother for 13 years. She needed Social Security to help her resolve something at her mother's bank, only to be told that they could only speak to her mother. They did not recognize the legal documents that she has that has made her the voice of her mother for the past 13 years. The woman had to get a lawyer involved to resolve the issue.
How many families are forced to go through this? How many loved ones are being held hostage by a system that is broken and has no compassion for the very people it is supposed to protect? Being a caregiver is difficult enough without having to jump through never ending hoops to do it.
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