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.
Wednesday, September 30, 2015
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.
Friday, March 20, 2015
It was just misplaced...
Mom has pneumonia. Again. This is the third time and the second time that she has been hospitalized. And I just have to say it, having her hospitalized is more tiring than having her home.
Every doctor that comes in contact with her asks me the exact same questions over and over. I want to place a sign on my forehead that says, "Read her chart!" I could understand the curiosity if it was something that wasn't there. But, calling me a 4:00 am to find out what medications she's on (that are listed in her chart) seems a little ridiculous to me. Just a little.
And each doctor has a different answer for my questions. One in particular is "Does she have Congestive Heart Failure?" I have received these answers, "Yes. It was diagnosed during her stay in November.", "No.",
"I don't know.", "I haven't researched it." "With the instructions to not extend her life with any extra measures, it isn't important at this stage.", and, "Yes, she does." Well, as long as we can all agree.
But, one of the good things that I've found in all of this is my compassion. It would be very difficult to see anyone lying in a twisted fetal position and sobbing and not feel at least a twinge. When it's my mother, it breaks my heart. I tried to talk to her while holding her hand as much as possible, but she kept clawing at me and twisting my fingers until I had to pry my hands away and tell her that she was hurting me. I cannot even imagine what is going on in her mind. It must be horrendous. I know it is devastating to watch.
The next step is to find a place for her that will help her find comfort and some peace. I am content with the decision to allow others to care for her because I cannot.
Every doctor that comes in contact with her asks me the exact same questions over and over. I want to place a sign on my forehead that says, "Read her chart!" I could understand the curiosity if it was something that wasn't there. But, calling me a 4:00 am to find out what medications she's on (that are listed in her chart) seems a little ridiculous to me. Just a little.
And each doctor has a different answer for my questions. One in particular is "Does she have Congestive Heart Failure?" I have received these answers, "Yes. It was diagnosed during her stay in November.", "No.",
"I don't know.", "I haven't researched it." "With the instructions to not extend her life with any extra measures, it isn't important at this stage.", and, "Yes, she does." Well, as long as we can all agree.
But, one of the good things that I've found in all of this is my compassion. It would be very difficult to see anyone lying in a twisted fetal position and sobbing and not feel at least a twinge. When it's my mother, it breaks my heart. I tried to talk to her while holding her hand as much as possible, but she kept clawing at me and twisting my fingers until I had to pry my hands away and tell her that she was hurting me. I cannot even imagine what is going on in her mind. It must be horrendous. I know it is devastating to watch.
The next step is to find a place for her that will help her find comfort and some peace. I am content with the decision to allow others to care for her because I cannot.
Tuesday, March 10, 2015
I must choose to change mine...
My previous post was about judgement from the outside. This post I'm going to talk about the judgement that comes from within me.
Somewhere along this journey, I lost some valuable things (and I don't mean my credit score). I have lost my compassion and my patience.
So, where did they go? How can I look at what my mother has become and not feel compassion? That's an easy question for me to answer. It's because I don't have any patience left. Those two virtues normally go hand in hand. The compassion for another living being demands that you respond with patience. The patience allows you the time to find compassion. Neither is worth a darn if you don't have the other.
How many times must I clean disgusting things from walls and finger nails and clothes and linens, only to have to clean them again before I have her completely dressed again? Today it was four times within a 30 minute period. 20 minutes into which I had already left my daughter standing across town waiting for me. 30 minutes of disgust and a person who can't follow any instructions, much less something as simple as "Don't touch that" or "Stand up". Yes, my mind knows that she is sick. But, my patience is trying to contain a mess that is beyond my tolerance level. The patience is gone and the compassion is dead.
I recently watched someone deal with Mom with nothing but kindness. Mom responded, for the most part, with what I would consider calmness, at least in comparison to her normal behavior. I watched these 2 interact for almost 45 minutes. I walked away from that interchange feeling like the stuff I am forced to clean up too often these days. How much of the behavior I receive from Mom is a direct result of the impatience that I give her?
I see videos of Alzheimer's victims and they aren't like Mom. I know that if you've seen one Alzheimer's patient, then you've seen one Alzheimer's patient. They are all different. But, Mom is so very angry and bitter. Mom is never happy. She screams at me that I haven't fed her for 3 days as she is chewing her food and after I've spent a half an hour coaxing her to eat the food. I spend the majority of my time ignoring her or drowning her out. How shallow am I that I want my Mom to be nice to me? To recognize that I've done all that I can?
I know she cannot do either of those things. As I said at the top of my page, "She cannot change her behavior, therefore, I must choose to change mine." The part of me that can still be fair, knows that I can do better. It knows that I can be kind. And, I believe that this won't be over until I've found the patience to allow compassion back into my heart.
Somewhere along this journey, I lost some valuable things (and I don't mean my credit score). I have lost my compassion and my patience.
So, where did they go? How can I look at what my mother has become and not feel compassion? That's an easy question for me to answer. It's because I don't have any patience left. Those two virtues normally go hand in hand. The compassion for another living being demands that you respond with patience. The patience allows you the time to find compassion. Neither is worth a darn if you don't have the other.
How many times must I clean disgusting things from walls and finger nails and clothes and linens, only to have to clean them again before I have her completely dressed again? Today it was four times within a 30 minute period. 20 minutes into which I had already left my daughter standing across town waiting for me. 30 minutes of disgust and a person who can't follow any instructions, much less something as simple as "Don't touch that" or "Stand up". Yes, my mind knows that she is sick. But, my patience is trying to contain a mess that is beyond my tolerance level. The patience is gone and the compassion is dead.
I recently watched someone deal with Mom with nothing but kindness. Mom responded, for the most part, with what I would consider calmness, at least in comparison to her normal behavior. I watched these 2 interact for almost 45 minutes. I walked away from that interchange feeling like the stuff I am forced to clean up too often these days. How much of the behavior I receive from Mom is a direct result of the impatience that I give her?
I see videos of Alzheimer's victims and they aren't like Mom. I know that if you've seen one Alzheimer's patient, then you've seen one Alzheimer's patient. They are all different. But, Mom is so very angry and bitter. Mom is never happy. She screams at me that I haven't fed her for 3 days as she is chewing her food and after I've spent a half an hour coaxing her to eat the food. I spend the majority of my time ignoring her or drowning her out. How shallow am I that I want my Mom to be nice to me? To recognize that I've done all that I can?
I know she cannot do either of those things. As I said at the top of my page, "She cannot change her behavior, therefore, I must choose to change mine." The part of me that can still be fair, knows that I can do better. It knows that I can be kind. And, I believe that this won't be over until I've found the patience to allow compassion back into my heart.
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