I should have known that when I went back to work I would not be able to keep this up.
What a week!
Mom's been ill. We hope it's just a 72 hour bug but dad can't keep up. Still, mom tried to send the Visiting Angel home on Friday.
Our "spies" visited them yesterday. Dad was calling mom Evelyn and mom was calling our nephew Brian Roger and they were trying to make a phone call on the TV remote.
The family met last night to discuss things. I think we are all battle weary and depressed.
Sunday, April 17, 2016
Friday, April 8, 2016
A Tough Patch for the Family
Getting old stinks.
Long life runs on both sides of my family. Dad is the oldest remaining among his siblings and has three living brothers and sisters. Mom is the oldest remaining and has five remaining brothers and sisters.
In the past two weeks we have found out that mom's two brothers are either very seriously ill or under hospice care and dying. And dad's brother was recently diagnosed with colon cancer. That brother's youngest child was also diagnosed with stage four lung cancer.
Apparently, these realities are too much for dad to comprehend. Mom, who is struggling with memory and anxiety and other emotional issues, does understand and seems overwhelmed, which you might expect.
Tough patch--to say the least.
Long life runs on both sides of my family. Dad is the oldest remaining among his siblings and has three living brothers and sisters. Mom is the oldest remaining and has five remaining brothers and sisters.
In the past two weeks we have found out that mom's two brothers are either very seriously ill or under hospice care and dying. And dad's brother was recently diagnosed with colon cancer. That brother's youngest child was also diagnosed with stage four lung cancer.
Apparently, these realities are too much for dad to comprehend. Mom, who is struggling with memory and anxiety and other emotional issues, does understand and seems overwhelmed, which you might expect.
Tough patch--to say the least.
Monday, March 28, 2016
Spies
One thread in our dementia drama is that mom thinks that we are trying to take control of their lives. As a result, we know that she hides things from us.
Fortunately, our niece Stacy and her friend Stephanie, are very close to mom and dad and they visit regularly.
And, mom tells them things she withholds from the rest of us. So, Stacy and Stephanie serve as our spies. The girls visited on Saturday.
Here are some things they learned:
Dad often calls me Robert, the name of my dad's next youngest brother. More disturbingly, mom says that dad sometimes calls her by another name. We don't know what that name is.
Yesterday, he, apparently didn't know who Evie and I were, though he was very happy that those people stopped by to visit and he had a good time.
Fortunately, our niece Stacy and her friend Stephanie, are very close to mom and dad and they visit regularly.
And, mom tells them things she withholds from the rest of us. So, Stacy and Stephanie serve as our spies. The girls visited on Saturday.
Here are some things they learned:
Dad often calls me Robert, the name of my dad's next youngest brother. More disturbingly, mom says that dad sometimes calls her by another name. We don't know what that name is.
Yesterday, he, apparently didn't know who Evie and I were, though he was very happy that those people stopped by to visit and he had a good time.
Thursday, March 24, 2016
Caregiver Burden
One point on the rather complex diagnosis of my mother from the staff of the Alzheimer's and Memory Care Program is "Caregiver Burden."
There is evidence on her MRI of whatever it is that indicates Alzheimer's and of Vascular Dementia, which is dad's primary issue. In addition, there are realities that complicate her struggle including mild depression, anxiety and...caregiver burden.
When she and Evie and I met with the medical doctor who evaluated her, I made the point that her problems have gotten considerably worse as her stress in taking care of dad has increased.
I have to acknowledge that caring for a person with dementia is quite a job. Evie and I do it from a distance, we are twenty years younger and we are stressed.
And, what concerns me, especially for Evie, is how many years there may be ahead of us.
This will be a marathon. I'm not sure we are in shape.
There is evidence on her MRI of whatever it is that indicates Alzheimer's and of Vascular Dementia, which is dad's primary issue. In addition, there are realities that complicate her struggle including mild depression, anxiety and...caregiver burden.
When she and Evie and I met with the medical doctor who evaluated her, I made the point that her problems have gotten considerably worse as her stress in taking care of dad has increased.
I have to acknowledge that caring for a person with dementia is quite a job. Evie and I do it from a distance, we are twenty years younger and we are stressed.
And, what concerns me, especially for Evie, is how many years there may be ahead of us.
This will be a marathon. I'm not sure we are in shape.
Monday, March 21, 2016
Touring Assisted Living...Again
I know that the day will come that I'll look back on these days as the good old days. But even the good old days have their challenges.
When the doctors diagnosed dementia in both mom and dad, the rest of us began to push mom and dad into a commitment to move into the assisted living portion of the facility where they reside.
Prior to that, we kids had already toured it and were pleased with what we saw. And, on the day I broke my wrist, everyone but me went on a tour of the facility with mom and dad present. Word is that they loved it too.
So, after the diagnosis, we told mom and dad that the time had come for them to become serious about the move and they asked if they could at least see it first.
Harrumph.
We asked if they remembered going through it only a few weeks earlier and mom admitted that she did remember that a little. Dad said that he didn't even know what we were talking about.
So, we scheduled another tour with the saint of a woman who was willing to take a chunk out of her Sunday afternoon to give the tour again. She even arranged with a current resident to show us a unit of the type we would like to get for them--with a larger bedroom, so dad can do his "job" of looking through old bills and bank statements he has kept over the years.
The facility is very nice and the staff is pleasant and accommodating. Mom and dad are guaranteed the ability to be placed in assisted living there but will have to demonstrate the ability to pay for care for a period of time in order to be placed in the type of unit we want for them. They, of course, can't fill out the application, which is fairly complex. So, we are working on that now.
Oh. When dad saw the brace on my wrist, he asked what I did to my arm, for about the twentieth time. I know that some day he won't even be able to form coherent sentences so I'll take that as a plus.
When the doctors diagnosed dementia in both mom and dad, the rest of us began to push mom and dad into a commitment to move into the assisted living portion of the facility where they reside.
Prior to that, we kids had already toured it and were pleased with what we saw. And, on the day I broke my wrist, everyone but me went on a tour of the facility with mom and dad present. Word is that they loved it too.
So, after the diagnosis, we told mom and dad that the time had come for them to become serious about the move and they asked if they could at least see it first.
Harrumph.
We asked if they remembered going through it only a few weeks earlier and mom admitted that she did remember that a little. Dad said that he didn't even know what we were talking about.
So, we scheduled another tour with the saint of a woman who was willing to take a chunk out of her Sunday afternoon to give the tour again. She even arranged with a current resident to show us a unit of the type we would like to get for them--with a larger bedroom, so dad can do his "job" of looking through old bills and bank statements he has kept over the years.
The facility is very nice and the staff is pleasant and accommodating. Mom and dad are guaranteed the ability to be placed in assisted living there but will have to demonstrate the ability to pay for care for a period of time in order to be placed in the type of unit we want for them. They, of course, can't fill out the application, which is fairly complex. So, we are working on that now.
Oh. When dad saw the brace on my wrist, he asked what I did to my arm, for about the twentieth time. I know that some day he won't even be able to form coherent sentences so I'll take that as a plus.
Wednesday, March 16, 2016
Watching "The Alzheimer's Project"
THE ALZHEIMER'S PROJECT was a documentary series produced by HBO. It aired in 2009. Evie came across it in the library recently on DVD. So far, we've watched the first disc.
It's powerful.
The first episode shows people in each of the seven stages of the disease. We saw a woman very much like my mom. And, a man just a few micro steps further into the disease than my dad. The episode shows the death of a man at the end of the disease.
Another shows children dealing with Alzheimer's in their grandparents.
Another deals with caregivers.
I've already shed a bucket of tears but the experience has been good.
It's powerful.
The first episode shows people in each of the seven stages of the disease. We saw a woman very much like my mom. And, a man just a few micro steps further into the disease than my dad. The episode shows the death of a man at the end of the disease.
Another shows children dealing with Alzheimer's in their grandparents.
Another deals with caregivers.
I've already shed a bucket of tears but the experience has been good.
Monday, March 14, 2016
Now I am the Bad Guy
The medical practice that is caring for my parents' dementia doesn't classify people according to the classic seven stages, they use three categories: Early, middle and late. They put mom in the early category and dad in the middle.
Middle would correspond to stages 4 and 5 and I'd put dad in stage 5, probably closer to six than four. He still can form cogent thoughts, even if those thoughts are disconnected from reality. So...
...we had the family meeting I have described. In the meeting, mom was sold on the idea that they have to move out of their apartment into assisted living. In a comment that seems to identify where dad's mind really is, he said last week that they have everything they need in their apartment. In his best days, he didn't handle change well.
Well, mom has begun to prepare for the move and was cleaning out a closet yesterday and dad was beside himself.
He, of course, doesn't remember meeting with the doctors and seems to have only a fuzzy memory of the family meeting.
We talked to him yesterday and he said that he didn't understand what mom was doing in cleaning out the closet but he didn't like it.
And, he is going to do three things about it:
1. Call the newspaper,
2. Call the Veterans Administration, and
3. Call my brother to put things back in the closet.
What that means in context is that he sees my brother as the good cop and me as the bad cop.
Actually, I think my brother is more of a hard case in pushing for the move to assisted living than I am. But, that's where we are for the moment.
Middle would correspond to stages 4 and 5 and I'd put dad in stage 5, probably closer to six than four. He still can form cogent thoughts, even if those thoughts are disconnected from reality. So...
...we had the family meeting I have described. In the meeting, mom was sold on the idea that they have to move out of their apartment into assisted living. In a comment that seems to identify where dad's mind really is, he said last week that they have everything they need in their apartment. In his best days, he didn't handle change well.
Well, mom has begun to prepare for the move and was cleaning out a closet yesterday and dad was beside himself.
He, of course, doesn't remember meeting with the doctors and seems to have only a fuzzy memory of the family meeting.
We talked to him yesterday and he said that he didn't understand what mom was doing in cleaning out the closet but he didn't like it.
And, he is going to do three things about it:
1. Call the newspaper,
2. Call the Veterans Administration, and
3. Call my brother to put things back in the closet.
What that means in context is that he sees my brother as the good cop and me as the bad cop.
Actually, I think my brother is more of a hard case in pushing for the move to assisted living than I am. But, that's where we are for the moment.
Sunday, March 13, 2016
A Family Meeting
The family got together two nights ago, for the first time since we met with the physicians to receive their findings and recommendations.
Family meetings happen fairly often. We get together any time mom and dad ask us to. There have been times they have called and then forgot what they wanted to talk about by the time we arrived. But, this meeting was one in which we all agreed there was a need to chat.
We met to review the information the doctors gave us and to discuss what we were going to do to implement the recommendations.
I actually read the handouts we received, translating the doctor-speak into a form of the English language that mom, at least, could understand.
I was very careful to read slowly and to pause over the part that says that mom has Alzheimer's. I thought she needed to appreciate the reality. She did receive the information and then asked what it means to have Alzheimer's. We did our best to explain.
She is in the early stage of the disease and should be able to appreciate the magnitude of the situation but she reacted as if she was being told that she has the flu.
The doctors are recommending that they have more in home care until they can be placed in assisted living but mom is fiercely independent. She sees the home aid worker visits as a violation of her independence.
She doesn't always keep dad and herself on track with their medications but doesn't remember that problem as soon as it is resolved. This is potentially dangerous, of course.
We don't want to impose increased home aid on them but we also want mom and dad to be safe.
For the moment, we have compromised by increasing the visits from two to three each week. For me, this is an uncomfortable compromise.
We do what we can to give them a life they want to live while also imposing reality on their situation. This is walking a tight rope.
Family meetings happen fairly often. We get together any time mom and dad ask us to. There have been times they have called and then forgot what they wanted to talk about by the time we arrived. But, this meeting was one in which we all agreed there was a need to chat.
We met to review the information the doctors gave us and to discuss what we were going to do to implement the recommendations.
I actually read the handouts we received, translating the doctor-speak into a form of the English language that mom, at least, could understand.
I was very careful to read slowly and to pause over the part that says that mom has Alzheimer's. I thought she needed to appreciate the reality. She did receive the information and then asked what it means to have Alzheimer's. We did our best to explain.
She is in the early stage of the disease and should be able to appreciate the magnitude of the situation but she reacted as if she was being told that she has the flu.
The doctors are recommending that they have more in home care until they can be placed in assisted living but mom is fiercely independent. She sees the home aid worker visits as a violation of her independence.
She doesn't always keep dad and herself on track with their medications but doesn't remember that problem as soon as it is resolved. This is potentially dangerous, of course.
We don't want to impose increased home aid on them but we also want mom and dad to be safe.
For the moment, we have compromised by increasing the visits from two to three each week. For me, this is an uncomfortable compromise.
We do what we can to give them a life they want to live while also imposing reality on their situation. This is walking a tight rope.
Friday, March 11, 2016
Being of Two Minds
My dad is 90 and mom is 82. They have lived good and happy lives, much more than most people I know.
It's now true that they lack judgment to live wisely. Yet, they have very definite ideas about how they want to live, though the rest of us are absolutely certain that if they are left to their own devises, they are ultimately inviting disaster.
One of my minds wants to take over their lives and demand that they live sensibly. I know, though, that they will not be happy from moment to moment, though they will be relatively safe.
My other mind says that they are old and have earned the right to live however they please, even if, in the end, they will almost certainly make trouble for themselves.
It's tough, working out which path to follow.
It's now true that they lack judgment to live wisely. Yet, they have very definite ideas about how they want to live, though the rest of us are absolutely certain that if they are left to their own devises, they are ultimately inviting disaster.
One of my minds wants to take over their lives and demand that they live sensibly. I know, though, that they will not be happy from moment to moment, though they will be relatively safe.
My other mind says that they are old and have earned the right to live however they please, even if, in the end, they will almost certainly make trouble for themselves.
It's tough, working out which path to follow.
Thursday, March 10, 2016
Happy Go Lucky
Obviously, people with dementia go through stages of decline. But, the decline is not everything that happens.
My dad has been at a very nice place for at least the past four months. He is fascinated and pleased with everything he sees. His birthday is in late November. He turned 90. And, he really didn't understand the significance of the birthday but he loved the presents he received from members of the family which were really everyday things or gag gifts.
This past Christmas was probably our most joyful ever because he was elated that the whole family stopped by at the same time and he was given an old pair of shoes that had new soles put on them and an old wrist watch sporting a new battery. His innocent joy was powerful, touching and memorable.
Before this innocent gleefulness phase, he was in a different phase, one in which many of the people of the world lie, cheat and steal.
We love this version, obviously.
We know that he will decline and that his memory will deteriorate further and he will change but we will never forget this time. It is a wonderful gift that can never be taken away from us.
My dad has been at a very nice place for at least the past four months. He is fascinated and pleased with everything he sees. His birthday is in late November. He turned 90. And, he really didn't understand the significance of the birthday but he loved the presents he received from members of the family which were really everyday things or gag gifts.
This past Christmas was probably our most joyful ever because he was elated that the whole family stopped by at the same time and he was given an old pair of shoes that had new soles put on them and an old wrist watch sporting a new battery. His innocent joy was powerful, touching and memorable.
Before this innocent gleefulness phase, he was in a different phase, one in which many of the people of the world lie, cheat and steal.
We love this version, obviously.
We know that he will decline and that his memory will deteriorate further and he will change but we will never forget this time. It is a wonderful gift that can never be taken away from us.
Wednesday, March 9, 2016
Dementia Times Two
Yesterday our whole family met with members of the staff of Lancaster General Health's (formerly Hospital) Alzheimer's & Memory Care Program to hear their diagnosis of the condition of both of my parents and to receive recommendations for their care.
Both mom and dad have been diagnosed with dementia.
It is obvious that dad has had memory issues. In the past few months it became increasingly apparent that mom was having problems with more than the stress of caring for dad.
I am pleased with the way AMC has handled our case. In fact, on both occasions we met with them, they commented that our family is extraordinary. Yesterday, the psychologist who led the meeting explained that the way they were handling the meeting with us was "unique" for them because, as he put it to mom and dad, of the exceptional way they raised their sons. The truth is, however, that the real stars are the daughters-in-law. Roger and I simply married well. This makes me wonder what they see on a daily basis.
When we returned home last night, I was emotionally wasted. We received a lot of information yesterday and absorbing it will take time. At the moment, I am very concerned for mom. She was told directly, yet compassionately, that she has dementia and, probably, in the form of Alzheimer's. She is in its early stage. She also heard the recommendation that they move out of the independent living apartment that has been their home for ten years, something she has resisted with all her heart since we kids began pushing for it a few months ago. I think she felt ganged up on and hemmed in by the entire world yesterday.
One thing I have been struggling with for several years is what it means to obey the command to "honor" your father and mother, not merely to love them or obey them. That search for understanding takes on new meaning for me starting today.
Both mom and dad have been diagnosed with dementia.
It is obvious that dad has had memory issues. In the past few months it became increasingly apparent that mom was having problems with more than the stress of caring for dad.
I am pleased with the way AMC has handled our case. In fact, on both occasions we met with them, they commented that our family is extraordinary. Yesterday, the psychologist who led the meeting explained that the way they were handling the meeting with us was "unique" for them because, as he put it to mom and dad, of the exceptional way they raised their sons. The truth is, however, that the real stars are the daughters-in-law. Roger and I simply married well. This makes me wonder what they see on a daily basis.
When we returned home last night, I was emotionally wasted. We received a lot of information yesterday and absorbing it will take time. At the moment, I am very concerned for mom. She was told directly, yet compassionately, that she has dementia and, probably, in the form of Alzheimer's. She is in its early stage. She also heard the recommendation that they move out of the independent living apartment that has been their home for ten years, something she has resisted with all her heart since we kids began pushing for it a few months ago. I think she felt ganged up on and hemmed in by the entire world yesterday.
One thing I have been struggling with for several years is what it means to obey the command to "honor" your father and mother, not merely to love them or obey them. That search for understanding takes on new meaning for me starting today.
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