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Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom’s caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife’s years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer’s Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

REPLY

My Mom loves babies and small children as well, but she has little interest in the baby dolls? She holds the head and move it over her work bench like she is writing with it! I’m not sure why! I find myself looking at the children’s toys at stores…have to watch the small items now though, Mom has started to put things in her mouth! Crayons are out of the question now, she has tried to eat them!!
The day care Mom goes to has people in her condition to varying degrees, but they also have people younger, and some with physical difficulties. There is one guy there that the workers there think he thinks Mom is his Mother! You might want to consider a day care option sooner rather than later, if there is one near you. Sooner would allow your Mom to establish a social network there while she is more alert. My Mom is NOT communicative, at least not much, but these people recognize each other and miss someone when they miss a day.

I don’t know where you are as far as incontinence goes, but once there, get dog poop bags to contain the soiled items, it keeps the odor down! I have obtained a Hospital type bed for Mom and a lift recliner as well. She can’t use a walker any longer, we have to pick her up and hold her hands to walk her around the house. I’m not sure how much longer she will be able to walk at all, she is winded walking between the living room and her bedroom!

It’s all trial and error!

Liked by macbeth, sallysue

@colleenyoung

Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too.

Julz, great tips about moving your mom to your home, about music and giving her a view of the street activity and so much more. Interesting that in sharing these ideas you put into action help you realize how adept and creative your are. That is the power of writing and sharing in a community like this one. We can so often get caught up in the constant reacting to the needs of the person that we care for that we overlook our accomplishments, especially since the needs constantly change.

PearlandPeacock, you’ll have read in this discussion that a few other members like @IndianaScott @lindabf @rmftucker and @macbeth have experienced a long period of their partner being undiagnosed and denial. Has your husband now been formally diagnosed? You have a great group of people here who understand the frustrations. Please feel free to share and vent as needed.

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Thank-You. Yes he has been formally diagnosed and tested. He is on Aricept and Mementin. There’s something experimental, AZT-100 or something, I’d like to get him in that program. He can still draw the numbers on the clock test reasonably well, but not the hands. He is scoring 18 now, middle stages. Other than the Alzheimer’s he is in good health. He is still continent. The doctor said I should put him on the list for long term care home as the wait for nice ones can be awhile so I did. It is hard, but I couldn’t handle him if he were incontinent.

I told him to tell me if he’s going out, and where, he said if he has to tell me his every move it’s like jail! I get it, I imagine it would be. So far he doesn’t go very far, just around the block.

As others have said, weirdly, he likes small children. Well, I guess their mental age is like a child. He gets disoriented in our own house. It’s strange, something about orientation in his brain is gone. Oh, and the time clock, gone.The doctor said that’s memory! He makes childish comments, likes hot dogs and breakfast cereal and ice cream. But I want someone adult to talk to, thanks for the forum.

He follows me around, and if he loses sight of me, he has to look around, 360 degrees, till he spots me. But he can hear where my voice is coming from. That time he lost facial recognition of me, I said can’t you recognize my voice, he said yes. He has always been very emotionally distant, very shy, and that personality trait doesn’t help. I said to the doctor sometimes it’s hard to tell what’s just him and what’s the Alzheimer’s. Yesterday he started passionately cuddling me, kind of like normal, LOL!, but I realized it was part of his long term memory.

@macbeth What you describe sounds like my husband. I also think he’s had it for 6 or 7 years though formally diagnosed only three years ago. It was slow at first but the past couple of months it seems more rapid. I do want him on another drug, the experimental one. It is scary for me and I guess for him, though he is in denial. He can’t fill in a form, he puts the info in the wrong blank, etc. And he asks to go home when we are at home. I am his sole caregiver. He likes to go for drives. Once he drove me around, now the role is reversed. I try to go out everyday. I like to shop, so that’s mostly what we do and he follows me around and I talk to (or at) him but he never really listens. But then he never did!

The other day while shopping he got disoriented and wanted to take the bus home alone, he asked and was provided directions by a stranger who probably didn’t detect any problem. (I was observing from afar.) I had to convince him to stay with me as we were way out in the suburbs.

I am grateful that I was offered in home relief for 20 hours a month!

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Yes my husbands father, whom I never met, had it 60 or so years ago, It wasn’t even diagnosed. Richard (my husband) told me about his dad, how he was “crazy” and couldn’t remember things from one minute to the next, etc. years ago, and the paranoid hallucinations his father had. For example, he thought his wife, Richards mother, was sleeping around…he probably got this notion ’cause she did have a child out of wed lock (in the late 30’s), Richards half brother. His father would lock her in the house, the poor woman, and back then she didn’t know what to do about it, she was timid and shy and there wasn’t the help for abused women. At first I thought his dad had brain damage from chemicals as he was a miner before he retired to the city, married and bought an apartment building. But now it makes sense. His dad had fairly early onset Alzheimer’s. I wonder if chemicals may have contributed to it?

It seems to be common now, just wondering if modern environmental factors contribute? Or maybe people are living longer. My own Dad is 88 and has NO signs of it, though.

@pearlandpeacock

@macbeth What you describe sounds like my husband. I also think he’s had it for 6 or 7 years though formally diagnosed only three years ago. It was slow at first but the past couple of months it seems more rapid. I do want him on another drug, the experimental one. It is scary for me and I guess for him, though he is in denial. He can’t fill in a form, he puts the info in the wrong blank, etc. And he asks to go home when we are at home. I am his sole caregiver. He likes to go for drives. Once he drove me around, now the role is reversed. I try to go out everyday. I like to shop, so that’s mostly what we do and he follows me around and I talk to (or at) him but he never really listens. But then he never did!

The other day while shopping he got disoriented and wanted to take the bus home alone, he asked and was provided directions by a stranger who probably didn’t detect any problem. (I was observing from afar.) I had to convince him to stay with me as we were way out in the suburbs.

I am grateful that I was offered in home relief for 20 hours a month!

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@pearlandpeacock
I would be very interested in a little more information on the experimental drug you have mentioned. The name of the drug would be sufficient, so I could look it up and ask the doctor about it.

I have never been told what stage my husband is in, at any point. All our doctors seem to do is ask me, every six months, or yearly, at his exams, what any health concerns may be, or, in the case of his neurologist, whether there are any changes.

Since my husband is still pretty “with it” much or most of the time, and still finds his condition depressing and frustrating, adult daycare would not work for him, either. I would like to find some sort of companion care.

If you get a chance, could you post the name of that drug?

Macbeth

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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@pearlandpeacock
My gut feeling is that chemical exposure has something to do with some of it. For example, Vietnam vets have had a higher incidence of ischemic heart disease (Agent Orange exposure). Since there is nothing in the makeup directing that specifically toward the heart, it could build up anywhere in the body, including the small blood vessels to the brain. That’s my gut feeling about what is happening to my husband. With my father, if you put it on a graph, with year one on the left, and year 11 on the right, the decline would be represented by a pretty straight line from the upper left corner, to the bottom right corner. In my husband’s case, of course, there is no end year, but the line from the upper left corner would show a much slower, much less direct decline, and rather than being straight, it would be very wavey, until recently, when the waves have turned into more like jagged lines, much closer together, with deeper lows.

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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That is a great way to describe things. Thank you for helping us on our journey.

@pearlandpeacock

My husband is in middle stages now, and in retrospect I think he has had it for some time. He never communicated with me well, so it was hard for me to detect, and I guess I didn’t want to believe it. His mother had it but she was close to 90 years old and passed at 93 in 2002. I think the real clue was/is that his dad, who was quite a bit older than his mom, had it too, way, way back, in the 50’s and I think his dad got it early but it went undiagnosed, he was just “mean” and “crazy”. His dad passed at 69 I think in about 1963 or so. My husband is 77 now. I am quite a bit younger. It is very hard. He is in denial. I get very frustrated.

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Hello,For the past few days I have been following your comments. Your experiences are what I too am and have experienced.I would like to join the chat group but can not figure out how to get into it. When I hit reply, I come back into one of your comments. Can you guide me?

Liked by macbeth

@pearlandpeacock

My husband is in middle stages now, and in retrospect I think he has had it for some time. He never communicated with me well, so it was hard for me to detect, and I guess I didn’t want to believe it. His mother had it but she was close to 90 years old and passed at 93 in 2002. I think the real clue was/is that his dad, who was quite a bit older than his mom, had it too, way, way back, in the 50’s and I think his dad got it early but it went undiagnosed, he was just “mean” and “crazy”. His dad passed at 69 I think in about 1963 or so. My husband is 77 now. I am quite a bit younger. It is very hard. He is in denial. I get very frustrated.

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You’re in. This is us. Welcome.

@pearlandpeacock

My husband is in middle stages now, and in retrospect I think he has had it for some time. He never communicated with me well, so it was hard for me to detect, and I guess I didn’t want to believe it. His mother had it but she was close to 90 years old and passed at 93 in 2002. I think the real clue was/is that his dad, who was quite a bit older than his mom, had it too, way, way back, in the 50’s and I think his dad got it early but it went undiagnosed, he was just “mean” and “crazy”. His dad passed at 69 I think in about 1963 or so. My husband is 77 now. I am quite a bit younger. It is very hard. He is in denial. I get very frustrated.

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Hi @foxylady42, so great to have you back. I’m glad that you’ve been following along. Seems like the platform is confusing you a bit. Let me see if I can help.

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@colleenyoung

Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too.

Julz, great tips about moving your mom to your home, about music and giving her a view of the street activity and so much more. Interesting that in sharing these ideas you put into action help you realize how adept and creative your are. That is the power of writing and sharing in a community like this one. We can so often get caught up in the constant reacting to the needs of the person that we care for that we overlook our accomplishments, especially since the needs constantly change.

PearlandPeacock, you’ll have read in this discussion that a few other members like @IndianaScott @lindabf @rmftucker and @macbeth have experienced a long period of their partner being undiagnosed and denial. Has your husband now been formally diagnosed? You have a great group of people here who understand the frustrations. Please feel free to share and vent as needed.

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Dear pearlandpeacock,
Thank you for sharing a bit about your situation. I did want to express my concern about your husband’s “going out”. It seems as though, if he is turned around in your own home, that your husband will most likely become “turned around” in any setting, including a extremely familiar neighborhood. I understand completely having to deal with the frustration he’s expressing at your wanting to know when and where he’s going…but, there must be a way of “allowing” him some freedom in a setting where he won’t become lost. I even wonder if you could follow him from a distance? This is a difficult season when the person with Alz. still wants some independence and freedom, but really doesn’t have the ability to understand their limitations… I’m wondering if anyone else has suggestions about your situation?

@kmkm

Hi. I’m still not sure this is the correct way to start a new post or a new discussion question (thread) in the “Caring for someone with dementia or Alzheimers”group….But, I’ll give it a try 🙂

I’d like to ask for some suggestions or advice on how to best keep my mom “busy” or give her something to do during the day. She never had any hobbies except reading or being with friends. Both are things that she doesn’t do or cannot do anymore. I need to care for all the daily chores and business of running a household while caring for my mom. I’m grateful that she’s still physically strong and in good health, but her Alz. has limited her ability and interest in doing almost anything except watch T.V. or an occasional chore (which usually becomes frustrating and causes anxiety because she can’t remember how to do it or where things are. The result is that she’s often bored. We’re also limited by the fact that we don’t have use of our family car on most days so mom and I are home alone together. If you read my earlier posts you can see more details about our situation. Any suggestions? Thank you!

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Hello @kmkm. Nice to e-meet you here. I am Scott and I was a secondary caregiver for my MIL while she had frontal temporal dementia for 23 years and the primary caregiver for my wife during her 14 year war against brain cancer, during which she suffered from many dementia-similar symptoms.

I AM NOT A MEDICA PROFESSIONAL IN ANY MANNER, so I speak only from my limited experiences. In both my MIL and wife’s cases they craved routine and familiarity. While it can border on boring at first, it became much more soothing and comforting to them than not knowing what they had to ‘worry’ about anticipating as being next. I realize it can feel stifling to the caregiver, but in our case it was an important coping feature for the patients.

Also as something went from enjoyable to frustrating, such as a game or chore, I was quick to eliminate it from the schedule. My MIL loved puzzling. We had to move from huge jigsaws to preschool simple, then to none but it helped with keeping doing something for as long as possible and lessening the anxiety and aggravation. .

I would also suggest, as tough as it may be, if you have not had all the necessary ‘talks’ about any issues outstanding, last wishes, etc. be sure to do that ASAP. We did those with my wife and it made things immeasurably easier on the family. In my MIL’s case, the family was too deeply in denial and lost that chance. It made several things more difficult for them down the line plus some family members were left carrying issues with them beyond the grave, which is sad to witness now.

I wish you strength and courage!

@colleenyoung

Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too.

Julz, great tips about moving your mom to your home, about music and giving her a view of the street activity and so much more. Interesting that in sharing these ideas you put into action help you realize how adept and creative your are. That is the power of writing and sharing in a community like this one. We can so often get caught up in the constant reacting to the needs of the person that we care for that we overlook our accomplishments, especially since the needs constantly change.

PearlandPeacock, you’ll have read in this discussion that a few other members like @IndianaScott @lindabf @rmftucker and @macbeth have experienced a long period of their partner being undiagnosed and denial. Has your husband now been formally diagnosed? You have a great group of people here who understand the frustrations. Please feel free to share and vent as needed.

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Hello @pearlandpeacock Nice to e-meet you here. As @colleenyoung said, I am Scott and while I am NOT any kind of medical professional, I was the primary caregiver for my wife (in our home) for 14+ years as she battled brain cancer with many symptoms of dementia and the last two being home hospice. I was also a secondary caregiver for my MIL, who had frontal temporal dementia for 20+ years.

First I wish you all strength and courage on your journey. It is not easy nor for the faint of heart, but you will find strengths you never knew were inside of you! Challenges will abound and some, or many, will exceed your strengths so do not feel bad when those happen nor expect to be able to ‘do it all’.

Many local Alzheimer’s Association state and local chapters offer a tracking option or local police offer grey registration for seniors with dementia. If you husband is advancing, his being out and becoming disoriented could be sudden and overwhelming. Does he have a medical alert bracelet so others might know? I do not know your geographic locale, but if it is big city or transient neighborhood, you may want to watch for someone taking advantage of his condition.

It may be worthwhile remembering that as one of our senses becomes compromised others can become more highly acute. This can cause changes in awareness, hearing, etc. during times of physical changes or mental adjustments.

My wife lost her stereo hearing so locating where sound was coming from was an early challenge for her.

While your husband may say things are feeling like a prison, you will need to be a bit of a warden for him. Your knowledge of what is safe and ‘doable’ will not always match his.

I wish you strength and courage!

Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can’t life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor’s for coffee. One couple drops by to check on us about once a week but the others may call and say “call me if I can do anything” and I am not the type of person to ask for help. Some days I just don’t want to get up and that is very weak and I know that.

@tntredhead

Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can’t life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor’s for coffee. One couple drops by to check on us about once a week but the others may call and say “call me if I can do anything” and I am not the type of person to ask for help. Some days I just don’t want to get up and that is very weak and I know that.

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Good morning @tntredhead. I hope this finds you having as good a day as the gods allow. First let me say this: YOU ARE NOT WEAK! No how! No way! You are in it everyday! I looked at my caregiving like a prizefight. A new round each day and I just never knew how long the fight would last. Just do your best each day. Some days it may just be answering the bell and being in the ring with whatever amount of energy you can muster. No one of us is Superwoman or Superman. No super powers either. Just fragile, real human beings. It is good to hear you have some AM and PM help! That is awesome!

I am sorry to hear about your rotator cuffs. I developed severe carpel tunnel in both hands from the repetitive lifting of my wife and still have pain and no feeling in my fingers as a result. My orthopedist wants surgery — I want some time in my life right now with no patients, even if it is me this time so I rationalize putting it off. I hope perhaps your GP can give you some advice on how to lift, transfer, etc. without doing any additional damage.

We, too, were isolated by my wife’s disease. That was a very challenging aspect of the caregiving for me as I am a very social fellow. Our neighborhood is nice, but it is made up of about 80% second, vacation homes, so neighbors came for vacation, not to help out even if they had been inclined, which they weren’t 🙂 The reality of caregiving is certainly no Lifetime movie, that is for sure!

I send you strength, peace, and courage — and remember sometimes courage is simply taking on our ‘fight’ for our loved one the next day!

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