Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

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.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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!

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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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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.

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@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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@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.

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@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

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@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.

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@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.

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@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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<br> <br>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?

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@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.

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@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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