My good friend will soon have to go to AL, I think, but she’s just 61. It’s horrible for both her and her husband, as well as their two adult children. 
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That sounds terrible at such a young age. Can you elaborate as to the cause?
Yes, she has early onset Alzheimer’s. She started struggling several years ago. She got forgetful, then she started getting lost, like when she tried to come to our house. Her husband was in denial for quite awhile. There were four or five women from their church who were spending as much time as possible with her, but they had other responsibilities, of course. I started getting annoyed (using polite language here) at him. He would go skiing while someone was at the house with her, and they thought he was at work! Skiing and biking are this guy’s life - exercise is like breathing to him and I really think he literally couldn’t give either activity up.
The volunteer caregivers told him she couldn’t be by herself at all. He didn’t do anything. I first told him that gently, and he still didn’t listen. I was about to call Adult Protective Services, seriously, which would have destroyed our relationship, but I didn’t care. I finally took him aside and told him quite sternly he had to do something. I said, “Your sliding glass door is hard to open and close. J could go outside and not be able to get back in.” His response: “Oh, she knows where the spare key to the front door is!” When I said she shouldn’t use the stove, he said, “Oh, she knows that.” OMG. He kept talking about how expensive caregiving is (he’s told us how much he’s saved for retirement, so money isn’t an issue). I looked it up and gave him the info about applying for SS benefits (they’ve streamlined the process for early onset Alzeheimer’s patients). So he got her on that and FINALLY began employing caregivers. I think their daughter (who has a toddler and twin babies now) and church friends are still helping out, but I think someone is with her most of the time.
The last time they were at our house, a few weeks ago, he said she can no longer write at all and can read only some words. J was a journalism major, a very bright woman. It’s just breaking my heart. They have scrimped and saved their whole marriage for retirement and had plans to travel a lot. The husband mentioned recently, “The four of us should go to Europe together!” I just stayed quiet - there’s no way J could handle a trip like that.
J is aware of what’s happening to her. She’s known us so long that she’s still comfortable around us. We look at old photos and talk about the kids, but she asks the same questions about our current lives over and over again. It makes me cry.
Yes, it’s hard when we are asked the same questions repeatedly, as soon as we answer it’s asked again. I do try redirection and that helps sone but it’s so tough. Both have had dementia at least a decade, I believe. Dad passed in 2020, but was pretty isolated before he died. He would channel surf but not really understand anything he watched and we couldn’t talk about any of it. The TV was so loud because neither would wear hearing aids but both were pretty deaf.
It is much easier to just care for mom than the 2 of them. She tries to just go with the flow and is nearly always cheerful and definitely polite and grateful to everyone.
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An aunt just died at home. She was 98 and being cared for by an adult daughter and I’m guessing some caregivers.
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I am so sorry. That’s heartbreaking. Some forms of dementia are so very fast deteriorating mentally. In those cases (only from what I’ve read over the years) the most recent memories go first and so dwelling on old memories is all that’s left.
But keep going! It hurts you I know in so many ways knowing the “old them” but your involvement with them now makes them happy and part of life.
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Unfortunately I’ve been to 2 funerals this month, both men, both 69 and both suffered with early dementia.
One constant was the denial that I saw from both wives. One was a close neighbor and we saw his decline way before his wife was basically confronted that there was something really wrong. We thought that she was hiding his diagnosis but she was in deep denial.
One man was an officer in the armed services with a masters degree and the other graduated summa cum laude. So both bright articulate men.
I know in one case, there was great reluctance to bring in help or to go to a facility because of financial issues. It’s one thing choosing to put a loved one in a home at 90 but very different when they are 60. I know one wife was very afraid of being left destitute if they would have to spend their retirement money on a facility. The pandemic didn’t help anything.
We have another friend with Alzheimer’s who’s wife died and he’s been in a facility for 4 years, the body is strong the mind isn’t. Who knows how much longer he can live.
My in laws are in their late 80’s, my fil is having great trouble getting around. But my mil seems to think that they can do things and travel like they used to. I have my concerns but they aren’t my parents and my husband seems to be having problems coming to that conclusion. He does not like to confront them.
We traveled with my folks when they both had dementia and it was very very difficult. Changing venues was very hard for both of them, though both wanted to be with us. Dad was mad internet was poor in Yellowstone. He also was annoyed that the private tour to look at wildlife was so long (we paid for 2 8-hour tours). We offered to take him back to the lodge but he didn’t want to miss out so insisted on staying with us.
Both were incapable of properly packing for cold weather, hanging onto their important travel documents, handling the issues of airports and airplanes and lodging and getting from one place to another. After 2014, we stopped traveling with them. It was too hard for us.
My mom is 92 and has a strong body but has pretty much no short term memory. No idea how long she may live. She has survived her H and all her sibs.
My older sister and I believe you just become more whatever you are as your dementia increases and your filters go away. For dad, he just got madder as he got more confused. For mom, she just got sweeter and sweeter and more grateful for the kindness people are to treat her with. Older sis says she will work on being nicer so that when she gets dementia she will be nice like mom.
We are fortunate mom has assets so we will be able to hire whatever mom needs as her medical and other needs outstrip our ability to provide them.
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Like your sister, I too am working on being nicer so when I have dementia I will be sweet! But at 60 it may be too late 
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Aspiring to be nicer is always a good goal, especially in these uncertain and sometimes fraught times.
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I don’t know if that’s always true. My great-aunt was the sweetest person until she hit 85 or so. Then she got really grumpy and unpleasant. She wasn’t ill, so it wasn’t due to pain, either.
My mother became nicer to me; I lived several states away and wasn’t there when her dementia became apparent. She became much crankier with my two sisters who lived in town.
At the very beginning of her dementia, I would call her and she would tell me stories from her youth and early married life that I’d never heard. I really enjoyed those calls even though some of her stories were sad. I didn’t realize at the time, that her short term memory was declining and all she could call from memory were from her younger years.
Her interactions with my sisters were short. Short phone calls. Dropping off food or groceries and taking her to Drs. appointments. They also were the ones who had to remind her to take her meds, etc, but I also did that on my calls. Apparently, my mom wasn’t real appreciative of what they did for her. And my sister grew weary of of that and her snarking at them.
My sister once said, “It’s like we’re her daughters and you’re her friend.” I think my sisters resented that.
I was the fun daughter who took her on vacations and long phone calls with her and they were the ones who nagged her (from her perspective).
It caused a serious rift in our relationship when our mom died a few months later. I won’t go into that, but it was during Covid, so it was very painful.
I think they tend to get nasty with the person/people doing the most for them.
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There is an Asian couple at church that I see at Wed Mass - I will guess the wife is in her 70’s and her H may be a little older - by his appearance maybe 5+ years older. He has such bad dementia that he shuffles up to communion with her and she and the priest often have to instruct him to put the host in his mouth. He is very cooperative with his wife and she must just do everything with him 24/7. I am sure they have a routine that is very comforting for him.
Definitely. My sibs live out of the area, so I made sure to let them know in detailed emails my experiences.
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@CTTC I do the same thing- emails to siblings! Almost like a diary.
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We have a family sibling thread where we talk about our issues with mom. It’s pretty helpful and many of us post often in it.
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That’s nice. In my family I am the only one who posts
A resident’s family member tested positive. The resident and two table mates have now tested positive. Residents and visitors may have to go back to wearing masks. I never stopped wearing mine inside the facility.
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I felt so lonely as my dad’s caretaker. It was a terrible feeling.
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