Does anyone have someone their caring for have any interest in what they have

charley0419 · October 12

just curious if anyone taking care of loved ones if they ever ask about this illness and what it’s all about and out come

SDianeL · October 12

please rephrase the question. Are you asking if our LO asks about them having dementia? If so my husband asked me once if he had it and I said yes but we were going to be OK. That’s really all he wanted to know. After that I never mentioned it again and neither did he.

sandwichone123 · October 13

Most of our loved ones have moved past understanding that they have Alzheimer's, dementia, or even trouble understanding the world. My dh understood that he had Alzheimer's when he was first diagnosed, but within several weeks any mention of the term would upset him. We just stopped talking about it. After he'd been living in memory care for a few months he'd ask me about what we were going to do in our old age—we'd live a long time because, in his view, we were "so healthy."

Quilting brings calm · October 13

Mom heard the word dementia at the doctor’s office multiple times but she never understood that she had it- just went in one ear and out the other. She would sometimes comment on being confused. I just always replied she had memory issues due to her age. She never questioned it.

H1235 · October 13

Mom remembers she was diagnosed with dementia. At diagnosis she figured she was in the very very early stages. So she still didn’t understand why she couldn’t mow her lawn or live alone. She would often ask for information on dementia which I would give her. But then 6 months later she would ask for information again (forgetting I gave her anything) and accuse me of trying to keep things from her. After a year an a half she told me the doctors didn’t know what they were doing, said she lied when being evaluated. Thankfully she doesn’t mention it much anymore. The other day she did say I hope I never get that bad, when referring to someone in the nursing home who was farther along than her. But then she told the hairdresser she was only there temporarily (I never told her that). In general she doesn’t see herself as confused or forgetful, she tends to blame it on someone or thing else.

ARIL · October 13

My dad asked me on Saturday if I knew what was wrong with him. I spoke slowly and in a calm voice (I have found that my tone is key). I said that when he sees his doctor, the doctor does tests and finds that he has several problems that we have known about for years. I mentioned anemia and the iron supplements he takes to help with that. And so on.

I got to a point where I said something like “I think the biggest difficulty you have right now is that it is hard for you to remember things.” He agreed that is a problem. I said he is very old, and many people of his age have this problem. I said that there is no cure but I am helping him to manage it, and he will be all right.

I am sure he had forgotten the question before we got to the end, but the information was not the real point. My main goal was to show that I am keeping on top of the facts, I talk to his doctor, and the doctor and I (and the facility staff) care about him and will help him. Mainly the point was to show that I take his concerns seriously, and I have a calm answer to give. He can trust me. He is loved. He is not alone. Those are the messages that matter.

Sometimes I have answered questions like this with more information: “You have a disease that causes your brain not to work as well as it used to.” I compared neurons in the brain to electrical circuitry (as a young man he was trained as an electrician), and said that sometimes the circuits are completed, and sometimes they aren’t. I said that his doctor knows about it, and we are all here to help him.

Other times when the question feels more offhand, I have said, “Well, you’re really old!” He laughs and says, “How old am I?” and we go from there into a different conversation.

The reasoning ability declines and fails; emotional ability lasts a whole lot longer—for many (most?) people, right to the end.

All that said, every person WD and every relationship is different. What works for me may not work for you. But the emphasis on providing comfort can transcend individual experience.

Wishing you the best!

Maru · October 13

My DH was diagnosed a year ago in May. He is now approaching stage 4. He was initially releived by having a reason for the memory losses that had been taking place. I am not sure how much he understood about ALZ at that time but since then has no interest in finding out what he can expect down the road and lives in a bubble. He thinks he is fine except for a few memory glitches. He is always shocked when the neurologist asks me what I have been seeing.

As stated by others, what the LO knows or understands is not so important (and certainly depressing so why burden them). What is important is that they know you (or someone) will be there with them and will love them and care for them.

JulietteBee · October 14

Interestingly, my mom & I are both RNs. She is my pwd. Initially, she hated when I used the word, so I stopped. Some time later, I came across handwritten notes she had taken from her medical-surgical books. Bless her heart! It seems she is silently and in her own way trying to process what is going on with her.

Arrowhead · October 15

My wife must have known she was having problems because she tried her best to hide her symptoms.

Does anyone have someone their caring for have any interest in what they have

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