Introductions: Are you caring for someone with dementia?
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 husband's brother has FTD Dementia with Aphasia and it has become exponentially worse over the last three years. He's only 68 and the signs began 10 - 15 years ago. We didn't know what it was until he ended up in the ER two months ago. He spent 8 weeks in the hospital and last week we moved him into a memory care community close to us. We are his primary caregivers (I'm now his legal guardian and conservator). The hardest parts right now is that he's depressed - sleeps most of the day and only leaves his room twice a day to eat, he won't shower or change his clothes, and because of his loss of language it's very hard to talk with him. He has an extremely limited vocabulary so he doesn't understand our words, and he only has a few words to express how he's feeling. It's so very very sad.
Thanks Scott, I'm new to this and looking through posts has helped me to remember things that were said to me to help me care for my husband. He can turn from the man I knew for 0ver 68 years to an angry person that I cannot reason with and then he gets calm and loving. So many things I need help with. He doesn't want to socialize , take walks-just if more content to stay at home. He is almost blind, has cancer and prostate problems.
You sound like a strong woman, full of courage. Your positivity amidst the trials struck a chord. Laughter…we’d both enjoy hearing that again.
Your reminder of the impact of change was helpful. As we look into moving to a CCRC (Continuing Care Residential Communities) the changes are especially noticeable. There seems to be a short window of time between “it’s okay” and resistance. Thank you for sharing.
How difficult to experience the emotional ups and downs and maintain your inner strength. Per your comment about helpful reminders from other posts, I’m going to do the same. Thank you.
@denisefrey You have certainly taken on a huge job! I certainly respect you for doing so. As a nurse who dealt with many elderly patients and those with dementia, I can say that what your brother in law is going through is pretty common. When you think about it, he went from his home to 8 weeks in a hospital (which is constantly busy with lots of people), then to another new place. But he should adjust with time. ( Just a hospital stay of a few days can cause disorientation and confusion.) Put lots of his personal things in his room to help him feel at home.
You’ve done a wonderful thing for your BIL and in time it will be OK.
Thank you for this insight. Staying in the hospital 8 weeks would be hard for anyone. This is the first time we've known anyone with dementia, so there are many things to learn!
Thanks for your reply. Your words made me feel better
Thank you for sharing as one of the frustrations you named is becoming a growing one for me: what my husband can do in front of others is at odds with what he can do at home. Often, I find people negate my concerns since he appears fine. Not being validated is another silent, yet exhausting piece of walking through the disease.
What I find interesting is that my husband constantly repeats at home. When we go to visit my sister and have dinner there, he becomes very quiet (which is not like him) but it's as if he controls himself. The minute we are home it starts again- what time is it, what day is it etc etc.