Follow
Share

I've read many, many of the helpful articles here on this website (thank you!!), but want to better understand what might be going on with my parents, emotionally. He's 89, she's 87. He has all the hallmark symptoms of Lewy Body Dementia, but no official diagnosis. Mom has short term memory loss, but seems pretty sharp. They went from fully independent, living in their own apartment to Dad being hospitalized twice, rehab stays and now we've moved them to a beautiful, supportive Assisted Living home. We feel so lucky to have gotten them a spot in a small facility that is really like a home. Dad has quickly gone downhill since his original hospitalization in May. I realize their difficulty, but cannot fully grasp the sadness they must feel. My biggest question, and maybe no one or any book or article can answer---do you think that they are somewhat unaware of the many changes? Because of Dad's incontinence and inability to go without a wheelchair, Mom doesn't want to venture out. I want them to enjoy their last years, but they seem so sad. I'm certain that there must be some depression based on the fact that they are just that--"in their last years." Are there books that help me fully understand what they must be feeling? They aren't talking about it. Not from the 'talking' generation. :(

This question has been closed for answers. Ask a New Question.
I haven't found any books but this site has great advice. My dad is in the nursing home and what makes him happiest is visits from us -sometimes we sit and watch baseball together, or play a simple dice or card game. Otherwise, we bring in photo albums and remember the fun in the past.

Your parents might not be up for making new memories but could you enjoy the past together?
Helpful Answer (6)
Report

I’m unsure about books, but many people on this site recommend YouTube videos by Teepa Snow. I’ve never watched one, but I understand they’re very helpful.

I know from experience that it’s very difficult for Seniors to accept that “this is it.” Television ads about medications for every malady that work wonders, that show Seniors travelling to wonderful locations and having simply marvelous times, Seniors chasing their grandchildren around a beautifully manicured yard or stunning home, Seniors sharing meals, laughing and cracking wise with great friends, well-dressed, coiffed and manicured couples at upscale fancy restaurants dining on gourmet meals...well, you get the idea. It’s depressing to realize that things like that will never happen for them, and in my case, I’m lucky if I can make it across my small and ordinary home without the arthritis kicking in.
What I’m trying to say is that perhaps your parents are TOO aware of what’s going on. I’m sure they appreciate the nice place you’ve found them to live, but my husband is bedridden and incontinent and we go nowhere. I understand your mom not wanting to venture out without him. Travel with a handicapped and incontinent person is challenging at best. You need special equipment, physical strength and rely on the kindness of strangers. She may be concerned he will “act out”. I am a sports fan and a few months ago, hubby kindly suggested I go to the neighborhood watering hole and watch a certain game I’d been looking forward to. I know I looked at him as if he’d suddenly sprouted horns. In my generation, women didn’t frequent bars alone. Not “nice” women anyway.

You sound like a very kind, concerned and caring person. After a while of settling in, your parents may open up or make comments about how they feel and give you insight. Be cautious about how you answer. Don’t build up the facility and try to convince them how absolutely wonderful it is. To them, it’s not their home and their life has done a 180. They’d probably give anything to go back 50 years and it’s very, very sad for them to realize that’s not going to happen. Be supportive and upbeat. I think you already are.
Helpful Answer (10)
Report

Lately my parents are having a very bad behavior at home, and I think it is because They feel a huge frustration of not being able to do all the things they liked to. They used to have a very entertaining life, They liked to have an active social life, their house full of friends and relatives, They enjoyed going to the beach, going to the mountains to ski, going to restaurants, driving their car, having lots of pets at home and so on, and they keep doing plans every day, but they fall into frustration very often, when they realize that all they can do now is stay at home watching tv. ( Mother has advanced cancer and father has dementia). I can feel they are aware of how frustrating this is for them, and that causes the bad behaviors at home too.
Helpful Answer (7)
Report

Ceecee, hugs.

Remember this first: "when you've seen one person with dementia, you've seen one person with dementia." Wider reading is generally a good idea, it can be generally enlightening and it can give you perspective, but it can't tell you a dam' thing about your own mother and dad.

Even if your parents aren't big talkers (and I'm not sure it is a generational thing. Let's wait 'til we get to that stage and see how much we still want to open up to clueless whipper-snappers in their forties and fifties), they are still the only source of information you have about how *they* are feeling. All you can do is be there with them and hold tight.

Still, I'd never want to discourage reading! - goodreads-dot-com has a listing for "Popular Dementia Books." You might like to have a browse there.
Helpful Answer (8)
Report

ceecee, what a kind question. Someone on here recommended Being Mortal by Atul Gawande, I read it and got a lot out of it. It’s not going to seem exactly spot on to your query, but it could be a good fit - “what matters” to people winding down. He’s a very good writer, which helps. Bless you and your parents!
Helpful Answer (3)
Report

Have you read Roz Coast's " Can't we talk about something more pleasant?". It's written from her (the daughter') vantage point but I think she does a good job of portraying her parent's sadness and frustration. Also "A spool of blue thread" by Anne Tyler.
Helpful Answer (6)
Report

THE 36 HOUR DAY  is a great book.
Helpful Answer (3)
Report

Roz CHAST, not Coast!
Helpful Answer (1)
Report

My Name Is Thelma but I Don't Know Who I Am. by Jan Malone
Helpful Answer (0)
Report

Teepa Snow!
Just bought Being Mortal but haven't started reading yet.
Hugs ceecee 💜
Helpful Answer (2)
Report

The 36 Hour Day, Nancy Mace & Peter Rabins

It was indespensible to our family and several others inour church family
Helpful Answer (1)
Report

Ceecee65: There are so many books in reference to your post. Below is one--
"You and Your Aging Parent: A Family Guide to Emotional, Social, Health, and Financial Problems." It can be purchased on Amazon. And while I certainly know how difficult it is to watch your elderly parents face changes, this site is a wonderful support system for YOU. Big Hugs ((( ))).
Helpful Answer (1)
Report

Two books that have been most helpful for my journey with my wife and her Vascular Dementia. Donald Zoller - This Ugly Disease - written from the perspective of: A Caregiver's Journey into Pain, Anguish and Hope.
Charles W. Shepson - Hidden Manna For the Caregiver - written from the perspective of having his first wife die with dementia and now married for the second time to live his later life with her. These have been an encouragement as well as instructive for my later years with my being very healthy and my wife struggling while having many other health issues besides her mind. I also really appreciated the book: The 36 Hour Day. Different perspective but authoritative.
Helpful Answer (0)
Report

Teepa Snow is an excellent resource. Also contact your local chapter of Alzheimer's Assoc.
Helpful Answer (0)
Report

I thought "Still Alice" was useful. Can't remember which I liked better, the movie or the book. She is portrayed as a rather high performing professor with early onset Alzheimers so maybe this is not as fitting as elderly parents who realize it's only going to get harder. But I think we all have to live for today.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter