Eldercare books that represent the reality

[Joules]

Someone in my family is considering moving an elderly relative with mild dementia from a AL facility into their home.  This someone is completely clueless as to how much work that will be ("But he's not happy there!")  Think childless couple that has always been able to live life for themselves, come and go as they please, etc.  I don't want to see this elderly person moved and then have to be moved again, so I would like to suggest some reading that would make the enormity of this undertaking clear.

 

I've read part of The 36 Hour Day, which might be good.  In this case, I don't want something Pollyanna-esque.  I want something that expresses the harsh reality so that they can make an informed decision. 

[Guest]

Have they gotten to spend a full day or two (or three) at the AL facility? That would be my encouragement over a book. To see the daily grind and what the staff deals with. You can always rationalize things would be different when reading, but sitting there with the person and seeing the ins and out of the care- can't be much more informed than that. Then they are going in with eyes open. It's a noble thing they want to do, so I wouldn't get to down on them. Your concerns are totally understandable, but some people have a visceral- well I'll show you reaction- when confronted with things they think are well within their capabilities. Obviously not knowing them, that might not describe them at all. But having seen a lot of this with my family- there are always the "know better" crowd, where if you just handled it their way, things would magically be better. Spending a few days with the relative in question quickly cured all of that and apologies were issued to the ones being questioned.

[Guest]

*****The Thirty Six Hour Day******  This is a must.

 

Elegy for Iris is quite interesting; some people hate it because they feel the author (husband of literati Iris Murdoch) betrayed too many secrets in writing it after her demise, but I found it moving and helpful in understanding how things fall apart, and in giving insights how love responds (and how it fails and still is love).  

 

 

[redsquirrel]

"Why can't we talk about something more pleasant"

 

It isn't about dementia specifically, but it is about one woman's journey with her parents as they aged and died.  It is a graphic novel, because she is an illustrator by trade.  It was...challenging to read and very, very good. 

 

 

https://smile.amazon.com/Cant-Talk-about-Something-Pleasant/dp/1608198065/ref=sr_1_1?ie=UTF8&qid=1471494751&sr=8-1&keywords=why+can%27t+we+talk+about+something+more+pleasant

 

I strongly, strongly suggest you give it in paper form, not ebook. It does NOT translate well into kindle or other electronic format.  I know, I read it that way and it is a testament to the power of the story that I persevered even though it was a very difficult reading experience.

 

There is some time when the parents are in a home, some time with their adult daughter, sometime in a home near their daughter, it changes.

 

It's not exactly what you are looking for, but it is a powerful book, it was a National book award finalist, and it is about caring for aging parents.  And because it is a graphic novel, it looks like a quick read, something you can just breeze through quickly. But if you just give it a chance it really grabs you, and I am not a graphic novel reader.

 

 

[G5052]

Yes, The Thirty-Six Hour Day is a classic.

 

I also found Learning to Speak Alzheimer's and Surviving Alzheimer's very helpful.

 

Those who haven't been there just don't know. A friend of mine cared for her father who was in the middle stages. He fell and died of complications. She did a very good job, but it was pretty tough right before his fall. Another relative of hers was taking care of an aunt who is in the early stages. That relative got so irritated after a few months that she put the aunt on the plane to my friend's without telling her until just before. Now the aunt has lived with them for over a year, and it's going fine because my friend knows how to handle it. Her aunt has remained stable and has actually improved. She's a stay-at-home mom and knows all of the local resources and uses them.

 

I don't want to dwell on the past too much, but there was no way I could have taken care of my mother. She had a history of violence and considered me the black sheep of the family. She didn't like assisted living either, but it was the right choice in so many ways.

[Reefgazer]

I was in the position with my dad this past summer, and I was prepared to do whatever it took and pay any money for him to be comfortable and happy and safe, even if it took moving him in with me and giving up my job.  As it turns out, he did fine in the dementia facility and didn't need to be moved out to live with me full time.  But I spent most of my day and evening caring for him/working for him, above and beyond what the facility did.  It was an extremely exhausting job, but...the most rewarding thing I have ever had the privilege to undertake and I am so grateful I had that time with my dad before he died.  I had close time with him that no one else did, and I will cherish that memory forever.  So maybe the person is up to it and it will be a good thing for all involved, and they ought to be given the chance.  But I would emphasize the need for support services, especially if the patient is bed-bound, and try and help get them that support to make the effort successful.  Also, how the dementia presents itself makes a difference in what is required for adequate care, and dementia patients present in a wide variety of ways. 

Someone in my family is considering moving an elderly relative with mild dementia from a AL facility into their home.  This someone is completely clueless as to how much work that will be ("But he's not happy there!")  Think childless couple that has always been able to live life for themselves, come and go as they please, etc.  I don't want to see this elderly person moved and then have to be moved again, so I would like to suggest some reading that would make the enormity of this undertaking clear.

 

I've read part of The 36 Hour Day, which might be good.  In this case, I don't want something Pollyanna-esque.  I want something that expresses the harsh reality so that they can make an informed decision. 

 

Edited August 18, 2016 by reefgazer

[StephanieZ]

I just encourage you not to be totally negative. Your fears are reasonable, but the negativity might just add to the distress. 

 

Dh and I did this for my mom. It was heartbreaking, and difficult, but there was nothing else I'd rather have done. I could not have lived with myself and the alternatives (institutional care). 

 

I ran into a LOT of the "Don't!! It's terrible!! You'll ruin your marriage!! Your kids will hate you!!" etc etc. . . People are very fearful of dementia/Alzheimer's. Indeed, it is very hard. That said, I *never* experienced the aggression or violence that so many people said were predictable. Mom was crazy, confused, but still loving and appreciative. There was nothing more important than what we gave her. I am deeply satisfied with the fact that I could give her that gift. If she'd spent those last years unhappy in an institution, I'd be living with the guilt and sadness. Instead, I am gratified and I feel that I did all that I could for the woman who gave me life. Although the negative comments did not stop me, they did discourage me from seeking support/ideas and they did dishearten me and add to my stress. Don't be that person!

 

My brother (single, childless) also had offered to be Mom's caretaker . . . We all preferred me, and so I did it . . . I did think though, that although my brother wasn't as prepared as I was for the 24/7 giving required in this sort of relationship, it may have actually been a huge blessing to him to experience that. . . 

 

(((hugs))) to your family as you navigate this pathway. I urge you to be as positive and constructive as possible. This is a hard, long journey, and you all need to support each other as much as you can.

 

 

[redsquirrel]

I would like to add that people shouldn't assume the worst about being in a home either.  A friend's mom was diagnosed with Alzheimer's and her mom placed herself in a residential center.  Her mom is on 100% medicaid and had no assets, so it's not like a fancy retirement home (we have one of those here as well...it's like a spa). Her mom is very happy there.  Living on her own had got waaaay to stressful for her mom, so this was a relief. But her mom feels like she has some autonomy not living with her kids. She has made it clear she doesn't want to be moved out and she likes it where she is.  Is it perfect? No. But it's not a hell hole by any stretch of the imagination. Her mom goes to classes there and gets to do stuff she likes and doesn't have to worry about setting the place on fire by mistake. My friend doesn't have to worry about her mom wondering off and getting lost.  It has been really good.

[Carol in Cal.]

Yes, The 36 Hour Day.

And, Still Alice.

 

And, talk to the Alzheimers' Association.  

 

 

[Retired]

well my father lived with us in early stage but after he started becoming dangerous to himself we gave up care.  He got a hold of car keys and tried to leave in the middle of the night.  He left stove, started a fire, tried to work on our electrical panel   on and stuff like that there just was no way we could continue to watch him 24/7.

 

My son was 12 when he had to start sitting with my father for short times.  It really influenced his life.

 

  He currently works part-time in a dementia lock down unit.  These are the ones that are in their last days.  He says they loose several patients each week.  He is in grad school for neuro studies his goal is dementia research. 

 

I do believe care units for dementia patients is needed but the sterile hospital style lock units adds to their confusion.

 

I would love to the US start dementia town like facility like some of Europe are trying.  They are seeing less confusion with their patients

 

http://www.theatlantic.com/health/archive/2014/11/the-dutch-village-where-everyone-has-dementia/382195/

 

anyway I have no book recommendations but do understand how outsiders think the American dementia units are cruel and also understand why patients don't like them.  They look like a prison who wouldn't be confused and combative. 

 

 

 

[TechWife]

 

 

I do believe care units for dementia patients is needed but the sterile hospital style lock units adds to their confusion.

...

I would love to the US start dementia town like facility like some of Europe are trying.  They are seeing less confusion with their patients

...

 

anyway I have no book recommendations but do understand how outsiders think the American dementia units are cruel and also understand why patients don't like them.  They look like a prison who wouldn't be confused and combative. 

 

Not all secured dementia units are sterile and hospital like. We are looking for help with my dad right now. We have visited some very home-like facilities. None of them have looked like a hospital. My dad is not confused, he just isn't with us any more. He is firmly convinced that his reality is just that, reality. He's very clear about it. It's sooo hard. 

 

I love dementia town idea as well. Very caring. 

[Catherine]

"Why can't we talk about something more pleasant"

 

It isn't about dementia specifically, but it is about one woman's journey with her parents as they aged and died.  It is a graphic novel, because she is an illustrator by trade.  It was...challenging to read and very, very good. 

 

 

https://smile.amazon.com/Cant-Talk-about-Something-Pleasant/dp/1608198065/ref=sr_1_1?ie=UTF8&qid=1471494751&sr=8-1&keywords=why+can%27t+we+talk+about+something+more+pleasant

 

I strongly, strongly suggest you give it in paper form, not ebook. It does NOT translate well into kindle or other electronic format.  I know, I read it that way and it is a testament to the power of the story that I persevered even though it was a very difficult reading experience.

 

There is some time when the parents are in a home, some time with their adult daughter, sometime in a home near their daughter, it changes.

 

It's not exactly what you are looking for, but it is a powerful book, it was a National book award finalist, and it is about caring for aging parents.  And because it is a graphic novel, it looks like a quick read, something you can just breeze through quickly. But if you just give it a chance it really grabs you, and I am not a graphic novel reader.

 

I loved this book SO MUCH.  I've always loved Roz Chast and her humor, but this book is a wry and poignant look at the aging of her quirky parents, and about how she coped with their final illnesses.  

 

My dh gave it to me when my parents, 78 and 79, were severely injured in a car accident and spent weeks in the hospital, teetering on the brink of death.  They both survived, ultimately, and are home.  But the book touched me and was relevant.  I loved it.

 

It could be helpful in your situation, OP, if your intended audience has a good sense of humor and an appreciation of the need for laughter even when things are very difficult.