Books for ALZ patients

goodoldway

Hi, I'd welcome book suggestions for Alzheimer patients. My mom is 85 and has been in assisted living for a year now. My dad, who was with her in AL, died of Covid last month. I live in Canada and have not been able to cross the border often to spend time with her. Mom often phones, asking where she is supposed to be and hoping she can go to her childhood home. Since my dad passed she has not just become more confused but has become extra aware of her confusion: "I just want to know what is happening to me."

A support group would be great, but logistics are a problem, especially with so many lockdowns. Online groups are beyond her ability. So, I was wondering if anyone has come across book(s) she could read that easily explain the process of dementia? Something with a patient's perspective would be great, but even just having a book around that reminds her she has dementia might help.

M1

Welcome to the forum.  Sad to say, but I suspect a book is also beyond her ability at this point.  Are there other books she still reads?  My partner likes picture books and short poems, but that's about it (she is stage 5).

I think most would say don't try to explain it to her, she won't retain it, and she doesn't have the ability to reason through it like you do.  Certainly it makes sense to reassure her she is cared for and loved, and that's probably all you can hope for at this point.  I'm so sorry for your loss, and I completely understand the impulse to try to make it better for her.  It's all heartbreaking.

Rescue mom

I am so sorry you have to deal with this, especially long distance. It’s so frustrating even close.

I’m also sorry, but I have to say it sounds like M1 is right. There quickly comes a point —and from what you’re saying, she is likely there—where reading/comprehending and remembering, a book is beyond them. They may well still like looking at pictures, or understand a brief caption, or even a cute 2-line rhyme (my mom did). But that was the limit. Trying to “explain” this illness to them at this point mostly just frustrates them, and you, because they simply cannot understand it.

My husband with Alzheimer’s would hold a newspaper or magazine, look at it and turn the pages, for years, even though he had no idea whatsoever what it “said.” He literally went through the motions. He did seem to enjoy magazines with a lot of pictures, of things used to enjoy.

It’s so good you can still talk to her on the phone. Those conversations surely help make her feel loved and comforted, at least in the moment. And it’s great she’s already in a facility, that I think you must be ok with since no problem mentioned. 

Jo C.

Hello goodoldway and a very warm welcome to you.  I am so very sorry for the loss of your father and sorry for what is happening with your mother and can certainly understand the challenges being long distance.  Do you think your mother would be amenable to moving closer to you rather than being so far away?

M1 has given good advice.  It is a matter of your mother no longer being able to process the written word which can be very difficult when the brain has been compromised by dementia.  It is sad to say this; but a book regarding what is happening to her will no longer be a help at this point nor would a group.  She may well be considerably past that.  How long has it been since you have been with her for a week or so?  It is amazing how fast things can change. Since she is asking about her childhood home, her dementia has her moving backward in time which is what happens with dementia.

Since her husband passed away last month and he was living with her in the ALF, it may be that he was the one who was managing things and helping her quite a bit and may have been covering for her.   She has now lost that management coverage and is sadly on her own and she is not able to manage by herself.  The ALF expects the residents to be ready and get from Point A to Point B  at certain times for meals and for activities and more by themselves; she would have to remember about waking up, grooming, laundry, bathing and taking her meds; getting to those mealtimes and activities, and  unless special arrangments have been made re the meds and hygiene she will have to recall that and be able to perform accurately. She will also have to remember when she needs to purchase items for her grooming, and other needs, etc. There is so much for her to process and arrange and she may well be at a point where that is not working for her any longer without her husband.  None of that is her fault; she cannot help this.

In dementia, the most current memories are gone first; the person moves back in time.  I am going to give you a link that is really excellent; it is, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller; a specialist in dementia. It is the best I have read about the "why's" things happen as they do. This would NOT be for your mother at all, it is for you and perhaps other family members.  It is a highly regarded writing for families. 

It is probably better to be kind and let her know only as necessary, and only  if she asks about her memory, that she has a little "memory" issue and that she is taking medicine for it. It will be of no value to bring this up to explain her problem issues not managing at the ALF.  The words, "dementia" and "Alzheimer's Disease," can cause upset for many of our elderly LOs who see such a diagnosis as a horror; and as said, processing information is already an issue as is deteriorating ability to retain memory which also has become quite compromised.  Comfort her over the phone as much as you can; visit when you are able or have a person whose judgment you trust visit her as long as they are able to conduct themselves in an appropriate and supportive manner.  She is probably lonely, a bit fearful and at loose ends no longer being able to manage for herself. She must miss your father so much.

If she is not managing, it will not be too long before the ALF may contact you that things are not working out; so be prepared for a "Plan B," should that happen.  It is always good to have a,"Plan B," as dementia always advances and it can happen slowly OR it can happen abruptly.   I wonder if the ALF has a step-down unit for people whose dementia has progressed out of being able to cope with living at an ALF level.

If not having been done since your father passed, I wonder if she needs to have a checkup appt. at the doctor's office with a full blood and urine labs done to determine whether or not she has other issues contributing to her state.  Always good to rule that out.

Here is the link for, "Understanding The Dementia Experience," it is worth printing it off for future reference:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Please do let us know how you are and how your mother is doing.  We are all here in support of one another; that now includes you too.  There is much experiential wisdom to be shared here by Members who have been farther along the journey.

With warm thoughts and best wishes being sent your way from one daughter to another,

J.