Know any good books about grieving for ALZ parent?

Colleens Daughter

I am going through a hard time. 

I am close to my mother and I feel so sad that she no longer is the capable woman she always was. Mom still recognizes me and I can tell her stories about her life and about people she knows or used to remember.

I feel the loss of her not remembering all the incredible things she has done in her life. I miss that she no longer calls her financial manager to discuss stocks with him. She doesn't remember either of her husbands. She has 14 photo albums. I went through one to see if it would be a good one to give to her so she could look through it. None of the photos were written on the back. I went through and wrote on every single picture the details of the people who were in the picture and how she knew them. There were lots of greeting cards in there too, so I did they same thing, writing under the person's signature how she knew them. I cried so much doing this. Now I'm avoiding her photo albums because I think I will cry if I go through them. I want to go through them and select photos to occasionally send to her.

Does anyone know of a good book about grieving for a parent living with Alzheimer's? 

Mom is 86, technically in the Late-Stage of Alzheimer's, but is still communicative, can feed herself, recognizes me, can get around by using a walker and will probably live into her 90's because she is so physically healthy.

dayn2nite2

If there was anything that Alzheimer's taught me, it was that I should cherish every moment I had with my mother in whatever condition she was in while she was still alive.

You will have years to grieve after she's gone.  You have a finite time left with her on this earth.  Instead of ruminating over old pictures and cards, meet her where she is.  Spend some time holding her hand without saying anything (or chatter away).  Ask her to tell you what she did that day (the stories are usually fascinating).  

There comes a point where it is plain that the capable person has gone away and instead of wasting today feeling bad about that, what if you made a new friendship with this nice lady who might not remember talking about stocks but might want to tell you a story about something she'd like to do?  Live in her world for a while, it's not a terrible place to be.

On April 1, my mother will have been gone for 9 years from this awful disease.  I wish more than anything I could have her here to tell me about her "boyfriend" (didn't exist) and how he would come and take her dancing every night.

Iris L.

I agree--meet her where she is.

Iris L.

feudman

Hello, daughter, & welcome to the forums. I'm sorry to hear you are having a rough time, but you have found a helpful place where we all understand.

The above posters have given you very good advice. Cherish the time you still have with her, and make some happy memories while you still can. Your mom still has a lot in her favor; above all, she knows you and can communicate with you (although maybe not at 100% anymore). You need to celebrate that with her...try to focus more on what abilities she still has, rather than what she has lost. Accept "the new mom" that has taken her place.

In her book "Learning to Speak Alzheimers," Joanne K. Coste explains how delving into your mom's current reality, and trying to experience what it's like for HER living there, will help YOU, both to understand her feelings and needs, but also to know there may be no need to feel such sorrow for her. It upsets YOU that she can no longer call her stockbroker, remember things, etc., but what is HER perception? We all learn that WE are the ones who must change & adapt to their world, because they can't come back to ours. 

I would take those scrapbooks in each time you visit, to go through & label them as you both talk about them. Try to avoid asking if she remembers...YOU must be the "rememberer" for both of you. Also, if it gets emotional for you at times, tell her you need to use the bathroom or use some reason to leave for a while; she is probably better at picking up on your emotions than you think.

Grieving is a very personal thing, and you must find your own way, but there is plenty of support available. Being here is a start, and you can search the forums (green key above) using the keyword "grieving." A live (virtual) support group may be helpful, and some of us have gotten a lot of benefit from professional one-on-one counseling. 

Here's a few books members have found helpful:

"Loving Someone Who Has Dementia" & "Ambiguous Loss: Learning to Live With Unresolved Grief," 2 complimentary books by Dr. Pauline Boss.

"The Grief Recovery Handbook," by James & Friedman

"Creating Moments of Joy" by Jolene Bracken may help you relate to your mom's new world, and I'd also recommend watching some Teepa Snow videos to help you "get inside her head (just google her).

dayn2nite, that's an excellent post, I couldn't agree more, but I want to make one slight correction: you said her dancing partner didn't exist...oh yes he did!

Luv Power

Hi Colleens Daughter ~

I too grieve the loss of the person that my mother once was ~ all the things she once was, all the things she once did and all the memories that no longer exist.  The only person that she remembers now is her 'Momma'  (she no longer remembers anyone else in her immediate family including her husband and me).  I personally feel that it is healthy to grieve these losses ~ they are real.  And hope that you can find a positive way to express your grief and process it, whether it is through a support group (like you have already done here), expressing your feelings with friends and family through verbal conversations or writing your words down in a letter to them, keeping a personal journal or whatever means you need to give your grief a voice.

At the same time, I believe in Gratitude.  When terminal cancer was overcoming Dad, we found a way to balance hope and gratitude with feelings of hopelessness. Gratitude and Hope helps replace Grief.  So please do take the time to celebrate all the things that you are grateful for today, find pleasure in what you still have in this moment and celebrate all that your mother has given you in the past.  When I look back a year, or more at what Mom & I were doing on this month/day in time, what she still was able to do ~ oh my goodness, what I wouldn't do to have those days back again!  Yet at the time I recall grieving the losses up until then.  

And then there is the Anticipatory Grief  ~ what is to come.  It is all real and natural.  Give this grief a voice too.

Do take time to give your Gratitude a voice in the same manner you give your Grief and Anticipatory Grief a voice.  I do not know of any good books to guide you.  However, I do hope that your path crosses with someone that can offer guidance on this difficult journey.

MimiMinder

Consider this a long distance hug. I feel your pain. I wanted to add a suggestion to the book list - "Surviving Alzheimer's" by Paula Spencer Scott. The cover states it best: "Practical tips and soul-saving wisdom for caregivers" and I found that to be very true.

This book encourages us to not get hung up on the connections in the photos (like whether it was great aunt Erna or was it Edna), but to share a journey. Wow! She sure looks happy on top of that horse. That might lead to an interesting conversation without any added pressure or expectations.

I am a huge fan of "The Grief Recovery Handbook" and recommend it all the time. What helped me the most was being able to look at my two moms - pre dementia and my current mom - and realize I needed to treat my new mom in a different manner. She doesn't have our shared history any longer, and it is okay for me to grief that. But she does still have some a lot to offer, so I need to celebrate that. 

Another thing that has helped me a lot was finding a few dementia buddies. If you find you 'click' with someone after reading a post or two, you can send a request to form a connection through this platform. Sometimes having a back and forth conversation with another caregiver can help make the tough times seem not so bad.

runforestrun

Darn.  I could so relate to everything you said in your post.  I am going through the exact same thing.  I thought I could care for my mom until her demise so she moved in with my husband and I -- and then Covid hit.  Everything fell apart.  She is in a memory care unit and I cry everyday and worry every minute about her.  I am so sad that we are at this juncture in life.  My heart bleeds for her and I miss the mother that I had all these years.  I actually said the words out loud in tears the other day "I adore her".  I also lost my father 8 years ago to this same disease and have been handling their affairs for 13 years now.  I am spent.  I am saturated.  I am so tired of making decisions and handling all the issues -- BUT my job is not done yet.  I must plug along and give her the respect, dignity, and best quality of life I can give her until her time comes. I must admit I wish for that day just because I am so afraid of what the future holds for her as the disease robs her more and more. On the other hand, I read the posts and say to myself are you crazy -- once she's gone she is gone forever so stop and stay in the moment.  Get on her level as others have said.  I do hold her hand while I am driving with her and try to mug it up with her as much as I can just to show her how much I love her -- which she knows!

I am at yet another crossroads that I am angry and resentful about.  Her money for private pay is running out and I have to start the process of applying for long term care.  I never wanted to be in this situation.  I never imagined being in this situation.  I hate this situation but it is me and only me to get the job done.  Any advice people can give about the process of transitioning them over from assisted living into a long term care facility would be welcomed.

I spoke with God this morning and turned it over to him.  I hope he is hearing me.

Thanks for listening to my rant.   It feels good to get it out