Three Alzheimer's Books for Caregivers I Have Read

Three Alzheimer’s Books I Have Read

 

This is the hardest thing I’ve ever done in my life, being a caregiver for my wife who has Alzheimer’s, caring for her every need, doing the family business, which includes taking care of all the medical expenses and prescriptions etc., and raising a 13 year-old granddaughter.

(As I write this, there was a sleepover in my house after a full day pool partying for three 13 year-old teenagers, everyone is sleeping now, its 11am!)

 

But, I think I’m holding up well, next week I’ll see my primary care physician and discuss some issues with him.

 

The whole Alzheimer’s thing begins with a diagnosis, and your reaction is, “this is BS!” following with tears and then hell, “It’s not going to stop us!” to a couple years later, “Well maybe things are kind of getting worse” to after about 3 years, “I think I should be planning for the future.”

 

So I wanted to pass along to anyone who is facing caregiving the 3 books I have read so far about Alzheimer’s.

 

“Fighting Alzheimer’s A Simple Plan” by Ron Jackson. 

The author gives a narrative, an almost journal like description of caring for his wife.  It’s good.

 

“Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief” by Pauline Boss. 

It is with this book I learned about the concept of “Ambiguous Loss.”  This means you have lost your loved one, who is no longer the person you married, but is still present in physical form or body.  How to deal with this.  This is a powerful book every caregiver should read.

 

But more than anything I’ve read so far, this book “My Life Rearranged: Musings of an Alzheimer Caregiver.” by Susan G. Miller

This is the best, the most poignant, the most descriptive, and the most emotional narrative I have read.  Just about everything she says in her book, every experience and every thought is what I have gone through so far.  She takes you from the beginning stages of the disease, to the middle, to the final stages, as a narrative caring for her husband, but ends each chapter with the thoughts rushing through her mind as she tried to manage and cope with her responsibilities and love for her husband.  It is truly moving.  If you’re a caregiver please read this book.

 

Rick

I'm so Overwhelmed By Your Response!

I am so overwhelmed with the response from you my friends on Facebook, Twitter and my web page, the outpouring of love and concern is just beyond my comprehension. I have, to date, received over 2,000 messages and I want to know that I have read every one of them.  Thank you for all your kind prayers, kind words of encouragement and offers to personally help.  I know I can’t possibly answer every one of them, and I apologize, but I have read them, and I feel so grateful that I have such wonderful and caring friends.  Thank you so much.

 

 

Here’s what has amazed me about all this:

 

Of the over 2000 messages on social media that I have received, I would estimate that about 75 maybe 80% of the people have had some connection with Alzheimer’s! That’s pretty astonishing!  Whether it be husband or wife, grandparents or aunts and uncles or neighbors and friends.  Over 5 and half million people in America have it, 2/3rds are woman, most are over 65 years old, but many are younger.  Many of you who contacted me said you were or are caregivers!

 

Another thing that has struck me, and this topic has come up in some caregiver meetings I have attended, is how people say, “you are so special, and wonderful, to be a caregiver to your loved one.”  And my thoughts are, ‘this is not special behavior is it?’  This is what anyone would do to be there for their spouse or parent or grandparent.  Isn’t this just normal to care for a loved one?

 

 I also noticed how some people tend to be reluctant to deal with you when they find out you’re dealing with Alzheimer’s.  A social worker told me it kind of has a stigma, unlike cancer or other debilitating or catastrophic diseases. Why?  I don’t know, when you consider all the people who have contacted me on Facebook, Twitter and my web page, you would get the feeling that dealing with Alzheimer’s is almost becoming a fact of life. Maybe it’s because when you get a cancer diagnosis, the doctors put you on chemo or radiation or some plan to fix it.  With Alzheimer’s” well that’s the subject of the next paragraph:

 

My final thought, there is not a damn thing you can do about it!  Period!  As you read in my blog, the doctors at the Mayo Clinic said, “See you next year!”  The Banner doctors and medical personnel are a lot more compassionate, and see Ruth more often, and the Banner Alzheimer’s Institute has ongoing education programs for both patients and caregivers, but really there is no cure. All you can do is prepare for the worst.

 

It forces you to make every day special for your loved one and cherish the memories.

Rick