Seventh Book Report: Living With Alzheimer's--Part Two

On Jan. 25th  on this blog I wrote Part One about the book Living With Alzheimer's.  Author Joe Potocny is an awesome individual. He is always doing fancy things with his blog because of his long-term computer skills and current capabilities. Joe rebuilt his wife’s computer. He makes a complicated spaghetti recipe. He tends a pond that the family built as well as takes care of the fish in it. His wife works and he likes to feel useful at home. He proudly posts pictures in his book of their elaborate pond, complete with a pergola, landscaping and lighting. He was in an HBO special on Alzheimer’s and tries to keep up with those others who were interviewed. He relishes interacting with people who post on his blog. People without Alzheimer’s cannot accomplish what he does.

I have enjoyed reading his blog and the book from that blog because my own husband is so slow to acknowledge his own memory problems. Joe, in contrast,  is so aware and descriptive of what it is like to have Alzheimer’s. Joe honored me my asking me to post on this blog which I did on Feb. 16, 2011.

This week on that blog Joe’s wife Lynn and I wrote comments about our difficulty having patience with our Alzheimer’s husbands. Earlier Lynn wrote in November of 2009 that it is harder for Joe to remember. She tries to do normal things, but conversations are hard because Joe doesn’t want to talk or it’s hard for him to get the words out. I have difficulty initiating conversations with my husband and often wait for him to bring up a topic. Even so DH will tell me I don’t make sense and it’s more than “men are from Mars and women are from Venus”, folks. September of last fall Lynn, who doesn’t write often, posted “It Is What It Is”, writing "When you come to grips with the fact that this is what we have to deal with, it does bring a little peace. Not a lot, but a little.” Lynn also wrote “It comes back down to them wanting to prove that they can still do things the old way. . . .I do believe that change is not a good thing with these guys and that the more stable and calm things are the better." I cherish her wisdom.

Lynn and Joe have other guest bloggers. Dr. Joe Sivak, author of When Can I Go Home? writes last April, “No matter how far the disease gets, there is a person. The point of Joe’s blog and the point of my book is that we should never, ever cast aside any human being just because they have AD. . . . People like Joe are a gift to the human race; he reminds us to never forget. . . . Joe is not an Alzheimer’s victim; Joe is just a guy who happens to be living with the disease.”

February of 2009 Joe explained that disease made him not want to do things, forget what he is doing and start to not care about others. He is pretty hard on himself. I see him caring and doing a lot in his condition. I wish DH and he would be able to communicate and I am getting up my nerve to show passages of this book to my husband. DH doesn’t do much either, but takes pride in driving now, always holds open the door for me, and checks on security at the house. Our chiropractor yesterday mentioned that both of us are getting some strength back after our December automobile crash. I said that I guess hubby can weed in the yard now. But my hubby said not! But he does have ambition for what that popup camper might demand from him and is skilled at navigating our SUV while pulling a popup, a skill I have yet to master.

In one of the last entries of the book Joe writes:

It seems that I never seem to wake up completely anymore. . . .Time is more jumbled now than ever before and I have more difficulty in getting things out and what the hell I do not know what I want to say here.

Time is definitely a HUGE quandary for my husband. We just live in the moment and when needed he is reminded of events that have happened or will happen. FOG is how I would describe "time" for my husband. He was in a FOG several days after the crash when he asked me why he was in the hospital—is he having surgery for something?  I reminded him about the crash. Many days he asks repeatedly where I am going, when I will be home and when we will take our first camping trip. I help him get out of this time fog ever day and as long as he in cordial about it  (isn’t in Sundowners) I can handle his questions with patience. The part of his brain that should process new information is just not there. He keeps notes to also help his fogginess. Unlike Joe, DH is unbothered by his fogginess and I do not make it an issue. We all like to feel normal and I know my husband does and suspect Joe does also.

Joe has more difficulty walking and wonders about bathing since his sense of smell is going. He no longer is on Aricept, which I heard yesterday is a problem for persons with Frontal type dementia that Joe has along with his other dementia--Alzheimer’s.

Joe is a Warrior and has written a poignant Warrior Lament where he seems to cry out to God, almost like Job or Jonah in the Old Testament:

My strength is dried up and gone

No longer does exist that fierce warrior in me

I long to face only Thee

This battle I am in is lost and so am I

So before You I am on bended knee

Prostrate would I lie

But this body is too broken and brittle this day

So I lay before you all I have left

Worn, beaten, yearning, to you I give my soul

No longer in the dust of battle let me roam

I await You and your Hand to take me in your time

I pray Thee take ME HOME

In Your Name Amen.

Joe, we need you around a while longer to be the voice for our loved ones. You enjoy your blog and do write you have some good days despite your “wonderful” disease. (He is often sarcastic and humorous in the book.) I am so grateful your capable communication about that is happening to you has become a book. I am grateful for Lynn, Dolores, Sally and other wives who all share our burdens in the Internet blogs and in person.

You can see Joe's blog at: http://living-with-alzhiemers.blogspot.com/.

You can order his book at: Book on Amazon.

Joe  in video. Joe in HBO Documentary

God bless you Joe and Lynn, and this great country of ours!