Saturday, February 26, 2011

Communication with Husband

My dear husband feels in control when we go to a restaurant and he pays with his debit card. I help him with the procedure when the waiter is not at our table. If I didn't he might leave an inappropriate tip as the cartoon shows Herman with his $200 tip.

I am so into multitasking that I drive myself crazy. Not so with hubby. One thought and one activity at a time or he lets me know I am not making sense. However he seems to be ready for adventures, like running around doing errands. "Where next, Carol?" he will ask.

He misses driving, still has his license and he is still insured. Several weeks ago he seemed to recant his decision at the time of the crash to not drive again. He couldn't remember that decision. I was more comfortable with his driving the popup camper, especially with backing it up. So he will suggest he drives to an event and seems to like me to drive home. However I do most of the driving because he doesn't know where places are.

Researchers use the Montessori Method with AD Patients and speak in the moment and try to think of the meaning behind the words. Are they asking the same thing over and over? When my husband was obsessing about repairs on our camper, rather than dismiss what I knew was being  taken care of, we went to the JAYCO dealer again. That stopped his obsessing. The old-fashioned husband that he is still needs to feel in control. And you cannot argue with a person who has Alzheimer's.

Recently DH said he wanted to go to the shooting range. Rather than argue about this I reminded him calmly that we are into camping now and that our friend has his guns to sell. He was satisfied. Alzheimer's patients can get angry at Sundown or when life doesn't make sense to them. Why have any weapon around for future anger!

He has memories that don't make sense to me and I just calmly say nothing or say that must have been a previous time before we were married. He says we came within inches of running into a huge utility pole at the time of the crash. No huge pole existed at the crash scene. I don't correct him. However he would not be a credible witness in a trial!

He thinks his daughter broke her elbow months ago and I have to calmly inform him it was earlier this month. I am posting monthly pictures on his Facebook profile to show him recent events. He at times looks at these pictures, but has little interest in his computer any longer. He just enjoys his movies!

All of these strategies help with our "new normal" life, part of the cross I take up. From this morning's devotions from the end of Mark 8:
If any of you wants to be my follower, you must turn from your selfish ways, take up your cross and follow me. If you try to hang on to your life, you will lose it. But if you give up your life for my sake and for the sake of the Good News, you will save it. And what do you benefit if you gain the whole world but lose your own soul? Is anything worth more than your soul?

Friday, February 18, 2011

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'sAuthor 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:

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!

Thursday, February 17, 2011

Living In the Moment: Highlights from "Think About It" Conference

Reagan by
Today while we were looking at booths at the conference artist Toni Trotti painted someone upside down and when he finished it, he turned it so you could see who it was! I blogged about him here on February 6th.

Dr. Arny Bush, from USF, spoke on "So What Is Dementia Anyway". She covered many terms simply and visually. I learned that with Early-Onset dementia (before age 65) the decline can be fast, whereas the older patient can have a slower decline especially if they early receive medicine such as Exelon/Aricept and Namenda as my husband has. At some point these medicines might not matterl. Early Stage such as my husband and Jake have shows functional impairment:
  • Difficulty organizing and expressing thoughts (DH or Jake do not seem to have this although we have difficulty expressing things to them simply.)
  • Memory loss of recent events (However my husband does remember the crash and our camper. His photo albums on Facebook help him with recent events also.)
  • Difficulty with problem solving (DH shows no interest now in carpentry and the last thing he made, a bird feeder, seemed complicated to him.) 
  • Difficulty with complex tasks. (His long-term memory helps him still, but he no longer wishes to handle our finances which he turned over to me when I retired from full-time school teaching.)
  • Getting lost or misplacing belongings. (Keys, cell phones, yes. Getting lost--no. He used a GPS when we had two cars up until two months ago.)
  • Personality changes. (Some days he shows Sundowner's Syndrome and gets very upset. So far I am the only one that has witnessed this.) 
Dr. Bush concluded with what she observes 1) "unconditional love" of the caregivers and 2) "living in the moment" of the patients. I have been so concerned with being proactive, that at times I do not enjoy my husband's humor and each day. I need to focus more on each moment and live in the moment.

Dr. Megan Janke, also from USF,  spoke about "Leisure Activities as a Means of Connection and Stimulation". I feel so good about going camping now with my husband--wonderful for DH and myself and also to share this connection with Sally and Jake. Leisure benefits the caregiver as well. Dr. Janke also passed out 101 Things to Do With a Person With Alzheimer's and I also found in on line here when I came home.

Brad Beatty spoke on stress management. Accept the new normal he said. He wisely told us to bring meaning to the situation and do not ask why but to what ends.

Cudos to Stephanie Thompson of the Florida Gulf Coast Chapter of the Alzheimer's Association and her volunteers for putting on such an outstanding conference for us caregivers for free.

Thursday, February 10, 2011

Saga Nine

Ours on Left and Sally and Jake's on Right
We used to own a popup camper, but my husband sold it a year and a half ago. I was sad about giving it up, but accepted this as part of life.

Our friends Sally and Jake go camping. They upgraded from their popup camper and recently sold us their old popup camper on the left. They sold it to us verrrrrry inexpensively, which meant that we would put new tires on it and have it looked over for repair and safety. Repair could have meant new canvas, but I devised a plan so we didn't have to have new canvas--combination of my sewing and using fabric adhesive.

Was this purchase a risk? While deciding on this purchase, I realized worse case it could sit in our backyard on our cement area.  I called Dolores about having this much fun while our husbands have Alzheimer's and she encouraged us to go for it while we can. Also, Jake knows how to operate the popup since he once owned it. We will go camping with them at first.

DH, proud of this driving skills,  carefully drove the popup to a place that would work on it. I also worked on the canvas there--my only experience ever working where mechanics work. Proud of my work I went home to  get DH to bring him to see how well I thought I was doing repairing the canvas. When he got there,  DH got mad at me, using a lot of swear words and saying why didn't we just have professionals do the job. I stayed calm and explained we really couldn't afford that expense. That night he forgot that he had been so mad at me. This is the for better and for worse part of marriage and because my husband has mixed dementias this behavior is to be expected, especially at sundown time which it had been during his outburst.

We have been busy outfitting the popup--new camping chairs, what will go in each drawer, etc. We were at Camping World and DH's back hurt him and he said he was going to go to our car. I said OK and pointed him in the direction of the car.  Unfortunately he got lost and I had left my cell phone in the car. When I made the purchases, I went to the car. No husband. Retrieving my cell phone I called his cell and he was mad at me--sundown time. Life is so frustrating for him at times. We met at the entrance to Camping World and then walked to the car. Several hours later he could not recall his getting lost.

Things turn out to be the spouse's fault when the other has Alzheimer's. I realized that my husband needs me with him at all times if he is not at home. (He still is happy to stay home watching movies by himself while I work part-time or do other errands. Because of that crash in December there is no extra car now for him to drive while I am gone.)

Time doesn't make sense to my husband. He thinks the shop has had our new-to-us camper for a long time whereas it has hardly been a week. He takes notes about each day on a notepad he keeps on the coffee table with all his DVDs. Even so his notes don't always make sense to him.

Hopefully we will have opportunities beginning next month to enjoy camping adventures before his health declines.  And then Jake and DH can enjoy telling each other the same stories over and over that each forgets. Sally and I will smile when they do and also enjoy having our own conversations.

Thank you, LORD, for the camper
and for our friends!

Sunday, February 6, 2011

100 Years After Ronald Reagan's Birth

Ronald Reagan was born 100 years ago today on February 6, 1911. He was my governor when I lived in California and he was our our 40th President for two terms in the 1980s. He was a fiscal conservative and America prospered economically under his leadership.Generations will remember his famous Tear Down That Wall speech.  His speaking skills perhaps were enhanced by his years as an actor. Reagan is remembered for the years he didn't have Alzheimer's.

However, after he left office, in November 5, 1994  he announced:
My fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's disease.

Upon learning this news, Nancy and I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way. In the past, Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result, many more people underwent testing. They were treated in early stages and able to return to normal, healthy lives.

So now we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.

At the moment I feel just fine. I intend to live the remainder of the years God gives me on this Earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.

Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes, I am confident that with your help she will face it with faith and courage.

In closing, let me thank you, the American people, for giving me the great honor of allowing me to serve as your president. When the Lord calls me home, whenever that day may be, I will leave with the greatest love for this country of ours and eternal optimism for its future.

I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.

Thank you, my friends. May God always bless you.

Reagan lived almost ten years after that announcement, dying June 5, 2004 at age 93.  I was a widow when Reagan died and my sentiments were for Nancy Reagan. I didn't know the future, that my second husband would also be diagnoised with Alzheimer's. But the Reagans made us Americans more aware of this disease according to the Washington Post. I  know that DH will not come out and make such an announcement and I have tried to do that in a dignified fashion for him. I am glad that he is content.

Many celebrities have gotten Alzheimer's according to this 2006 List. The list includes painter Norman Rockwell (1894-1978); singer Perry Como (192-2001); and actress Rita Hayworth (1918-1987). In 2003 it was announced that actor Charton Heston has a dementia-like illness.Celebrity doesn't keep one from this dreaded disease.

Wednesday, February 2, 2011

Story of Two Horses

"Two Horses "
Author Unknown

Just up the road from my home is a field, with two horses in it.
From a distance, each horse looks like any other horse.
But if you stop your car, or are walking by,
you will notice something quite amazing....
Looking into the eyes of one horse will disclose that he is blind.
His owner has chosen not to have him put down,
but has made a good home for him.
This alone is amazing.
If you stand nearby and listen, you will hear the sound of a bell.
Looking around for the source of the sound,
you will see that it comes from the smaller horse in the field.
Attached to the horse ' s halter is a small bell.
It lets the blind friend know where the other horse is,
so he can follow.
As you stand and watch these two friends,
You'll see that the horse with the bell
is always checking on the blind horse,
And that the blind horse will listen
for the bell and then slowly walk
To where the other horse is,
Trusting that he will not be led astray.
When the horse with the bell returns
To the shelter of the barn each evening,
It stops occasionally and looks back,
Making sure that the blind friend isn’t
too far behind to hear the bell.
Like the owners of these two horses,
God does not throw us away
just because we are not perfect
Or because we have problems or challenges.
He watches over us and even brings others into our lives
To help us when we are in need.
Sometimes we are the blind horse
Being guided by the little ringing bell
of those who God places in our lives.
Other times we are the guide horse,
helping others to find their way....
Good friends are like that...
You may not always see them,
but you know they are always there.
Please listen for my bell and I'll listen for yours.
And remember...
Be kinder than necessary-
Everyone you meet is fighting
Some kind of battle.

Live simply,
Love generously,
Care deeply,
Speak kindly.......
And leave the rest to God!