Thursday, September 9, 2010

Boppa's Last Vacation

Lorrie & Rod, and I took Dad/Grandpa/Boppa to Effingham, Illinois for a Labor Day weekend with my oldest son and family. We rented a cottage at Camp Lakewood Campground on Lake Pauline. My son and family stayed in their Minnie Winnie a couple sites down from the cottage.
The first night went fairly smoothly with Dad getting up to go to the bathroom about 5:30. I slept on the pullout in the main room. It was the second night that things fell apart. Dad got up at 2:45 to go to the bathroom, but was very confused. After he went to the bathroom I got him back to bed. But an hour later he did the same thing, only this time he wanted to go to his room, room 204. He wanted to go to room 204, now. I finally convinced him to go back to bed again and I lay down to sleep. But an hour later he was up again. This time when he went to the bathroom but when he came out he said he couldn't go, he needed to see a doctor. It was then I realized he was constipated.
Since he has Alzheimer's anything that upsets his system upsets his ability to cope. So, I had him put his hearing aids in, sat him down and gave him a plate of strawberries and a juice box. While he was eating I explained that we were on vacation with his grandson and family and that Lorrie and Rod were in the other bedroom sleeping. He said "Ohhhh, I'm sorry." I told him it was OK and that he would probably be able to go to the bathroom in an hour or so. We went back to bed, again.
This incident made me realize we needed to give him something to help him remember where we were and why. So at breakfast I had him write his "Bucket List." I called it Boppa's Last Vacation and I asked him what he would like to do on his last vacation. With a little prompting he wrote down seven items.
1) visit relatives
2) go swimming
3) go for a boat ride
4) go fishing
5) go tent camping
6) build a campfire
7) sing around the campfire
I had him fold up the list and put it in his pocket. Every time he asked where we were I had him read the list and he would smile and laugh. Each time we did one of the items I had him check it off.
Between the strawberries and the list it worked, because the third night he only got up once and didn't ask to go to room 204.
The one unfortunate thing that did happen Monday morning after we got a picture of him sitting on one of the great-grandson's Scooters, was when I mentioned taking him down to the dock to fish. He absolutely refused to walk anywhere and did not want to fish. I got upset. I yelled and stalked off in a huff.
After I calmed down I realized why it had upset me so much. My childhood memory of my father is of him fishing. He loved to go fishing. He loved fishing. But this part of my father is not there anymore, the Alzheimer's has eaten it away. So, when he refused to walk down to the dock to fish, it was that moment the realization hit me full force. Tears come to my eyes as I type this.
This is what every caregiver of an Alzheimer's patient goes through. It is ugly. It is painful. It is inevitable that you will have these moments where you blow up, because another part of the person you love has been eaten away by the disease. In spite of it all there is a positive, the Alzheimer's patient will forget the incident within a few moments. You won't forget and all the people who witness it will not forget, but the Alzheimer's patient will forget.
So, Boppa's Last Vacation was a success. And yes, it will be his last vacation because it is too hard on him to be out of his routine, his room, his familiar surroundings. The sad truth is that he will only get worse. But, we have some wonderful memories of his last vacation around the campfire, riding in the boat, swinging while we played horseshoes and of course him goofing off on the the scooter. We did make him laugh a lot on his last vacation.

Thursday, July 15, 2010

Boppa Blog rebuilt

In 2009 my iweb was some how corrupted and in the process of fixing it I lost parts of my Boppa Blog. I have now reposted to this new blog the entries I was able to save. This blog now begins with the article I wrote for the Michigan Alzheimer's Disease Research Center (MADRC) newsletter back in 2008. As I work on this blog I will add the photos that go with each of the older entries.
My hope is to start a dialogue with other people who are caring for Alzheimer's patients.

Boppa Blog Issue 2

Article for MADRC Reflections Fall/Winter 2008
When someone you love does not remember or understand whom you are talking about, and they should, it is quite upsetting. Last Christmas, helping Dad decorate his tree, I kept referring to “Mom” as the one who crocheted the little stockings I had been hanging. My Dad said “Who?” I said “Mom, my mother. Your wife, Helen.” Dad went into the bedroom and brought out a photo of my mother taken on their wedding day. He had made the connection when I said my mother’s name. This incident shows how important it is for the caregiver to provide the Alzheimer’s patient with new paths to their memories again and again.
My book, A Walk With Boppa: A Portrait of Early Stage Alzheimer’s, references books, web sites, movies, and children’s books to help people learn more about Alzheimer’s. The personal-journal entries give an honest picture of the warning signs, the reactions, and the results of Alzheimer’s. Four years ago my family and I did not realize just how important creating these new paths to old memories would become. Our goal at that time was to get a diagnosis, move Dad to a place closer to us, and make sure his financial future was secure. Over the years my sister and I have discovered that Dad does remember certain things and people if he is reminded many times, has a photo to look at, or sees them on a regular basis.
I give Dad photos all the time, of his great grandchildren, grandchildren, children, other family members and all the special occasions. When I print them I leave a generous border to write names and dates on the front of the photos. My sister and I recently hung two cloth photo boards, with ribbon criss-crossed so you can easily slip photos behind the ribbon, over his dinning room table. We then arranged framed family photos all around the photo boards. He can now sit at the table and look at the photos with names and dates. He tells me he looks at them every day.
When Dad was first diagnosed with early stage Alzheimer’s, I asked him if he would like to participate in a research study. He liked that idea because he would be doing something to help others. Dad went through his first neuropsychological test on November 15, 2004 at the Michigan Alzheimer’s Disease Research Center (MADRC). This test is a comprehensive three-hour evaluation of cognitive and physical abilities, and is used in the process of diagnosing early stage Alzheimer’s disease. He has had three neuro-psych tests and been in several studies. Last winter my sister took Dad to a ten week Tai Chi study. This past summer he participated in the University of Michigan Memory & Aging Project and a brain imaging study for MADRC. By participating in the research studies, maybe some day soon the cause of Alzheimer’s disease or an easier method of diagnosis will be discovered.

Boppa Blog Issue 3

Be like a delicate flower and practice Tai Chi with an Alzheimer’s patient.

Tai Chi Tuesdays
Two weeks ago Lorrie and I started practicing Tai Chi with Dad on Tuesday evenings. We perform the seven different moves that Lorrie and Dad learned last winter in the MADRC Tai Chi study. The first is just deep breathing; second, the shoulder lift; third, is what we call, raising the ball & pushing it down; fourth, is wax on, wax off; fifth, is the puppet; seventh, is walking heel toe and then toe heel in a circle. All of these moves we do eight to ten times to easy listening music. Dad starts out thinking he can’t do it, and as he follows Lorrie, to the music, he becomes smoother and smoother in his moves. Last week I was amazed at how Dad watched and followed Lorrie so completely. After about a half hour we then listen to some forties music, especially Bing Crosby’s “Swingin On A Star,” which is Dad’s favorite. We are hoping to do this every Tuesday throughout the winter.
Tai Chi movements are like being a delicate flower swaying purposefully in a light breeze.

Boppa Blog Issue 4

Tenet #3 in Learning To Speak Alzheimer’s by Joanne Koenig Coste “Focus on remaining skills” (85).

Another Tai Chi Tuesday
The latest Alzheimer’s tidbit - Remember to Simplify
I thought I was doing just that when I connected a timer to Dad’s christmas tree, but it turns out he just did not understand the concept. Dad kept unplugging the timer from the wall and plugging it into a strip we have behind the entertainment center. Three times I plugged it back into the wall and set the correct time. The third time I put a note under the tree explaining when it would turn on and off and a note to “Not Touch it.” The fourth time when Dad called and said the tree lights came on at 9:00 at night when they were suppose to be turning off I realized the timer wasn’t working. In the middle of the night I remembered Joanne Koenig Coste’s number one tenet: “Simplify the environment” (7). Sometimes the solution is so simple you can’t see it. So, when I went to Dad’s for a special breakfast last Saturday morning I unplugged the timer and put the tree lights switch where Dad could easily turn it on and off himself. The timer has been retired!
Tonight after practicing our Tai Chi, Dad made the comment that he really liked the new switch for the tree lights.
So, remember to simplify. No high tech timers.

Boppa Blog Issue 5

Social gatherings are vital for Alzheimer’s patients and caregivers.
Tenet #5 in Learning To Speak Alzheimer’s by Joanne Koenig Coste
“Enrich the patient’s life” (127).

A Blustery Day!
The holidays are over and the reality of winter has set in with a solum frigidity. Dad received many new ornaments, art work, shirts, posters, and a new watch for Christmas. Last Tuesday Lorrie and I started Tai Chi back up and we did a little furniture arranging to give Dad’s apartment a 2009 look. I thought Dad would call the next day and say “Who moved my furniture?” Instead he called Lorrie and told her he loved it! Sometimes a little change can help with the winter blahs.
We have chosen not to take Dad outside since the temperature has been zero or below, because he is prone to bronchitis. So, today I’m going to take over the frames I got for his airplane posters my brother gave him for Christmas. I will assemble them and we will watch a movie with him. Lorrie is going to meet me there to help hang the posters in his bedroom. I thought it would be fun to give his bedroom an airplane theme. We can put together some B 17 and B 24 model airplanes and hang them from the ceiling. Dad loves to tell people about when he was in the army and put some 60+ hrs in the Liberator B 24.
Today would have been Dad and Mom’s 60th wedding anniversary. My daughter got married on this day 11 years ago. Happy anniversary Michelle & Richard!

Hope this finds you all healthy and staying warm.

It looks cold outside but cozy inside! I am so thankful Richard and I chose this day to get married. It reminds me of one of the best couples I've ever known! I only wish I could give Boppa a big hug. It's hard being so far away from him, but it helps knowing that there are loved ones around him keeping him busy!



Boppa Blog Issue 6

“Tenet #4: Live in the Patient’s World: Behavioral Changes” Joanne Koenig Coste (108).

Valentine’s Day
Lorrie and I went to Dad’s Valentine’s Day party on Saturday. The entertainment was Leander, who sings a lot of Motown songs. We sing along and do a little chair dancing. The little lady sitting at the table with Dad is Marion, she is ninety-five, feisty, and funny. It was a fun wintry afternoon.
Today was Tai Chi Tuesday - We exercised for about thirty minutes. Then we looked through the little photo book I brought for Dad of Sam & Aja’s wedding. I had forgotten the envelope with Ceci’s latest photos. I will have to bring them Thursday, when I meet Lorrie and Dad at the Geriatric Clinic for his checkup. This is what caregivers do a lot. There’s always another doctor appointment. And even though the neurologists did not see a change in Dad’s latest CT scan, Lorrie and I have observed a big change in his memory in the last year. Our adventure with Alzheimer’s continues.