My Pal Alz
By Larry L. Hamilton
KAREN STOBBE asked me to write about my experience with Alzheimer’s Disease with the idea that I might be able to help newcomers to the disease “get prepared” for what comes next. People who have known me for a long time know that I love to talk, and probably some of them tried to warn Karen..... Too late kid. I’ve got the hammer and I’m putting it down! I did promise Karen and my wonderful wife, Miriam Freeman, I would not use profanities - no matter how appropriate they are for describing my new pal ALZ. Here goes.
I was diagnosed with having somehow foolishly acquired the disease in January 2016. I had read a lot about it. I met it face to face when one of my favorite cousins, Helen Chambers, of Rockmart, GA (my birthplace, too) was nearing her last months. It ain’t pretty. She was a wonderful devout, humble Christian woman. The disease is not contagious, I didn’t catch it from her. It was just sort of a “family tradition” that someone would carry it on. She became a role model for me. It took awhile for me to find a way that I could carry on as positively as I could. She died NOT of ALZ, but of Natural Causes. That is my goal, too - In Your Face, ALZ!
I am 73, nearly 74. My wife and I have been zealot fitness runners for about 40 years. We arrived in Asheville from SC about 10 years ago. We live on a beautiful mountain in N. A’ville. We run on the mountains daily. Read this next sentence at least twice! RUN FOR YOUR LIFE! ALZ is very tricky and subtle, with a sick, sick sense of humor. It will gleefully try to convince you that you should “rest” and avoid “stress” because YOU are SICK with a killer DISEASE, with no KNOWN CURE AS YET. That is an ALZ “cover” for trying to murder you as soon as possible. Other folks, including most of the medical people who are trying to save/prolong our lives, often fall into the “trap” of saying “You get some rest now, you hear?”
ALZ is delighted if you just accept it literally. But, it is a mistake. Medical professionals also preach, loudly, that staying physically active is the #1 requirement for keeping healthy. Common sense should prevail. Pay attention to your Doc. Stay as healthy as you can by exercising regularly, by whatever means you can, for as long as you can. Hot soup is still one of the few tools that will make you feel a little better almost instantly.
Clearly, the rate of increase in ALZ and related diseases is threatening to overwhelm both institutional and At Home caregivers. I want to try and explain what has worked for me, so far, in attempting to maintain the best quality of life as reasonably possible, for me and our family.
#1. If you already are at a healthy weight, and eat healthy, you want to maintain that level of fitness. (BE HONEST!) A test is to compare your current weight with your HS Graduation weight. ALZ, almost daily, sends my brain all kinds of “excuses” about why I shouldn’t run today. I grit my teeth, and start walking up the mountain - it’s a paved road that dead ends at the driveways of a few homes. Beautiful views of the city. Some days, I can run, some days, it’s safer if I walk - balance issues. My wife, or someone, always knows where I’ll be. If you already are reasonably fit - including diet and weight, etc., consider challenging yourself to do a little more - because, it is absolutely TRUE, that you are NOT getting any YOUNGER! And, you are going to get SLOWER! Go farther, longer! THAT is one way to spit in the face of ALZ.
#2. This is No Man’s Land. I’m going way out on a limb here. Make yourself available to share with others who are “Newbies” to the disease, what your personal experience is like - “so far” - and what both the person with Alzheimer’s and the caregivers have to look forward to. Make sure you tell them, that THEIR experience, may be different than your experience simply because you are different people with different histories. YOU WILL FEEL BETTER because YOU can still do something very valuable to help others. There are many support groups in Asheville; explore them! You can offer and receive first hand advice to/from your fellow travelers. I’ve begun developing anti-ALZ jokes for publication, but keep forgetting them - so it’s sort of slow going.
#3. DO NOT QUIT! My attempts to sort of “personalize” my pal ALZ, probably isn’t for everyone. It at least gives me a way to maintain a fairly consistent means of keeping my mind/memory separated from ALZ, which is sort of running amok, off and on. When I lie down to sleep at night, I enter an environment of non-stop quasi-conversation that doesn’t stop. I mostly am just a listener/observer, but, have gotten engaged in “dialogues” - and have awakened myself, laughing out loud that “they” have “sucked me in” to “their” world. A week or so ago, I had a dream “experience” where I was watching a tour of beautiful works of art streaming slowly by. It was a very pleasant experience. And then, I had the sensation that I was looking at something “forbidden” and it started speeding up and then suddenly disappeared and I “woke up”. At least ALZ, so far, has provided some interesting, even entertaining dream time experiences. Let me make it clear. I have 2 tracks in my head when I sleep - one is a non-stop muttering, gentle dialogue in the background. The other is a sort of “normal” track where I may or may not have a “dream”, but, that is when I go into “normal” sleep mode. I haven’t figured out yet exactly how/why that double track exists, but, it’s there. I learned in the Army about going to sleep every time you get a chance....It’s easy for me.
#4. In summary, DO NOT QUIT! Stay as physically active as you can, tell your partners to help you do it. DO NOT WHINE! Make commitments to go places, especially if you can find a way to be of help to others by sharing your experience, so far - as best you can. Do something sort of adventurous that in your pre-ALZ life you never would have considered as “fun”. Make a “To Do” list of a few things involving fitness, fun, learning a new skill, and write some poetry. There is no such thing as a “bad” poem.
Let them sit, they just need a little editing. Send me a copy. I’ll reply.
Cheers. Larry Hamilton
We went to visit my Mom on Sunday. She lives in a family group home about 35- 45 minutes away depending on who is driving. She is always happy to see us when we walk in the door. Does not know our names but knows we are "her people ". Hugs and laughter abound. We had decided to take her out on a field trip. Checked with the owner and she said Mom had just gone to the bathroom. Good.
Mondy (my husband ) was driving and Grace and I were in the back seat. Mom just started laughing and talking about whatever she saw and waving at everyone as we drove. She started to get a little too handsy with Mondy - her/my husband so we pulled over at an overlook and switched drivers.
She continued laughing, but wanted him to hold her hand from the back seat. Sometimes he is my husband and sometimes hers. We decided to stop at the Folk Art Center to take a look around. It is basically a shop that sells hand crafted items from artisans in this area. Thought she would love to see the beautiful pottery, quilts and other crafts. She started to get very upset and saying,
"Oh no. I need to sit down. " Came very suddenly. So we went over to the benches to sit.
What we soon realized is that she has become incontinent. We didn't know. She had a pad on but we did not think to come prepared for our field trip. So we ended up having to drive her back to her new home so she could get a shower. It seems that when out of her element she can;t find the way to tell us she needs to go but there at home she knows where it is or to say it to those who work there.
We don't want to give up on field trips so we are putting together a 'family bag'. Clean underwear, a Depend brief, wipes, bottle of water, snack in case her blood sugar goes down and some hand sanitizer.
Just thought that may help you too.
The most important thing in communication is hearing what isn't being said.
Peter F. Drucker
I think this is so true with persons living with dementia. We need to be aware of body language so we can see what we don't hear. Watch for subtle things or emotional responses that contradict words.
When you are struggling with communication there are other ways to express your feeling that the person may not even be aware the are doing.
Not just with our ears. But with our eyes and whole heart.