Yesterday, July 4, we went to a barbecue. 167 people sang Happy Birthday to Dotty. She was very pleased, smiled and said -- Thank You. I was looking forward to how she would react. You never know with someone suffering from Alzheimer's disease. I was very happy to see her reaction.
I was reminded of the two year period when Dotty didn't smile or laugh once -- not a single time. This was before we discovered there was a problem with her thyroid. You can read about that here -- Thyroid and Alzheimer's.
While we were there, Dotty reaches over and opens a big bag of cheese twists (those narly looking big orange things) and starts munching away. I say, Dotty, those are not yours. She tells me yes they are, I brought them. I say, they belong to Rhoda and you have to ask her if its OK. Dotty says, who the hell is Rhoda? I point to Rhoda who is sitting right across from her. Dotty, big mouth working, announces that is not Rhoda. Josephine tells Dotty, yes it is. Everyone laughs.
I had to remind myself not to get uptight in this situation. Took a few deep breaths. Alzheimer's care giving is never easy. You are always on the job. I did OK, but not as well as I would have liked. It is harder to switch in and and out of Alzheimer's World when there are a lot of people around.
Next thing I know everyone is pushing Chez Its and all kinds of crappy, salty foods on Dotty. I try to tell these older folks over and over not to give Dotty "crap to eat." She gets small amounts of "crap to eat" at home each day. Pretty soon Dotty is turning pale and saying her stomach is starting to hurt. We have not yet made it to the birthday cake and birthday song. We might not make it.
Thankfully, as usual Dotty rallies.
Next thing I know, they are feeding Dotty more "crap". Did they already forget Dotty turned "white" and said she had a stomach ache? I think, Dotty is going to have a "whale" of a headache tomorrow morning and she is going to be holding her head before I know it in the morning. She will be dehydrated for sure. It is now tomorrow morning and Dotty has a "whale" of a headache. The water flows right into her.
Previously someone asked what the difference is between caring for a child and caring for someone suffering from Alzheimer's disease. There are more similarities then most people might think. The similarities include pee and poop by the way.
I did learn something from the wonderful people on this blog. I did increase Dotty's in-take of eggs which I justified under the heading of "good source of protein". I also went back to giving her her six potato chips on most afternoons. However.
It is not true that you should give an older person anything they want to eat just because they are old. In fact the exact opposite is true. The older you get the harder you should try to eat a good diet. You wanna be running around having fun when you are 85 -- eat right, live life to the fullest.
I don't know how many of you will be around on my 120th birthday, but for those of you that are -- I'll still be walking. I am looking forward to my 80th birthday, by then Max Wallack will be making it happen, and I'll be telling stories about him right here on this blog. Not to mention the 100,000 plus puzzles from Puzzles to Remember that will be floating around the world.
OK if you made it this far, now to the headline of this article.
As we are coming in the door last night I say to Dotty, hey, do you wanna go downtown for the fireworks tonight? Dotty says, remember that women that gave me the chair the last time we went down to the fireworks? Yikes. That was at 11:50 PM on New Year's Eve -- December 31, 2009.
This is a long story, but I'll try to keep it short and then get to the moral of this story.
I can't take Dotty into the fireworks in Delray Beach anymore. On New Year's Eve they are held in the tennis stadium which is adjacent to downtown.
In order to get in, you have to park in a lot and take a long walk. It is still a very long walk into the stadium once you get to the entrance. Now some of you might be thinking, why not put Dotty in a wheelchair? Lets put it this way, I have a better chance against an alligator then I do of getting Dotty into a wheelchair to go watch the fireworks.
However, I am what can best be described as a Bunkhouse Logician. I did figure out a way to get Dotty to the Fireworks.
There is a big empty lot behind the tennis stadium. They cleared it for a condo development that never happed. I don't know why, but nobody parks in that lot. Well put it this way, nobody parks in that lot until they see me do it.
While everyone is parking a mile away (the price of trying to get there at the last minute), Dotty and I pull up 15 minutes before the fireworks start,park in the empty lot, and we are good to go.
Here is an oddity, we have a better view then the people in the stadium. In fact one year when it was windy, the casings from the fireworks where raining down on us.
Ok, back to New Year's Eve.
Dotty and I jump out of the car and walk about 30 feet to get a birdseye view of the fireworks. Lo and behold, a young woman and her husband come walking along with two beach chairs. They ask, is this a good spot to watch the fireworks? I tell them, the best. They open up the chairs and take a seat. About 30 seconds goes by and the woman gets up and insists that Dotty sit in her chair. Insists. Dotty takes a seat and is one happy clam.
Meanwhile, I am thinking, what the hell is wrong with that guy. He doesn't even bother to offer his wife his seat. He never did.
Women, the best, what can I say. Men, well I am one so lets just leave it at that.
Now to the moral of the story.
This is a good example of how Alzheimer's disease messes with the mind of the Alzheimer's caregiver. How can you resist thinking that when something like this happens -- Dotty Remembers -- that things are going to get better. That maybe, just maybe its not Alzheimer's? Maybe they got it wrong.
Let's face it. How can you help getting all happy when something like this happens. I did get all happy when Dotty remembered, I am still happy, and I am still thinking about it.
Keep in mind, I am a six year veteran of the Alzheimer's war. I still get hopeful.
I did learn as an Alzheimer's caregivers that these lucid, remarkable moments do happen from time to time. They do fill you with hope. Hope that it isn't Alzheimer's after all.
Sadly, you learn that all it is, is a wonderful moment in time. You need to learn not to get "too high" on these moments. If you do, the "crash" is just so much harder to accept.
Alzheimer's disease is a sinister disease. It kills the brain of the person suffering from Alzheimer's disease. It tries to kill the brain of the Alzheimer's caregiver by taking them on an emotional roller coaster ride that is designed to break you down emotionally slowly but steadily.
As an Alzheimer's caregiver you need to learn to enjoy those rare moments of lucidity. To be thankful for those moments, or those days. You need to put them in a proper context. I know from experience this is not easy to do. Never, ever.
So right now, I am really happy for the moment we had last night when Dotty remembered. It startled me even after all these years. It made me feel happy to hear her act and sound the way she did in the period best know as B-A-D (Before Alzheimer's disease).
Is a miracle about to happen? No. But the thought that it could, is still something I cannot resist.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 94 years old, suffers from Alzheimer's disease. We live our life one day at a time.
- 60 Good Reasons to Subscribe to the Alzheimer's Reading Room
- Alzheimer's CareGiving -- Insight and Advice
- Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
- Communicating in Alzheimer's World
- Worried About Alzheimer's Disease -- You Should Be
- What is Alzheimer's? What are the Eight Types of Dementia?
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
- Alzheimer's Disease Statistics
- Is it Really Alzheimer's or Something Else?
- Ten Symptoms of Early Stage Alzheimer's
The Alzheimer's Action Plan
300 Tips for Making Life Easier
Original content Bob DeMarco, the Alzheimer's Reading Room