A few weeks ago the Register ran an editorial by me entitled “My Life With Alzheimer’s.” I am a mid 70’s year old retired business owner that got the diagnosis a month ago from Mayo Clinic. In my research about my disease I found most writings about Alzheimer’s are from medical professionals.
I felt it might be useful to hear from someone on what I call “the other side of the veil”.
Because most of my working career was spent either working with associations or running a company that managed associations, the first thing I thought about was finding out what organizations were devoted to Alzheimer’s. Luckily for me (and others) there is a strong chapter in Iowa of the national Alzheimer’s Association. The first thing my wife and I did was to make an appointment and then go out to meet the Executive Director, Carol Sipfle. We learned that there are a number of small groups for caregivers and people on “my side of the veil“.
Carol also explained a number of programs, conferences and ways to participate in the organization. My best advice is if you are a caregiver, patient, relative etc. is to get involved. Again, my mantra is “you are not alone” and the best way to feel that is to be around others in similar circumstance. Plus, what I saw in the association offices was a group of committed people working to make life better and find a cure. Their local phone number is 515-440-2722 and the national help line number is 1-800-272-3900. I should also state that if you don’t have Alzheimer’s, but another disease; Parkinson’s, COPD, Cancer etc., the advice still holds true--it’s worth getting involved in the appropriate association.
One thing to keep in mind is that the extent of this disease is pretty big. Research shows that one in ten over 65 have, or will have Alzheimer’s. In Iowa there are about 492,000 over 65. That puts the Alzheimer’s population at about 49,000 plus a couple thousand more under 65 who have early stage Alzheimer’s.
All that said, I want to answer a question a number of folks have asked; what is it like on a daily basis to have this thing? Well, days vary. Yesterday, the day went pretty well, but the night was a bit rough. I usually go to bed at 9:00 hoping for a good night’s sleep that rarely happens. Last night after going to bed I got up after an hour and walked the house in darkness working to remember where the walls were, the light switches, especially trying to remember where the stairs were so as not to fall down them in the dark. Since I designed and built this house one would think that would be easier than it is. I did take a break at about 2 am and watched an old Star Trek episode. I finally fell asleep at 4 and then got up at 6. That kind of thing varies from night to night with no set pattern. I would guess, like me, most Alzheimer’s patients are older and other medical problems can exacerbate any pure discussion of Alzheimer’s.
Other issues are appearing as well. For instance I am becoming fixated on putting things in their correct places because consistency is critical at this stage. Change has become a very dirty word and something to avoid.
We have now placed a basket near where we exit the house, where, keys, notes, my rescue inhaler, headphones etc. are kept. Basically all those little things which you know have legs and the ability to hide from you just as you need them. The trick now is to remember to return them to the basket.
Enough for now, please come up and introduce yourself if you see me at an Alzheimer’s meeting, I hope to be at a few.
Dick Goodson From the other side of the veil.