Friday, February 18, 2011

My support group

Hopefully you will remember that Linda and I have joined an Alzheimer's Association support program called EASE. We meet every Friday and both of us look forward to that meeting. We find the members of the group interesting, real, and genuinely concerned about each other. The staff and the students, that are all working on PH D's in psychology, are helpful, full of information, and also concerned about our well being. The person who is the prime mover is a geriatric specialist with considerable experience. I find that individual a wealth of knowledge and understanding. Today's meeting was about "Communications". Yes, I know that i the business world, the military, and in academia, "Communications" is discussed by every consultant, professor, and success guru, that can write a self-published book! But that was not what we discussed. Instead, we discussed the problems with communication between those of you who are not diagnosed with a dementia related disease and those of us who are. There is a real problem here and it is not the obvious one you think I am going to refer to.

The speaker for today, also, a geriatric specialist with an advanced degree and a wealth of experience, told us that to communicate, both parties MUST accept the diagnosis! I immediately agreed with that person, since I have run into and had run ins with, people who absolutely do not believe that I have dementia. I have been called as much as a liar! Now, I have been totally open with friends, family, and acquaintances, about my diagnosis and the struggle I am under going. Yet, some people deny that I have a medical issue. I have been told to get a day planner, get organized, work away from home, go back to work, and any number of prescriptions from non-medical people. So, when that topic came up, I was ready to cheer. But, the professional told us that the diagnosed person must also accept the diagnosis, and stop trying to be what they always were! That took me by surprise. I have told you in past postings, that I wear myself out, daily, trying to appear normal. By the way, it no longer works. This professional told us it was OK to let our symptoms show, and to stop trying to do that which we know that we can't. That was a very liberating statement and one that I am going to take to heart. I am not who I was two years ago. I cannot do what I used to be able to do, and I never will be. I am not going to get well, only worse. And it is time that I and everyone around me accept that!

Linda and I have had some very good, very frank, very forward looking, conversations on this topic over the last few days and we have come to one conclusion, we are going to do for us. We are going to spend time together, doing what we have always wanted to do and did not do because of some responsibility to our career, our son, our church, and organization, a meeting, or anything outside of she and I. That does not mean I am shutting any of you out. As a matter of fact, you may see us more often. The real issue is that WE are going to run our schedule, not someone or something else.

I remember, a long time ago, when I had first made Chief. I was on the USS Stein in San Diego. My Dad had flown out for a visit and we were having a dependents cruise the day my Dad was scheduled to fly home. I dearly wanted him to stay and get underway with us for that day. I could have shown him things he never would have an opportunity to see. I was proud of my Navy and what I did for it. But, he had a bowling banquet he wanted to attend, so he declined. Until the day he died, he told me how much he regretted that decision!

I do not want to regret not doing something, seeing something or someone important to me, and especially, I do not want to waste a minute of time that I could spend with my wife. Yes, today's meeting was very good for us.

1 comment:

  1. I just found your blog today and I was so glad I did. I wonder if you would contact me, gordon@alzcare.net. I work with alzcare.net to find resources of information, encouragement, and support for our readers. We'd love to feature your blog. Thanks.

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