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.

Tuesday, February 8, 2011

Who is "That Person" in the mirror?

Have you ever looked in the mirror and not recognized the person looking back? I have, and it is not fun at all. I don't recognize myself and I know that I am not who I once was. But what is more frightening is that I do not know who I am. Yes, I know my name. But what makes me; my memories, my past, my profession, my dreams, are all fading. I live for the moment that I am in. I cannot remember, easily, what happened through the day, when I lay down to go to sleep. I have to concentrate to remember people's names that I should know. The names of people I have know for decades are just not there anymore. What is even more bothersome and frightening, is that I cannot plan for the future. I no longer see a future. I only see today, and I see that in a fog.

I remember 1991, a year of extreme sorrow and anguish for me. My Dad, whom I was very close to and loved dearly, passed away, my Father -in-law passed away, and my birth Mother passed away. All of these people meant a lot to me and I still miss them. Their memories are more dim to me now, but the pain is not. But I was able to survive that time, because I knew there was more to come. More life to experience, more challenges, more victories. This anguish and pain is deeper, because I know that I am fading into darkness. I am slowly disappearing from my own memory. I know there is nothing else after this. The person who looks back is a stranger to me know. And I don not want to get to know him.

Sunday, February 6, 2011


I have just figured out something in my life, that many of you who are also dealing with a dementia issue may have already known. That is, the stress of dealing with the reaction of others, to my disease, is causing me great difficulties. I honestly just figured this out in the last few moments. And, honestly, I don't know what to do with it or about it. I see a number of reactions to my condition, especially since it is becoming more apparent to everyone, that I am progressing more and more. I see anger, disbelief, disapproval, sympathy, sadness, horror, and even shock. One day, not to very long ago, we were in a restaurant, and as is now the process, Linda was ordering for me. The waitress was very disapproving of this arrangement. I guess she did not know what was going on, but she was really shocked. Some people talk louder to me. I guess they think I can't hear them or maybe I forgot HOW to hear! Trust me, I can't remember but I hear fairly well in my left ear. My right ear is of little use because of the MK 42 5"/54 Naval Gun.

However, I am writing this to ask for some input from those of you who read this Blog and are dealing with the same issues. Am I being over sensitive? Or do you see the same things also. I will also ask the EASE support group people also.

Thanks for your help.

Friday, February 4, 2011

The "Title's" new but I am the same old guy!!

I have changed the title of my BLOG to "Sharing my life with Lewy Body Dementia" because that seems to be the correct diagnosis, at least for the present. Since diagnosing any memory effecting neurological disease seems to be like shooting fish in a barrel in the dark, I will go with this diagnosis for the present. I LIKE to be accurate. I guess it's the "Monk" in me. So, I hope it does not cause any of you too much trouble.

Linda and I have enrolled in an American Alzheimer's Association study. We are now part of the EASE program, "Early Alzheimer's Support and Education" program. It is exactly what I need and wanted, contact with others that are dealing with the same issues that I am. It is a group of patients and care givers. Now, I know what you are thinking; He does not have Alzheimer's. True, almost. It seems that the medical field and the Alzheimer's Association are grouping all "Dementia's" under the Alzheimer's banner. I guess this makes sense since the symptoms are similar and the medications are all the same. And, remember what my GP said; "The only way we will know for sure, what you have is to wait until you die, and cut the top of your head open." Sounds drastic, but it is true. I really appreciate his honesty and candor. I have never wanted to be molly coddled. The truth always works for me, even if it is uncomfortable.

In any case, this group is very good for me and I enjoyed our first meeting. There is a safe feeling with the group and an openness that I appreciate. Unlike work groups, there is none of the "territory marking" that goes on in the corporate world. Just honesty, openness, and an honest desire to help each other while asking for help.

I will keep you informed, while keeping the group's privacy in mind, as the program develops. I remember when Linda's Dad had Alzheimer's. There was no Alzheimer's Association, no drugs to extend the quality of life, and no professionals with an advanced degree in Gerontology to help us. Now, Linda and I have a support group made up of family, church, friends, medical professionals, and other with the disease. This is the best way to handle a difficult situation.

Another issue has arisen, I participate in a wonderful international Bible study called "Bible Study Fellowship" (BSF) I am a Group Leader in the program, and as such, I lead 15 men through a specific Bible study each week. Last week, during the "Leaders Meeting", I was leading the leaders through the study questions and I lost my place. I did not know what question was next. I was completely lost and I told them so and asked them which question we were on. They graciously directed me back on track and we picked up where we left off. After that exercise, I told my fellow leaders about my condition. It surprised some of them, our Teaching Leader already knew since I told him before he asked me to be part of the leadership. Their caring attitude, acceptance, and love, was overwhelming. I was concerned, no, afraid is a better description, that my condition would show up and cause me issues. Now I know that, even if it does, it's not a show stopper. That is important to me. I need acceptance, not denial, from those around me. I learned that last Monday night, from the men of my BSF group.

More later.