Periodically I will add posts here if the sources provide additioanl informaiton on how to think about and deal with Dementia/ Alzheimer's Disease.
SCROLL DOWN FOR TEXT and BIBLIOGRAPHY from DAI WEBINAR 2/22-23/2017. You can also find this information on my website: www.horvich.com
Even though this blog is now dormant (see info below) there are many useful, insightful posts. Scroll back from the end or forward from the beginning. My guess is that you could spend a lot of time here and maybe learn or experience a thing or two about living with and loving someone with Dementia/Alzheimer's or maybe come away with the feeling that "you are not alone" in YOUR work with the same!
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THIS WAS THE FINAL POST TO THIS SITE BEFORE IT WENT DORMANT.
Happy New Year 2016. With a new year comes new beginnings and sometimes endings. If I am personally progressing and if I am doing a good job in my grieving Gregory's death; if I have been able to learn my lessons in living and loving someone diagnosed with Dementia/ Alzheimer's; if I am to get on with my life ... I need to bring this Alzheimer's blog to an end since my writing has been dealing less with Dementia/ Alzheimer's and more with life after Dementia/ Alzheimer's.
Of course, I will always continue to work for and support fair treatment on behalf of people with Dementia/ Alzheimer's and may post here from time to time. Also, there are many wonderful posts here through which you may browse.
With this change, I will continue and reinvigorate my "michael a. horvich writes" blog which deals with grieving Gregory's death, life lessons, personal experiences, observations, memoirs, dreams, and humor in essay and poetry, as well as an attempt now and then at sharing a piece of fiction.
Please follow me there by clicking http://mhorvich.blogspot.com or click the link located on the right side of this page.
Finally, COMMENTS are always important to me and you can still comment on the posts on this blog! CLICK "Comments" and sign in or use "Anonymous." Leave your name or initials if you wish so I'll know it's you? Check the "Notify Me" box to see my reply to you.
Tuesday, June 2, 2015
A Dialogue About The "Dementia" Label
AND MY REPLY BACK TO KATE:
LOL at the tweet. Neither Gregory nor I would have ordered "dementia" if we had the choice. Also the testing he underwent was to rule out other causes for the changes he was experiencing.
Something was wrong, very wrong and we had to take a close look. His day to day was suffering; his high end architecture and interior design firm (which I was managing after having retired from teaching) was feeling the effects; employees, friends, and family were noticing subtle changes and either took me into their confidence or said nothing (until later.)
Besides the tests mentioned above he underwent a complete psychological examination that showed unexpected deficits in a number of areas. So we exhausted all possible reasons to account for the changes in his behavior, cognition, decision making, judgement, etc and did so within a few months. We would have been grateful to find out that there was a "culprit" causing the difficulties that could be treated. But all "arrows" pointed to dementia with a probable Alzheimer's.
So having exhausted all possibilities, we chose to go with the best we knew based on help from our wonderful medical team. Label or no label things were changing and we had to change with them. I had guessed, based on the symptoms I was observing and on my research, that it was really Frontotemporal Dementia. But the brain is a cooperative organ and eventually symptoms generated by all parts of the brain began to show up over time.
So in short: It is said that by labeling something can give us a false sense of security because we can "name" it and don't have to do anything about it. The good sense of security is that we can come to grips with it and plan for the eventuality of "it." We must not let the label stop us from looking further for a cause and becoming complacent.
The label did help us get our private disability care, it provided a case for us to win a case against his group disability insurance company, it succeeded in getting U.S. Social Security Disability Insurance approved, and finally it kick started Gregory's ability to receive Medicaid from the government. We are not a wealthy family so these various sources of income have helped us cope with the dementia more successfully and more comfortably.
Finally and least important is that telling family and friends that "Gregory was diagnosed with Young Onset Alzheimer's at age 55," helps frame his needs, my needs, and our situation.
Call it Dementia, (does one capitalize it?) Alzheimer's Disease, Frontotemporal Dementia, or whatever ... it is what it is and we have been doing a fine job of living with it for 11+ years now. I know that it will become more and more difficult for Gregory (and me) as time continues but I will be there for him and through his losses, our memories and his life spark will be there for me. It all comes down to "Love." Thanks Kate.