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.
Sunday, December 28, 2014
Thoughts on End of LIfe
While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.
But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.
So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.
Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.
Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.
Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.
He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.
Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.
What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.
I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.
If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.
I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.