Marie Marley, Read this article and thank you thank you thank you. It is the first one which I have read (or seen) which handles the topic of psychotropic drugs realistically.
Usually the drugs are condemed for being used to over-sedate a person on behalf of making it easier for the caregiver or caregiving facility. Also the finger is most often pointed at the possibility of causing premature death in the elderly and that the research (and drug company) does not support its use.
With the help of our doctors, nurses, hospice, and health care facility; I decided to put my Gregory on a very low, vary carefully monitored dose of Risperdal. He was becoming more and more unhappy, agressively acting out (but not violent,) and agitated.
We tried to see what we could change in his care routine and in our comminications (given his inability to work much with language) but were not successful being able to help him to be more comfortable with his life.
The mild dose of Risperdal gave him a new life, one in which he was again content and enjoying his life (given the circumstances.)
Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts
Wednesday, March 28, 2018
Tuesday, January 5, 2016
TBD (Thanks, Browse, and Defect) To Be Determined
Dear "michael a horvich cares about Alzheimer's" Blog Readers,
I continue to get many hits on the old site http://mhorvichcares.blogspot.com and I am grateful for that. Look around, browse back through the close to 1,500 plus posts which have received over 74,000 hits. and experience the journey of Gregory and my Dementia/ Alzheimer's experiences, observations, lessons learned, etc.
... but I have taken a big risk by beginning to post only to my writer's blog (http://mhorvich.blogspot.com) since the posts are now about me, about grieving Gregory's death, about living beyond Dementia/ Alzheimer's. The risk is that I will loose some of my readership and that loss makes me sad.
So please, please, please enjoy and learn and grow (if I may be so bold) from my posts on the Dementia/ Alzheimer's blog but also come on over to my writer's blog for future adventures with Dementia, Grieving, and learning more about me and my musings, poetry, observations, essays, humor, fiction, etc.
The "michael a. horvich writes" blog is not new and currently has over 608 posts with 19,966 hits so there is a lot to read there. P.S. Feel free to comment on what you read!
Looking forward to seeing you there,
Michael
NEW SITE: http://mhorvich.blogspot.com
I continue to get many hits on the old site http://mhorvichcares.blogspot.com and I am grateful for that. Look around, browse back through the close to 1,500 plus posts which have received over 74,000 hits. and experience the journey of Gregory and my Dementia/ Alzheimer's experiences, observations, lessons learned, etc.
... but I have taken a big risk by beginning to post only to my writer's blog (http://mhorvich.blogspot.com) since the posts are now about me, about grieving Gregory's death, about living beyond Dementia/ Alzheimer's. The risk is that I will loose some of my readership and that loss makes me sad.
So please, please, please enjoy and learn and grow (if I may be so bold) from my posts on the Dementia/ Alzheimer's blog but also come on over to my writer's blog for future adventures with Dementia, Grieving, and learning more about me and my musings, poetry, observations, essays, humor, fiction, etc.
The "michael a. horvich writes" blog is not new and currently has over 608 posts with 19,966 hits so there is a lot to read there. P.S. Feel free to comment on what you read!
Looking forward to seeing you there,
Michael
NEW SITE: http://mhorvich.blogspot.com
Saturday, December 12, 2015
Perspective Changes
Interesting how one's perceptions of life change when an important person in one's life dies.
When my mom and dad died, I wrestled with how someone could be here today and gone tomorrow. Wondered where that energy went. Wonder where our time together went from my being a child, to a teenager, to a young adult, to a full grown adult (if one ever becomes full grown.)
I missed them. I grieved not only their death but what I considered the missed opportunities for parent/son relationships and how different it could have been if they were different, if I was different.
Acknowledged that I was grateful for many opportunities they did provide and for the love that existed. Acknowledged that they did the best job of parenting that they could and that I did the best job of "offspringing" that I could.
Now, with Gregory's passing, my perceptions of time have been shifting and the shift has caused me to do some deeper thinking.
Gregory and I lived, and we worked at living well for twelve years, with his diagnosis of Dementia/Alzheimer's. At times our life felt normal and at times we also felt like we were living on a roller coaster as his needs confounded, our interactions became surreal, his abilities failed and resurfaced only to finally fail again.
Now when I think about those twelve years, it feels like minutes. At the time it felt like forever, but now that the confusion, frustration, anger, sorrow, fear, etc no longer exists, it feels like moments.
Gregory spent the last 18 months of his life at the Lieberman Center for Health and Rehabilitation on the Alzheimer's Special Care Unit. At the time it was a day in and day out activity. Grateful to Manny for providing not only care and safety for Gregory but also for the love, socialization, and life enrichment he provided on a day to day basis.
When Gregory's health needed extra attention or his medications needed rebalancing or when his difficult behaviors needed a look see; my life would feel topsy turvy. But once the Lieberman nurses, doctors, hospice care, and I did our problem solving; things settled down for both Gregory and me.
Now, with Gregory on his next adventure, without my daily visits, and the Care Conferences, and the monitoring of his daily needs and treatment; it feels like Lieberman was but a breath.
During the three days it took Gregory to die, I saved many vivid, sometimes difficult and sometimes joyful, memories of the process. None-the-less it feels like those three days were shrouded by a certain numbness.
The planning of two tributes for Gregory was easy. Gregory's Memorial at the condo (attended by over 100 family and friends) was gratifying and consoling as was the Lieberman Memorial to thank them for their care and support (attended by over 150 staff, residents, and families at Lieberman the following week.)
Now, when I think of Gregory, it feels like his dying was but an instant and at the same time that he has always been dead, when if fact it is just over two months since he died. Strange feeling - ALWAYS been dead.
The thoughts which next occupy my mind then ... based on Gregory and my twelve years seeming like a moment, and his Lieberman stay feeling like a breath, and his death feeling like not only an instant but also forever ... are that my life, now, will last just a few moments longer with the lesson being that I must live each day to its fullest doing things that matter to me, spreading joy and love whenever I can, and doing the best I can without being too unforgiving of myself and my weaknesses and being forgiving of others.
In this thinking and these awarenesses, I focus on the buddhist teachings which explain that our suffering is based on permanent attachment to things which are ever changing. Nothing is permanent.
When my mom and dad died, I wrestled with how someone could be here today and gone tomorrow. Wondered where that energy went. Wonder where our time together went from my being a child, to a teenager, to a young adult, to a full grown adult (if one ever becomes full grown.)
I missed them. I grieved not only their death but what I considered the missed opportunities for parent/son relationships and how different it could have been if they were different, if I was different.
Acknowledged that I was grateful for many opportunities they did provide and for the love that existed. Acknowledged that they did the best job of parenting that they could and that I did the best job of "offspringing" that I could.
Now, with Gregory's passing, my perceptions of time have been shifting and the shift has caused me to do some deeper thinking.
Gregory and I lived, and we worked at living well for twelve years, with his diagnosis of Dementia/Alzheimer's. At times our life felt normal and at times we also felt like we were living on a roller coaster as his needs confounded, our interactions became surreal, his abilities failed and resurfaced only to finally fail again.
Now when I think about those twelve years, it feels like minutes. At the time it felt like forever, but now that the confusion, frustration, anger, sorrow, fear, etc no longer exists, it feels like moments.
Gregory spent the last 18 months of his life at the Lieberman Center for Health and Rehabilitation on the Alzheimer's Special Care Unit. At the time it was a day in and day out activity. Grateful to Manny for providing not only care and safety for Gregory but also for the love, socialization, and life enrichment he provided on a day to day basis.
When Gregory's health needed extra attention or his medications needed rebalancing or when his difficult behaviors needed a look see; my life would feel topsy turvy. But once the Lieberman nurses, doctors, hospice care, and I did our problem solving; things settled down for both Gregory and me.
Now, with Gregory on his next adventure, without my daily visits, and the Care Conferences, and the monitoring of his daily needs and treatment; it feels like Lieberman was but a breath.
During the three days it took Gregory to die, I saved many vivid, sometimes difficult and sometimes joyful, memories of the process. None-the-less it feels like those three days were shrouded by a certain numbness.
The planning of two tributes for Gregory was easy. Gregory's Memorial at the condo (attended by over 100 family and friends) was gratifying and consoling as was the Lieberman Memorial to thank them for their care and support (attended by over 150 staff, residents, and families at Lieberman the following week.)
Now, when I think of Gregory, it feels like his dying was but an instant and at the same time that he has always been dead, when if fact it is just over two months since he died. Strange feeling - ALWAYS been dead.
The thoughts which next occupy my mind then ... based on Gregory and my twelve years seeming like a moment, and his Lieberman stay feeling like a breath, and his death feeling like not only an instant but also forever ... are that my life, now, will last just a few moments longer with the lesson being that I must live each day to its fullest doing things that matter to me, spreading joy and love whenever I can, and doing the best I can without being too unforgiving of myself and my weaknesses and being forgiving of others.
• • •
In this thinking and these awarenesses, I focus on the buddhist teachings which explain that our suffering is based on permanent attachment to things which are ever changing. Nothing is permanent.
Thus early Buddhism declares that in this world there is nothing that is fixed and permanent. Every thing is subject to change and alteration. "Decay is inherent in all component things," declared the Buddha and his followers accepted that existence was a flux, and a continuous becoming.
According to the teachings of the Buddha, life is comparable to a river. It is a progressive moment, a successive series of different moments, joining together to give the impression of one continuous flow. It moves from cause to cause, effect to effect, one point to another, one state of existence to another, giving an outward impression that it is one continuous and unified movement, where as in reality it is not. The river of yesterday is not the same as the river of today. The river of this moment is not going to be the same as the river of the next moment. So does life. It changes continuously, becomes something or the other from moment to moment.
Take for example the life of an individual. It is a fallacy to believe that a person would remain the same person during his entire life time. He changes every moment. He actually lives and dies but for a moment, or lives and dies moment by moment, as each moment leads to the next. A person is what he is in the context of the time in which he exists. It is an illusion to believe that the person you have seen just now is the same as the person you are just now seeing or the person whom you are seeing now will be the same as the person you will see after a few moments.
Even from a scientific point of view this is true. We know cell divisions take place in each living being continuously. Old cells in our bodies die and yield place continuously to the new ones that are forming. Like the waves in a sea, every moment, many thoughts arise and die in each individual . Psychologically and physically he is never the same all the time. Technically speaking, no individual is ever composed of the same amount of energy. Mental stuff and cellular material all the time. He is subject to change and the change is a continuous movement.
Impermanence and change are thus the undeniable truths of our existence. What is real is the existing moment, the present that is a product of the past, or a result of the previous causes and actions. Because of ignorance, an ordinary mind conceives them all to be part of one continuous reality. But in truth they are not.
The various stages in the life of a man, the childhood, the adulthood, the old age are not the same at any given time. The child is not the same when he grows up and becomes a young man, nor when the latter turns into an old man. The seed is not the tree, though it produces the tree, and the fruit is also not the tree, though it is produced by the tree.
Taken from:
Tuesday, November 10, 2015
Current Info on Alzheimer's
On track to deplete Medicare in the U.S.A., Alzheimer's also has a number of promising developments in the pipeline.
Click here to read article. Opens in a new window.
Click here to read article. Opens in a new window.
Monday, November 2, 2015
Types of Dementia and More
Just read an interesting article about a variation of Dementia/ Alzheimer's in which the person affected had difficulties with vision. I saw a lot of this with Gregory as he progressed through his journey. Sometimes he could not see the fork sitting next to the plate in front of him. In the later stages of his Dementia, he had a difficult time focusing on things like the TV, a book of photographs, and at times on me!
As I have continued to study his "symptoms" it looks to me like he was affected by several types of dementia at one time including: Posterior Cortical Atrophy, Lewy Body, Frontotemporal, and Primary Progressive Aphasia which affects language.
A new type of Dementia is being called "Mixed Dementia." In mixed dementia abnormalities linked to more than one type of dementia occur simultaneously in the brain. Recent studies suggest that mixed dementia is more common than previously thought.
Recently, there has been a lot of activity and discussion in the following areas: 1) Types of Dementia, 2) Appropriate language to discuss Dementia and the people affected with it, 3) Including people with Dementia in decisions about caring for the needs of people with Dementia, and 4) A more careful use (if any) of psychotropic drugs with people diagnosed with Dementia.
As recently as ten years ago, not much was known about Dementia/ Alzheimer's. People were embarrassed to discuss the disease. Little was known about how to care for people with Dementia. While the knowledge base is increasing exponentially, much still needs to be done to understand the disease and to support people who have been diagnosed with one form or another of Dementia.
Perhaps one of Gregory's legacy's, through my blogging, can be to help "fight these battles" for understanding, equality, and support!
Sunday, October 18, 2015
Monday, October 12, 2015
Technologically Speaking: Revisited
Humor helps during times like this and over the twelve years sharing the Dementia/ Alzheimer's path with Gregory, I have developed a number of "sound bites" to describe transitions, experiences, attitudes.
Also, humor related, Gregory and I laughed a lot. Even when he had very little or no language left, something would happen, or he or I would say something, and we would both get the giggles, like to pee our pants!
After Gregory died and I said goodbye to the beautiful temple that was his body and home for 67 years, I developed this technological sound bite which helps me deal with his passing. Over the last several days I have been fine tuning it.
I have been referring to Gregory Version 1.0 to reflect the Gregory I have known and loved for the last 40+ years. All the changes through his life would be Version 1.1, 1.2, 3.1-2-3, 7.8, 9.9 through Version 9.999 etc.
Gregory Version 2.0 was Gregory during the 10 years he lived with Dementia/Alzheimer's at home with me at the condo. There were many upgrades (or downgrades) for this version as well.
Gregory Version 3.0 was Gregory during the close to 2 years he lived at the Lieberman Center for Health and Rehabilitation on the Special Memory Care Unit. There were fewer upgrades with this version.
Gregory Version 4.0 was as Gregory lie comfortably and peacefully in his room in his bed preparing to leave this world. There were even fewer upgrades with this version if only because by now he was close to perfection.
Gregory Version 5 as his body lay in his bed at Lieberman, at rest but definitely an empty vessel. I was worried that I would not be able to face him this way, but it was still my Greggy and I was able to hold his still warm hand, kiss his lips, and sit with him a while.
Gregory Version 6 as “Gregory in a Box” or his cremated remains. I was frightened of this experience as well but it turned out to be loving, comforting, and easy. His "carbon footprint" rests in his favorite Grandma Carrie's Sewing Box. The final Version will entail returning his remains to his favorite place that held his favorite activity: Swimming in Lake Michigan. I'll know when it is time to take Gregory to the beach.
and
Gregory Version 7 as my Guardian Angel. I am sure he will be "large" enough to be your Guardian Angel as well so feel free to ask him to be there for you!
Also, humor related, Gregory and I laughed a lot. Even when he had very little or no language left, something would happen, or he or I would say something, and we would both get the giggles, like to pee our pants!
After Gregory died and I said goodbye to the beautiful temple that was his body and home for 67 years, I developed this technological sound bite which helps me deal with his passing. Over the last several days I have been fine tuning it.
I have been referring to Gregory Version 1.0 to reflect the Gregory I have known and loved for the last 40+ years. All the changes through his life would be Version 1.1, 1.2, 3.1-2-3, 7.8, 9.9 through Version 9.999 etc.
Gregory Version 2.0 was Gregory during the 10 years he lived with Dementia/Alzheimer's at home with me at the condo. There were many upgrades (or downgrades) for this version as well.
Gregory Version 3.0 was Gregory during the close to 2 years he lived at the Lieberman Center for Health and Rehabilitation on the Special Memory Care Unit. There were fewer upgrades with this version.
Gregory Version 4.0 was as Gregory lie comfortably and peacefully in his room in his bed preparing to leave this world. There were even fewer upgrades with this version if only because by now he was close to perfection.
Gregory Version 5 as his body lay in his bed at Lieberman, at rest but definitely an empty vessel. I was worried that I would not be able to face him this way, but it was still my Greggy and I was able to hold his still warm hand, kiss his lips, and sit with him a while.
Gregory Version 6 as “Gregory in a Box” or his cremated remains. I was frightened of this experience as well but it turned out to be loving, comforting, and easy. His "carbon footprint" rests in his favorite Grandma Carrie's Sewing Box. The final Version will entail returning his remains to his favorite place that held his favorite activity: Swimming in Lake Michigan. I'll know when it is time to take Gregory to the beach.
Gregory Version 7 as my Guardian Angel. I am sure he will be "large" enough to be your Guardian Angel as well so feel free to ask him to be there for you!
Friday, September 11, 2015
Discrimination Two Ways
Through my friend Kate's blog http://kateswaffer.com, I discovered the Dementia Alliance International website. Good idea and I believe that it is so important for people with Dementia to have a place to go for support and advocacy.
From Kate's readings, I have come to understand that too soon and sometimes inappropriately, people with Dementia loose their rights as others make decisions for and about them. This includes not only families but also government, hospitals, organizations, conferences, workshops, and other educational experiences which pro-port to support them.
I have had to make Gregory's decisions for a number of years now and it is a very difficult thing to do. He and I have discussed many of the issues while he was still able and I use those as a baseline for decisions I now have to make on his behalf.
At a certain point, the ability to make decisions for oneself must be turned over to a person who will make them for you, hopefully with love, respect, understanding, compassion, etc. If a person is not there for you, health management advocates are available. While the later might not know the person the advocate for, the are bound by fiduciary responsibility.
Never-the-less, this turning point of decision making, balances on a fine line between the "Ws:" when, why, and how, where, and under what circumstances. Questions raise to the top in my mind: When is the right time? Can we do this jointly? What if you protest? Am I sure it is for the best? Does it really matter? etc Can I decide for now but then give it back to you to decide if able? What is the best way to go about this? How will I decide?
I do have one problem with DAI, however. Members can only be people diagnosed with Dementia. I feel like the tables are turned and I am the being discriminated against. I believe that I am one of the "good guys." Don't lock me out! Honestly, I feel resentful.
There is another wave of attention towards women with dementia and women care givers. Even though the prevalence of women needing this support exists at a higher level for women than it does for men, again I feel left out, ignored, and resentful.
So I will advocate for Dementia/ Alzheimer's where ever and when ever I can but still am uncomfortable with this male/ female discrimination. Honestly while I have expressed my feelings on these issues, I do know know for sure if I am on target or have all the intellectual date to support my feelings.
Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.
http://www.dementiaallianceinternational.org
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