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
Showing posts with label Change. Show all posts
Showing posts with label Change. Show all posts
Tuesday, January 5, 2016
Monday, December 14, 2015
Forbidden Love
As I continue to grieve the loss of the person I have most loved in the world and now will continue to love only in my heart, I think about how far we have come to be accepted by so much of the rest of the world as viable, valuable members of society with the right to love whom we choose.
When I came out in my 20's, during the 1970's, homosexuality was not discussed, not visible, no role models, illegal, etc. As an even younger man, dealing with my feelings for the same sex, for sure I felt that I was the only one who had these feelings, that I must be "sick," and that if I loved or lusted after another man, did that mean I was a woman in some way?
During the early Stonewall Era, I signed petitions, protested, and marched. But always carefully because I would not have done well being arrested and would for sure have been fired from my teaching position if I was found out. Astounding that it was felt that just because I was Gay, I would automatically be a threat to young boys while Straight male teachers didn't automatically molest young girls made and makes no sense.
Slowly things changed, being gay was more accepted by family and friends and colleagues. Eventually this issue of Gay Marriage began to be resolved in state after state and finally at the Supreme Court level. Even so that doesn't mean there are not gay haters and gay baiters and gay beaters out there. But it is better.
Now that marriage was possible between Gregory and I, we chose not to because of the financial complications that Medicaid would pose in his care at the Alzheimer's Care Facility. Bluntly: poor people are supported by the state or they die, the wealthy never has had to worry about getting the best care and paying for it. It is the middle class family (and now gay married family) that would go bankrupt and all those life savings, earned with such hard work, would fly out the window for health care.
But ironically, like the Hippies of the 70's who would rather live together without benefit of marriage papers saying, "How does a piece of paper make our love any deeper or any more permanent?" now Gregory and I could CHOOSE not to be married having at least the right to be able to CHOOSE to do so or not!
So to the title of this post. Tonight on the way home from visiting Michael's Museum: A Curious Collection of Tiny Treasures at Chicago Children's Museum on Navy Pier with a dear family friend who has served as a mentor and role model having been through the Alzheimer's journey with her husband; after dropping her off, the song from West Side Story, "Maria" and then "There's A Place For Us" came on the radio.
The lyrics resonated with me and I felt sad being without Gregory sitting next to me. I wondered about the strength of our love and wondered if that love was so strong, so pure, so intense because it was a love that "dare not speak its name" as it used to be called. Was it because it was a "forbidden" love that had to make its own rules and establish its own milestones of success. Was it a love so strong because as a male I knew what male love was about and that made it easier to love another male instead of having to figure out what a female needed when it came to love
Will never know for sure, just musing, but none-the-less, my love for Gregory and his love for me got us through many very difficult situations: Lack of money at times. Getting advanced degrees with lots of studying and less time to be together.
With "running away to Mexico" for 6 months when I was 35 years old. When Gregory divorced his female wife of 7 years. When he was searching for himself and trying to decide what his life's work would be.
When he studied for and passed his architecture licensing exams. When he opened his architecture and design firm and had me there to help.
When I lost a year to chemo therapy for my lymphoma cancer. When I retired early from teaching.
When we worked together to build Michael's Museum in the guest room of our home. When the museum was transferred to Chicago Children's Museum.
When we received his diagnosis of Dementia/ Alzheimer's. Through the twelve years we lived, and lived well with the diagnosis. With his last 18 months at the memory care facility. During the three days he used to die.
And now with my being really alone and grieving and trying to keep on keeping on.
And I realize that I am not the only one grieving his death. His family and many friends and just acquaintances for whom he made a difference grieve as well. His gentle demeanor, kindness, generosity, compassion, deep spirit and love of fellow personkind always shone through, even during his diminished years, months, weeks, and days with Alzheimer's
Will never know for sure about this huge love, but I do know and am grateful for a love that will continue to last for as long as I do and for as long as the people whom Gregory influenced and touched remember and love him as well.
When I came out in my 20's, during the 1970's, homosexuality was not discussed, not visible, no role models, illegal, etc. As an even younger man, dealing with my feelings for the same sex, for sure I felt that I was the only one who had these feelings, that I must be "sick," and that if I loved or lusted after another man, did that mean I was a woman in some way?
During the early Stonewall Era, I signed petitions, protested, and marched. But always carefully because I would not have done well being arrested and would for sure have been fired from my teaching position if I was found out. Astounding that it was felt that just because I was Gay, I would automatically be a threat to young boys while Straight male teachers didn't automatically molest young girls made and makes no sense.
Slowly things changed, being gay was more accepted by family and friends and colleagues. Eventually this issue of Gay Marriage began to be resolved in state after state and finally at the Supreme Court level. Even so that doesn't mean there are not gay haters and gay baiters and gay beaters out there. But it is better.
Now that marriage was possible between Gregory and I, we chose not to because of the financial complications that Medicaid would pose in his care at the Alzheimer's Care Facility. Bluntly: poor people are supported by the state or they die, the wealthy never has had to worry about getting the best care and paying for it. It is the middle class family (and now gay married family) that would go bankrupt and all those life savings, earned with such hard work, would fly out the window for health care.
But ironically, like the Hippies of the 70's who would rather live together without benefit of marriage papers saying, "How does a piece of paper make our love any deeper or any more permanent?" now Gregory and I could CHOOSE not to be married having at least the right to be able to CHOOSE to do so or not!
So to the title of this post. Tonight on the way home from visiting Michael's Museum: A Curious Collection of Tiny Treasures at Chicago Children's Museum on Navy Pier with a dear family friend who has served as a mentor and role model having been through the Alzheimer's journey with her husband; after dropping her off, the song from West Side Story, "Maria" and then "There's A Place For Us" came on the radio.
The lyrics resonated with me and I felt sad being without Gregory sitting next to me. I wondered about the strength of our love and wondered if that love was so strong, so pure, so intense because it was a love that "dare not speak its name" as it used to be called. Was it because it was a "forbidden" love that had to make its own rules and establish its own milestones of success. Was it a love so strong because as a male I knew what male love was about and that made it easier to love another male instead of having to figure out what a female needed when it came to love
Will never know for sure, just musing, but none-the-less, my love for Gregory and his love for me got us through many very difficult situations: Lack of money at times. Getting advanced degrees with lots of studying and less time to be together.
With "running away to Mexico" for 6 months when I was 35 years old. When Gregory divorced his female wife of 7 years. When he was searching for himself and trying to decide what his life's work would be.
When he studied for and passed his architecture licensing exams. When he opened his architecture and design firm and had me there to help.
When I lost a year to chemo therapy for my lymphoma cancer. When I retired early from teaching.
When we worked together to build Michael's Museum in the guest room of our home. When the museum was transferred to Chicago Children's Museum.
When we received his diagnosis of Dementia/ Alzheimer's. Through the twelve years we lived, and lived well with the diagnosis. With his last 18 months at the memory care facility. During the three days he used to die.
And now with my being really alone and grieving and trying to keep on keeping on.
And I realize that I am not the only one grieving his death. His family and many friends and just acquaintances for whom he made a difference grieve as well. His gentle demeanor, kindness, generosity, compassion, deep spirit and love of fellow personkind always shone through, even during his diminished years, months, weeks, and days with Alzheimer's
Will never know for sure about this huge love, but I do know and am grateful for a love that will continue to last for as long as I do and for as long as the people whom Gregory influenced and touched remember and love him as well.
Wednesday, October 7, 2015
Today's Daily Word
... with, as usual, a few adjustments.
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Sunday, September 20, 2015
Thinking About Gregory
Let me move to some changes I have been able to make in my thinking based on my new awareness of who I am.
Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing.
Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!
"Storm and Stress" is the English translation of Strum und Drang, a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.
So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.
Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30.
He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats.
He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.
I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?
So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.
If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.
But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.
It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that.
A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.
Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.
I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!
I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!
So back to
Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing.
Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!
"Storm and Stress" is the English translation of Strum und Drang, a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.
So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.
Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30.
He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats.
He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.
I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?
So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.
If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.
But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.
It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that.
A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.
Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.
I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!
I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!
So back to
Saturday, July 25, 2015
These are my comments to friend Kate Swaffer on her blog which is written from her point of view as a person who has Dementia. Gregory was never able to give me this perspective so I value hearing from and sharing Kate's journey as she so articulately and eloquently writes. http://kateswaffer.com
As always Kate, thanks for your beautiful view, open, honest view of "life on the other side" which could also be called "the right side" or "the best side" or "the it is what it is side" or "doing what's right with the best side you've got." Or I go on!!!
What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.
Gregory and I said from the beginning when we received the diagnosis: "We have a choice. Lie down and die or hunker down and keep going." We hunkered and never regretted the choice.
To quote the article on "The Australian Journal of Dementia Care" on Prescribed Disengagement: "When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia."
In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a "have to." We gave up life "as we knew it" after studying it and getting rid of the parts we just didn't want to waste our time on! We "triaged:" DUMP these activities in our life, KEEP these, THINK about these and decide later.
We closed Gregory's architecture firm realizing we could survive well enough without working and that the time spent at the firm was "for others." We wanted our time to be spent "for ourselves."
We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.
At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!
Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.
By both "giving up life as we knew it" and by "creating the new life we wanted to live," we lived "Happily Ever After" and are still doing so even with the progression of Gregory's Dementia/Alzheiemr's and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.
• • •
As always Kate, thanks for your beautiful view, open, honest view of "life on the other side" which could also be called "the right side" or "the best side" or "the it is what it is side" or "doing what's right with the best side you've got." Or I go on!!!
What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.
Gregory and I said from the beginning when we received the diagnosis: "We have a choice. Lie down and die or hunker down and keep going." We hunkered and never regretted the choice.
To quote the article on "The Australian Journal of Dementia Care" on Prescribed Disengagement: "When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia."
In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a "have to." We gave up life "as we knew it" after studying it and getting rid of the parts we just didn't want to waste our time on! We "triaged:" DUMP these activities in our life, KEEP these, THINK about these and decide later.
We closed Gregory's architecture firm realizing we could survive well enough without working and that the time spent at the firm was "for others." We wanted our time to be spent "for ourselves."
We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.
At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!
Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.
By both "giving up life as we knew it" and by "creating the new life we wanted to live," we lived "Happily Ever After" and are still doing so even with the progression of Gregory's Dementia/Alzheiemr's and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.
Thursday, May 28, 2015
Decisions, Decisions, Decisions
Things have been going smoothly for a while so I should not complain or get upset when we hit yet another bump in the road. Gregory has been very alert, engaged, talkative (although mumblish,) happy, whistling, singing, laughing, eating well, generally enjoying himself.
But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.
So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?
Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.
There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)
But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.
I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.
So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.
Have I rambled enough? Maybe this will help me get some sleep tonight!
But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.
So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?
Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.
There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)
But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.
I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.
So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.
Have I rambled enough? Maybe this will help me get some sleep tonight!
Monday, May 25, 2015
Life, Death, and a Slow Disappearance
A dear friend Stephanie Kallos shared this on her Facebook page. She is author of three wonderful fiction novels: Sing Them Home and Broken For You and the soon to be released Language Arts. I highly recommend them if you are looking for some warming, engaging, intriguing reading.
This page was written by Henry Scott Holland (27 January 1847 – 17 March 1918,) Regius Professor of Divinity at the University of Oxford, It really spoke to me in ways you could substitute the word Death for Alzheimer's and the ideas would still work so well. They did for me.
Wednesday, May 20, 2015
Dark Night of the Soul
For me, this "Dark Night of the Soul" has to do with my finding my way, my identify, my life without Gregory being by my side. Gregory and I have never in our fourty+ year relationship merged identities. We have always grown together as well as on parallel tracks. So in many way we both have been independent as well as dependent. But this has changed, for at least 11+ years now and for sure during the last 17 months while he has been at The Lieberman Center.
He is still with me but in a greatly reduced way, in a way that I must create anew in order to be able to see and enjoy. While we are still "a couple," we do not do most things together, do not share intimate moments, do not plan or make decisions together, do not vacation together, do not laugh together while watching a TV show, do not share a meal or a bowl of popcorn, do not float on the notes of a musical piece by Chopin, do not anticipate our future.
He finds comfort in my just being there and I do in his but it is a different kind of comfort. I have no one who I can really "find a shoulder to cry on" or to share my grief, my joys, my continued hopes, my aspirations and ambitions.
So slowly I am discovering who I am and who I will be during this next phase of my life. I will survive this and the light will slowly increase in brightness. I am sure I will go through other "Dark Nights of the Soul" as Gregory continues to disappear and eventually when he dies.
Life if joyous, bright, meaningful, exciting, stimulating. Painful!
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Thursday, March 12, 2015
Tuesday, March 10, 2015
Change
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Tuesday, March 3, 2015
Getting This Off My Chest
I just need to get this off my chest and then I'll get on with it. I feel sad when people who used to be a big part of our life no longer come to visit Gregory and me now that he is at the memory care facility.
He certainly is a lot different than he was in his prime or even a year ago. I understand that many people cannot bare to see him in his present condition. I know that sometimes these kind of visits can be painful. I know that Gregory's situation possibly reminds them of their parents, or their grandparents who went through a similar journey.
Because I see him every day, I am used to his "here and now," and I know that it is easier for me than others. I try to keep people up to date on the changes going on, the good, the bad, and at times the ugly. That is if people care to read the blog posts. So there should be no surprises when visiting Gregory. Visiting together with me present makes it easier, I can carry the conversation, I can suggest interactions, I can give a "bad weather alert" when necessary.
But I also know that Gregory is still Gregory, although deeper down inside at times. His radiant spirit, sense of humor, wonder and amazement still shine. When a friend or family member comes to visit it may take Gregory a moment or two to focus on the arriving guest, but when he zeros in, he gets such a look on his face of love and joy, often tears arrive with an "Oh my," or "Oh wonderful." or "Oh look."
You never know whether a huge smile will take over his face or tears of joy will run down his cheek but you can always count on his being happy to see you! While he may not remember the person's name, or their relationship to him, he does know that the person visiting is someone special, some one who loves him and someone whom he loves in return.
Some of our family and friends live far away but when they are in town they always make a point of making sure we visit Gregory. Many of our family and friends who live close by have never seen Gregory, some have seen him only once or twice in the year he has been at Lieberman.
Some people visit Gregory more often and join me on the visit. I am always happy to arrange my time to suit a friend when they want to visit. Other people drop by on their own and spend ten or fifteen minutes many times a month.
I make no value judgement. I do not try to inflict guilt. I know that everyone has their own lives to live, and as Gregory's mother used to say, "everyone has their own cross to bare." But I do feel badly that "circumstances" can alter "friendships" and "relationships" so greatly! Sad. Sad for Gregory. Sad for me.
He certainly is a lot different than he was in his prime or even a year ago. I understand that many people cannot bare to see him in his present condition. I know that sometimes these kind of visits can be painful. I know that Gregory's situation possibly reminds them of their parents, or their grandparents who went through a similar journey.
Because I see him every day, I am used to his "here and now," and I know that it is easier for me than others. I try to keep people up to date on the changes going on, the good, the bad, and at times the ugly. That is if people care to read the blog posts. So there should be no surprises when visiting Gregory. Visiting together with me present makes it easier, I can carry the conversation, I can suggest interactions, I can give a "bad weather alert" when necessary.
But I also know that Gregory is still Gregory, although deeper down inside at times. His radiant spirit, sense of humor, wonder and amazement still shine. When a friend or family member comes to visit it may take Gregory a moment or two to focus on the arriving guest, but when he zeros in, he gets such a look on his face of love and joy, often tears arrive with an "Oh my," or "Oh wonderful." or "Oh look."
You never know whether a huge smile will take over his face or tears of joy will run down his cheek but you can always count on his being happy to see you! While he may not remember the person's name, or their relationship to him, he does know that the person visiting is someone special, some one who loves him and someone whom he loves in return.
Some of our family and friends live far away but when they are in town they always make a point of making sure we visit Gregory. Many of our family and friends who live close by have never seen Gregory, some have seen him only once or twice in the year he has been at Lieberman.
Some people visit Gregory more often and join me on the visit. I am always happy to arrange my time to suit a friend when they want to visit. Other people drop by on their own and spend ten or fifteen minutes many times a month.
I make no value judgement. I do not try to inflict guilt. I know that everyone has their own lives to live, and as Gregory's mother used to say, "everyone has their own cross to bare." But I do feel badly that "circumstances" can alter "friendships" and "relationships" so greatly! Sad. Sad for Gregory. Sad for me.
Sunday, February 15, 2015
Change
I like this photo of the Dandelion sending off its seeds.
In some ways it is a symbol of the person with Alzheimer's as they slowly loose their abilities, memories, functioning.
But it could also be seen as the world of Alzheimer's which you and I may not fully comprehend as does the person affected by dementia, as the seeds fly away while being surrounded by new, magical experiences thus the beautiful, variously sized, interlocking, transparent, translucent, and opaque circles.
Saturday, January 31, 2015
Letter to a Friend
A friend has just made the difficult decision to find a placement for her mom who is dealing with advanced dementia.
My offer stands and if you don't get to Evanston I could meet you downtown your place of work. Your decision to have mom move to a new living situation is a good although difficult one. Difficult especially since she doesn't seem to like the idea.
One suggestion, if she is able, let her make some of the decisions like what furniture, photos, decorations etc to take and how to arrange her new space. I have found that while Gregory was not "hostile" to the new surroundings, he has come to enjoy his new room and home.
The activity going on around him, even though he cannot always fully participate, the good food, and new friends have helped him remain happy and calm. It is touching to see Gregory and Martha carrying on a conversation at dinner. They they both are enjoying it immensely but anyone listening realize that what they are saying makes no sense to others but G and M are having a great time.
Also, by his being in a safe, loving environment, the time I spend with him is free from all frustration, anger, fear, and exhaustion. I actually enjoy visiting him and the other residents have become part of my extended family. Lets get together and chat if you would like.
My offer stands and if you don't get to Evanston I could meet you downtown your place of work. Your decision to have mom move to a new living situation is a good although difficult one. Difficult especially since she doesn't seem to like the idea.
One suggestion, if she is able, let her make some of the decisions like what furniture, photos, decorations etc to take and how to arrange her new space. I have found that while Gregory was not "hostile" to the new surroundings, he has come to enjoy his new room and home.
The activity going on around him, even though he cannot always fully participate, the good food, and new friends have helped him remain happy and calm. It is touching to see Gregory and Martha carrying on a conversation at dinner. They they both are enjoying it immensely but anyone listening realize that what they are saying makes no sense to others but G and M are having a great time.
Also, by his being in a safe, loving environment, the time I spend with him is free from all frustration, anger, fear, and exhaustion. I actually enjoy visiting him and the other residents have become part of my extended family. Lets get together and chat if you would like.
Wednesday, January 7, 2015
On Writing, On Life
Interesting that it more difficult to write about interesting, fun, timely things here than it is to write about emotional, difficult, worrisome things on my Alzheimer's BLOG. Guilt plays a role in making me come here when the last post date gets too far for comfort.
"Write everyday if you want to consider yourself a writer." Sit down and write about whatever comes into your head. Use writing motivations to help you get started. Write non-stop for ten minutes about whatever you are thinking about. But that doesn't always work.
For me, writing is a way of processing my life. Understanding it. Sitting with the difficult emotions that arise and seeing what they are telling me. Laughing over the amusing funny things that happen. Wondering about what I see and perceive around me. Thinking about and planing creative ventures and projects.
I was worried about getting through the holiday season this year since it was going to be the first Christmas and New Year's that Gregory and I did not celebrate together in forty years. But then I got to thinking about what a good (relatively) place we are in today compared to the hell our life was last year BL (Before-Lieberman.)
Also, I was able to celebrate with Gregory, just in a different way. I had my meals with him in the Lieberman dining room, we opened gifts, we had a Christmas tree in his room, we watched our usual holiday videos.
So now we are in a new year, a time of resolutions, a time of plans, a time to move forward. But can I do that when in many ways I feel like I am still "on hold" with Gregory as he continues to change and decline.
I visit almost every day for an hour or two and that cheers me up. I am in the process of signing up for Hospice for him which feels empowering to be able to control that part of the future which I am able.
But when I am home I am lonely, miss him so much, and feel lethargic finding it is easier to not face my creativity, my projects, my day to day life maintenance. Gregory is still a very large part of my life and my focus. I am happy that he is still with me and that he is content, happy, safe, well taken care of.
So you can imagine that most of my writing is directed towards my Alzheimer's BLOG.
http://mhorvichcares.blogspot.com .
But what about me? Maybe another year will help me feel more my new self and help me get on with life. Maybe another year will help me realize those many projects I have created for myself. Maybe I'll get back into being a Supernumerary for the opera, Ringmaster for Michael's Flea Circus, Curator of a second museum The Small, Writer, Poet, Public Speaker? Maybe I will slowly get used to my life without the old Gregory, the old relationship, the old times together.
Or maybe I'll just continue to post more often on the Alzheimer's BLOG for now and see how life unfolds for me without too much pressure, too much fear, too much regret, too much frustration, too much anger. Maybe LIFE will sneak up and before I notice, I will be the new me?
"Write everyday if you want to consider yourself a writer." Sit down and write about whatever comes into your head. Use writing motivations to help you get started. Write non-stop for ten minutes about whatever you are thinking about. But that doesn't always work.
For me, writing is a way of processing my life. Understanding it. Sitting with the difficult emotions that arise and seeing what they are telling me. Laughing over the amusing funny things that happen. Wondering about what I see and perceive around me. Thinking about and planing creative ventures and projects.
I was worried about getting through the holiday season this year since it was going to be the first Christmas and New Year's that Gregory and I did not celebrate together in forty years. But then I got to thinking about what a good (relatively) place we are in today compared to the hell our life was last year BL (Before-Lieberman.)
Also, I was able to celebrate with Gregory, just in a different way. I had my meals with him in the Lieberman dining room, we opened gifts, we had a Christmas tree in his room, we watched our usual holiday videos.
So now we are in a new year, a time of resolutions, a time of plans, a time to move forward. But can I do that when in many ways I feel like I am still "on hold" with Gregory as he continues to change and decline.
I visit almost every day for an hour or two and that cheers me up. I am in the process of signing up for Hospice for him which feels empowering to be able to control that part of the future which I am able.
But when I am home I am lonely, miss him so much, and feel lethargic finding it is easier to not face my creativity, my projects, my day to day life maintenance. Gregory is still a very large part of my life and my focus. I am happy that he is still with me and that he is content, happy, safe, well taken care of.
So you can imagine that most of my writing is directed towards my Alzheimer's BLOG.
http://mhorvichcares.blogspot.com .
But what about me? Maybe another year will help me feel more my new self and help me get on with life. Maybe another year will help me realize those many projects I have created for myself. Maybe I'll get back into being a Supernumerary for the opera, Ringmaster for Michael's Flea Circus, Curator of a second museum The Small, Writer, Poet, Public Speaker? Maybe I will slowly get used to my life without the old Gregory, the old relationship, the old times together.
Or maybe I'll just continue to post more often on the Alzheimer's BLOG for now and see how life unfolds for me without too much pressure, too much fear, too much regret, too much frustration, too much anger. Maybe LIFE will sneak up and before I notice, I will be the new me?
Wednesday, December 31, 2014
Happy New Year
| Dear Readers and Followers, This from http://www.dailyom.com (opens in a new window.) I usually do not put much thought into horoscope readings but this one seems so very fitting for the New Year that I wanted to share it with you today. It seems to have hit "my nail on the head!" One of the ways I was able to get through this Christmas and New Year's season, the first after 40 years without Gregory being home with me, was to think about what our life, his and mine, was like last year at this time. To say the least, it was horrible. Gregory was having a harder and harder time coping with his world and I was having more and more difficulty coping with Gregory in his world and trying to provide any sense of "normalcy" and routine for him. It was very difficult trying to live in his world with him while still being part of my own world, and the two were becoming more and more difficult to reconcile. On beginning the new year, we are both in very good places both physically and mentally. Gregory seems to enjoy his new home. his new family, his new community at The Lieberman Center and I have settled into living on my own. Being with him every day gives me great pleasure and he continues to be pleased to see me. Manny provides such wonderful attention to Gregory when I am not there and this provides me with great peace of mind. The Lieberman Center provides respectful, thoughtful, caring attention to all of Gregory's needs. Happy New Year. Thanks for being part of my "reading/sharing public." I do not know who most of you are and that does not matter. What matters is that somehow, what I write helps you keep up with Gregory and my journey and possibly helps you with yours. I appreciate you!  Fondly, Michael |
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Thursday, November 27, 2014
Thanksgiving Thanks With Purpose
I am aware today that being Thanksgiving has been OK for me. I am completely in the present and not thinking about Gregory and my past Thanksgivings and not thinking about our future ones. (Having typed this is kind of like thinking but not really:-)
I am aware of feeling joyful and happy. I am looking forward to celebrating the holiday. The reason I think is that I have filled today with purpose. I straightened up the condo and emptied the dish washer. I ran a load of laundry. I communicated some on my computer.
I made "Thank You" sign tents to post around Lieberman. This time around no mass distribution of food or candy like other holidays but rather a verbal thank you: Front Desk - Administrative Offices PT/OT - Volunteer Office - Art Therapy - Life Enrichment - Kitchen - Laundry - 5 Floor Nurses Station - Second Floor Building Lounge - Head Nurse: Alicia - Social Worker: Hannah - Activity Director: Alma - G’s RCA: Tomika, Hazel, Luberta - Dining Room: Dorina - Restorative Nurse: Julie - Dietician: Stephanie - Private Care: Manny and Private Care: Connie.
I gave Manny half of today off and I will be with Gregory for Thanksgiving Dinner at Lieberman. For $7.00 I can join in on the whole roasted turkey, dressing, sweet potatoes, cranberry sauce, pumpkin pie. So Gregory and I will be having Thanksgiving Dinner together. I am also looking forward to spending a longer period of time with him instead of the one to three usual hours a day.
I gave Manny off tomorrow so my friend Pat will help Gregory with lunch and I will be with him for dinner again tomorrow.
I did make some "treats" for the immediate helpers on the fifth floor. I baked two 9x13 pans of pecan brownies, cut into a total of 48 pieces.
So in all, I am celebrating Thanksgiving in a new way, in a "here and now" way, in a joyful, wonderful way. I am happy.
Wednesday, November 26, 2014
BLIND
This advice from Pema Chodron holds for dealing with Alzheimer's Disease. With Alzheimer's things change so fast and we have the tendency to hold on to the way things used to be (BLIND.) We get used to the way things are so we do not see the signs of the needed change in our care giving (BLIND.) When the changes do happen, we are surprised, wrecked, depressed, down (BLIND.) If we are able to be ALIVE and AWAKE, we will see that even then there is so much for which to be joyful, grateful, balanced in all things.
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Friday, November 7, 2014
Impermanence
Things are changing again. For the last week or two I have been weighing in on the heavier side of sad when compared to joy.
When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.
You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.
When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.
Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.
When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.
When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.
While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.
Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.
In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.
It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.
When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.
Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)
Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.
So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.
The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.
I will keep you informed.
When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.
You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.
When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.
Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.
When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.
When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.
While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.
Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.
In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.
It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.
When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.
Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)
Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.
So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.
The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.
I will keep you informed.
Tuesday, July 29, 2014
When Giving Away Clothes of the Departed
I have spent the last two days organizing the master bedroom closet and sorting through Gregory's clothes. Most of them he will no longer use as he wears sweats, long sleeve "T" shirts, and sandal type shoes all of the time. He has no need for more than one winter coat and probably won't use the one he has.
Sweaters are out of the question as he needs to have his top changed several times a day when they clean up what we will generously call his "bathroom accidents" which are now his standard way of processing his waste. Also, Lieberman like most care homes is usually over heated. I have learned to wear less when I visit.
Overcoats, top coats, his tuxedo, many pairs of shoes, gloves, scarves, earmuffs are all fair game for the give-away pile. I know that Gregory is not dead, but this part of what I must do sure feels like it.
I have kept a number of his plaid button up shirts and he will be able to use them in the cold months. But most of the other stuff no longer has a purpose to serve.
While doing this is necessary, and while in no way am I of the type to hold on to his clothes for sentimental value (I didn't smell his shirts once like they do in the movies,) it does remind me of the finality of our situation. And that hurts.
All of his "stuff" will live on through Casa Norte, a support service organization that helps young Latino men trying to shake jail, drugs, gangs, crime, etc.
Ironically I picture one of these good looking young men being very excited about discovering one of Gregory's beautiful, in perfect condition, expensive Armani shirts in the Case Norte Help Yourself Closet. That makes me feel better.
We have brought our outlived clothing to Casa Norte many times before and Gregory and I always enjoyed knowing they would be used with love, as they were given with love.
So while I will not talk about this with Gregory, I know he would love the idea and if he could talk back, he would say in his limited use of words fashion, "Fine!"
Sweaters are out of the question as he needs to have his top changed several times a day when they clean up what we will generously call his "bathroom accidents" which are now his standard way of processing his waste. Also, Lieberman like most care homes is usually over heated. I have learned to wear less when I visit.
Overcoats, top coats, his tuxedo, many pairs of shoes, gloves, scarves, earmuffs are all fair game for the give-away pile. I know that Gregory is not dead, but this part of what I must do sure feels like it.
I have kept a number of his plaid button up shirts and he will be able to use them in the cold months. But most of the other stuff no longer has a purpose to serve.
While doing this is necessary, and while in no way am I of the type to hold on to his clothes for sentimental value (I didn't smell his shirts once like they do in the movies,) it does remind me of the finality of our situation. And that hurts.
All of his "stuff" will live on through Casa Norte, a support service organization that helps young Latino men trying to shake jail, drugs, gangs, crime, etc.
Ironically I picture one of these good looking young men being very excited about discovering one of Gregory's beautiful, in perfect condition, expensive Armani shirts in the Case Norte Help Yourself Closet. That makes me feel better.
We have brought our outlived clothing to Casa Norte many times before and Gregory and I always enjoyed knowing they would be used with love, as they were given with love.
So while I will not talk about this with Gregory, I know he would love the idea and if he could talk back, he would say in his limited use of words fashion, "Fine!"
Wednesday, July 2, 2014
Coffee With A New Friend
Today I had a coffee with a friend who is facing Alzheimer's withF her father. In the beginning, most of us go through this alone until it is time to reach out or until it gets so bad that it feels beyond our comprehension and/or control.
So I was happy to be able to be a good listener and to offer some advice, free for the taking. I think just having someone to talk to is helpful if only to hear yourself admit what you already are thinking, what you already know, what you fear.
A big part of my advice was that in many ways fear has no place in dealing with Alzheimer's. It isn't productive, it doesn't solve any of the problems that will arise, and very often many of the things you could have allowed yourself to fear DO NOT HAPPEN.
How does one overcome fear? I don't know how I did it, but in some ways having confidence in myself, enlisting the moral support of family and friends, looking at my successes, being grateful for the good stuff still left, trying not to feel perfect and by not feeling too guilty when I wasn't ... and by deep, deep breathing.
I found meditation helpful in letting me "escape from myself and my voices" so I could hear the comforting words of the universe sooth me. I knew a lot about meditation (or thought I did) and just berated myself for not just "locking myself in my darkened closet and doing it!"
One day my massage therapist introduced me to a woman who she felt would do me some good. I signed up with this woman for meditation classes, previously not having realized that one needs to be taught how to meditate, that in fact part of the practice of meditation requires one to HAVE A TEACHER to support and guide you. What I learned with Corinne, in many ways, has saved my life - or at least given me a more peaceful one!
Even though each of us on the giving side of Alzheimer's and those on the receiving side of Alzheimer's (read any type of dementia,) go through this insidious disease in a way that is as unique as the individual personalities involved, there are many things which we have in common: dealing with fear, the unknown, disbelief, unwanted and unexpected change, difficult often unilateral decisions, somehow getting through this to the other side - whether it be in this life or the next.
In an e-mail that my friend sent thanking me for my time today, I replied:
You are very welcome! As I said, it will get worse but it will get better. You will run into obstacles you cannot foresee but the solutions will find you. You know in your deepest heart what you want for you dad and you will be able to do it as the time comes.
With your dad's "aggressiveness" you may run into complications but I understand him to not be physically violent. There are drugs to help with this. Most places will want to do an evaluation of your dad before making any commitments.
Something else I did not mention is that there is no such thing as telling a lie when it comes to Alzheimer's. Any reply, true or false, is meant to pacify the person with dementia ... truth does not matter. Believe me I have learned to "lie" to Gregory. But then again, what is a lie? An embelishment? An exageration? A half truth? An omission? Someone else's point of view? NO ONE IS JUDGING.
So I was happy to be able to be a good listener and to offer some advice, free for the taking. I think just having someone to talk to is helpful if only to hear yourself admit what you already are thinking, what you already know, what you fear.
A big part of my advice was that in many ways fear has no place in dealing with Alzheimer's. It isn't productive, it doesn't solve any of the problems that will arise, and very often many of the things you could have allowed yourself to fear DO NOT HAPPEN.
How does one overcome fear? I don't know how I did it, but in some ways having confidence in myself, enlisting the moral support of family and friends, looking at my successes, being grateful for the good stuff still left, trying not to feel perfect and by not feeling too guilty when I wasn't ... and by deep, deep breathing.
I found meditation helpful in letting me "escape from myself and my voices" so I could hear the comforting words of the universe sooth me. I knew a lot about meditation (or thought I did) and just berated myself for not just "locking myself in my darkened closet and doing it!"
One day my massage therapist introduced me to a woman who she felt would do me some good. I signed up with this woman for meditation classes, previously not having realized that one needs to be taught how to meditate, that in fact part of the practice of meditation requires one to HAVE A TEACHER to support and guide you. What I learned with Corinne, in many ways, has saved my life - or at least given me a more peaceful one!
Even though each of us on the giving side of Alzheimer's and those on the receiving side of Alzheimer's (read any type of dementia,) go through this insidious disease in a way that is as unique as the individual personalities involved, there are many things which we have in common: dealing with fear, the unknown, disbelief, unwanted and unexpected change, difficult often unilateral decisions, somehow getting through this to the other side - whether it be in this life or the next.
In an e-mail that my friend sent thanking me for my time today, I replied:
You are very welcome! As I said, it will get worse but it will get better. You will run into obstacles you cannot foresee but the solutions will find you. You know in your deepest heart what you want for you dad and you will be able to do it as the time comes.
With your dad's "aggressiveness" you may run into complications but I understand him to not be physically violent. There are drugs to help with this. Most places will want to do an evaluation of your dad before making any commitments.
Something else I did not mention is that there is no such thing as telling a lie when it comes to Alzheimer's. Any reply, true or false, is meant to pacify the person with dementia ... truth does not matter. Believe me I have learned to "lie" to Gregory. But then again, what is a lie? An embelishment? An exageration? A half truth? An omission? Someone else's point of view? NO ONE IS JUDGING.
A "visiting friend from college" can really be the psychologist who is observing and prescribing. The "car breaking down and not being able to afford a new one" can easily help solve the problem of a person dealing with no longer being able to drive.
When Gregory gets upset or depressed or angry and is unable to explain why, I go into my "Everything is OK. I have taken care of everything. You have nothing to worry about. You just have to be happy. I have lined everything up that needs to happen. It is all taken care of. No need to worry. I love you. You love me." MANTRA. And guess what, Gregory is able to calm down. I had no idea what was bothering him and he doesn't know that but he trusts that I have taken care of everything, and even not knowing what it was, I probably have! That's what comes with loving someone for over 39 years!
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