FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Showing posts with label Sorrow. Show all posts
Showing posts with label Sorrow. Show all posts
Tuesday, December 22, 2015
Sunday, December 20, 2015
Refocusing One's Grief
I have been thinking about this lately. And today's DailyOm, which it often does, caused me to sit down and put my thoughts into words.
The closer we get to Christmas, the more I have been grieving Gregory's death, the sadder maybe even depressed I have been feeling.
I know that this is only natural and one will be told by everyone else that we should expect this on firsts: First Thanksgiving. First Christmas. First Anniversary without Gregory in January which would have been (or should I say will be) 41 years together?
But I also know that Gregory does not need me to grieve, the universe is not benefitted by my grief, God (if she exists) does not need me to grieve. I am the one who needs to grieve but if it makes me sad, unhappy, and possibly depressed; maybe I do not need to grieve as much or in the way that I am doing so.
My Grief does not make Gregory's life any more or less meaningful. My Grief will definitely not bring him back to me for even a moment or two in realtime. My Grief will not being me joy, or cheer, or good feelings, or help support my health. So I continue to question Grief.
It is as if Grief gives me permission to wallow in my sorrows, my loneliness, my "what if's," my "if only's." It is as if I allow Grief to slow me down, feel tired, feel lethargic, to not accomplish those things I want to accomplish. I allow Grief to cause me to be poor company to friends and family.
So I continue to question grief. If I can turn my Grief into a more productive activity, I will be served. Gregory will be served. The universe will be served and God (if she exists) will are served. Family and friends and my two cats, Emma and Gigi, will be served. So I continue to question grief.
I believe that if I want to believe in something, then it is true. At least for me. So I continue my conversations, my dialogues with Gregory or with Gregory's Spirit although they at times might seem like monologues. But sometimes I hear Gregory's answers. At least I hear them in my head. At least they may be coming from him, from beyond, or from my 41 years of knowing what he would say, but none-the-less they come.
And I feel at times that Gregory, or Gregory's Spirit, is sad that I am sad, unhappy that I am unhappy, misses me because I miss him. I hear him telling me to try not to be so sad because it makes him feel sad as well. And that doesn't serve Gregory in whatever his next set of adventures and spiritual growth may need.
So I have been trying to grieve less. Grieve yes but less. When I feel sad I try to change the thoughts to ones of joy. When I feel lonely, I try to remember the good times and to be grateful for them. When I feel depressed, I sit with the feelings then tell myself to move on.
By allowing myself to stay sad, stay lonely, stay depressed, I am allowing myself to wallow in my grief instead of celebrating not only Gregory's life but also my own. I am seventy years old, I have much to celebrate and will have much to celebrate yet. By grieving less I will not be wasting those precious moments, minutes, hours, days, weeks, and years I have left.
So enjoy, not grieve. Laugh, not cry. Celebrate, not mourn. Sing and dance. I tell myself. And most of the time it works. And when it doesn't, I allow myself to sit and wallow but not for more than fifteen minutes at a time. Then I continue on continuing on.
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Tuesday, December 15, 2015
Holiday Grief and Balance
As I have been told, there will be many firsts in life. Usually firsts are to be celebrated. I am looking for a way to celebrate my first Christmas in 40 years without Gregory. Not pushing myself to think about how I'll spend the actual holiday. Maybe I'll spend it at Lieberman, Gregory's last home, spreading joy to the residents?
I have decorated the condo for the holiday but minimally when compared to previous years. I have not baked any cookies but my taste buds are trying to convince me to make at least a few. Haven't purchased many gifts for people but will make my Ina Garten's Rosemary Cashews as gifts for family and friends.
Rang in the season at Roger's annual Christmas party on December 5th. Enjoyed the Christkindlmarket in downtown Chicago which my niece Colleen Maire.We bought German glass ornaments, ate potato pancakes with sour cream and apple sauce, and munched a Bratwurst. Bought myself a new computer and have been enjoying using it in and organizing my new office, the table in the living room which used to be Gregory's workspace. Looking forward to finishing the reading corner in the bedroom, replacing the computer desk that used to be in there, with a comfy chair, lamp, and additional bookcase
Will probably spend dinner with various friends over the next weeks and look forward to that. Bought but haven't wrapped new mice for Emma and Gigi. Feeling the joy of Christmas on one shoulder and Gregory's absence on the other. But somehow that creates a balance.
I will continue to grieve for a while yet ... but slowly, very slowly I am being able to think about past memories, both happy and sad, with both joy and sorrow, while carving the path of my future.
I have decorated the condo for the holiday but minimally when compared to previous years. I have not baked any cookies but my taste buds are trying to convince me to make at least a few. Haven't purchased many gifts for people but will make my Ina Garten's Rosemary Cashews as gifts for family and friends.
Rang in the season at Roger's annual Christmas party on December 5th. Enjoyed the Christkindlmarket in downtown Chicago which my niece Colleen Maire.We bought German glass ornaments, ate potato pancakes with sour cream and apple sauce, and munched a Bratwurst. Bought myself a new computer and have been enjoying using it in and organizing my new office, the table in the living room which used to be Gregory's workspace. Looking forward to finishing the reading corner in the bedroom, replacing the computer desk that used to be in there, with a comfy chair, lamp, and additional bookcase
Will probably spend dinner with various friends over the next weeks and look forward to that. Bought but haven't wrapped new mice for Emma and Gigi. Feeling the joy of Christmas on one shoulder and Gregory's absence on the other. But somehow that creates a balance.
I will continue to grieve for a while yet ... but slowly, very slowly I am being able to think about past memories, both happy and sad, with both joy and sorrow, while carving the path of my future.
Putting Grief Aside
This was my response to Faith who several times on her Facebook page has asked those of us who love someone with Dementia/ Alzheimer's to put our grief aside.
Faith, There is a grief that one must carry when love is present. I agree that we should not miss the precious moments that we can still have together but know that grief can be a sign of great love and sorrow. We are losing what is never really ours to own and is never permanent anyway but that does not make the sorrow any less. At times grief must be set aside so as to continue celebrating life. Often when I needed to really cry, since I would be wet anyway I took a shower in an effort to hide my tears from Gregory! I agree that some relish their grief and wave it like a banner at the cost to the person for whom they are grieving but when done well, grief is a necessary component of caring, love, and loss for both the person living with Dementia/ Alzheimer's and for the people loving and living with them.
Faith, There is a grief that one must carry when love is present. I agree that we should not miss the precious moments that we can still have together but know that grief can be a sign of great love and sorrow. We are losing what is never really ours to own and is never permanent anyway but that does not make the sorrow any less. At times grief must be set aside so as to continue celebrating life. Often when I needed to really cry, since I would be wet anyway I took a shower in an effort to hide my tears from Gregory! I agree that some relish their grief and wave it like a banner at the cost to the person for whom they are grieving but when done well, grief is a necessary component of caring, love, and loss for both the person living with Dementia/ Alzheimer's and for the people loving and living with them.
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:
Labels:
Alzheimer's,
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Buddhism,
Death,
Dementia,
Forgiveness,
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Parents,
Perceptions,
Sorrow
Friday, December 11, 2015
A Great Adventure
The book Healing After Loss: Daily Meditations for Working Through Grief, by Martha Whitmore Hickman, was recommended to me by Corinne Peterson, my yoga teacher and guru.
When I come across a particular salient passage, I will share it here with you. I highly suggest the book if you are currently, or will be dealing with death and loss.
Even as I stood there, the tears streaming down my face, I felt a kind of joy for him, a strange gayety almost, that he would so soon be released, and I had a sense that he stood now on the threshold of some great adventure ... so it was in a strange way not only a time of terrible sorrow, but a moment of light, as I stood there telling him goodbye.
When I come across a particular salient passage, I will share it here with you. I highly suggest the book if you are currently, or will be dealing with death and loss.
Even as I stood there, the tears streaming down my face, I felt a kind of joy for him, a strange gayety almost, that he would so soon be released, and I had a sense that he stood now on the threshold of some great adventure ... so it was in a strange way not only a time of terrible sorrow, but a moment of light, as I stood there telling him goodbye.
Monday, December 7, 2015
Yoga for Loss and Grieving: Session 4 - Never Agains!
Missed last week's session 3. This week we worked on "Practice Intention" which was setting an intention for what might come out of today's session and "Life Long Desire," a more over time, life-long intention that we would like to consider.
For my "Intention," I set "Self-Forgiveness." Self-forgiveness for those times I didn't really understand what Gregory was going through as the effects of his Alzheimer's/ Dementia progressed. Self-Forgiveness for those times I could have done a better job if I was more aware of exactly it was that he was experiencing. Even though I did the best I could at the time, and even though I did a pretty terrific job, there is some grieving at not having been a better support to him, of getting angry with him, and at times of being downright mean to him!
While I have been beating myself up a little less as time has passed since Gregory died, I still wish I could have been better and obviously there is no way to go back in time to redo my behavior. I know that Gregory always forgave me and I was always able to quickly apologize; still the feelings and emotions linger of not ever again being able to make it right! That is one of the irrational side effects of death: the NEVER AGAIN syndrome!
For my "Life Long Desire," I set the idea of wondering what the rest of my life would be like and how I could spend it doing good for others.
Following the setting of the "Intention" and the "Desire" we let them drift into the background, as we continued our Yoga Nidra practice, knowing that we had acknowledged them but did not need to do anything about them or work on them. Just having noted them was enough for now.
Next, we visited our "Internal Resource" place, that place we can go to anytime we need to seek peace and comfort and safety. This time Gregory was not in bed but was waiting to greet me by the door. We hugged with great love and joy in a way that we had not hugged for a long long time due to his being in a wheelchair for over a year during his time at Lieberman. I wanted it to be real so it was, for a few moments real.
Again, like last session, while being in my Internal Resource place was beautiful, if was emotionally overwhelming. The realization was that hugging Gregory could only exist here, in my Internal Resource now and only in my imagination made me very sad (although I fancied that I was really hugging him and if I deemed it so, it was so!) Once again death waved the NEVER AGAIN flag. Hugging Gregory could exist in my memory but never again in real life. Somehow I will have to come to grips with this being enough for me.
I realized that while often I am happy and enjoying my new life without Gregory, the shadow of sadness still strongly fades every bright color that shines through the clouds. I cried silently so as not to disturb the other students or instructor in the class.
Slowly I drifted back to the rest of the practice with its breathing, its being aware of my body in relation to the floor and the air and the room. Slowly I returned to the calmness and peacefulness of the practice and for the time being left my sorrow behind. When it was time to slowly come back to reality, back to my body, back to the room with the other students, the tears flowed again but I gathered myself together, put my pillows and blankets and chair back in the store room, wished Corrine a "Thank You" and came home to write this post.
While I believe that I gained much from the session, I am aware that I am feeling somewhat numb and spent. I hope I will sleep well tonight.
For my "Intention," I set "Self-Forgiveness." Self-forgiveness for those times I didn't really understand what Gregory was going through as the effects of his Alzheimer's/ Dementia progressed. Self-Forgiveness for those times I could have done a better job if I was more aware of exactly it was that he was experiencing. Even though I did the best I could at the time, and even though I did a pretty terrific job, there is some grieving at not having been a better support to him, of getting angry with him, and at times of being downright mean to him!
While I have been beating myself up a little less as time has passed since Gregory died, I still wish I could have been better and obviously there is no way to go back in time to redo my behavior. I know that Gregory always forgave me and I was always able to quickly apologize; still the feelings and emotions linger of not ever again being able to make it right! That is one of the irrational side effects of death: the NEVER AGAIN syndrome!
For my "Life Long Desire," I set the idea of wondering what the rest of my life would be like and how I could spend it doing good for others.
Following the setting of the "Intention" and the "Desire" we let them drift into the background, as we continued our Yoga Nidra practice, knowing that we had acknowledged them but did not need to do anything about them or work on them. Just having noted them was enough for now.
Next, we visited our "Internal Resource" place, that place we can go to anytime we need to seek peace and comfort and safety. This time Gregory was not in bed but was waiting to greet me by the door. We hugged with great love and joy in a way that we had not hugged for a long long time due to his being in a wheelchair for over a year during his time at Lieberman. I wanted it to be real so it was, for a few moments real.
Again, like last session, while being in my Internal Resource place was beautiful, if was emotionally overwhelming. The realization was that hugging Gregory could only exist here, in my Internal Resource now and only in my imagination made me very sad (although I fancied that I was really hugging him and if I deemed it so, it was so!) Once again death waved the NEVER AGAIN flag. Hugging Gregory could exist in my memory but never again in real life. Somehow I will have to come to grips with this being enough for me.
I realized that while often I am happy and enjoying my new life without Gregory, the shadow of sadness still strongly fades every bright color that shines through the clouds. I cried silently so as not to disturb the other students or instructor in the class.
Slowly I drifted back to the rest of the practice with its breathing, its being aware of my body in relation to the floor and the air and the room. Slowly I returned to the calmness and peacefulness of the practice and for the time being left my sorrow behind. When it was time to slowly come back to reality, back to my body, back to the room with the other students, the tears flowed again but I gathered myself together, put my pillows and blankets and chair back in the store room, wished Corrine a "Thank You" and came home to write this post.
While I believe that I gained much from the session, I am aware that I am feeling somewhat numb and spent. I hope I will sleep well tonight.
Labels:
Body,
Breath,
Death,
Forgiveness,
Happiness,
Intention,
Internal Resource,
Life,
Life Desire,
Mind,
Never Again,
Numb,
Sorrow,
Yoga Nidra
Saturday, December 5, 2015
Christmas 2015
This year’s abbreviated Christmas decorations. Needed to do something but with Gregory not here to help me celebrate, didn’t want to go all out. Feeling good (even while sad) about the season of joy. I have much for which to be joyful!
Thursday, October 1, 2015
Gregory
Gregory is not feeling well today. Bad cold, fever, cough. He has slept most of the day and has been unable to eat or drink because he is so sleepy and therefore unable to swallow. He is unresponsive but I spent a long time talking to him anyway and kissing his face and holding his hand. I am grateful that he is resting comfortably.
Manny has been sitting with him, holding Gregory's hand, cooing and petting him. Swabs help keep Gregory's mouth moist. If Gregory wakes up we will try juices. I visited for a couple hours, left for a couple more, then returned.
Emotions are close to the surface as Gregory enters the possible beginning of the end. If this congestion/ cough and fever turns into pneumonia, it could take him. I have decided (as Gregory and I discussed life/ death issues when he was able) by extension that we will not administer antibiotics.
If he is able to survive this bout, it means he is not ready to leave us. If he does leave us, I see it as his decision that he is ready. We have been through this before, last winter, but this time it surprised me anyway.
He and I discussed this last time he was ill and today we had our "Birds and the Bee's" talk again. Although this time, I do not know if he heard me or not.
CLICK to go to that post. Opens in a new window
Meanwhile everyone involved will do what we can to help Gregory be comfortable and he continues to be loved (by all who come in contact with him,) safe, and well taken care of.
The Lieberman medical team are on top of his needs, the nurse manager and floor nurses checked in with me, his hospice nurse visited twice today, I got a call from the hospice social worker, and his Lieberman social worker dropped in several times today. Even Marti who used to be his nurse dropped by as did our activities director and some visitors from the life enrichment team. The floor nurses and his CNAs will check on him every hour or so.
Time will tell. I will keep you up to date. Boy I love that man!
Manny has been sitting with him, holding Gregory's hand, cooing and petting him. Swabs help keep Gregory's mouth moist. If Gregory wakes up we will try juices. I visited for a couple hours, left for a couple more, then returned.
Emotions are close to the surface as Gregory enters the possible beginning of the end. If this congestion/ cough and fever turns into pneumonia, it could take him. I have decided (as Gregory and I discussed life/ death issues when he was able) by extension that we will not administer antibiotics.
If he is able to survive this bout, it means he is not ready to leave us. If he does leave us, I see it as his decision that he is ready. We have been through this before, last winter, but this time it surprised me anyway.
He and I discussed this last time he was ill and today we had our "Birds and the Bee's" talk again. Although this time, I do not know if he heard me or not.
CLICK to go to that post. Opens in a new window
Meanwhile everyone involved will do what we can to help Gregory be comfortable and he continues to be loved (by all who come in contact with him,) safe, and well taken care of.
The Lieberman medical team are on top of his needs, the nurse manager and floor nurses checked in with me, his hospice nurse visited twice today, I got a call from the hospice social worker, and his Lieberman social worker dropped in several times today. Even Marti who used to be his nurse dropped by as did our activities director and some visitors from the life enrichment team. The floor nurses and his CNAs will check on him every hour or so.
Time will tell. I will keep you up to date. Boy I love that man!
Labels:
Antibiotics,
Comfort,
Congestion,
Cough,
Death,
Emotions,
Life,
Pneumonia,
Sorrow
Tuesday, August 25, 2015
Tear Time
It's tear time again. Will they ever stop?
Just found out that a dear friend has been diagnosed with Dementia/ Alzheimer's. She is much older than Gregory when we received his diagnosis, and I am sorry she has to deal with this and wish her the best that can be until she decides to "go home," but it causes me to relive my sorrows of the last twelve years with Gregory and the possibilities that she and her family are just beginning to travel. So the tears.
I am honored that the family trusted me with this information and that they have enlisted my advice which I will give lovingly and freely. But I know it will bring my sorrows to the surface again as I share what I have experienced and what I believe to be true in helping my friend live as productive a life as possible. Remember, "Lie Down and Die or Hunker Down and Live!"
Utmost in my mind is the advice from my blogger friend Kate www.kateswaffer.com that one needs to continue to live as big and as loud as one can; work around the changes and not to let the diagnosis bring you down.
Just found out that a dear friend has been diagnosed with Dementia/ Alzheimer's. She is much older than Gregory when we received his diagnosis, and I am sorry she has to deal with this and wish her the best that can be until she decides to "go home," but it causes me to relive my sorrows of the last twelve years with Gregory and the possibilities that she and her family are just beginning to travel. So the tears.
I am honored that the family trusted me with this information and that they have enlisted my advice which I will give lovingly and freely. But I know it will bring my sorrows to the surface again as I share what I have experienced and what I believe to be true in helping my friend live as productive a life as possible. Remember, "Lie Down and Die or Hunker Down and Live!"
Utmost in my mind is the advice from my blogger friend Kate www.kateswaffer.com that one needs to continue to live as big and as loud as one can; work around the changes and not to let the diagnosis bring you down.
Monday, August 17, 2015
Medically Speaking
Every now and then when least expected
The wound that is Dementia/Alzheimer's
reopens and I bleed again a little more.
It will probably never heal completely
And I do not expect or hope for it to do so
The pain does become a little more bearable.
The reality of it and the implications hit
When I lease expect it and I have no one
With whom to cry; no bang my fists, sob, howl.
The one person who used to help me cope
Is inadvertently the one person who now
Is the reason for the emotions, the sorrow.
He is still able to help but in a different way
In a very different capacity so now I must
In most ways be strong for him, for me, for us.
I am more quickly able to staunch the flow of pain
And get back to experiencing and acknowledging
The good and joy in my life carried on sorrow's shoulders.
The wound that is Dementia/Alzheimer's
reopens and I bleed again a little more.
It will probably never heal completely
And I do not expect or hope for it to do so
The pain does become a little more bearable.
The reality of it and the implications hit
When I lease expect it and I have no one
With whom to cry; no bang my fists, sob, howl.
The one person who used to help me cope
Is inadvertently the one person who now
Is the reason for the emotions, the sorrow.
He is still able to help but in a different way
In a very different capacity so now I must
In most ways be strong for him, for me, for us.
I am more quickly able to staunch the flow of pain
And get back to experiencing and acknowledging
The good and joy in my life carried on sorrow's shoulders.
Sunday, August 16, 2015
Not A Day Goes By
Two versions of "Not a Day Goes By."
A more positive version that can describe how Gregory and my love has continued to grow over the last forty years. I love Gregory more each day than I did the day before.
And now he is slowly continuing to leave me with this version:
A more positive version that can describe how Gregory and my love has continued to grow over the last forty years. I love Gregory more each day than I did the day before.
And now he is slowly continuing to leave me with this version:
Friday, August 14, 2015
Not A Day Goes By
I just got home after spending the entire day with Gregory. Manny was on a religious leave so I helped Gregory with lunch, shaving, brushing his teeth, and napping.
Then we exercised to "Abba" and we just smiled and laughed through the entire session. Got more accomplished using music and calling it dancing: no exercise, no stretching, no pushups, no jumping jacks; just plain old Disco Dancing.
Then we watched some TV, I ran out and got some Sushi as a treat (and as a break in the day for me) which Gregory really enjoyed for the first time in some 20 months.
Next a little more napping, I reclined his wheel chair and napped also on his bed.
Next was dinner and finally parking him in front of "The Wizzard of Oz" and taking my leave until tomorrow morning.
Now home and coming down from an engaged, love filled, hectic day; I didn't need to do this to myself but the song came across my Facebook, by Sondheim as sung by Bernadette Peters. So now, cry a few tears with me.
NOT A DAY GOES BY
Not a day goes by,
Not a single day
But you're somewhere a part of my life
And it looks like you'll stay.
As the days go by,
I keep thinking, "When does it end?
Where 's the day I'll have started forgetting?"
But I just go on
Thinking and sweating
And cursing and crying
And turning and reaching
And waking and dying
And no,
Not a day goes by,
Not a blessed day.
But you're still somewhere part of my life
And you won't go away.
So there's hell to pay.
And until I die
I'll die day after day
After day after day
After day after day
After day
Till the days go by
Till the days go by
Till the days go by
Read more at http://www.songlyrics.com/stephen-sondheim/not-a-day-goes-by-lyrics/#RCfZZgwsTyly6Ohd.99
Then we exercised to "Abba" and we just smiled and laughed through the entire session. Got more accomplished using music and calling it dancing: no exercise, no stretching, no pushups, no jumping jacks; just plain old Disco Dancing.
Then we watched some TV, I ran out and got some Sushi as a treat (and as a break in the day for me) which Gregory really enjoyed for the first time in some 20 months.
Next a little more napping, I reclined his wheel chair and napped also on his bed.
Next was dinner and finally parking him in front of "The Wizzard of Oz" and taking my leave until tomorrow morning.
Now home and coming down from an engaged, love filled, hectic day; I didn't need to do this to myself but the song came across my Facebook, by Sondheim as sung by Bernadette Peters. So now, cry a few tears with me.
NOT A DAY GOES BY
Not a day goes by,
Not a single day
But you're somewhere a part of my life
And it looks like you'll stay.
As the days go by,
I keep thinking, "When does it end?
Where 's the day I'll have started forgetting?"
But I just go on
Thinking and sweating
And cursing and crying
And turning and reaching
And waking and dying
And no,
Not a day goes by,
Not a blessed day.
But you're still somewhere part of my life
And you won't go away.
So there's hell to pay.
And until I die
I'll die day after day
After day after day
After day after day
After day
Till the days go by
Till the days go by
Till the days go by
Read more at http://www.songlyrics.com/stephen-sondheim/not-a-day-goes-by-lyrics/#RCfZZgwsTyly6Ohd.99
Tuesday, July 28, 2015
Memories
By Michael A. Horvich
Memories of earlier times arrive
No longer to be there for me, or us
So I sit at computer and compose
And console self as best I can.
I sit on the summer warmed balcony
The grass and trees growing lush
On the roof deck garden below us
As this poem begins to blur.
My coffee steams in the hot sun
My toast: rye with raspberry jam
The birds chirp and tweet and twittle
As the cold tears wet my cheeks.
"May I come out and join you?" he asks
With an up turned questioning voice
"But off course you may and welcome!"
As I reply with sorrow's memory.
We talk about flowers below us growing
About the sun and clouds above us moving
We sit together quietly holding hands
As my memory is unable to quiet itself.
I stick my expecting bare feet into
His empty, sun warmed worn sandals
He suns his legs stretched over mine
And I wonder with whom can I cry?
Deep gasp after gasp after breath
Tears continuing to flood and fill
A sadness, an emptiness, a grief
So deep as to drown without hope.
By Michael A. Horvich
Memories of earlier times arrive
No longer to be there for me, or us
So I sit at computer and compose
And console self as best I can.
I sit on the summer warmed balcony
The grass and trees growing lush
On the roof deck garden below us
As this poem begins to blur.
My coffee steams in the hot sun
My toast: rye with raspberry jam
The birds chirp and tweet and twittle
As the cold tears wet my cheeks.
"May I come out and join you?" he asks
With an up turned questioning voice
"But off course you may and welcome!"
As I reply with sorrow's memory.
We talk about flowers below us growing
About the sun and clouds above us moving
We sit together quietly holding hands
As my memory is unable to quiet itself.
I stick my expecting bare feet into
His empty, sun warmed worn sandals
He suns his legs stretched over mine
And I wonder with whom can I cry?
Deep gasp after gasp after breath
Tears continuing to flood and fill
A sadness, an emptiness, a grief
So deep as to drown without hope.
Sunday, July 12, 2015
Nirvana
I need to sit down and review my posts. For the most part I believe my posts are up, optimistic, positive. When I show a video of Gregory playing the piano, it is done with great joy on my part, calling it a Monumental Momentary Miracle!
Many of the antidotes and photographs of Gregory show him enjoying himself at The Lieberman Center: whether outside, at a meal, in his room, or watching a performance in the Community Room.
But I need to chastise you a bit if you are sad for Gregory or get depressed yourself when you read about how he is today!
I think that for the most part you should feel sad for ME when the posts seem down, overwhelmed, or despondent ... not Gregory. It is me that is trying to cope with my new life or trying to problem solve for him at Lieberman Center. Gregory is content so don't feel sorry for him. I am able to regroup so don't feel too bad for me either!
The Gregory we all knew and loved, the whole person Gregory, the pre-Dementia/Alzheimer's Gregory is no longer with us. No amount of crying or sadness or depression will bring him back. If anything the crying, sadness, and depression will not only affect us but how we deal with him and he will "read" us which will affect him negatively.
So I try to be up and optimistic and positive when I am with him. The Spirit that is Gregory exists beautifully and fully. His sense of humor peeks out, his being aware of the situation peeks out now and then. Out of the clear blue he will lean in and tell me or tell you something very loving and poignant. His being distraught peeks out only rarely and his sadness passes quickly and easily.
He exists in a diminished place, a narrow community, with a greatly reduced cognitive ability level and skill set. But he is happy. He is content. He is safe. It may seem ugly to us but he does not see it that way. We must see his life through his eyes, not through our eyes or through our expectations.
Now and then, he gets a little "out of balance" but the medical staff and I work at helping him be at peace with himself through music, food, reassuring, and the very very careful use of calming drugs.
Many Dementia/Alzheimer's facilities have gotten a bad rap for drug use to calm residents in an effort to make it easier to take care of them, to sedate them into oblivion. And some facilities deserve to be chastised for such activity.
But many facilities also very carefully use medication to help the resident be calm within themselves, especially when they no longer have the ability to discuss their fears and emotions, when language fails them.
For those of you who think drug use is "wrong," I would say how is Gregory, in some ways, any different than the hundreds of thousands of people who need a mild tranquilizer or who pop an Ativan now and then to help them cope with life? When he is balanced; he is easy, happy, content, engaged, alert, and enjoying life to the fullest. His fullest ... not our concept of what "fullest" should be!
There are no expectations for Gregory from the outside and for the most part he has none for himself. He has no "shoulds" or "oughts" and that is beautiful. He has no obligations, doesn't have to be anywhere special or accomplish anything unique. Being late for an appointment or deadline does not exist for him. He gets to eat well, watch a lot of TV, see his favorite DVD movies, have his dark chocolate treats, sing, sit outside in the sun, and visit with people who love him and who somewhere inside he knows he loves back.
In many ways Gregory is well on his way to NIRVANA |nərˈvänə, nir-| noun (in Buddhism) a transcendent state in which there is neither suffering, desire, nor sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism. Something we are all looking forward to.
Don't cry for Gregory. Please see his glass as half full - not half empty, celebrate him as he is today do not grieve for his yesterdays and don't feel too bad for me either.
I love that man More Than Ever and enjoy him every day I visit. Slowly I have been able to begin thinking about our past and being grateful for all we have had. I am overjoyed at the wonderful care he is receiving at Lieberman and I am slowly reclaiming my life.
The hole ripped in my chest, at loosing what he was, will never be filled and when he dies it will be ripped open a touch more, but that hole will and never should be filled. It is the sacred place where our love for each other continues to live and will live as long as I breath. I have learned and will continue to learn how to live with that emptiness in my chest. Then I will die and will have achieved my Nirvana!
Many of the antidotes and photographs of Gregory show him enjoying himself at The Lieberman Center: whether outside, at a meal, in his room, or watching a performance in the Community Room.
But I need to chastise you a bit if you are sad for Gregory or get depressed yourself when you read about how he is today!
I think that for the most part you should feel sad for ME when the posts seem down, overwhelmed, or despondent ... not Gregory. It is me that is trying to cope with my new life or trying to problem solve for him at Lieberman Center. Gregory is content so don't feel sorry for him. I am able to regroup so don't feel too bad for me either!
The Gregory we all knew and loved, the whole person Gregory, the pre-Dementia/Alzheimer's Gregory is no longer with us. No amount of crying or sadness or depression will bring him back. If anything the crying, sadness, and depression will not only affect us but how we deal with him and he will "read" us which will affect him negatively.
So I try to be up and optimistic and positive when I am with him. The Spirit that is Gregory exists beautifully and fully. His sense of humor peeks out, his being aware of the situation peeks out now and then. Out of the clear blue he will lean in and tell me or tell you something very loving and poignant. His being distraught peeks out only rarely and his sadness passes quickly and easily.
He exists in a diminished place, a narrow community, with a greatly reduced cognitive ability level and skill set. But he is happy. He is content. He is safe. It may seem ugly to us but he does not see it that way. We must see his life through his eyes, not through our eyes or through our expectations.
Now and then, he gets a little "out of balance" but the medical staff and I work at helping him be at peace with himself through music, food, reassuring, and the very very careful use of calming drugs.
Many Dementia/Alzheimer's facilities have gotten a bad rap for drug use to calm residents in an effort to make it easier to take care of them, to sedate them into oblivion. And some facilities deserve to be chastised for such activity.
But many facilities also very carefully use medication to help the resident be calm within themselves, especially when they no longer have the ability to discuss their fears and emotions, when language fails them.
For those of you who think drug use is "wrong," I would say how is Gregory, in some ways, any different than the hundreds of thousands of people who need a mild tranquilizer or who pop an Ativan now and then to help them cope with life? When he is balanced; he is easy, happy, content, engaged, alert, and enjoying life to the fullest. His fullest ... not our concept of what "fullest" should be!
There are no expectations for Gregory from the outside and for the most part he has none for himself. He has no "shoulds" or "oughts" and that is beautiful. He has no obligations, doesn't have to be anywhere special or accomplish anything unique. Being late for an appointment or deadline does not exist for him. He gets to eat well, watch a lot of TV, see his favorite DVD movies, have his dark chocolate treats, sing, sit outside in the sun, and visit with people who love him and who somewhere inside he knows he loves back.
In many ways Gregory is well on his way to NIRVANA |nərˈvänə, nir-| noun (in Buddhism) a transcendent state in which there is neither suffering, desire, nor sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism. Something we are all looking forward to.
Don't cry for Gregory. Please see his glass as half full - not half empty, celebrate him as he is today do not grieve for his yesterdays and don't feel too bad for me either.
I love that man More Than Ever and enjoy him every day I visit. Slowly I have been able to begin thinking about our past and being grateful for all we have had. I am overjoyed at the wonderful care he is receiving at Lieberman and I am slowly reclaiming my life.
The hole ripped in my chest, at loosing what he was, will never be filled and when he dies it will be ripped open a touch more, but that hole will and never should be filled. It is the sacred place where our love for each other continues to live and will live as long as I breath. I have learned and will continue to learn how to live with that emptiness in my chest. Then I will die and will have achieved my Nirvana!
Tuesday, June 30, 2015
Reminders
Healing and tears are a constant that help to remind us that we are alive.
Joy, even though carried on the shoulders of Sorrow, also reminds us of this.
Joy, even though carried on the shoulders of Sorrow, also reminds us of this.
Tuesday, June 23, 2015
Sound Bites
I have found that I enjoy creating summarizing,
poetic 'sound bites' to describe various parts of my life.
My current sound bites include:
JOY and HOPE are back
but it is still too soon
to LIVE LARGE.
I have great JOY
but carried on the shoulders
of great SORROW.
Finally,
When describing our life I say,
Gregory is 'even'
and I am 'balanced.'
GIVING allows me such JOY
And what does it cost? Little!
poetic 'sound bites' to describe various parts of my life.
My current sound bites include:
JOY and HOPE are back
but it is still too soon
to LIVE LARGE.
I have great JOY
but carried on the shoulders
of great SORROW.
Finally,
When describing our life I say,
Gregory is 'even'
and I am 'balanced.'
GIVING allows me such JOY
And what does it cost? Little!
Sunday, May 17, 2015
Grace and Frankie
Jane Fonda and Lily Tomlin co-star as two women forced to reinvent their lives in this funny, honest new Netflix Original series. Elegant, proper Grace and freewheeling, eccentric Frankie aren't friends, even though their husbands Robert and Sol (Martin Sheen and Sam Waterston) have been law partners for decades. But when Robert and Sol announce that they're leaving their wives for each other, the two women start to bond in ways they never expected.
I am watching this Netflix series and loving it. The homosexuality of Robert and Sol are accepted as the norm and the emotions that all four characters are going through are real, raw, and honest. There are many tender moments between the male couple and between the new relationship of the ex-wives, as well as the original married couples. Often these tender moments bring tears.
But besides loving it, I am having some problems. So here I sit, with tears in my eyes not because of Grace and Frankie or Robert and Sol but because of Gregory and Michael. I am yet again grieving my loss, my loneliness, my aloneness.
As an older couple (in their 70's?) the men share moments of truth and honesty, of anger and love, of dealing with the complexity of their new relationship and of life itself. Those moments for the most part are over for Gregory and me. Our interactions are loving and beautiful, the are meaningful and honest, but they hold no depth of today only depth of spirit and love.
And I miss being able to sit on the sofa with Gregory supporting my tears, or making me laugh, or being able to spoon or hold hands as we drift off to sleep. So I take my tears away from the TV and out onto the balcony where I sit in the wonderfully spring into summer 70 degree air at sunset. And I look at the other chair next to the table and I cry. And I am lonely. And I miss my honey being here with me at home. And what is home without someone to share it with after 40+ years of love?
Friday, April 24, 2015
Alzheimer's: A Love Story
Watched second rough cut of "Alzheimer's: A Love Story."
Cried.
Watched it a second and third time.
Cried.
Gabe, Monica, Amanda, and Riani did a fine job of condensing 40+ years of love and 11+ years of walking the path of Alzheimer's into a 15 minute documentary! Not an easy job. But when you watch it, you will see, it is all about one thing: LOVE!
Next step is for me to attend the screening in LA. As I find out more about PBS and other film festivals, I will keep you posted here. Eventually I will be hosting a screening at the Lieberman Center and at my condo. Finally it will be available here on the blog.
Hopefully the documentary will not only shed more light on Alzheimer's and the JOY carried on the shoulders of SORROW that it brings, but also on same sex couples who are walking the same path that Gregory and I have been on.
Labels:
Alzheimer's,
Documentary,
Joy,
Path,
Sorrow
Sunday, March 29, 2015
Hatikva
Today for Lieberman's Sunday entertainment, a very talented young pianist performed a variety of music including classical, jazz, ragtime, Klesmer, and more. One piece he played was the "Hatikvah" or Israeli national anthem.
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As he was playing, many people in the audience began singling along in undertones and under their breath. It was a sound that while magical, was not joyous.
It seemed to carry the archetypal, universal sorrow and ache which the Jewish people have carried around through the centuries, and still seem to have as part of their cultural conscientiousness, beginning with the King of Egypt enslaving the Jews through Hitler and the Holocaust through today with Anti-Semitism still wreaking havoc.
"Hatikvah" "Hatikva" (הַתִּקְוָה, pronounced [hatikˈva], English: "The Hope") is the national anthem of Israel. Its lyrics are adapted from a poem by Naftali Herz Imber, a Jewish poet from Złoczów, (today, Zolochiv, Ukraine). Imber wrote the first version of the poem in 1877. The romantic anthem's theme reflects the Jew's 2000-year-old hope of returning to the Land of Israel, restoring it, and reclaiming it as a sovereign nation.
Hebrew | Transliteration | English translation |
|---|---|---|
| כֹּל עוֹד בַּלֵּבָב פְּנִימָה | Kol ‘od balevav penimah | As long as in the heart, within, |
| נֶפֶשׁ יְהוּדִי הוֹמִיָּה | Nefesh yehudi homiyah, | A Jewish soul still yearns, |
| וּלְפַאֲתֵי מִזְרָח, קָדִימָה, | Ul(e)fa’atei mizrach kadimah, | And onward, towards the ends of the east, |
| עַיִן לְצִיּוֹן צוֹפִיָּה, | ‘Ayin letziyon tzofiyah; | an eye still gazes toward Zion; |
| עוֹד לֹא אָבְדָה תִּקְוָתֵנוּ, | ‘Od lo avdah tikvateinu, | Our hope is not yet lost, |
| הַתִּקְוָה בַּת שְׁנוֹת אַלְפַּיִם | Hatikvah bat sh(e)not ’alpayim, | The hope of two thousand years, |
| לִהְיוֹת עַם חָפְשִׁי בְּאַרְצֵנוּ, | Lihyot ‘am chofshi b(e)’artzeinu, | To be a free nation in our land, |
| אֶרֶץ צִיּוֹן וִירוּשָׁלַיִם. | ’Eretz-Tziyon viy(e)rushalayim. | The land of Zion and Jerusalem. |
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