For about two or three weeks Gregory was sleeping more than usual. But sleeping is comfortable and OK. For a while now, we noticed that he would hold liquid in his mouth when taking a drink of water, juice, milk etc and Manny or I would have to stroke his under-chin or cheek and say, "Swallow, Swallow."
One of the final skills to go is the ability to swallow and that can cause un-chewed food and/or water to go down the wrong pipe and into the lungs, causing aspiration which can lead to Pneumonia.
(Aspiration pneumonia is an inflammation of your lungs and bronchial tubes. It happens after you inhale foreign matter. It is also known as anaerobic pneumonia. This condition is caused by inhaling materials such as vomit, food, or liquid.)
On Wednesday, September 30, Gregory had a haircut. He looked great. He was sleepy and only a little responsive. I spent a couple hours at his bedside chatting, singing, and touching. Manny was with him from 11:30 am until 6:00 pm.
On Thursday, October 1, Gregory had his routinely twice a week bed bath provided by Northwest Hospice CNAs. He slept through breakfast, all of the morning, and all of the rest of the day he was non-responsive but resting comfortably with the help of Hospice.
Hospice informed me that Gregory most likely was developing pneumonia but that it could go either way. I had signed off on not giving Gregory antibiotics, feeling that if he survived it was because he was not ready to die and if he did not survive it was because he was ready to leave us.
We decided it was time to administer small doses of Morpheme which quelled all of his coughing and helped him breath easier. Oxygen to help with his breathing was put in place as well.
I spent 12:00 noon until 5:00 pm at his bedside, talking, singing, and giving him permission to leave us if he was ready. Manny was there 11:30 am until 6:00 pm.
I decided that Gregory did not need a vigil person with him as he was very comfortable and the Lieberman Nurses were doing a superb job making sure he stayed comfortable and not in any trouble. They would call me at home if there was any change.
On Friday, October 2, Gregory was still sleeping and non-responsive. Hospice informed me that in all probability he was preparing himself to die. He was unable to eat or drink for a second day because he was not awake enough to be able to do so. Often when a person has decided to leave this world, they stop eating and drinking anyway.
Nice that he had a fresh haircut and was clean with his bed bath. He looked very comfortable and was resting peacefully. Morpheme and Oxygen continued.
Many of our friends and family spent the day with Gregory, all of us in the room at the same time. We talked about what was going on, after asking permission and apologizing to Gregory for talking about him instead of to him.
But we also talked with him, to each other about all kinds of things. We joked and laughed and told stories. It was as if Gregory was in the room with us to be part of the "goings on."
I was with him from 12:00 noon until 5:00 pm. Manny was with him from 11:30 am until 6:00 pm. Again, Gregory got his privacy over night as he prepared to transition to whatever lie beyond this life.
On Saturday, October 3, Gregory's condition worsened but he continued resting comfortably. He was still non-responsive, on Morphene, on Oxygen, not eating or drinking.
I again gave Gregory permission to leave when he was ready. Now the many visitors were talking to Gregory, not each other, holdings his hand, massaging his arms and legs. Mostly quiet prevailed. People started spending alone time in the room with Gregory, with the door closed, saying their goodbyes.
I was with Gregory from 12:00 noon until 5:00 pm and said goodbye by crawling into bed with him, telling him what I needed to say, gave him permission again to leave when he was ready. I crawled out of bed, kissed him all over his face many times.
We had what we called "Ceremony of the Seven Kisses with the only rule being that after announcing out loud, in a sing songy way, Ceremony of the Seven Kisses, there could be fewer than seven or more than seven but never seven. Fun being silly.) Finally I kissed him on his open mouth three times.
On the third kiss, Gregory mustered his energy from somewhere deep inside and kissed me back. No words. Just a beautiful last kiss. A final Magical Momentary Monumental Experience.
Manny was with him from 11:30 am until 6:00 pm. Again, Gregory got his privacy over night as he prepared to transition to whatever lie beyond this life.
On Sunday, October 4, God-Son Isaac and I lit a candle to help guide Gregory as he continued preparing to die, as we were leaving the condo headed to Lieberman. The candle, placed on the stove, allowed us to notice it was 12:04 noon. The phone rang at 12:07 noon. It was Manny who informed me that Gregory just took his last breath.
I was glad that Manny was with him but also felt that I had made the right decision not to be there when Gregory passed because our great love for each other would only complicate and might cause Gregory to want to hold on longer. "They" say that often people wait until they are alone to die for this reason. But I was glad that Manny was there.
Jan, Jake, Isaac, and many Lieberman staff came through to sit with Gregory to wish him safe travels. I sat with him and talked to him and cried for a while. I held his still warm hand and kissed his cooling forehead and lips. I had wondered if I could get through this part of Gregory's leaving us and it turned out to be fairly easy. It was still my Greggie lying there his bed but it was obvious that his essence, his spirt was no longer living there.
The Hospice Nurse arrived to complete the Death Certificate details. We all left and the Nurse supervised the removal of his remains when the Cremation Society of Illinois people arrived.
Showing posts with label Decisions. Show all posts
Showing posts with label Decisions. Show all posts
Tuesday, October 13, 2015
Sunday, February 15, 2015
Before or After the Elephants
I am sharing this post from my writer's blog (http://mhorvich.blogspot.com - opens in a new window) here on the Alzheimer's blog as it applies as well to Gregory and my journey with Alzheimer's.
Euphemistically "Memorial Gardens" stands for CEMETERY!
Yesterday I spent a little over an hour at Memorial Gardens, which conveniently happens to be neighbors to the Lieberman Center.
For a while I have been thinking about educating myself about pre-paid end of life arrangements for Gregory and me. I met with Lynn, who was very nice, well informed, understanding, and helpful.
At one point she asked Chris for help and I think after hearing me talk about planning for me and my partner, he decided to stay in the meeting. Turns out he is Gay, much younger than I, and his first lover passed away a short while ago. We had issues in common to talk about.
Not easy planning for your best friend, life partner's demise let alone your own. I told them I wanted a "no frills" cremation for both of us. Discussing the details was less difficult than I had imagined and only twice the emotional pushed the intellectual out of the way and I got choked up.
No service, no flowers, no catering, no obituary, no web site of remembrance, no coffin. Just a cardboard box. Ashes are delivered in a plain urn ready for scattering. There are two jokes about the scattering of our ashes which Gregory and I tell.
I want my ashes scattered at the circus. I just don't know if it should be before or after the elephants!
Gregory wants his ashes scattered in Lake Michigan since he so loves the water. So a few friends will gather in our bathroom, say a few nice words, and flush the ashes down the toilet. Fastest way to Lake Michigan!
Gregory and I had discussed this many years ago when we first wrote our first wills. It was hard for me to decide "Cremate" or "Bury." I still hadn't decided on the night before we were to visit the lawyer to draw up the wills.
Gregory and I were talking about the pros and cons of each when it dawned on me, "It isn't an issue of 'Do I want to be cremated or buried!' I DON'T WANT TO DIE!" After that it was easy to decide: cremation.
There are a lot of legal issues about dying and how to handle the remains. I have Power of Attorney for Health over Gregory. His nephew Mark and his wife Colleen are next in line to make decisions for Gregory if I pre-decease or if I cannot make decisions for myself they also take over that responsibility for me.
You could say that I trust them with our lives ... and I do ... and I have ... by making them next in line trustees.
Lynn suggested I look into one issue. Usually when a person dies, the Power of Attorney is terminated. I should make sure it states that I retain rights to dispose of Gregory's remains (and M&C for G and/or me!)
It gets a little more complicated. There is insurance for me in case I die while traveling and have to get shipped home. There are provisions for the pre-paid arrangements to transfer to another city if I move. The funeral director has a specific role to play as does the cemetery even thought there is no burial. There are additional fees that go to the state and city for various certificates and registrations. It goes on and on but both Lynn and Chris made it easy to understand.
So while I was dealing with something that could be very difficult, I felt empowered to be able to make decisions about the things I can control. And to have everything paid for in advance.
• • •
Euphemistically "Memorial Gardens" stands for CEMETERY!
Yesterday I spent a little over an hour at Memorial Gardens, which conveniently happens to be neighbors to the Lieberman Center.
For a while I have been thinking about educating myself about pre-paid end of life arrangements for Gregory and me. I met with Lynn, who was very nice, well informed, understanding, and helpful.
At one point she asked Chris for help and I think after hearing me talk about planning for me and my partner, he decided to stay in the meeting. Turns out he is Gay, much younger than I, and his first lover passed away a short while ago. We had issues in common to talk about.
Not easy planning for your best friend, life partner's demise let alone your own. I told them I wanted a "no frills" cremation for both of us. Discussing the details was less difficult than I had imagined and only twice the emotional pushed the intellectual out of the way and I got choked up.
No service, no flowers, no catering, no obituary, no web site of remembrance, no coffin. Just a cardboard box. Ashes are delivered in a plain urn ready for scattering. There are two jokes about the scattering of our ashes which Gregory and I tell.
I want my ashes scattered at the circus. I just don't know if it should be before or after the elephants!
Gregory wants his ashes scattered in Lake Michigan since he so loves the water. So a few friends will gather in our bathroom, say a few nice words, and flush the ashes down the toilet. Fastest way to Lake Michigan!
Gregory and I had discussed this many years ago when we first wrote our first wills. It was hard for me to decide "Cremate" or "Bury." I still hadn't decided on the night before we were to visit the lawyer to draw up the wills.
Gregory and I were talking about the pros and cons of each when it dawned on me, "It isn't an issue of 'Do I want to be cremated or buried!' I DON'T WANT TO DIE!" After that it was easy to decide: cremation.
There are a lot of legal issues about dying and how to handle the remains. I have Power of Attorney for Health over Gregory. His nephew Mark and his wife Colleen are next in line to make decisions for Gregory if I pre-decease or if I cannot make decisions for myself they also take over that responsibility for me.
You could say that I trust them with our lives ... and I do ... and I have ... by making them next in line trustees.
Lynn suggested I look into one issue. Usually when a person dies, the Power of Attorney is terminated. I should make sure it states that I retain rights to dispose of Gregory's remains (and M&C for G and/or me!)
It gets a little more complicated. There is insurance for me in case I die while traveling and have to get shipped home. There are provisions for the pre-paid arrangements to transfer to another city if I move. The funeral director has a specific role to play as does the cemetery even thought there is no burial. There are additional fees that go to the state and city for various certificates and registrations. It goes on and on but both Lynn and Chris made it easy to understand.
So while I was dealing with something that could be very difficult, I felt empowered to be able to make decisions about the things I can control. And to have everything paid for in advance.
When Gregory and I leave this life, there will be no tangible evidence of our having been here. No grave, no stone, no tomb, no bench, no niche, no urn. What will remain is the love we were able to share with others, to be carried in their hearts until it is their turn to leave this life to go home.
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!
Sunday, January 5, 2014
Update on E-Mail Update
My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)
Meanwhile I am afraid that we might be the closest that we have been to having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.
For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc
One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.
Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")
Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.
Meanwhile I am afraid that we might be the closest that we have been to having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.
For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc
One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.
Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")
Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.
I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!
I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)
Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."
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