Even when death is expected, there is a shock to it. The lifelessness of that shell body is surreal. The spirit, the energy that is life, in a second gone, turns a body into a piece of hard sculpture.
For years I have been living one day at a time because the long term thought of the daily grind of care giving to Alzheimer person would have been too depressing to take on. My pattern of thought had a major outline that I care for John lovingly for this day, this one day. The next morning I started over. If the day came that I would need to lift him I would give up my role and turn his care over to a team of people. Fortunately, our years together were many and his sweetness and gentle personality stay with him to the end. The help of a team for his care was only in the last 20 days of his life.
There was a time about a month ago that was a particularly difficult afternoon with many accidents and clean ups. I said to John, who found these moments confusing and distasteful, "this is no way for the two of us to live anymore". In totally clarity he looked at me and said, "I agree".
Ten days later, he had a slight cold and what appeared to be a tiny stroke at home at noon. That was the beginning of a rapid and fast decline of all his systems. He died yesterday quietly toward morning in a care facility.
There are windows or seconds of absolute normalcy with Alzheimer individuals and all of around treasure and cling to these moments. One day as John was recovering in the hospital from the flu, I walked into his room and a nurse and aid were busy doing their work. John sitting up straight in his bed and said, "I love you, I love you" as I walked toward him. A little to my surprise this clear declaration of emotion but it was nothing short of shock to the two other women in the room. I took his hand and told him, "I love you, also". I knew at the second that these moments were to treasure because his health was very fragile and he probably was never coming home again. We shared other brief tender seconds here and there but remembering his need to remind me of his love on that morning made those last few years worth it all.
Saturday, April 13, 2013
Thursday, April 11, 2013
The Walks
Yesterday I enrolled John in Hospice. His level of care will be better and they provided more equipment for this care.
Each day John's health is fading. His body has trembles now, he baubles and his all over appears is of a failing body. While I am there we generally go for long circulate walks in the halls and I talk to him. John is still there---------his hand will go up to wave to someone as we pass or he will say, "Hi, there."
A couple Hospice nurses have used the theme that dying is like being born-- it is a process. Yesterday, the lady said that some times the spirit is more ready and have to wait for the body, other times is it is the opposite. Then there is the sweet spot of coming together spirit and body and the individual passes over. I would describe these days as terribly sad but also there is a tenderness and sweetness fulled with love and memories.
Wednesday, April 3, 2013
mystery of death
At fifteen is one of the first memories I have of someone speaking interestingly about death. Father Denis was pastor and once a week he taught religious class to sophomores. Father Denis love to teach the life lessons instead of the same old text book material. He started to talk about people who he saw die and the do's and don'ts around dying people. Of course, we all at 15 found this much more interesting that any subject covered in the religious book sitting on the desk. The topic of death was a mystery to all of us.
Father Denis's main first rule was never whisper or talk in front of the sick person assuming that they can not hear. Hearing part of the brain is always active he convinced us. The second thing that we all found amazing is that there is a choice by the spirit of when the spirit wants to leave the body. He had this long story of giving the last sacrament repeatedly to this man. The man was at peace, was ready to die and the wife goes into a crying, screaming I can't live without you scene. At some point after many visits to the house, Father Denis took her to another part of the home and explained it is time to let go of poor Norman spirit depart. He explained her crying was so distressing that the spirit would not leave. He encouraged her to quietly prayer and remember that it was time for Norman's earthly life to end.
I have experienced watching people that I love die and have developed a whole internalize system of coping. The first time the mystery of death became personal I was in my early 30's, I owned a bookstore so all the material I used was on the shelve and what was not there I ordered to read. It was the 70's and many revolutions were taking place at one time. Blacks in the streets marched for civil rights, women burned bras in protect for equal pay and scholarships , hippies against war dressed up crazy, acted out and did drugs and scared everyone over 40. There was also a revolutionary movement called hospice and a best seller call ON DEATH AND DYING.
The emotional and physical and psychological event of death for the first time had been studied and some common ideas were shared by most humans, it seemed. For the first time, the priest and the family doctor were not the go to answer people concerning all the questions surrounding death. This single book, I believe, open the door for many more books on the subject and many points of view to opening talked about for the first time.
My husband, in the 70's, was hospitalized for six weeks with cancer that was not operated on because it was too later by the time they figured out what the problem was. The days before CAT scans. In the end on a morphine drip and totally consumed by cancer my husband died as I read every printed book on death, afterlife, any thing to explain what was happening at this time in my life. I was way beyond grade school religious stories of angels and time in purgatory. I wanted answers to harder questions of why we share a life and why we pick our mates and why they leave us early. I needed to make sense of this death to deal with why I should go on living. Depression and grief are powerful emotions particularly when young.
Those books gave me a frame to understand all of this in a way that has served me well my whole life. It does not wash away sadness, loneliness and the full the empty space. It only let's me understand it is in a bigger frame.
I am facing the finial chapter of John's life. I am already grieving this change but on my visit today with John I am happy to see him so calm and comfortable. I am amazed at his serenity.
Father Denis's main first rule was never whisper or talk in front of the sick person assuming that they can not hear. Hearing part of the brain is always active he convinced us. The second thing that we all found amazing is that there is a choice by the spirit of when the spirit wants to leave the body. He had this long story of giving the last sacrament repeatedly to this man. The man was at peace, was ready to die and the wife goes into a crying, screaming I can't live without you scene. At some point after many visits to the house, Father Denis took her to another part of the home and explained it is time to let go of poor Norman spirit depart. He explained her crying was so distressing that the spirit would not leave. He encouraged her to quietly prayer and remember that it was time for Norman's earthly life to end.
I have experienced watching people that I love die and have developed a whole internalize system of coping. The first time the mystery of death became personal I was in my early 30's, I owned a bookstore so all the material I used was on the shelve and what was not there I ordered to read. It was the 70's and many revolutions were taking place at one time. Blacks in the streets marched for civil rights, women burned bras in protect for equal pay and scholarships , hippies against war dressed up crazy, acted out and did drugs and scared everyone over 40. There was also a revolutionary movement called hospice and a best seller call ON DEATH AND DYING.
The emotional and physical and psychological event of death for the first time had been studied and some common ideas were shared by most humans, it seemed. For the first time, the priest and the family doctor were not the go to answer people concerning all the questions surrounding death. This single book, I believe, open the door for many more books on the subject and many points of view to opening talked about for the first time.
My husband, in the 70's, was hospitalized for six weeks with cancer that was not operated on because it was too later by the time they figured out what the problem was. The days before CAT scans. In the end on a morphine drip and totally consumed by cancer my husband died as I read every printed book on death, afterlife, any thing to explain what was happening at this time in my life. I was way beyond grade school religious stories of angels and time in purgatory. I wanted answers to harder questions of why we share a life and why we pick our mates and why they leave us early. I needed to make sense of this death to deal with why I should go on living. Depression and grief are powerful emotions particularly when young.
Those books gave me a frame to understand all of this in a way that has served me well my whole life. It does not wash away sadness, loneliness and the full the empty space. It only let's me understand it is in a bigger frame.
I am facing the finial chapter of John's life. I am already grieving this change but on my visit today with John I am happy to see him so calm and comfortable. I am amazed at his serenity.
New Home for John
I went to see John over noon hour today to get a feel for how lunch was handled at Garden Courte. I found him sitting in the hall right inside the secure area next to the garden door. It maybe have been Donna, this Saturday afternoon friend, that just been there and they had been in the garden. As I greeted John, he smiled slightly and turned back to look in the garden. John can best described as pleasant, calm and half in this world and perhaps more in another.
John and I then moved to the garden to get some of the warm sun on our skin and I asked him how his sleep was and if he had a good morning. He doesn't really answer but smiles to the questions. I made some talk about my morning and we moved toward another door that enters the dining room. Suddenly there is Ken, Mira and Ahman. What a surprise! They are passing by and what to check in on John. John acted as he knew this group of people. We all shared about 15 minutes and they were off.
I sat for along while watch how the staff moved patients into the dining room one by one. The tables were covered with dark blue linen cloths and bright lemon napkins. As I sat there and I remembered my Mother's stay at a long term care facility, the memory is that of a horrible smell. It was a drag to visit her for the odor in that place. It was considered one of the best in the city. And yet, this place has none of that. I wonder about design or management. This staff is well trained in the small details about each person and method of handling situations and it shows. I mention all this because the public media and my personal experience has all been so negative and I sat there today and realized that I was changing my mind about most of my belief on long term care. None of us get the luxury of choosing our finial period time here but the very weak, sick and elderly need a staff of people to give that proper care. When will this ever be an a goal for our national conscious, that this is a human right? Probably not for a long time because we have not evolved enough as a people spiritually.
John and I then moved to the garden to get some of the warm sun on our skin and I asked him how his sleep was and if he had a good morning. He doesn't really answer but smiles to the questions. I made some talk about my morning and we moved toward another door that enters the dining room. Suddenly there is Ken, Mira and Ahman. What a surprise! They are passing by and what to check in on John. John acted as he knew this group of people. We all shared about 15 minutes and they were off.
I sat for along while watch how the staff moved patients into the dining room one by one. The tables were covered with dark blue linen cloths and bright lemon napkins. As I sat there and I remembered my Mother's stay at a long term care facility, the memory is that of a horrible smell. It was a drag to visit her for the odor in that place. It was considered one of the best in the city. And yet, this place has none of that. I wonder about design or management. This staff is well trained in the small details about each person and method of handling situations and it shows. I mention all this because the public media and my personal experience has all been so negative and I sat there today and realized that I was changing my mind about most of my belief on long term care. None of us get the luxury of choosing our finial period time here but the very weak, sick and elderly need a staff of people to give that proper care. When will this ever be an a goal for our national conscious, that this is a human right? Probably not for a long time because we have not evolved enough as a people spiritually.
Thursday, February 21, 2013
Visitors - local and transcendeltal
The fire department visit us the other day for a 'pick up'. That is what it is called when they call to pick up some one that can get off the floor or the ground.
I would not of known of this service except the care givers that have been in and out of my life because of my brother's illnesses and John's helpers. Because of the size and in John's case his inability to take instructions, one person can lift a fallen person, the fire department comes to the rescue.
We were in the back yard and the day was sunny and pretty warm about 50. I was working against time of the end of the day and quickly wanted to spread some compost on a couple raised beds. John was sitting in his usual chair about three feet away. I cut the last bag of plastic and was lifting it to dump when I hear John said something like, "Oh, Shit!" He was down. After a moment of calmness and a couple questions I realized that he was not hurt and we simply had to figure a way to get him up. John could not follow any of my ideas of getting on all fours and then using the chair to get up. The neighbors were not home. There was nothing left to do but call the people at 911.
In five minutes they were here, in ten minutes John was sitting in his chair in the living room and a few minutes after that they were gone. This non-event was very important for me because the courage it took to make the call was the hardest part. I realized that I had to act and I could not do it myself.
The other visitors are of a different nature. Spirits of family and friends are visiting John. John has been seeing visitors for some time now. The last ones he commented about were the other morning while getting out of the shower. "They are all laughing at me!" "Oh, why is that John?", I asked.
Sitting eating dinner a few days earlier, John said, "Do you see all of them?" I asked where are there. John pointed to the center of the living room. I suggested some names and he replied sometimes. I asked him if he talks to them, John replied, "sometimes".
I told Ken as a couple of these comments and Ken relayed the story a month ago while caring for John one evening, John asked Ken if he see the angel people.
John seems to float in two worlds with his body here and his spirit/mental/soul back and forth. This phenomena is often talked about with caregivers and priests. My brother working with the dying had many stories of this nature. Most caregivers can tell stories also but will only journey in the direction is they find a person open to hearing the stories.
In John's case it is not everyday but every week now I hear some comment.
I would not of known of this service except the care givers that have been in and out of my life because of my brother's illnesses and John's helpers. Because of the size and in John's case his inability to take instructions, one person can lift a fallen person, the fire department comes to the rescue.
We were in the back yard and the day was sunny and pretty warm about 50. I was working against time of the end of the day and quickly wanted to spread some compost on a couple raised beds. John was sitting in his usual chair about three feet away. I cut the last bag of plastic and was lifting it to dump when I hear John said something like, "Oh, Shit!" He was down. After a moment of calmness and a couple questions I realized that he was not hurt and we simply had to figure a way to get him up. John could not follow any of my ideas of getting on all fours and then using the chair to get up. The neighbors were not home. There was nothing left to do but call the people at 911.
In five minutes they were here, in ten minutes John was sitting in his chair in the living room and a few minutes after that they were gone. This non-event was very important for me because the courage it took to make the call was the hardest part. I realized that I had to act and I could not do it myself.
The other visitors are of a different nature. Spirits of family and friends are visiting John. John has been seeing visitors for some time now. The last ones he commented about were the other morning while getting out of the shower. "They are all laughing at me!" "Oh, why is that John?", I asked.
Sitting eating dinner a few days earlier, John said, "Do you see all of them?" I asked where are there. John pointed to the center of the living room. I suggested some names and he replied sometimes. I asked him if he talks to them, John replied, "sometimes".
I told Ken as a couple of these comments and Ken relayed the story a month ago while caring for John one evening, John asked Ken if he see the angel people.
John seems to float in two worlds with his body here and his spirit/mental/soul back and forth. This phenomena is often talked about with caregivers and priests. My brother working with the dying had many stories of this nature. Most caregivers can tell stories also but will only journey in the direction is they find a person open to hearing the stories.
In John's case it is not everyday but every week now I hear some comment.
Friday, January 4, 2013
Floating on an iceberg
I dreamt last night I was floating on an iceberg. I was on guard all the time for changes. Things/life are the same for days then a wind or a wave comes along and a chuck of my grounding/surface is lost. It is gone into the sea, there is less space for me. I then study the surrounding for other dangers that maybe unforeseen. Most often, the surface slips away quietly, only occasionally, is it dramatic and loud.
That I immediately realized is my current life with John.
A incident of extra work one month, then one week becomes a daily routine. It grows maybe twice a day or three times a day over months. It went from picking out clothes for John to wear to totally dressing him now. Much like one would do to a life size doll. I shave him, wash his face and comb his hair. Showers have gone from every couple days to a couple times a day because his total lack of control over his colon now. Each one of these changes puts a threat on his current arrangement of day care outings to the senior center. Their rules have limits on individual care. That added worry plus the physical demands, I already have adjusted to dealing with at home is part of my 36 hours.
The handbook has not been written that explains this life. Oh, there are the platitudes about caregivers and the 36 hours day. I never read the one that says I should check his bed five times a night to make sure he is not sitting on the edge asleep and would fall and hit his head. Then there are three times I see that he is sitting on the edge of the bed. Up I go and softly talk him into laying down so I can cover him up. The effect of this not one night but the week, the month of endless disrupted sleep are the pieces of the iceberg that fall into the sea. I feel the lose of ground around me.
Mentally, the worry for most women in this country are the finances beside the physical demands. There is no short cut for that worry. This society has no place or care for the old among it's population. It is easy to say, get help in the house or send your love one to a care facility. The problem is the time line. Is this arrangement going to be for a month or a year or five years. At what cost? Tell me the time line and I can work out what I can afford and deal with it.
I know I have to make changes in this house. I have to face the fact that I am dealing with stress, lack of sleep and in need of more hours free of the responsibility of caring for John. More professional help brings along wisdom to the site.
While this iceberg has some sun today, so it is time for a walk around and a fresh view of the distance.
That I immediately realized is my current life with John.
A incident of extra work one month, then one week becomes a daily routine. It grows maybe twice a day or three times a day over months. It went from picking out clothes for John to wear to totally dressing him now. Much like one would do to a life size doll. I shave him, wash his face and comb his hair. Showers have gone from every couple days to a couple times a day because his total lack of control over his colon now. Each one of these changes puts a threat on his current arrangement of day care outings to the senior center. Their rules have limits on individual care. That added worry plus the physical demands, I already have adjusted to dealing with at home is part of my 36 hours.
The handbook has not been written that explains this life. Oh, there are the platitudes about caregivers and the 36 hours day. I never read the one that says I should check his bed five times a night to make sure he is not sitting on the edge asleep and would fall and hit his head. Then there are three times I see that he is sitting on the edge of the bed. Up I go and softly talk him into laying down so I can cover him up. The effect of this not one night but the week, the month of endless disrupted sleep are the pieces of the iceberg that fall into the sea. I feel the lose of ground around me.
Mentally, the worry for most women in this country are the finances beside the physical demands. There is no short cut for that worry. This society has no place or care for the old among it's population. It is easy to say, get help in the house or send your love one to a care facility. The problem is the time line. Is this arrangement going to be for a month or a year or five years. At what cost? Tell me the time line and I can work out what I can afford and deal with it.
I know I have to make changes in this house. I have to face the fact that I am dealing with stress, lack of sleep and in need of more hours free of the responsibility of caring for John. More professional help brings along wisdom to the site.
While this iceberg has some sun today, so it is time for a walk around and a fresh view of the distance.
Sunday, November 4, 2012
Sock, Shoes and Slippers
I lead John to his bedroom and found this glasses, slippers and his Irish sweater to all be put on before breakfast. I handed his glasses and he said, "Those mine?"
"Yeap, they are yours."
His eyes got wider, "Well, I will be dipped in Chocolate." I pointed to his slippers and his feet, then to the rocker with his sweater on it. I raced back to the stove to check on the oatmeal cooking.
Moments later John appeared wearing one slipper and no sweater. I walked him back to the room and helped him put on his sweater and stood while he put on the other slipper. I notice later his buttoning of the sweater gave him an uneven look to the front, something that has no surprise anymore considering life's big issues.
John like to hang on to the four poster bed more than he used to, is much slower getting up or sitting down in a chair. Now getting into the car is easier with someone pointing out which car door to choice. The latest surprise is he sometime looks at a plate of food and just continues to either walk by it as at breakfast time or continue to play with his cards in the evening. I have to encourage eating. I have know that with Alzheimer there develops no sense of hunger or being fuller but this is new for John to ignore food in front of him.
Daily the tiniest things happen like putting two socks on one foot, or forgetting how to place the tooth brush on the teeth and realizing the front of the playing card from back.
John basic personality is sweet and that remains intact. He has always like to flirt with women and that reminds true even today with the caregivers. I get these looks of concern occasionally of either of the women and I assure them that I am not jealous at all of John sharing his attention to another woman.
"Yeap, they are yours."
His eyes got wider, "Well, I will be dipped in Chocolate." I pointed to his slippers and his feet, then to the rocker with his sweater on it. I raced back to the stove to check on the oatmeal cooking.
Moments later John appeared wearing one slipper and no sweater. I walked him back to the room and helped him put on his sweater and stood while he put on the other slipper. I notice later his buttoning of the sweater gave him an uneven look to the front, something that has no surprise anymore considering life's big issues.
John like to hang on to the four poster bed more than he used to, is much slower getting up or sitting down in a chair. Now getting into the car is easier with someone pointing out which car door to choice. The latest surprise is he sometime looks at a plate of food and just continues to either walk by it as at breakfast time or continue to play with his cards in the evening. I have to encourage eating. I have know that with Alzheimer there develops no sense of hunger or being fuller but this is new for John to ignore food in front of him.
Daily the tiniest things happen like putting two socks on one foot, or forgetting how to place the tooth brush on the teeth and realizing the front of the playing card from back.
John basic personality is sweet and that remains intact. He has always like to flirt with women and that reminds true even today with the caregivers. I get these looks of concern occasionally of either of the women and I assure them that I am not jealous at all of John sharing his attention to another woman.
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