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Journal – March 2017 It is now the end of March and Donna has been in care at George Derby Centre for eighteen months. She is comfortable. The care provided to her at the Centre is excellent, and her reliance on them, their care and friendship, continues to grow. Her friendship with other residents, also continues although this has been a tough winter with the loss of a few friends. Last year, when Donna had just arrived at George Derby and everything was new, the individuals we met were co-residents. This year, they are friends. |
DONNA'S STORY  March isn't all a "down" month. We still enjoy lots of laughs.
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Loss of these friends has probably affected me more than Donna because some of those who died were people I have known, respected, liked and regularly conversed with over this past year. And Donna likely doesn’t remember a person who has died and is suddenly no longer there.
Of course, there are losses every year – mostly in the winter and early spring months. George Derby, and the other dementia care centres, are all palliative care institutions with none of their residents expected to return to their former lives. I know this but it is still hard to accept. These feelings are also felt by the staff who have done their best to ensure everyone’s life is comfortable, free of stress and pain.
Donna still loves all musical events that she can attend. There is the “Town Hall” pub-nights that I have described more than once. There are also small sing-a-long sessions weekly in each of the wards or units, and there are regular celebrations of birthdays at various locations in the centre. If I get to hear of those events, I pack up Donna in her wheelchair and we go down to those places where a professional entertainer is invited to help the birthday celebrations go off with a bang. They are always successful. When the music starts, her feet start tapping, there is an immediate broadening of Donna’s smile and an increase in her level of enjoyment. And we usually stop off for a tub of ice-cream on the way home to Special Care – her favourite is chocolate ripple – mine too.
Now that the better weather is near, we will also go out to visit the gardens around. There is a new project beginning at G.D. Residents and their families are invited to lay claim to a garden tub where they will be free to plant whatever they like. They will have the opportunity to watch their plants grow and produce flowers, or fruit, or veg, or whatever they wish (legal constraints to be observed, naturally).
Donna has definitely passed through that wonderful three month period of pure joy, happiness and affection. The love she feels for me and for others hasn’t disappeared. It is just a little less ebullient and demonstrative. She still loves to cuddle with me; looks forward to a long series of kisses on my arrival and throughout my visit. The smiles are there when I arrive, but there is a more basic sadness that I observe in her. This affects my happiness.
I wonder if this period of demonstrative affection will return. I expect not. I have had long talks with one of her care-aides – Gerry. Gerry is a special kind of care-aide. His training would allow him to be higher in his nursing career than he has chosen, but he says that staying as a care-aide allows him to provide hands-on care for his residents that wouldn’t be part of his responsibility in a higher position.
Gerry has a lot of knowledge and experience with Alzheimer’s patients and has suggested that Donna’s affectionate and joyful phase is possibly over. She might be on a downward slope again, moving to the next plateau. I will just wait and see.
March sixteen. Today is a difficult day. Donna has some stomach trouble. She has been constipated lately and the nurses think it might be a bowel issue so medication is given to help things move. Shortly after, Donna complains to me that she has a pain in her gut. It is tough because she cannot give me any clues as to what it might be. While I am with her, she throws up her lunch. Is this something in addition to constipation?
The nurse tries to find the source of her pain. It is low down on her left side. Donna had a bout of diverticulosis a couple of years ago, but the nurse is also concerned about kidney problems. This is my most difficult day with her since she’s been in care. I have never left her alone when she was suffering anything in the past and I won’t leave now.
Soon she is feeling much better but she is extremely tired and ultimately falls asleep in her chair. She must have been feeling very bad because she missed the entertainment – singing and dancing that she always enjoys. It is very hard to leave her in the hands of the professionals on this day. By the next day, Donna is back to her usual self.
But now, this morning, I waken with a very heavy heart. I am plagued by that feeling of despair I cautiously advised you all to put aside. This depression is triggered by a recent dream, which is reminding me, seemingly for the first time, that Donna is dying.
Of course this isn’t my first realization of her tragedy. My brain is simply all mixed up. The journey of a victim of Alzheimer’s disease is well known to me, to science and the world at large. And my brain has spent countless hours, both in dreams and awake, helping me through these troubling times, lifting my spirits, showing me new roads to travel. So, in January, I joined the George Derby Family Council to try and help improve life enrichment for all residents, not just Donna. It is working a little.
But I think now, my heart is trying to intervene. My heart dances to a different piper than my brain, and my emotions are a bit wild today. My brain and my heart are currently in conflict; conflict possibly brought on by this recent change in Donna’s well-being.
Donna is dying and there is nothing I can do.
My sister, Sandra, has written a short narrative about me, as author of Donna’s Story, where she describes our relationship as being “soul-mates.” Donna and I are soul-mates. We have been so over the fifty years we’ve been together, travelling through life, joined-at-the-hip. We’ve done almost everything together; haven’t made separate circles of friends; have only rarely engaged in independent activities.
These are dangerous times for soul-mates. When one partner dies, what happens to the other partner? In these darker hours and days, it can sometimes be difficult to find a purpose to my life. It is time to set some new goals. I had those feelings on that “black Wednesday” when I committed Donna to a care-centre back in 2015. “Donna is gone! What am I to do?” Of course, Donna had not gone, and the past eighteen months have produced an even closer bond between us – with more joy than in the previous six Alzheimer’s years.
But I am frightened. Must I go through all of these feelings again? Do I have the stamina or the will to make it through? I can feel a reluctance growing in me. Shall I pull back and reduce the frequency of my visits to Donna? I can’t do that, and I won’t do that. She needs me now, more than ever – and I need her.
The sun is not shining today. Perhaps it will tomorrow.
Of course, there are losses every year – mostly in the winter and early spring months. George Derby, and the other dementia care centres, are all palliative care institutions with none of their residents expected to return to their former lives. I know this but it is still hard to accept. These feelings are also felt by the staff who have done their best to ensure everyone’s life is comfortable, free of stress and pain.
Donna still loves all musical events that she can attend. There is the “Town Hall” pub-nights that I have described more than once. There are also small sing-a-long sessions weekly in each of the wards or units, and there are regular celebrations of birthdays at various locations in the centre. If I get to hear of those events, I pack up Donna in her wheelchair and we go down to those places where a professional entertainer is invited to help the birthday celebrations go off with a bang. They are always successful. When the music starts, her feet start tapping, there is an immediate broadening of Donna’s smile and an increase in her level of enjoyment. And we usually stop off for a tub of ice-cream on the way home to Special Care – her favourite is chocolate ripple – mine too.
Now that the better weather is near, we will also go out to visit the gardens around. There is a new project beginning at G.D. Residents and their families are invited to lay claim to a garden tub where they will be free to plant whatever they like. They will have the opportunity to watch their plants grow and produce flowers, or fruit, or veg, or whatever they wish (legal constraints to be observed, naturally).
Donna has definitely passed through that wonderful three month period of pure joy, happiness and affection. The love she feels for me and for others hasn’t disappeared. It is just a little less ebullient and demonstrative. She still loves to cuddle with me; looks forward to a long series of kisses on my arrival and throughout my visit. The smiles are there when I arrive, but there is a more basic sadness that I observe in her. This affects my happiness.
I wonder if this period of demonstrative affection will return. I expect not. I have had long talks with one of her care-aides – Gerry. Gerry is a special kind of care-aide. His training would allow him to be higher in his nursing career than he has chosen, but he says that staying as a care-aide allows him to provide hands-on care for his residents that wouldn’t be part of his responsibility in a higher position.
Gerry has a lot of knowledge and experience with Alzheimer’s patients and has suggested that Donna’s affectionate and joyful phase is possibly over. She might be on a downward slope again, moving to the next plateau. I will just wait and see.
March sixteen. Today is a difficult day. Donna has some stomach trouble. She has been constipated lately and the nurses think it might be a bowel issue so medication is given to help things move. Shortly after, Donna complains to me that she has a pain in her gut. It is tough because she cannot give me any clues as to what it might be. While I am with her, she throws up her lunch. Is this something in addition to constipation?
The nurse tries to find the source of her pain. It is low down on her left side. Donna had a bout of diverticulosis a couple of years ago, but the nurse is also concerned about kidney problems. This is my most difficult day with her since she’s been in care. I have never left her alone when she was suffering anything in the past and I won’t leave now.
Soon she is feeling much better but she is extremely tired and ultimately falls asleep in her chair. She must have been feeling very bad because she missed the entertainment – singing and dancing that she always enjoys. It is very hard to leave her in the hands of the professionals on this day. By the next day, Donna is back to her usual self.
But now, this morning, I waken with a very heavy heart. I am plagued by that feeling of despair I cautiously advised you all to put aside. This depression is triggered by a recent dream, which is reminding me, seemingly for the first time, that Donna is dying.
Of course this isn’t my first realization of her tragedy. My brain is simply all mixed up. The journey of a victim of Alzheimer’s disease is well known to me, to science and the world at large. And my brain has spent countless hours, both in dreams and awake, helping me through these troubling times, lifting my spirits, showing me new roads to travel. So, in January, I joined the George Derby Family Council to try and help improve life enrichment for all residents, not just Donna. It is working a little.
But I think now, my heart is trying to intervene. My heart dances to a different piper than my brain, and my emotions are a bit wild today. My brain and my heart are currently in conflict; conflict possibly brought on by this recent change in Donna’s well-being.
Donna is dying and there is nothing I can do.
My sister, Sandra, has written a short narrative about me, as author of Donna’s Story, where she describes our relationship as being “soul-mates.” Donna and I are soul-mates. We have been so over the fifty years we’ve been together, travelling through life, joined-at-the-hip. We’ve done almost everything together; haven’t made separate circles of friends; have only rarely engaged in independent activities.
These are dangerous times for soul-mates. When one partner dies, what happens to the other partner? In these darker hours and days, it can sometimes be difficult to find a purpose to my life. It is time to set some new goals. I had those feelings on that “black Wednesday” when I committed Donna to a care-centre back in 2015. “Donna is gone! What am I to do?” Of course, Donna had not gone, and the past eighteen months have produced an even closer bond between us – with more joy than in the previous six Alzheimer’s years.
But I am frightened. Must I go through all of these feelings again? Do I have the stamina or the will to make it through? I can feel a reluctance growing in me. Shall I pull back and reduce the frequency of my visits to Donna? I can’t do that, and I won’t do that. She needs me now, more than ever – and I need her.
The sun is not shining today. Perhaps it will tomorrow.
