Standing in the wreckage
Rosemarie has been sleeping a lot.
We had worked out that after 5-6 hours of being awake, especially if she was stationary in her wheelchair, she would start to get seriously tired and the jolting and the leaning would begin in earnest. This could be delayed a little by providing specific stimulation like a walk round the garden or outside, but it was rare to last beyond supper.
And then it got worse. Wednesday night she fell asleep before I left - which is unheard of. She slept all night and all the following day. She was still asleep when I arrived mid afternoon. They had tried to give her lunch but she did not wake up enough to eat the food. They brought supper and she actually woke enough to eat a spoonful of beans and a yoghurt then back to sleep.
I found this very worrying and I could feel a large cold weight in my stomach. I have been fearing the next stage of the disease and I have seen other residents who have moved from awake and (what passes for) conscious to sleeping nearly all the time. I dread this: empty hours sitting next to my sleeping love or sitting guiltily somewhere else telling myself I should be there. It is a particularly cruel fate if she is only awake for an hour or two a day but I do not know which two hours. I could visit her for weeks and not see her awake, and know that every time she woke I was not there.
These are the rough-edged thoughts tumbling round my mind when I sit next to her sleeping, quietly snoring form.
Yesterday she was awake when I arrived and Good Nurse said she thought Rosemarie had a chest infection (there seems to be one doing the rounds) and that might explain the tiredness. Antibiotics had been requested. Rosemarie was asleep again before I left.
Today I arrived and she seemed in great humour, chuckling and fluttering her eyelashes at me. I was overjoyed and fed her pineapple chunks and chocolate. She smiled at me and said something. Then a Care Worker came in and told me that Rosemarie had vomited up her breakfast earlier, had been very sleepy and not been able to have any lunch, and was only being given sips of water. Oops.
Sure enough she soon began to deteriorate and the jolting increased and she started twisting and waving her legs in the air. Then Good Nurse arrived and told me the Doctor had visited earlier and Rosemarie had been cheerful and amusing, and did not seem at all ill. This makes things difficult: I have taken to videoing Rosemarie when she is distressed so I have some evidence when I have to convince a medical professional there is a problem. This happened at the Medication Review we had recently (that will have to be an out of sequence post).
I am getting exhausted by all this. I have no idea what to expect when I visit each day, and I can't seem to get any useful information about what to expect from anybody. Everything in my life seems to be On Hold. Over the past twenty months almost everything I thought I had spent my life building seems to have collapsed or become a faint ghost. Family and friends are wonderful of course, and intellectually I know that there are countless people enduring far worse, but somehow I am left with the feeling everything really important to me has crashed, and the remains lie twisting and jolting on a bed in a South London care home.
We had worked out that after 5-6 hours of being awake, especially if she was stationary in her wheelchair, she would start to get seriously tired and the jolting and the leaning would begin in earnest. This could be delayed a little by providing specific stimulation like a walk round the garden or outside, but it was rare to last beyond supper.
And then it got worse. Wednesday night she fell asleep before I left - which is unheard of. She slept all night and all the following day. She was still asleep when I arrived mid afternoon. They had tried to give her lunch but she did not wake up enough to eat the food. They brought supper and she actually woke enough to eat a spoonful of beans and a yoghurt then back to sleep.
I found this very worrying and I could feel a large cold weight in my stomach. I have been fearing the next stage of the disease and I have seen other residents who have moved from awake and (what passes for) conscious to sleeping nearly all the time. I dread this: empty hours sitting next to my sleeping love or sitting guiltily somewhere else telling myself I should be there. It is a particularly cruel fate if she is only awake for an hour or two a day but I do not know which two hours. I could visit her for weeks and not see her awake, and know that every time she woke I was not there.
These are the rough-edged thoughts tumbling round my mind when I sit next to her sleeping, quietly snoring form.
Yesterday she was awake when I arrived and Good Nurse said she thought Rosemarie had a chest infection (there seems to be one doing the rounds) and that might explain the tiredness. Antibiotics had been requested. Rosemarie was asleep again before I left.
Today I arrived and she seemed in great humour, chuckling and fluttering her eyelashes at me. I was overjoyed and fed her pineapple chunks and chocolate. She smiled at me and said something. Then a Care Worker came in and told me that Rosemarie had vomited up her breakfast earlier, had been very sleepy and not been able to have any lunch, and was only being given sips of water. Oops.
Sure enough she soon began to deteriorate and the jolting increased and she started twisting and waving her legs in the air. Then Good Nurse arrived and told me the Doctor had visited earlier and Rosemarie had been cheerful and amusing, and did not seem at all ill. This makes things difficult: I have taken to videoing Rosemarie when she is distressed so I have some evidence when I have to convince a medical professional there is a problem. This happened at the Medication Review we had recently (that will have to be an out of sequence post).
I am getting exhausted by all this. I have no idea what to expect when I visit each day, and I can't seem to get any useful information about what to expect from anybody. Everything in my life seems to be On Hold. Over the past twenty months almost everything I thought I had spent my life building seems to have collapsed or become a faint ghost. Family and friends are wonderful of course, and intellectually I know that there are countless people enduring far worse, but somehow I am left with the feeling everything really important to me has crashed, and the remains lie twisting and jolting on a bed in a South London care home.
posted by Other Kosh at 7:15 pm
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