A Day In The Life
Every time I think things are settling down into a pattern I seem to get proved wrong almost immediately, but the last week she seems to have settled so my latest attempt is as follows:
Rosemarie seems to be sleeping through the night from about 11 p.m. She is woken at 6 and changed and then goes straight back to sleep. She is woken again some time between 8 and 9 and given breakfast (I still doubt she wakes up and eats a bowl of porridge and a plate of bacon and eggs...) then is left to sleep again until....
It's really hard to find out. I am still trying to locate any notes that actually record it. The one-to-one carer notes don't start until she is up and dressed (if they start at all) and it does not seem to be an event that the staff who get her up feel moved to record, or even notice: if it is not a recordable event and they are busy why would they check the time? The result is that I tend to get a different answer from each person I ask.
This apparent compulsion to be knowledgeable does not have the desired effect. I find myself increasingly doubting what I hear: how much she ate for breakfast/dinner, if she was distressed during the day, if she has been jolting and so on. I would prefer it if people told me they didn't know. I can understand that.
Anyway, I am told the time is usually between 10 (which is described as 'early') and 11.30. This is pretty near lunch time. I am assured that if the lounge is noisy she is taken somewhere else to eat (I suspect the intention is there but I don't see it happening unless they are fully staffed and there are no other problems).
I am told she always eats her lunch and the times I know about she does seem to be hungry (which casts doubt on the Full Breakfast).
Afterwards she is returned to the main lounge with the rest of the seated residents and she may or may not be moved from her wheelchair into a comfy chair. Sometime around mid afternoon she is taken away and changed (according to new rules instituted by Good Nurse). I arrive shortly after that (other more infrequent visitors may arrive earlier) and her mood seems to depend on the atmosphere of the lounge. I arrived once and the carer had taken her to the garden and another time she was sitting by the fish tank near the nurse's station, but on every other occasion unless she is away being changed she is sitting next to a carer in the lounge. The television is usually on and the level of additional noise varies. The Shouting Woman is usually there but slumped asleep in her chair. Rosemarie never looks happy and is rarely being stimulated (or it conveniently stops the moment I walk in) but usually she will respond positively to my suggestion that we go down to the garden or just somewhere else. I have usually stopped off at her room to collect fruit and chocolates from the fridge and so I loop the bag over the handles of the wheelchair and we make our escape.
Rosemarie is increasingly unwilling or unable to keep her feet on the footrests of the wheelchair. Her legs either stick out stiffly and she starts to slide out of the chair or - more alarmingly - her feet fall between or behind the footrests and scuff the floor. This results in her ankles being covered with bruises where they bang against the footrests and the ever-present risk of her foot catching on the floor and the forward momentum of the wheelchair breaking her ankle. It makes travel a long and tedious business; she will usually only keep her feet on the footrests for about ten seconds before we must stop and reposition them.
Good Nurse is arranging a new, reclining wheelchair that will hopefully solve this problem.
About 75% of the time the visits downstairs are positive and she shows signs of enjoying them. She points at the flowers or at least the lawn and tries to say something. She sits in the shade and eats fruit or chocolate and will often become chatty, laugh and smile and generally relax. I play music from my phone or sing songs, and sometimes she will seem to show me affection, but I think it is just my imagination.
The other 25% of the time something goes wrong. It could be that it is too windy, too hot or she is just not in the mood. She will dry cry, wriggle, try to stand up, and sometimes get aggressive and verbal. And I do mean verbal: this is when we get almost whole words clearly enunciated. Usually some variant of 'No, don't!', 'Stop that!' or 'Go away!' - and often attempting to include an expletive.
But in any case about 4 she will start to show signs of tiredness, rubbing her face and generally looking worn out. About 4.30 I take her upstairs, drop off the uneaten food in the fridge, and go to find supper.
I don't even bother any more with the lounge where the other residents are sitting. There is always too much noise and discord. The other lounge is usually quieter but has the Walkers in it. They are not aggressive or abusive and I genuinely feel sorry for them, but it is a bit like being on the set of a zombie movie and Rosemarie is still sometimes spooked when one of them shuffles up and stands right next to her looming over her but saying nothing. I am polite and calm and ask them to move on but there is always a slightly tense delay until they do. Sometimes the Sex Pest wanders in and he is more difficult to get rid of
A good time downstairs may or may not lead to a good experience at supper - depending on whether anything disturbs her - but a bad time downstairs will almost always lead to a bad experience at supper. She will be difficult to feed, constantly moving her arms and legs, leaning hard to the side and generally showing signs of distress. She desperately tries to communicate something.
She usually takes some food, and with persistence I can get her to swallow the paracetamol diluted in fruit juice. We then sit and wait for the carers to finish serving supper so they can change her for bed. Sometimes we wait in the lounge, but if she is too distressed I take her back to her room and we wait there, where at least I can play some of her music or one of her ballet DVDs. It is also calmer, hopefully more comfortingly familiar, and free from uncontrollable interruptions.
The carers get her ready for bed some time between 5.30 and 6.15 depending on how busy they are. Sometimes I stay in the room and help to calm and reassure her but often I leave them to it. Most have a good relationship with her and she trusts them.
Being in bed usually calms her and there is an all round feeling of relief. This can be a sweet and lovely time, with intimate chatting and some laughter. I feed her chocolate and fruit and stroke her arm. Sometimes she actually seems to be looking at the TV screen and following the dancing. It can get very peaceful.
And sometimes not. If she is agitated and starts wriggling she will slide down the bed and start to rotate. Before long she can be lying sideways with her head against the safety bars and her legs waving in the air. Moving her back up the bed is really a two person job but I am reluctant to call the carers every five minutes so usually I struggle and manage to raise her on my own, with a minimum of help from her. Five minutes later she is back lying sideways.
But the good times can be very warm and emotional (for me anyway). I don't know who she thinks she is talking to, but I don't think it is me. Telling her I love her gets no reaction now and although she will grab and hold my finger she will do the same thing with a cushion.
But it is better than nothing. If we have had a nice day in the garden and supper has not been too stressful, it can be a beautiful time sitting next to her bed, stroking her arm and talking to her, while the music plays, the dancers spin on the screen, and the birds sing in the evening sunshine outside the window.
Parting is sometimes a sweet sorrow but often she shows no signs that she knows I am leaving. She rarely lets me kiss her on the lips anymore. I tell her I will see her the next day and kiss her on the forehead. When I leave she is watching the TV or staring into space at some place I can never join her.
Rosemarie seems to be sleeping through the night from about 11 p.m. She is woken at 6 and changed and then goes straight back to sleep. She is woken again some time between 8 and 9 and given breakfast (I still doubt she wakes up and eats a bowl of porridge and a plate of bacon and eggs...) then is left to sleep again until....
It's really hard to find out. I am still trying to locate any notes that actually record it. The one-to-one carer notes don't start until she is up and dressed (if they start at all) and it does not seem to be an event that the staff who get her up feel moved to record, or even notice: if it is not a recordable event and they are busy why would they check the time? The result is that I tend to get a different answer from each person I ask.
This apparent compulsion to be knowledgeable does not have the desired effect. I find myself increasingly doubting what I hear: how much she ate for breakfast/dinner, if she was distressed during the day, if she has been jolting and so on. I would prefer it if people told me they didn't know. I can understand that.
Anyway, I am told the time is usually between 10 (which is described as 'early') and 11.30. This is pretty near lunch time. I am assured that if the lounge is noisy she is taken somewhere else to eat (I suspect the intention is there but I don't see it happening unless they are fully staffed and there are no other problems).
I am told she always eats her lunch and the times I know about she does seem to be hungry (which casts doubt on the Full Breakfast).
Afterwards she is returned to the main lounge with the rest of the seated residents and she may or may not be moved from her wheelchair into a comfy chair. Sometime around mid afternoon she is taken away and changed (according to new rules instituted by Good Nurse). I arrive shortly after that (other more infrequent visitors may arrive earlier) and her mood seems to depend on the atmosphere of the lounge. I arrived once and the carer had taken her to the garden and another time she was sitting by the fish tank near the nurse's station, but on every other occasion unless she is away being changed she is sitting next to a carer in the lounge. The television is usually on and the level of additional noise varies. The Shouting Woman is usually there but slumped asleep in her chair. Rosemarie never looks happy and is rarely being stimulated (or it conveniently stops the moment I walk in) but usually she will respond positively to my suggestion that we go down to the garden or just somewhere else. I have usually stopped off at her room to collect fruit and chocolates from the fridge and so I loop the bag over the handles of the wheelchair and we make our escape.
Rosemarie is increasingly unwilling or unable to keep her feet on the footrests of the wheelchair. Her legs either stick out stiffly and she starts to slide out of the chair or - more alarmingly - her feet fall between or behind the footrests and scuff the floor. This results in her ankles being covered with bruises where they bang against the footrests and the ever-present risk of her foot catching on the floor and the forward momentum of the wheelchair breaking her ankle. It makes travel a long and tedious business; she will usually only keep her feet on the footrests for about ten seconds before we must stop and reposition them.
Good Nurse is arranging a new, reclining wheelchair that will hopefully solve this problem.
About 75% of the time the visits downstairs are positive and she shows signs of enjoying them. She points at the flowers or at least the lawn and tries to say something. She sits in the shade and eats fruit or chocolate and will often become chatty, laugh and smile and generally relax. I play music from my phone or sing songs, and sometimes she will seem to show me affection, but I think it is just my imagination.
The other 25% of the time something goes wrong. It could be that it is too windy, too hot or she is just not in the mood. She will dry cry, wriggle, try to stand up, and sometimes get aggressive and verbal. And I do mean verbal: this is when we get almost whole words clearly enunciated. Usually some variant of 'No, don't!', 'Stop that!' or 'Go away!' - and often attempting to include an expletive.
But in any case about 4 she will start to show signs of tiredness, rubbing her face and generally looking worn out. About 4.30 I take her upstairs, drop off the uneaten food in the fridge, and go to find supper.
I don't even bother any more with the lounge where the other residents are sitting. There is always too much noise and discord. The other lounge is usually quieter but has the Walkers in it. They are not aggressive or abusive and I genuinely feel sorry for them, but it is a bit like being on the set of a zombie movie and Rosemarie is still sometimes spooked when one of them shuffles up and stands right next to her looming over her but saying nothing. I am polite and calm and ask them to move on but there is always a slightly tense delay until they do. Sometimes the Sex Pest wanders in and he is more difficult to get rid of
A good time downstairs may or may not lead to a good experience at supper - depending on whether anything disturbs her - but a bad time downstairs will almost always lead to a bad experience at supper. She will be difficult to feed, constantly moving her arms and legs, leaning hard to the side and generally showing signs of distress. She desperately tries to communicate something.
She usually takes some food, and with persistence I can get her to swallow the paracetamol diluted in fruit juice. We then sit and wait for the carers to finish serving supper so they can change her for bed. Sometimes we wait in the lounge, but if she is too distressed I take her back to her room and we wait there, where at least I can play some of her music or one of her ballet DVDs. It is also calmer, hopefully more comfortingly familiar, and free from uncontrollable interruptions.
The carers get her ready for bed some time between 5.30 and 6.15 depending on how busy they are. Sometimes I stay in the room and help to calm and reassure her but often I leave them to it. Most have a good relationship with her and she trusts them.
Being in bed usually calms her and there is an all round feeling of relief. This can be a sweet and lovely time, with intimate chatting and some laughter. I feed her chocolate and fruit and stroke her arm. Sometimes she actually seems to be looking at the TV screen and following the dancing. It can get very peaceful.
And sometimes not. If she is agitated and starts wriggling she will slide down the bed and start to rotate. Before long she can be lying sideways with her head against the safety bars and her legs waving in the air. Moving her back up the bed is really a two person job but I am reluctant to call the carers every five minutes so usually I struggle and manage to raise her on my own, with a minimum of help from her. Five minutes later she is back lying sideways.
But the good times can be very warm and emotional (for me anyway). I don't know who she thinks she is talking to, but I don't think it is me. Telling her I love her gets no reaction now and although she will grab and hold my finger she will do the same thing with a cushion.
But it is better than nothing. If we have had a nice day in the garden and supper has not been too stressful, it can be a beautiful time sitting next to her bed, stroking her arm and talking to her, while the music plays, the dancers spin on the screen, and the birds sing in the evening sunshine outside the window.
Parting is sometimes a sweet sorrow but often she shows no signs that she knows I am leaving. She rarely lets me kiss her on the lips anymore. I tell her I will see her the next day and kiss her on the forehead. When I leave she is watching the TV or staring into space at some place I can never join her.
posted by Other Kosh at 2:01 pm
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