Logging into TP today, I realise it’s nearly three years since I joined.
I’ve been reflecting today on these past three years because yesterday my mum moved into respite care with a view to permanency. It feels like the worst 24 hours of my life. But I’ll get to that in a second because I wanted to go over a little of what we’ve experienced in these last few years. (But feel free to jump down to my last paragraph which is the essence of what I’m saying.)
When I updated my profile today, I took it from ‘my mum is 64 and about to be diagnosed’ to that she is 67 and has Alzheimer’s. These three years have been with filled upheaval and change but also a healing of the relationship between my mum and me. My very first post on TP mentioned the difficulties she and I always had. But with the acceptance of my carer role, I have mellowed towards her. I have also become the planner of my mother’s life, the trouble-shooter and peacemaker.
Mum has been involved in a dementia day program with an art emphasis over the last 18 months which seen a development of a creative spirit. That, I have to say, has been the truly wonderful things to happen over these years.
Mum has had daily carers looking after her these last few months, morning and evening. Between us, we have structured mum’s day but, living alone, she still has to contend with the nights and the times by herself. I guess she has been experiencing sundowning because she is very tired in the late afternoons and becomes tearful. Invariably she rings me to fix whatever is wrong and invariably it’s something that we are no longer able to work through over the phone so I drive over and we work it out. She will tell me that she hates living alone, although she never used to (as she’s been widowed for 37 years and I was the last child to leave home). She says she is ready to move and asks what plans we are making. My sister and I are investigating and applying to care facilities.
Suddenly out of the blue last week, we have a call that a low care bed is available in a prime establishment, coincidentally where mum’s mother had lived 20 years ago. It looks very different now with lots of modernisation but still has happy memories for mum. The visit goes well as does our arrival on moving day. The head of low care leaves with my sister and I return to mum to find her in tears because of the behaviour of another resident. Immediately mum wants to go home. I knew it would be hard and I would be distressed. Mum had been very stoic until then but now is distraught. I stay with her for a while and leave feeling completely wrecked.
This morning I ring to ask the carers about mum. She has settled and is doing well. My husband and I visit this afternoon and have a very relaxed time. We sit outside in the beautiful garden and mum chats about the lovely facilities and what the care workers have done for her. I have brought some pastels and pencils and mum and I draw. My husband reads the paper and tells us amusing things he reads. We leave after afternoon tea and mum is settled to watch tv in her room.
About an hour later I have a phone call at home from a care worker saying mum wants to speak to me. Mum had a phone in her room but thankfully can’t auto dial my number because I know the calls would be far more frequent than they were when she was at home. I speak to mum. She is distraught. She can’t find her clothes. She is wearing pyjamas because all her trousers are in the wash. I haven’t brought all her clothes to her yet. She wants to come home, she says repeatedly.
We talk about the stay being respite so that she can have rest and support. We talk about her hating living at home alone and wanting to move. I’m surprisingly calm. I think I’ve cried out everything from the last 24 hours. We have gone from a very relaxed afternoon visit to a distressing phone call at 4.30pm, the beginning of the witching hour for mum. I’m glad mum has a telephone so that she doesn’t feel we’ve taken everything away. I’m equally glad she can’t ring me herself. I’ll ask the staff to distract her if she feels the need to ring me. This is only day two.
I’m trying to regain some of my life. My husband and I are going on a 5 day holiday in two weeks’ time. We only booked it the day we accepted respite care. Regardless I was going to arrange a holiday and respite in-home care anyway. It’s been five years of managing her gradual decline. It has been three years of intensive caring for someone who possibly would be at home longer if she had a spouse. I don’t know.
My husband says ‘don’t try to rationalist the irrational’. I didn’t think I would be this distressed and guilt-stricken. I feel wretched and fear that mum will hate me. I’m scared if take her out for the day that she’ll refuse to return to the home. After several years of fine-tuning a plan of caring, I feel like I’m back to Day 1 when she was diagnosed. It’s all unknown again. Thanks for reading my rant. It’s pretty cathartic to write it all down.
I’ve been reflecting today on these past three years because yesterday my mum moved into respite care with a view to permanency. It feels like the worst 24 hours of my life. But I’ll get to that in a second because I wanted to go over a little of what we’ve experienced in these last few years. (But feel free to jump down to my last paragraph which is the essence of what I’m saying.)
When I updated my profile today, I took it from ‘my mum is 64 and about to be diagnosed’ to that she is 67 and has Alzheimer’s. These three years have been with filled upheaval and change but also a healing of the relationship between my mum and me. My very first post on TP mentioned the difficulties she and I always had. But with the acceptance of my carer role, I have mellowed towards her. I have also become the planner of my mother’s life, the trouble-shooter and peacemaker.
Mum has been involved in a dementia day program with an art emphasis over the last 18 months which seen a development of a creative spirit. That, I have to say, has been the truly wonderful things to happen over these years.
Mum has had daily carers looking after her these last few months, morning and evening. Between us, we have structured mum’s day but, living alone, she still has to contend with the nights and the times by herself. I guess she has been experiencing sundowning because she is very tired in the late afternoons and becomes tearful. Invariably she rings me to fix whatever is wrong and invariably it’s something that we are no longer able to work through over the phone so I drive over and we work it out. She will tell me that she hates living alone, although she never used to (as she’s been widowed for 37 years and I was the last child to leave home). She says she is ready to move and asks what plans we are making. My sister and I are investigating and applying to care facilities.
Suddenly out of the blue last week, we have a call that a low care bed is available in a prime establishment, coincidentally where mum’s mother had lived 20 years ago. It looks very different now with lots of modernisation but still has happy memories for mum. The visit goes well as does our arrival on moving day. The head of low care leaves with my sister and I return to mum to find her in tears because of the behaviour of another resident. Immediately mum wants to go home. I knew it would be hard and I would be distressed. Mum had been very stoic until then but now is distraught. I stay with her for a while and leave feeling completely wrecked.
This morning I ring to ask the carers about mum. She has settled and is doing well. My husband and I visit this afternoon and have a very relaxed time. We sit outside in the beautiful garden and mum chats about the lovely facilities and what the care workers have done for her. I have brought some pastels and pencils and mum and I draw. My husband reads the paper and tells us amusing things he reads. We leave after afternoon tea and mum is settled to watch tv in her room.
About an hour later I have a phone call at home from a care worker saying mum wants to speak to me. Mum had a phone in her room but thankfully can’t auto dial my number because I know the calls would be far more frequent than they were when she was at home. I speak to mum. She is distraught. She can’t find her clothes. She is wearing pyjamas because all her trousers are in the wash. I haven’t brought all her clothes to her yet. She wants to come home, she says repeatedly.
We talk about the stay being respite so that she can have rest and support. We talk about her hating living at home alone and wanting to move. I’m surprisingly calm. I think I’ve cried out everything from the last 24 hours. We have gone from a very relaxed afternoon visit to a distressing phone call at 4.30pm, the beginning of the witching hour for mum. I’m glad mum has a telephone so that she doesn’t feel we’ve taken everything away. I’m equally glad she can’t ring me herself. I’ll ask the staff to distract her if she feels the need to ring me. This is only day two.
I’m trying to regain some of my life. My husband and I are going on a 5 day holiday in two weeks’ time. We only booked it the day we accepted respite care. Regardless I was going to arrange a holiday and respite in-home care anyway. It’s been five years of managing her gradual decline. It has been three years of intensive caring for someone who possibly would be at home longer if she had a spouse. I don’t know.
My husband says ‘don’t try to rationalist the irrational’. I didn’t think I would be this distressed and guilt-stricken. I feel wretched and fear that mum will hate me. I’m scared if take her out for the day that she’ll refuse to return to the home. After several years of fine-tuning a plan of caring, I feel like I’m back to Day 1 when she was diagnosed. It’s all unknown again. Thanks for reading my rant. It’s pretty cathartic to write it all down.
