I miss my mum. This is just so hard. I've posted bits of her story, but need to do it again. If I start a thread just for her, I can update it - even if no one wants to read it, it may help me to put into words what has been happening.
Only six months ago, she was absolutely fine. She may have struggled for the odd word (maybe it was worse than we realised), but few 85 year olds have perfect recall. She lived alone, hated being reliant on me for taxi services - she had lost her driving licence because of poor eyesight - and still spent time in her garden and with friends. At the end of November she had a bad cold which knocked her out physically. She seemed to recover in early December, but by Christmas she was getting upset that she was getting "muddled" over her Christmas card list and presents. In mid December my son had a potentially serious spinal injury. He's fine, but it certainly took our attention away from my mum. We had a lovely Christmas Day - all the family there, including my severely autistic brother and his favourite carer, all my kids and my two grandchildren. My mother was not "quite with us", but seemed happy and there seemed no reason to rush the doctors appointment planned for the new year.
On Boxing Day, my brother was rushed to hospital with a massive stroke - a complete shock. Obviously all attention was on him. I spent time with him, though my children were careful to spend large parts of the day with their grandmother.
We visited the gp in early January. He was concerned about her heart (she has AF), but was convinced there was nothing wrong with her memory. He ordered tests and a follow up appointment a week later. I was reassured enough to take a couple of days "off", with my kids keeping an eye on her, so that I could go to a family funeral. By the time we got to the follow up appointment, she had deteriorated so much that the gp came to the house and ordered her straight to hospital. After her heart was stabilised she was transferred to an "elderly" ward, where she became increasingly confused, hallucinating. Told by a social worker that she would be discharged home with four short care visits a day she became very frightened as she didn't think she should be on her own. She's self funding, so we found a place in a local care home. She was not happy (I don't think she would have been anywhere), but didn't feel she could be at home. Apart from being muddled nothing "worked" from microwave, television, radio to most importantly the telephone.
She was in the care home only a few weeks before a UTI triggered fast AF again, and she was readmitted to hospital for a short stay. Again, she was much more confused, refusing to stay attached to the heart monitor and tearing canullas out (very sore after). She got back to the care home, and seemed to be settling. We signed her up as a permanent resident and she moved to a nicer room - then broke her hip. She was operated on, with full general anaesthetic, woke up confused and in pain. She wouldn't cooperate with the physios, and became unwell with fast AF and water retention. Eight days after the operation I was rung by the discharge nurse and told that she was very much better, was sitting in her chair, had been assessed by the care home and was on her way back there. They thought it best to discharge her while she was "well". The care home hadn't realised she would be back that day. They couldn't get a hospital bed until the next day so she wasn't comfortable (she also fell out of bed in the morning, though I don't think any harm was done).
The evening of discharge she was complaining of her chest feeling tight, and her breathing was difficult. The care home called the GP in the morning, and she was sent straight back to hospital with heart failure, fluid on the lungs etc. Her heart was again stabilised on the short stay ward, but she was clearly unwell, and this time they transferred her to the "infection control ward" which is apparently routine for patients admitted from care homes. She was very confused and in a huge amount of pain. They did try to control the pain with morphine, but that put her out so much they had to stop it. She is apparently just too frail. The day she was transferred she was convinced I had signed her up for a trial to see how much pain she could take. She was begging me to stop it, no matter how much they were paying me. She was alternately offering me anything she could think of and threatening to cut me out of her will! The next two days she was on morphine, asleep, and unable to be aroused.
The next day they had stopped the morphine. She was more conscious and talking nonstop - but almost all of it was unintelligible, though I did catch the words "torture room". I was told that she had developed a chest infection as well as a UTI which would be treated with intravenous antibiotics.Yesterday I visited with my eldest daughter - who she is very close to. Again she was drifting in and out of sleep, but although talking nonsense, at least the words were understandable. The downside of greater consciousness was that she was back to removing her canulla - no more intravenous drugs or fluids. The sister I spoke to said it wasn't a problem as she was now taking her meds orally, and drinking. Another nurse said she hadn't been eating and wasn't drinking enough. She had also refused her medication so they were going to try again later. She still needs those antibiotics, but if they can't do it intravenously and she won't take them orally what happens? I'll be off to see her later - we'll see how things have developed today.
In the meantime, from a purely selfish point of view, my brother is now severely physically disabled. He finally moved from hospital to a nursing home last Wednesday. It's rather too far from my house, but it's been a long hard fight to get him into anything that might be remotely suitable for a 54 year old with severe learning disabilites, rather than a standard nursing home catering for the elderly. My mother devoted a large part of her life to him, and, although I have had to become far more involved as she became physically less able, it's something we've been doing "together". If nothing else I need her to talk everything through with. I have a good, supportive family, but they just don't have the history, relationship, and understanding of everything that has gone before.
I really don't know if anyone is going to read through all this, but it helps to post. My mother has always been my support, and so much has changed so quickly that it's really difficult to come to terms with.
Only six months ago, she was absolutely fine. She may have struggled for the odd word (maybe it was worse than we realised), but few 85 year olds have perfect recall. She lived alone, hated being reliant on me for taxi services - she had lost her driving licence because of poor eyesight - and still spent time in her garden and with friends. At the end of November she had a bad cold which knocked her out physically. She seemed to recover in early December, but by Christmas she was getting upset that she was getting "muddled" over her Christmas card list and presents. In mid December my son had a potentially serious spinal injury. He's fine, but it certainly took our attention away from my mum. We had a lovely Christmas Day - all the family there, including my severely autistic brother and his favourite carer, all my kids and my two grandchildren. My mother was not "quite with us", but seemed happy and there seemed no reason to rush the doctors appointment planned for the new year.
On Boxing Day, my brother was rushed to hospital with a massive stroke - a complete shock. Obviously all attention was on him. I spent time with him, though my children were careful to spend large parts of the day with their grandmother.
We visited the gp in early January. He was concerned about her heart (she has AF), but was convinced there was nothing wrong with her memory. He ordered tests and a follow up appointment a week later. I was reassured enough to take a couple of days "off", with my kids keeping an eye on her, so that I could go to a family funeral. By the time we got to the follow up appointment, she had deteriorated so much that the gp came to the house and ordered her straight to hospital. After her heart was stabilised she was transferred to an "elderly" ward, where she became increasingly confused, hallucinating. Told by a social worker that she would be discharged home with four short care visits a day she became very frightened as she didn't think she should be on her own. She's self funding, so we found a place in a local care home. She was not happy (I don't think she would have been anywhere), but didn't feel she could be at home. Apart from being muddled nothing "worked" from microwave, television, radio to most importantly the telephone.
She was in the care home only a few weeks before a UTI triggered fast AF again, and she was readmitted to hospital for a short stay. Again, she was much more confused, refusing to stay attached to the heart monitor and tearing canullas out (very sore after). She got back to the care home, and seemed to be settling. We signed her up as a permanent resident and she moved to a nicer room - then broke her hip. She was operated on, with full general anaesthetic, woke up confused and in pain. She wouldn't cooperate with the physios, and became unwell with fast AF and water retention. Eight days after the operation I was rung by the discharge nurse and told that she was very much better, was sitting in her chair, had been assessed by the care home and was on her way back there. They thought it best to discharge her while she was "well". The care home hadn't realised she would be back that day. They couldn't get a hospital bed until the next day so she wasn't comfortable (she also fell out of bed in the morning, though I don't think any harm was done).
The evening of discharge she was complaining of her chest feeling tight, and her breathing was difficult. The care home called the GP in the morning, and she was sent straight back to hospital with heart failure, fluid on the lungs etc. Her heart was again stabilised on the short stay ward, but she was clearly unwell, and this time they transferred her to the "infection control ward" which is apparently routine for patients admitted from care homes. She was very confused and in a huge amount of pain. They did try to control the pain with morphine, but that put her out so much they had to stop it. She is apparently just too frail. The day she was transferred she was convinced I had signed her up for a trial to see how much pain she could take. She was begging me to stop it, no matter how much they were paying me. She was alternately offering me anything she could think of and threatening to cut me out of her will! The next two days she was on morphine, asleep, and unable to be aroused.
The next day they had stopped the morphine. She was more conscious and talking nonstop - but almost all of it was unintelligible, though I did catch the words "torture room". I was told that she had developed a chest infection as well as a UTI which would be treated with intravenous antibiotics.Yesterday I visited with my eldest daughter - who she is very close to. Again she was drifting in and out of sleep, but although talking nonsense, at least the words were understandable. The downside of greater consciousness was that she was back to removing her canulla - no more intravenous drugs or fluids. The sister I spoke to said it wasn't a problem as she was now taking her meds orally, and drinking. Another nurse said she hadn't been eating and wasn't drinking enough. She had also refused her medication so they were going to try again later. She still needs those antibiotics, but if they can't do it intravenously and she won't take them orally what happens? I'll be off to see her later - we'll see how things have developed today.
In the meantime, from a purely selfish point of view, my brother is now severely physically disabled. He finally moved from hospital to a nursing home last Wednesday. It's rather too far from my house, but it's been a long hard fight to get him into anything that might be remotely suitable for a 54 year old with severe learning disabilites, rather than a standard nursing home catering for the elderly. My mother devoted a large part of her life to him, and, although I have had to become far more involved as she became physically less able, it's something we've been doing "together". If nothing else I need her to talk everything through with. I have a good, supportive family, but they just don't have the history, relationship, and understanding of everything that has gone before.
I really don't know if anyone is going to read through all this, but it helps to post. My mother has always been my support, and so much has changed so quickly that it's really difficult to come to terms with.
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