Hi All,
I hope it is okay to post what is maybe more of a venting post. My heart is breaking for my mum and for the first time in my life, I feel so exhausted and useless. My mum was a single parent, she came the UK at 18 to do nursing within the windrush generation and has been the matriarch of the family. My mum is 67 and was diagnosed with early onset Alzheimers coming up four years ago, I am her only child and my mum's sister also lives nearby; we are a very small family unit.
My mum is at Millview a psychiatric hospital, within a dementia ward. She has been in hospital for almost three months now and has been under a section 3 for several weeks. The hospitals have lost four uti cultures for my mum; I actually arranged a private culture whilst she was in the county hospital. Though she was refusing her medication, so has not been properly treated for a low level uti, which is why she went into hospital, though this started almost four months ago. She was admitted because she had been vomiting her medication and everything actually, for almost three weeks and only keeping things done with a antiemetic injection from the paramedics.
I have been caring for my mother full-time since she was diagnosed with Alzheimers, though last year her health really started to deteriorating due to covid and the difficulties we faced in accessing dental care for her. She had two abscess' for over a year, which I did not know she had for a long-time and when we realised she was in pain, it took almost six months to arrange two minor surgeries.
It has been the most intense two years, I think my mum has had almost twenty uti's and antibiotic treatments. Because of covid we avoided the hospital at all costs, really at the detriment of our health and now I understand my mum's health. We just were not being told how to access adequate treatment for her, I think because my mum would seem to mask her symptoms when external people visited, they could not understand what we were explaining about the level of delirium we were navigating and the insomnia she was experiencing and in turn us not sleeping.
I just do not know what to do, my mum's finances are quite messy, I've been trying to work through things but caring for her has taken a lot of my capacity. I got a scholarship to continue my studies in 2020 and had to pause my studies last year, due to not sleeping and in hindsight the challenges of caring for my mum. In the last year I have gained over three stone, I was told that I am pre-diabetic, my blood pressure has gone up, my partner's gained weight and their blood pressure had gone up and my aunt's blood pressure has been so out of control when she supports my mum that we just had to stop involving her. It is so difficult because for a few months after my mum had surgery in January her health really improved and we had space to work on our health collectively. Though she managed to get into the kitchen in April, drank three quarters of a bottle of sherry and lots of sugary things and it them seemed to trigger a uti. I should mention that whilst our health has been a mess, my mum's weight came down considerably, she came of her cholesterol statin and her blood sugar was managed in the pre-diabetes level with her metformin on course to be stopped.
Since going into hospital she has gained almost 10kg, her blood sugar has doubled, her incontinence has become so much worse, she has been taken of all sleep and medication as has been on olanzapine (for two months) and her normal donepozil, with the recent addition of memantine. My mum tested positive for covid a few weeks ago, so we could not visit for a few weeks. When I saw her this week, her posture had completely changed, her neck was very haunched and she was struggling to lift her head and sometimes even opening her eyes until lots of encouragement, plus complaining of neck pain which is rare for my mum to ever say when it comes to pain. The consultant took her of the olanzapine and memantine three days ago, to see how her neck improves.
I am at a loss of what to do, I have always intended to have my mum back home with me and to care for her; though I also need to move us to London and prepare for restarting my studies in a few months and to be able to work after this. The hospital have spoken to me about 117 aftercare, which the consultant felt could help with at home care. Though we had a meeting a few weeks ago and the social worker was very abrupt in saying that if the care was too expensive, a home may be the only thing offered. I am not sure yet because I simply do not know what is being offered. I have spent the last ten days trying to come terms with a home as an option and to research and understand what is best for my mum and how I can best position myself to support her long-term.
Some of the homes I had contacted before she went into hospital, had a very different tone when I contacted them and explained the situation and 117 care, though one does accept 117 funding. I am really nervous of her coming home as she is not sleeping throughout the night now and I understand at night she is soiling around the ward sometimes every 15 minutes, which I do thing is due to a uti as when she did not have a uti a few months ago at home all incontinence had stopped. I am so afraid of her coming home and then being incorrect about her baseline and the infection I believe she has, then being in a situation where it is too late to receive support.
Her care is so complicated because the hospital believes she has a bladder prolapse but also have not treated her for a uti either; she also would not allow any iv's as she was taking them out. My mum does not easily accept personal care from anyone but me, her medication has had to be given covertly and when she has had incontinence difficulties has become aggressive with staff; actually biting once staff member who almost had to go to a&e. It took five staff members and myself to take bloods for example. Throughout her time at hospital, I have been going in and supporting with personal care though this ward has been much better.
I feel so exhausted, I have been fighting non-stop for her to get the care she needs at the hospital and I just do not have it in me right now to argue. They are downplaying her positive uti result today, this is the fifth test. This consultant has been very helpful and the staff seem so much more caring here, maybe this is why I have stepped back a bit.
I feel terrible about considering a home, I do not even know how easy it will be to find a home that can really support her and how payments would work. Does anyone here have experience with continuing care or a nursing care fund, which her Mental Health Advocate from Mind mentioned?
Does anyone know if it is really the hospital social worker who decides what support my mum will receive please? We unfortunately did not get a very positive vibe from him. Though the consultant said today that the team feels that my mum needs 24 hour care and they would support me with the decision for my mum to go to a home or return home.
I am just tired, trying to catch up with work I was not able to complete for the last two years and wading through a mountain of paperwork. My Aunt just does not seem to understand how hard it has been, for almost a year my partner and I really stopped brushing our teeth because my mum became possessive of the bathroom and we kept finding faeces around the bathroom and were getting uti's ourself. Once of my molars cracked recently and the dentist saw a decline in my dental care. I have been trying to explain to my Aunt how overwhelmed and exhausted I feel, she was also a nurse and has been un-empathetic to how much we have been struggling despite not being able to cope with my mum herself.
I don't know if to give up my career as an Architect, my relationship and just move somewhere with my mum and care for her the best I can. If to try bringing her home knowing that it may mean minimal care support or to move forward with a home. I don't really understand the process, I understand that the social worker would decide on options.
I am beginning to fear going to visit my mum in hospital, it is so heart breaking to see what she is like when I get there. I usually stay for 3/4 hours, play music for her, assist her with a shower, we cuddle allot and she'll usually perk up and start humming and then have a little dance with me to the calypso music I am playing for her. I hate leaving her, I find it so hard to get back into the rhythm of life. Really I think I have not been for a few days because I feel so guilty, even considering the option of a home.
I called some homes and asked about if it would be possible to arrange visits on weekend, where she stayed at home with us regularly. I am struggling so much with all of these decisions and feeling like I am failing my mum.
Sorry for such a long message, I think I just need to vent. Any thoughts and experiences would be greatly appreciated.
Thank you,
Ven
I hope it is okay to post what is maybe more of a venting post. My heart is breaking for my mum and for the first time in my life, I feel so exhausted and useless. My mum was a single parent, she came the UK at 18 to do nursing within the windrush generation and has been the matriarch of the family. My mum is 67 and was diagnosed with early onset Alzheimers coming up four years ago, I am her only child and my mum's sister also lives nearby; we are a very small family unit.
My mum is at Millview a psychiatric hospital, within a dementia ward. She has been in hospital for almost three months now and has been under a section 3 for several weeks. The hospitals have lost four uti cultures for my mum; I actually arranged a private culture whilst she was in the county hospital. Though she was refusing her medication, so has not been properly treated for a low level uti, which is why she went into hospital, though this started almost four months ago. She was admitted because she had been vomiting her medication and everything actually, for almost three weeks and only keeping things done with a antiemetic injection from the paramedics.
I have been caring for my mother full-time since she was diagnosed with Alzheimers, though last year her health really started to deteriorating due to covid and the difficulties we faced in accessing dental care for her. She had two abscess' for over a year, which I did not know she had for a long-time and when we realised she was in pain, it took almost six months to arrange two minor surgeries.
It has been the most intense two years, I think my mum has had almost twenty uti's and antibiotic treatments. Because of covid we avoided the hospital at all costs, really at the detriment of our health and now I understand my mum's health. We just were not being told how to access adequate treatment for her, I think because my mum would seem to mask her symptoms when external people visited, they could not understand what we were explaining about the level of delirium we were navigating and the insomnia she was experiencing and in turn us not sleeping.
I just do not know what to do, my mum's finances are quite messy, I've been trying to work through things but caring for her has taken a lot of my capacity. I got a scholarship to continue my studies in 2020 and had to pause my studies last year, due to not sleeping and in hindsight the challenges of caring for my mum. In the last year I have gained over three stone, I was told that I am pre-diabetic, my blood pressure has gone up, my partner's gained weight and their blood pressure had gone up and my aunt's blood pressure has been so out of control when she supports my mum that we just had to stop involving her. It is so difficult because for a few months after my mum had surgery in January her health really improved and we had space to work on our health collectively. Though she managed to get into the kitchen in April, drank three quarters of a bottle of sherry and lots of sugary things and it them seemed to trigger a uti. I should mention that whilst our health has been a mess, my mum's weight came down considerably, she came of her cholesterol statin and her blood sugar was managed in the pre-diabetes level with her metformin on course to be stopped.
Since going into hospital she has gained almost 10kg, her blood sugar has doubled, her incontinence has become so much worse, she has been taken of all sleep and medication as has been on olanzapine (for two months) and her normal donepozil, with the recent addition of memantine. My mum tested positive for covid a few weeks ago, so we could not visit for a few weeks. When I saw her this week, her posture had completely changed, her neck was very haunched and she was struggling to lift her head and sometimes even opening her eyes until lots of encouragement, plus complaining of neck pain which is rare for my mum to ever say when it comes to pain. The consultant took her of the olanzapine and memantine three days ago, to see how her neck improves.
I am at a loss of what to do, I have always intended to have my mum back home with me and to care for her; though I also need to move us to London and prepare for restarting my studies in a few months and to be able to work after this. The hospital have spoken to me about 117 aftercare, which the consultant felt could help with at home care. Though we had a meeting a few weeks ago and the social worker was very abrupt in saying that if the care was too expensive, a home may be the only thing offered. I am not sure yet because I simply do not know what is being offered. I have spent the last ten days trying to come terms with a home as an option and to research and understand what is best for my mum and how I can best position myself to support her long-term.
Some of the homes I had contacted before she went into hospital, had a very different tone when I contacted them and explained the situation and 117 care, though one does accept 117 funding. I am really nervous of her coming home as she is not sleeping throughout the night now and I understand at night she is soiling around the ward sometimes every 15 minutes, which I do thing is due to a uti as when she did not have a uti a few months ago at home all incontinence had stopped. I am so afraid of her coming home and then being incorrect about her baseline and the infection I believe she has, then being in a situation where it is too late to receive support.
Her care is so complicated because the hospital believes she has a bladder prolapse but also have not treated her for a uti either; she also would not allow any iv's as she was taking them out. My mum does not easily accept personal care from anyone but me, her medication has had to be given covertly and when she has had incontinence difficulties has become aggressive with staff; actually biting once staff member who almost had to go to a&e. It took five staff members and myself to take bloods for example. Throughout her time at hospital, I have been going in and supporting with personal care though this ward has been much better.
I feel so exhausted, I have been fighting non-stop for her to get the care she needs at the hospital and I just do not have it in me right now to argue. They are downplaying her positive uti result today, this is the fifth test. This consultant has been very helpful and the staff seem so much more caring here, maybe this is why I have stepped back a bit.
I feel terrible about considering a home, I do not even know how easy it will be to find a home that can really support her and how payments would work. Does anyone here have experience with continuing care or a nursing care fund, which her Mental Health Advocate from Mind mentioned?
Does anyone know if it is really the hospital social worker who decides what support my mum will receive please? We unfortunately did not get a very positive vibe from him. Though the consultant said today that the team feels that my mum needs 24 hour care and they would support me with the decision for my mum to go to a home or return home.
I am just tired, trying to catch up with work I was not able to complete for the last two years and wading through a mountain of paperwork. My Aunt just does not seem to understand how hard it has been, for almost a year my partner and I really stopped brushing our teeth because my mum became possessive of the bathroom and we kept finding faeces around the bathroom and were getting uti's ourself. Once of my molars cracked recently and the dentist saw a decline in my dental care. I have been trying to explain to my Aunt how overwhelmed and exhausted I feel, she was also a nurse and has been un-empathetic to how much we have been struggling despite not being able to cope with my mum herself.
I don't know if to give up my career as an Architect, my relationship and just move somewhere with my mum and care for her the best I can. If to try bringing her home knowing that it may mean minimal care support or to move forward with a home. I don't really understand the process, I understand that the social worker would decide on options.
I am beginning to fear going to visit my mum in hospital, it is so heart breaking to see what she is like when I get there. I usually stay for 3/4 hours, play music for her, assist her with a shower, we cuddle allot and she'll usually perk up and start humming and then have a little dance with me to the calypso music I am playing for her. I hate leaving her, I find it so hard to get back into the rhythm of life. Really I think I have not been for a few days because I feel so guilty, even considering the option of a home.
I called some homes and asked about if it would be possible to arrange visits on weekend, where she stayed at home with us regularly. I am struggling so much with all of these decisions and feeling like I am failing my mum.
Sorry for such a long message, I think I just need to vent. Any thoughts and experiences would be greatly appreciated.
Thank you,
Ven
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