My mum has been struggling with her memory for the last 6 years and has been having regular assessments with the Adult Mental Health Services (Memory clinic). Last year, she was diagnosed with Bowel Cancer and had to have an operation and subsequent hospital stay which worsened her confusion, certainly while in hospital. Due to a family dispute between my brother and I, neither of us had LPA. Hospital made her a subject of DOLS whilst under their care. Social services subsequently recommended that she be allowed to go home, as was her wish, and mine whilst she came to terms with living with a Stoma bag as this was a new skill and had Local Authority carers who visited her at home x 2 a day to monitor Stoma Care plus medication. After 8 weeks, I was advised she was being signed off and I should find private carers to take on this role which I did and all seemed fairly good. I got on with speaking to the memory clinic about assessing her capacity so I could achieve LPA in line with her wishes and to avoid further family disputes as my brother and Aunt and Uncle all were actively, and vocally against her coming home. This was granted to me. I noticed that my mum was having some problems with her personal care (Stoma) forgetting the step of sticking this down properly and occasionally forgetting to but used Stoma bag inside a disposal back but left on her bathroom cabinet not in the bin she has provided. I have instructed the carers to reinforce this practice with her as I do and she has a cleaner who works for the same caring service so familiar with this type of old age issue. My problem is i live a three hour train journey away from her and work full time although I attend all appointments with her as even although my sibling lives 15 mins drive away, he usually only visits her home 1 -2 times a month maximum and stays for up to 45 mins. He does not take her out anywhere for a change of scene or to his home. When I was at her home I found an appointment care for a Stoma appointment, and when I called them I was told it was a follow up appointment that my Aunty had taken her to. She had presented my mum to them and said she wasn't coping and was getting worse. I explained i have Health and Wellbeing LPA and was aware there was an issue that i was doing my best to support my mum with, with the help of her carers. I feel it was inappropriate for my Aunty to take this course of action without any legal responsibility for my mum when I am doing all I can. Typically attending appointments with her for various things so seeing her at least once a week. My mum is best in her own environment, in terms of her confusion and wellbeing as evidenced by her being in hospital and becoming totally disorientated. My question is, where do I go from here and how do you decide whether you should consider putting someone with these type of issues into a care home. I don't want to do more harm to her that good. Memory clinic are arranging a visit for her to be assessed at home, but I wondered how other people made that decision on their own, without family support as relations have completely broken down between me and my brother/aunty/uncle as they have been pressurising for my mum to go into sheltered accommodation for the last 6 years, getting increasingly nasty as they became frustrated. I should add I am engaging with all the advise and health care professionals i can and I do have the support of other family members. This issue has split my family in the middle. i can see further divisions in the future as I am considering care homes in my local area as i am the person who visits the most/closest to my mum and the only person who doesn't drive.
Mum Recently diagnosed with Alzheimers. What next...
- Thread starter Frank24
- Start date
Hello Frank and welcome.
Your mum's got a lot to cope with. I have to say, learning to cope with a stoma if your mum's six years into Alzheimer's disease - I don't think it's going to go well, to be honest. If you are keen to keep your mum at home for as long as possible, it may be that she will need more than two Care visits a day. How does your mum cope during the night? Does she sleep ok?
I suppose to my mind, the time for thinking about full time Care would be when either the level of care needed was more than could be provided at home (and I would include in that things like stimulation, company etc for the person, as isolation can be very detrimental for a person with dementia), or there were safety concerns - the person was going out at night, getting lost, or letting strangers in, turning on the cooker or heaters and forgetting them, etc.
Why do you think your aunt and brother are so keen for your mum to go into sheltered accommodation?
Your mum's got a lot to cope with. I have to say, learning to cope with a stoma if your mum's six years into Alzheimer's disease - I don't think it's going to go well, to be honest. If you are keen to keep your mum at home for as long as possible, it may be that she will need more than two Care visits a day. How does your mum cope during the night? Does she sleep ok?
I suppose to my mind, the time for thinking about full time Care would be when either the level of care needed was more than could be provided at home (and I would include in that things like stimulation, company etc for the person, as isolation can be very detrimental for a person with dementia), or there were safety concerns - the person was going out at night, getting lost, or letting strangers in, turning on the cooker or heaters and forgetting them, etc.
Why do you think your aunt and brother are so keen for your mum to go into sheltered accommodation?
Thanks for your response. My mum has been suffering with her memory for the last 6 years but recently diagnosed - and this has been a situation that has been monitored by the memory clinic so has been a deterioration and some of the last 6 years my mum has coped really well.
6 years ago she had a fall at home, and broke her leg, hip and arm and it was on discharge from hospital that my brother & Aunty and Uncle first started their campaign for my mum to move into sheltered accommodation. At this time, it really wasn't required, but due to issues we anticipated with her mobility, my other Aunt (my mum's sister who is now sadly deceased having lost her own battle with cancer) and I looked at several flats that we thought might be suitable. All of these were vetoed by them at the time for not being "suitable" read too expensive... My mother owns her own home, and my brother and his wife wanted to purchase her home at a discount but she would have needed full market value of the house in order to purchase the options that we looked at. In the end, my mum recovered her mobility remarkably well with family support and has had many years living happily in her own home. Over the years I have come to the conclusion they favour this option as it would be guilt free for them as they don't visit her very often apart from when she was in hospital when they visited every single day, mostly I felt at the time to chart her decline and try and push their own agenda. My mum was discharged from hospital over six months ago and was coping with Stoma well so this is a bit of a slide. Despite advocating this as a plan of action, they have never looked at any options or presented me with any real research. Currently I am supporting my mum with her weekly shop (Ocado) over seeing her care needs and liasing with the care service as well as applying for LPA, seeking a diagnosis. Cleaning my mums home when I am there. I do worry about her being isolated as there is a limit on what I can do from where I am but I think she would struggle to get any benefit at this stage meeting new people. The memory clinic have advised she go to their club, waiting to find out from them details of this, but I feel she will be against this in principle.
I should add she sleeps well during the night and is generally cheerful in her own home and not distressed
So all in all, with support, she's doing ok at home for now? So, maybe, see what the Assessment says. Full time care is usually only after other options have been ruled out, so is there an option to increase the Care visits? And even if she's reluctant, I think the Club or a Day Centre would be a good idea.
The other thing is of course that if the day comes for full time care, your mum, having a house to sell, would be self funding? Therefore, no matter who is buying the house, she will need full market value. Otherwise, it might be viewed as deprivation of assets.
Doing OK at home - ish. Has good days but some bad days too. So yes I am researching local options to me at the moment, and thinking I would prefer to see what the assessment says rather than listening to what others think. I have just upped the time that the carers spend with her considerably and I think another visit in the middle of the day might make my mum feel restricted. She likes to go to town, which she still can do on her own as it is a familiar route that she has been doing for many years. I have also at the insistence of my Aunty via my brother employed a cleaner via the care service but as mum has always been reluctant to have someone in, I'll have to see how this goes. I haven't told her (as she will be reluctant and either refuse or forget anyway!) so I am hoping that once this is in place she will just get used to it. I would love her to go to the day centre but do feel she will resist.
My mum would be self funding. My brother has since moved on with purchasing another house and as i have LPA over financial I wouldn't allow him to purchase it at a knock down price now anyway. One thing I am also wondering how to get advise on... if I decided that my mum's needs were best met long term by being in a care home local to me, and that was more expensive on a weekly basis would the council consider that a deprivation of assets? My mum is based in Wales and I am in England.
If your mum is self funding it’s unlikely that any LA will care where she lives. It will be up to you to decide in her best interest for her care.
I moved my mum from the southwest to Kent, it’s near me, no family disagreement, no LA involved.
The only problem will be if you need bridging funding.
Thanks for
Thanks for your reply - I have arranged to have financial advice from SOLLA's to help me plan.
