Advice on future planning for my mum.

[Talkinghead]

My mum was diagnosed a couple of years ago with mixed dementia. She seems to be going down hill quite quickly, and we’re looking at registering POA with bank re finances. She finds it hard to have a simple conversation, or recognise who people are (apart from family). In short, I feel I need to accept things will get worse, and plan for the future.
She lives 30 miles from me and I am her only family in Scotland. So would anyone recommend getting her a flat near me? I can’t really move as am single mum to 3 kids who are at school, and I work 30 hours a week.
She is managing at home, which is neat and tidy. However, don’t think she is eating too well.
My brother in New York, and I were thinking it might be about time to try to get her a little help in her own home, so she gets used to this idea when she needs it. She did have a lady who cleaned and also looked after older people.
Could she get carers- of the type just to pop in for 10 minutes a couple of times a day to check on her?
I’m kind of on my own dealing with all this, so any advice appreciated.

 

[AwayWithTheFairies]

I only know what I’ve read on here, but I am gathering that by the time you manage to sort out this plan, you may find the goalposts have moved. Might be an idea to consider moving her to a care facility near you, not a flat - if I had 3 kids and a job and no one else to take some of the strain, I would quickly overwhelmed with mum on top of what you are already coping with.

 

[MartinWL]

You certainly could arrange carers, if this can be paid for. If the carers would have to be has to be publicly funded the local authority will have to assess her needs and agree to fund it. If you're paying with your mother's money for care just go ahead and find a care company. I recommend a written list of carer duties otherwise they may just chat and go!

 

[Talkinghead]

Thanks everyone. I’m in Scotland, so don’t know if getting carers or sheltered housing is a bit different.

 

[Shedrech]

hi @Talkinghead
the Alzheimer's Scotland site may have helpful info

Living with dementia | Alzheimer Scotland

From getting a diagnosis, to getting support, to end of life, this section includes information and advice for anyone living with dementia, worried about their memory or caring for someone with dementia.

www.alzscot.org

 

[Ramblingrose]

At least have a try at putting the wheels in motion. I am up against my father who refuses to listen to anything I suggest. MY mother has deteriorated so much that she can't be left for more than about 10 minutes. I pleaded with them to move to some kind of sheltered accommodation or assisted living but NO. I cover the care package such as it is and I am stressed out with it all. Please think about your own life too.

 

[Talkinghead]

I only know what I’ve read on here, but I am gathering that by the time you manage to sort out this plan, you may find the goalposts have moved. Might be an idea to consider moving her to a care facility near you, not a flat - if I had 3 kids and a job and no one else to take some of the strain, I would quickly overwhelmed with mum on top of what you are already coping with.

 

[Talkinghead]

Thank you, you are more understanding than my own brother and my mum’s sister.

 

[margherita]

Thank you, you are more understanding than my own brother and my mum’s sister.

Hi @Talkinghead ,
It's only a waste of time and energy trying to get understanding from those who are not involved in the situation . It's easy for them to say what should or shouldn't be done.

 

[Bettysue]

I can only tell you if my experience as I live in Scotland. When my partner was diagnosed we had a visit from a CPN (community psychiatric nurse) . She had previously done his tests at the memory clinic. I believe there is a statuary requirement that there is support after diagnosis. She then referred him for a space at day care. I also had direct contact from social work after he did a night time walkabout and I had to call the police. All of this has resulted in 2 days at day care, help with showering several days a week and a carer who babysits for a couple of hours. This is all funded by social work. I have the view that if you don’t ask you don’t get! I’d get in touch with GP/memory clinic /social work and put your case for support very strongly.

 

[Izzy]

I’m in Scotland too. I know that people who are newly diagnosed here are entitled to one year’s post diagnostic support. If your mum had that then the person who provided it might be a good contact for accessing more support. I would contact the social work care manager and ask for a reassessment of your mum’s needs. We have free personal care in Scotland so it’s important to make sure your mum is getting what she is entitled to. Shedrech gave you the Alzheimer Scotland link earlier - someone on the helpline there should be able to advise you. Their line is open 24/7. This is the link again -

24 hour Freephone Dementia Helpline | Alzheimer Scotland

Emotional support and signposting advice, available 24 hours, everyday of the year.

www.alzscot.org

 

[heatherj]

I would say that the first thing you need to do is get power of attorney sorted. Urgently. You may not need to use it for a while, but by the time you do need it, it might be too late to get mum to know and understand what she is signing.

I am in a similar situation to yourself but without the children. My mum has Alzheimers and lives alone, 250 miles away from me. At the start of the first lockdown we were probably about where you are now, but lockdown has not been kind to people with dementia. We felt that she needed carers, and as your brother suggested, we planned to get them in the door for the occasional visit hoping that it would then be easier to increase the visits as needed. We used her isolation in lockdown to argue the case for that. We now have carers going in daily, some days twice, and soon to increase further. Although we did this through social services, it is currently fully funded by mum, but as her care needs go up and her savings go down I anticipate that they will make a contribution to the cost. The right care agency is vital. I am in the process of changing after a year. The carers are a pretty mixed bunch, some very very good. But the company is not capable of managing ....................... well very much at all really. It is my perception that they take on more work than they have the staff to deal with, meaning they have no resilience to deal with things like staff sickness, carers cars breaking down, and end of year accumulation of annual leave that needs to be taken. We regularly have missed calls. To be fair not meal calls, but social calls. Averages at 7 or 8 a month, which I think is woeful. If you can, get recommendations from people who have actually used carers in her area. And check the CQC ratings (but also bearing in mind that the CQC rating was based on one visit, and may have been a couple of years ago, so things may have changed).

I would agree with what has been said about getting her a flat. By the time you have gone through all of that, you might find she is in it only a short amount of time before her need is greater and she has to move again. Moving is very disruptive for someone with dementia for whom familiarity is a massive issue.

Only other suggestion that I have is to try and explore what might be available locally. There are dementia groups, lunch clubs etc. We worked hard trying to get my mum into something like this. Although she moaned non stop about how bored and lonely she was, she was also very reluctant to try anything new, but we did get her going to a dementia group run by the local church which she absolutely loved. It stopped during lockdown and she can't wait for it to start up again. Social services may have information on this sort of thing, or alternately try Age UK. I find that their services vary massively depending on the location. Unfortunately Age UK in my area is much much better than it is where mum lives, but they are a great source of information. And there are also sometimes community drivers who are like volunteer taxi drivers, but who will be aware of her issues and would not leave her without making sure that she is safely wherever she is going.

Good luck.