help! Mum needs more care and I don't know where to turn

[gillyb1]

Hi,

I haven't posted here before and although I read the threads my apologies if these are questions that have been asked and answered before. My Mum is 69 and has had Alzheimers for about four years (diagnosed) and a good many years before that undiagnosed. She lives with my Dad who struggles to cope. She has taken to making lots of GP appointments. I notice elsewhere on the forum, people had the opposite problem of not being able to get their LO to go to the doctor or accept their condition. Mum on the other hand, makes appointments, can't remember them, gets taken by me or my brother (we get texts from the surgery) and can't remember why she needed the appointment - the GP asks her how she is and she says, tired but fine. My question is, have people/families/surgeries found a way to avoid unneeded appointments? If we didn't get the text reminder she would be none the wiser that she had even made the appointment. We have a power of attourney but we don't want to use it yet as she can still make decisions for herself.
My next question is whether anyone uses a full-time day carer and how that has worked out. Mum is wandering, doesn't have great road safety skills anymore, can be occasionally aggressive (not physically) to relatives, forgets where / why she is going/how to get there etc. We spend a lot of time worrying about her, looking for her and tracking down lost possessions - or not. But she is a really social person and we want to keep her out of residential care as long as possible so that she still gets out and about as much as she can. Is a daytime care centre a good option - do people wander off from them? She has not got a carer because she is privately funded and that has become an obstacle to my parents getting help. But I think my Dad is at the point of recognising something has to change and we want to make the right decision first time so that it's a smooth transition.
Apologies for the long post, any advice very gratefully received.

 

[elvismad]

My mum is also social and we wanted to enable her to continue to be so and arranged for a private carer to accompany her to clubs 3 times a week. This has worked well for several years but now mum is pretty much only going to weekly SFTB and Monthly Coffee club run by the AS. You could also get in touch with Contact the Elderly - mum enjoyed their monthly afternoon teas for a number of years and has only recently stopped attending as she is now become more confused and distressed.

 

[Tin]

You need to activate PofA. She may be making her own decisions, but they may not be the right ones. No shame in approaching Social Services, even if self funding, they will point you in the right direction for day care activities, clubs etc. and she will get a social worker. See if there is an Admiral Nurse in your area - Social Service or gp will tell you this. Might be a good idea to come to some arrangement with gp surgery that they call you whenever your mother makes an appointment, to discuss your mother's medical issues with surgery, you will need a letter signed by your mother giving medical professions permission to talk to you, photocopy this and keep some on file and send one to surgery..

 

[nae sporran]

A belated welcome to TP, Gillyb1. Sorry your mum's condition is deteriorating to the stage where she is not really safe to be out on her own. That is very stressful for you and your family.
On the practical side of your questions, have you considered extra care housing ? Your parents would have their own flat, but there are carers on site all day, so should be someone monitoring the exits in case your mum wanders off. It's not always as great as that, but would give you some assurance if you find the right place.
My OH goes to day centre one day a week and has a befriender from an agency who takes her out one day a week. Both are dementia trained and she is always safe.
I have POA, but don't use it either. I do make the appointments for my OH and when the doc asks here what is wrong she does look at me and I just say what I was worried about and leave to doc to investigate that. You may have tried that, in which case ignore me.

 

[Beate]

Full-Time day carers are incredibly expensive, a day care centre however should be affordable. If you choose one with emphasis on dementia, doors are usually locked so people can't just wander off. There will be activities, a hot lunch and tea and biscuits. OH went to his for years and absolutely loved it.

Gave you ever had a needs assessment and a carers assessment for yourself! Self-funding or not, you're entitled to one by law.

 

[gillyb1]

Thank you everyone, that is great advice that I will definitely follow up. There are things mentioned here I don't think we have in our area, it does seem that services are patchy depending on where you are. But also, I may not just have found that key person who could tell us what's available. Mum had a needs assessment early on but I think she may need another and thanks for the suggestion about Dad (and us!) checking if we need help too. Dad could do with some respite, it's hard for him.
On the question of GP visits, I don't know how the POA would work, ie if she called and made an appointment the surgery wouldn't be able to say no would they - and she would get upset if they did. But she makes appointments once or twice a week and that's not great for the surgery and doesn't help her either...

 

[Norfolk Cherry]

We got into conversation recently with a gentleman whose wife was in the same situation. He'd eventually moved her into a care home and himself into an apartment with a warden nearby. He visited everyday and said it was working really well.

 

[Mumsmum]

Hi, my mum constantly made doctors appointments, sometimes more than one a day, wasn’t ill, often said the doctor had made the appointment, and just forgot to go or went and sat confused about why she was there. I contacted the doctors and told them to call me or hubby every time mum made an appointment and we’d tell them if the appointment was needed or tell them to cancel. It’s worked well to date. Mum goes to a local elderly club 3 days a week now, 2 are dementia clubs, with one on one care which mum loves. She’s no idea she has dementia she just enjoys the company. Another day we pay for a companion care who takes mum out. It isn’t cheap but mum is happy and safe and entertained and all of these activities gives hubby a rest as he is her Carer. Just knowing you have 2-3 hours without checking what she’s up to and where is such a relief.

 

[nae sporran]

You said you don't know what help is available in your area, Gillyb. Perhaps this will help you https://www.alzheimers.org.uk/find-support-near-you.
https://carers.org/ may be of use too.

 

[Sirena]

Re the doctors appointments, as the other poster said, ask the GP surgery to always call you after she has made an appointment so that you can confirm whether or not it is necessary. I am sure they will be happy to do that, as they won't want to waste an appointment. You could ask them to email you if that would be easier - my mother's GP receptionist used to do that for me. As your mother forgets she has made the appointment that should work fine - she won't be expecting to go.

If you want to engage a self-funded carer you can do that yourself. I found my mother's carers (before she went into a care home) by googling her location and 'care at home'. It cost £22 an hour weekdays, £24 an hour weekends.

You say you don't want her to go into a care home because she's very sociable - but good care homes can be very sociable places. My mother loves being constantly around lots of people, and having activities laid on. She went there partly because she started wandering. So when/if the time comes, you may find your mother gets on well in a care home.