The situation for someone living on their own

[JenniferW]

I've just read the article in the latest copy of 'Living with Dementia' about Alex Burton, about the problems for someone with Alzheimer's who's living on their own. There were all sorts of points in the article that I realise apply to my 90-year-old mother, who lives on her own in her own house, and has always said that's how she wanted to live out her life.

At present my sister and I manage the upkeep and maintenance of her house and large garden, we do all her shopping, etc, we do some sort of daily check on her, but we as we're both ourselves pensioners, we wonder how much longer we can keep this up, and how much of our own remaining years we want to give over to her care needs.

Apart from a 6-monthly check on her medication at the local memory clinic, she has no contact with the health service or social services. There seem to be no systems of any sort for anyone to check on the situation and monitor it. No-one talks seriously with my mother about Alzheimer's symptoms, how her needs will change, and the implications for her current situation. One of us takes her to the hospital clinic appointment every 6 months, but you wonder, if she didn't turn up for one of those, how long would it be before there was any response to that?

 

[SWMBO1950]

My mothe (98) lives in sheltered accommodation and has private carers and myself to keep any eye on her.

We are not monitored by SS either as I consider I know better than anyone what she needs (she has age related dementia).

As I have said many times before my aim is to allow her to stay in her own home and surroundings - where she is happy - until she is ready to join my father.

However I do appreciate this situation is not possible for many and for those people the 'establishment' do not always work for the good of the person who needs the help (just my opinion)

I've just read the article in the latest copy of 'Living with Dementia' about Alex Burton, about the problems for someone with Alzheimer's who's living on their own. There were all sorts of points in the article that I realise apply to my 90-year-old mother, who lives on her own in her own house, and has always said that's how she wanted to live out her life.

At present my sister and I manage the upkeep and maintenance of her house and large garden, we do all her shopping, etc, we do some sort of daily check on her, but we as we're both ourselves pensioners, we wonder how much longer we can keep this up, and how much of our own remaining years we want to give over to her care needs.

Apart from a 6-monthly check on her medication at the local memory clinic, she has no contact with the health service or social services. There seem to be no systems of any sort for anyone to check on the situation and monitor it. No-one talks seriously with my mother about Alzheimer's symptoms, how her needs will change, and the implications for her current situation. One of us takes her to the hospital clinic appointment every 6 months, but you wonder, if she didn't turn up for one of those, how long would it be before there was any response to that?

 

[Chemmy]

Hello Jennifer

I wonder if it's worth getting some help in before it's really needed? I'm thinking of a gardener and perhaps a cleaner, just to get your mum used to having someone else around and to act as a back up in case you or your sister are not in a position to see to her for some reason.

You (as carers) and your mum are entitled to separate community care assessments

It might put you back on the radar, even if you don't go along with the recommendations.

 

[Anongirl]

Hi JenniferW! I tend to agree with Chemmy. It's probably a good idea to get an assessment for your mum, you and your sister.

My mum also lives alone and I took the advice of the memory clinic to seek help for us through SS because I can't be there to assist my mum regularly. We had an assessment and now someone bobs in in the morning and in the evening to help her take her medication. This helps in a few ways: It takes any anxiety away from mum that she is taking the correct tablets, it takes anxiety away from me because I know someone has seen her and knows she's ok, it gets mum used to the carer for when she might need a little more help (she was against this at first but now accepts it and likes the ladies who come).

It can be exhausting having the responsibility for someone else but there is help out there and it just might help all your quality of life.

Good luck X

 

[JenniferW]

Responsibility - and management

I think the big issue for us is responsibility and management of the whole situation.

We organised someone coming in once a week from a private care agency, to help with cleaning after my mother had a fall and accepted she was finding hoovering the stairs a bit difficult! We started this maybe a year ago, to help my mother get used to having someone coming into her house regularly. It works, but it's not without problems. We still have to organise and direct what the carer actually does as my mother's very good at saying something doesn't need doing or that she can do that herself - and the carers believe her!

We had a gardener the year before this and gave it up because it became a situation with a lot of hostility and agitation - someone in her garden was a worst possible scenario for my mother, we realised. I thought the gardener in question was superb - both as regards gardening and with reading the situation with my mother. She still talks very negatively about those sessions, so we're wary of trying to repeat that - though as the jungle of brambles grows ever larger, maybe we'll have to.

What we could do with is a care manager, not carers, someone who really takes on board my mother's priorities in life as well as her needs. We could do with a professional to advise us and bounce ideas off - and for some practical suggestions. I've tried to talk with the community nurses who see her for the memory clinic checks about this and get a definite brushing off each time - it's not their responsibility, etc, talk to the GP, talk to Alzheimer's Society!

But on top of that is the reality that we're not a family who're at all close. If my mother didn't have Alzheimer's we'd all happily be getting on with our lives only making contact occasionally. Instead, we're forced into seeing a lot more of each other than any of us is really comfortable with, and for reasons which are far from rewarding for any of us!

 

[Salli]

Similar situation for me, with mum living alone and a weekly visit from me. She has always been quite difficult – stubborn and never wrong and we are not close. What I did is liaise with manager of agency who was good enough to come round and discuss what needed doing each week and format a tick list of jobs. Any agency should have a manager who would take on this role, as it's not really down to the carers. Mum does her best to sidetrack them – “have a sit-down, have a coffee, help me with crossword “etc. Her favourite one is “oh, leave that, it can be done later”. The agency is pretty good and the occasional phone call from me re-establishes the list when I notice things slipping. We are on to the third gardener – lots of trial and error, and it's taken nine months to find this one. I organized shower via different agency, and also found hairdresser, chiropodist and a 'befriender', as well as food deliveries and shopping. Being a bit of a control freak, I thought I could sort her life out, but the dementia has won (which, of course, it always will).

What I would say, is don't leave it too long before getting Social Services involved as the above arrangements have reached end of shelf life for us both. Things have taken a downward turn this past fortnight with more falls, police involvement and chaos surrounding most aspects of her life and now Social Services are doing an assessment of needs. The relief that some of the responsibility is being shared is tremendous. I had no idea how much sorting her life – care, food, finances, safety, health etc. had affected me till the cavalry arrived, and I think, with hindsight, I should have pressed for their involvement sooner.

 

[JenniferW]

Thank you!

Salli - Your reply's really helpful because it describes a very similar situation.

I'd not really thought of going back to the manager of the care agency we get the carer from on one morning each week - sounds obvious, but I'd just not thought of talking more with her, even though I was very impressed when we met to set up that one session.

We've got a memory clinic appointment coming up, so I'll raise a social services assessment with the nurses, and then make arrangements for that to happen.

And you encourage me to try again with another gardener