At end of tether

[breakingpoint]

Hi everyone. It's been so good to find this forum. Feeling at the end of my tether. Spent the last week backwards and forwards to hospital after Mum admitted with stomach problems and dehydration. Hospital discharged her day before Christmas Eve to a lovely, local care home as unable to return home straight away. We told her we thought it would be a good idea for her to have at least a week or two there to recover but hoped she might realise its better for her. In hospital she said she didn't want to go home and be on her own as she'd got used to having people around her. However she is now quite cross and says she's wants to go home at the end of the week. She wont get involved in any of the activities or try to make friends there and seems determined to be as miserableas possible. We made her room look lovely, putting Christmas cards up and familiar items around the room. She took it all down and packed it away jn her suitcase.
At home she has had carers going in for one hour a day on weekdays and she says she doesn't want this to be increased. My worries are that she is quite wobbly and has stairs. She also gets very muddled and has very poor short term memory. She also panics when she gets letters in the post or when she gets phone calls from people she doesn't recognise. I've explained my concerns but she says I'm just being very negative. I think she has mental capacity to decide where she lives but I think she's making an really unwise decisionto go home.
If she goes home we will have to continue supporting her (as we have done for at least 4 years) but she needs more and more support with meds, finances, shopping, daily admin, medical appointments, daily phone calls, taking her out at the weekend, etc. My husband and I both work full-time in very demanding jobs and I've explained that there's a limit to what we can do. We're exhausted! My brother lives abroad and there's no one else we can rely on for support. I'm at the end of my tether. Any ideas/advice gratefully received.

 

[Violet Jane]

Unfortunately, only you can change things. If you don’t you will end up doing more and more as your mother lacks insight and, like most people with dementia, resists help from ‘strangers’ and interventions to make the carer’s life easier. Social Services work on the basis of making relatives feel guilty so that they prop up unsatisfactory care packages to enable people with dementia to stay at home, regardless of the costs to the carer. You have to stand up for yourself; your needs, wishes and health won’t matter to SS or to your mother.

It’s best not to discuss things with your mother but just put them in place, using subterfuge and therapeutic lies if necessary. If you try to get your mother’s consent she will just say ‘no’. Do you know if Social Services will be putting a Reablement package of care in place when your mother returns home (this should be free)? Were the current carers arranged by SS or by you? Do you have POAs for finances and health and welfare? Does your mother fund her own care?

However, even with more carer visits there will still be a lot for you to do as the remit of visiting carers is limited. They can’t deal with admin and problems in the house, and many won’t go shopping or take clients to appointments. I was in your situation with an elderly friend and so I know what it’s like. My husband was her financial attorney but there was no welfare attorney and no close family. I ended up running her house and garden, her care package and her life and health admin and it was a lot of work. Unlike you, I wasn’t working, and, luckily, we lived nearby. We didn’t consult her on everything but just arranged what needed to be done. For example, our friend only wanted a cleaner one hour a week but that wasn’t enough and the cleaner wouldn’t come for just one hour (she lived some distance away and had lost her other local work as a result of Covid); we arranged for her to come for three hours once a fortnight. Later, when we engaged a live-in carer we bought new bed linen and a new duvet to try to make our friend‘a cold, rather uncomfortable house a bit more inviting; our friend expected her to sleep under ancient, bobbly sheets and old blankets. There was an element of ‘keeping the show on the road’. If we’d sought our friend’s approval for every little thing nothing would have got done. It was obviously easier for me because we were friends rather than family members and you can’t make the same demands of friends.

 

[BunnyB22!]

Are there any dementia support groups where your mum lives? One of the upper schools where my parents lived had their 6th formers act as chaperones for a weekly group walk around Bedford Embankment. This activity contributed towards students Duke of Edinburgh Awards. Also found a Dementia Friend who would act as driver/chaperone for walks round stopping at a cafe (& toilets). They continued to support my parents when they moved into sheltered housing.

My dad was resistant to the idea of bingo, but I told him he didn't need to play, they needed him to help the ladies find the numbers on the bingo cards. He soon had his own dabber. Singing for the Brain groups are also sociable events usually with break for tea & biscuits. Again social services can arrange transport to/from activities for a fee.

BTW my parents were divorced by the time they were diagnosed with Alzheimers so had to do plan for each of them.

Good Luck

 

[Muttimuggle]

Your situation sounds, in many ways, similar to mine prior to my mother's fall from her stairs where she broke her hip. Strangely, in our case, this proved to be actually, in it's own way, a positive occurrence.(I am just grateful that the fall was not a more fatal one).

So my mother was confused often, wobbly and with poor eyesight(she blamed the latter for everything!) and poor hearing. I started with one care call of 30 minutes per day. My mother said and believed in her mind that she didn't need this but I was encouraged on to do this by the Memory consultant as my mother was making mistakes with her medications, sometimes overdosing on dangerous stuff and sometimes forgetting. Mum used to say the carers "Didn't do anything". When she was getting a bit more confused and needy I increased that care to 2 X 30 mins per week. We continued on. Mum never really wanted the carers there and I was visiting about twice a week, as well as doing her shopping, later also compiling her lists for shopping, sorting out or taking her for her many appointments and going there to her house to sort the "broken" TV or heating settings or phone or lifeline, whatever! I too was worn out and stressed with the situation. I didn't have any back up from my only sibling who spends much of the year in a holiday home overseas or elsewhere. The emotional support was also lacking, and actually negative from him.

I did used to broach the subject with Mum about other people I knew who were in care homes or even sheltered accommodation (which felt like a suitable option but only in the early stages) but had learned, by trial and error(!!), not to push it too much with her. She didn't want to go anywhere else, she, "Didn't need to go anywhere else", she was, "Alright as she was". I certainly wasn't...and neither was she but she couldn't see that.

Then came her fall from the stairs.It happened when one of the kindest carers was putting her tea on and Mum was attempting to get up the stairs with a small amount of dry washing in her hands. So, she had a 6 week stay in hospital(partly because of an additional dose of asymptomatic Covid) and then a 6 week Reablement package which another poster on here mentioned. As Mum was largely unable to walk whilst there, somehow she was beginning to recognise that she had preferred having all those 24 hour safety nets of support around her...and to my complete surprise she said she thought she, "Couldn't go home," I tried not sound too surprised...as, with dementia, mindsets can be changed from one day to another but when I gently asked her again a few times what she thought she would do after this(and that, did she know she couldn't stay here in the reablement centre?...which was good, incidentally!), she said the same, that she "Couldn't go home". So there it was, I started looking for care homes.

My mother has been in a Residential care home for over a year now. Many people have manageable dementia in there, if not most. She now is back to using her tri-walker for support but she doesn't walk far. Mum, obviously, has not got any better cognitively but she has not displayed that anxious, often angry, struggling behaviour that I witnessed when she lived alone. It was a good conclusion to a very difficult situation. I am luckier than many in that my mother has been agreeable about the move. I think this was because it was her idea essentially. I really would not wish to go back to those difficult times again.There are, of course, future predictable difficulties ahead(for us all!) but for the moment, things are settled.
What can I say to you about your situation? Don't push it or don't appear to to push it.See if you can find a way, including little white lies as a strategy, for getting your mother what you know she needs. Meanwhile, I know how tough it can be especially with a wobbly person. I think your Mum, if she doesn't get granted a Reablement package will need some more care calls, if nothing else to help you and if Social services or her own funding will allow.

 

[LouiseW]

Hi, you've had some exellent advice all I can add is empathy as I've been through this and come out the other end.
It's a terrrible time and requires a fight not only on behalf of the person you are caring for but a fight for yourself and your family and the two are not always alligned !

Just remember that the only people who can look out for your own health, sanity,quality of life is you - everyone else and the law are only concerned with the person you are caring for and they do not care about you and in many cases thet don't even recognise your role in the welfare of the person with demetia.

Take real good care of yourselves
x

 

[Weasell]

I would tell her the boiler has malfunctioned.
The house is freezing and no hot water.
The plumber would have to order parts.
Buy some time, and kick the can down the road.
But you need to do it convincingly.

I love compassionate communication

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[breakingpoint]

Thank you all so much for your kind and thoughtful responses. It really means a lot. I completely see that my Mum needs to feel that she is making her decisions rather than being pushed towards anything.
We picked her up from the care home this morning and took her home, settled her, made sure she has everything she needs then left. Within 20 mins she phoned me in a panic as she couldn't find something.... and so it goes on.
Glad you are all out there, thank you! I feel like I have support from a bus load of fellow travellers!!! (I mean that in a nice way!) X

 

[Sarasa]

Hi @breakingpoint, I think your mum has got to the stage where she needs people around her 24/7. She’d like that to be you, but that isn’t possible so the best solution is a care home. I’d do some research so you have a place that will suit her needs when the crisis occurs. I imagine it won’t be long till that happens.
Your mum is at the stage where she won’t be happy wherever she is. You just have to make sure she’s where she’ll be safe.

 

[breakingpoint]

Thank you Sarasa, yes I agree. She says she knows she has to make a decision but doesn't want to make it and doesn't want to leave her home which has do many memories of my Dad in it. Just all feels so sad.
However, the responses I've had from everyone have really given me strength to keep going. Thank you and happy new year x