Caring on your own

Rosie 01

New member
Sep 26, 2023
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My mum has vascular dementia and I have been caring for on my own for some years now this weekend has come to breaking point when I have realized I can no longer do this .
As heart breaking as it is I have had to ask for help.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
Welcome to the forum @Rosie 01.

I’m sorry to read about your mum. It’s good that you’ve decided to ask for help.
 

canary

Registered User
Feb 25, 2014
25,296
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South coast
Hello @Rosie 01

Im afraid that caring for someone with dementia becomes impossible as their needs increase so much that it is more than one person can meet. I tried to do it all myself and reached carer breakdown. OH now has carers coming in to help him wash and dress and they have been a godsend. I also have a Home Help from Age UK to help with laundry/housework. Recently, though, it is becoming a struggle and I think I need more help again now.

Dont despise help, or see it as failure; it will enable your mum to stay at home longer.
 

Joni

Registered User
Jun 10, 2013
3
0
Hello @Rosie 01 I looked after dad for 14 years. My experience is get help sooner rather than later because you will burn yourself out. My dad didn’t want anyone else in the house except me but I just couldn’t be there all day every day. . You need to look after you. Well done for all you’ve done for your mum.
 

Rosie 01

New member
Sep 26, 2023
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Hello @Rosie 01 I looked after dad for 14 years. My experience is get help sooner rather than later because you will burn yourself out. My dad didn’t want anyone else in the house except me but I just couldn’t be there all day every day. . You need to look after you. Well done for all you’ve done for your mum.
I get where your coming from my mum wouldn't let anyone in as she felt it's taking her independent away but after this weekend I reached my point were I realised I couldn't go on any longer.
She has now agreed to have someone in to make Sure she takes her tablets. I had to give up full time work because I felt I was on a hamster wheel.
Thank you for your message it's brings so much comfort.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,292
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south-east London
Hello @Rosie 01 and welcome to the forum. You will find lots of support here, from people who understand.

It can be hard admitting that we need help but it is absolutely the right move to make. Too many carers try to plough on regardless without thinking about their own health and needs. Well done for taking that first step.
 

Hermann

Registered User
Sep 24, 2023
78
0
Canary said:
“I also have a Home Help from Age UK to help with laundry/housework.”

Could you tell me is help from Age UK location dependent or something?

Reason I ask is I care for two doubly incontinent people with severe dementia still living in their own home, one of whom is bed-bound on an air mattress, unable to stand or walk or feed or drink himself, and the other almost as bad (unable to stand or walk, feed or drink, but able to be lifted out of bed and placed in a chair for some of the day). Age UK, whom I approached, could offer me no help at all, nor could any of the other charities I have approached.
 

Chizz

Registered User
Jan 10, 2023
3,811
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Kent
Canary said:
“I also have a Home Help from Age UK to help with laundry/housework.”

Could you tell me is help from Age UK location dependent or something?

Reason I ask is I care for two doubly incontinent people with severe dementia still living in their own home, one of whom is bed-bound on an air mattress, unable to stand or walk or feed or drink himself, and the other almost as bad (unable to stand or walk, feed or drink, but able to be lifted out of bed and placed in a chair for some of the day). Age UK, whom I approached, could offer me no help at all, nor could any of the other charities I have approached.
Hi @Hermann
I care for my OH at home, and in similar situation, with bed, hoist and chair. . My wife is bedbound and would not be able to get up - she's forgotten how to walk and couldn't engage or process the instructions and actions to do so, apart from having had a lot of muscle wastage. Whilst she not incontinent - that is, she hasn't totally lost the muscle power - as she can't get up to go to a commode or toilet, it's as good as incontinent in practice. Supplies for this is are prescribed, but I still sometimes help the carers, and have to do the washing of clothes and bedding etc, and I deal with the meds, the shopping cooking cleaning gardening etc etc Having the carers makes an enormous difference. Only inconvenience is ot knowing exactly when they will be calling in. If my OH has pain or discomfort, which she does, then I'm up in the night to calm her, or give pain killers etc. Hence the time of this post!

When my wife came home from hospital the Local Authority Health Service had a home rehabilitation programme and they organised carers to come in. After the 6 weeks allowed for that, they then discovered that my OH would be self funding for care on their means testing, so they said "you're on your own". I kept on with the same care company with the same carers as had been coming in those first 6 weeks.

The LA ASS had given me their booklet "Your Guide to Independent Living, Support and Care Services" and they update it each year. This includes details of care companies one can contact to find out what they can and can't do, what their charges are, etc. Does your area do this? It seems many of the services are local and not national. If you are reliant on LA paying for these services, then choices may be more limited.

Best wishes
 

Hermann

Registered User
Sep 24, 2023
78
0
Thanks for your reply, Chizz.

We’re entirely self-funding. I can’t unfortunately say I share your positive experience with carers. Father was taken into hospital for a month last Christmas. We had the re-ablement package as a condition of his discharge with 4 care visits per day. No inquiry was ever made by the hospital and social services into what care the family had been providing for my father before his hospital stay, and throughout his hospital stay in fact.. Apparently the family’s care contribution was immaterial.

This 4x a day care package lasted less than 24hrs; carers came at teatime on day one, then didn’t come till after teatime the following day. No explanation why was ever forthcoming. That was just their version of 4 visits a day, apparently.

I asked the care company to cease their services (for this and worse reasons I won’t go into here) and social worker agreed to get another care company on board.

That took four months to put in place. We currently get one care visit a day of twenty minutes for my father and no outside care at all for my mother. We tried having more visits, with me taking a back seat, but the carers weren’t cleaning my father adequately and his skin was on the verge of developing pressure sores, air mattress notwithstanding. His skin is now A1 according to the district nurses.

I am currently involved in approx 95% of the pad changes, clean-ups, feedings, waterings, teethbrushing, nail cutting etc. on both parents. Other non-resident family and the once a day carer do the rest between them.

Father has had a four times a day bowel habit for over nine months, all of which is done in the pads and has to be carted upstairs to the toilet. Double bins outside get over a hundred pads a fortnight going in them. Mother is completely incontinent as well, but we can at least get her on the commode by lifting her on to it, though we don’t always get a worthwhile result.

Visiting district nurses, social worker, community alarm people, GP, OTs and physios have all said independently, without any prompting from me, that they have never seen a couple so disabled by dementia still living in their own home and cared for almost exclusively by their family.

Can’t tell you what I’ve been through, all told. Mother has had Alzheimers for over twenty years. She completely lost knowing who I was around 12 years ago.

I currently feel pretty strong when it comes to the caring, even though I have almost zero free time, but would love to be in Canary’s position of having a charity come and do housework for me. I can do the caring, but doing the bulk of the housework (how about 12 full loads of washing per week?) on top is the straw that threatens to break this particular camel’s back.

Now 2.a.m. Don’t usually get to bed before 3, so I’m ahead of schedule tonight!

All the best!
 
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canary

Registered User
Feb 25, 2014
25,296
0
South coast
Canary said:
“I also have a Home Help from Age UK to help with laundry/housework.”
The Home Help is through the Help at Home Scheme. They dont do any personal care, nor moving of a client, or dealing with bodily fluids. The Home Help will just do housework, shopping, doing some laundry, companionship etc so they wouldnt deal with mounds of soiled laundry or clearing up after incontinence. The idea is to help people who are frail or need extra help with looking after their home. You do have to pay, but it is less than other commercial providers.

You may have to ask specifically about the Help at Home scheme. When I first enquired about it I didnt know what it was called and was told that they didnt have people to help with cleaning. Some areas dont have the Help at Home Scheme, though. Could you advertise locally for some help if Age UK dont provide this?

BTW - re having carers. I have found getting regular carers in to be mucg better than those provided by reablement, which seem to work on a "one size fits all" basis. If you get a care agency they should interview you/the person with dementia to find out what is needed and put it in the care plan and you can ask for certain time, although they can be variable in implementation. We have carers in once a day and although I have asked for 10,00am they can be any time between 9.30 and 11.00! We get a rota telling who is coming when, but it can change at short notice, due to sickness or emergencies with their clients. The agency tries to keep the same carers coming to get continuity, but there is also quite a high turnover of staff.

I have tried to outline the pros and cons here, but overall I have found that the extra help provided vastly outweighs the downsides. I would recommend that you contact SS for needs assessment to organise carers, although if they would be self-funding, you can approach an agency direct.
 

Hermann

Registered User
Sep 24, 2023
78
0
Thanks for your answer, Canary.

I'm not sure how you got the idea I had an expectation that the home help would be there to deal with moving a client, personal care, bodily fluids and mounds of soiled laundry. I did say it was help with housework specifically I was after.

You say the idea is to help people who are frail or need extra help with looking after their home. I can't tell whether you're implying here that people with very severe dementia would or wouldn't fit into this category.

I'm still waiting for a reply from Age UK, so I'll update if I hear anything from them. Last time I asked I seem to remember they ignored my email and I ended up ringing, whereupon they said they couldn't help us.

The care we get once a day is nothing to do with reablement, but something we arranged ourselves with a care company. The care company managers are dreadfully bad, but the carer we have is in some respects remarkable. You could set your watch by him he is so punctual, and in five months of daily visits he has only had four days off. I've encouraged him to have more days off but he says he is in the country to work. He never works alone but always has me or another family member playing the main role. It's a good arrangement and we get along very well together. Sadly, though, the twenty minute visits that deal with one parent exclusively only really scrape the surface of what needs doing daily for two people with extreme care needs. Hence, my wish for more help with the housework.

I've approached several local voluntary organisations, two of which exist to provide practical help to people with dementia, but neither of these organisations was able to offer us any help. Thankfully, they were quite straight with me and said it was because my parents' dementia is too severe for their staff to have to deal with.

We've had mulitple care/needs assessments from social services, and we're due another next week. I'm not sure what good will come of it. A few months back the social worker, knowing how bad my parents are and how much work I have, suggested we would benefit from a sitting service. I agreed.

However, when she ran it past her supervisor, he asked whether my parents were well looked after and the family was currently coping. The social worker naturally told the truth and answered yes to both questions. The supervisor's response was that in that case we don't qualify for a sitting service.

Apparently social services wait for you to break before offering a sitting service; they don't provide a sitting service to prevent you from breaking in the first place. Everyone I've spoken to about this, including our very proactive social worker, agrees that this is absurd.
 

canary

Registered User
Feb 25, 2014
25,296
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South coast
I'm not sure how you got the idea I had an expectation that the home help would be there to deal with moving a client, personal care, bodily fluids and mounds of soiled laundry. I did say it was help with housework specifically I was after.
Im sorry I got the wrong impression. These were the things that you said you were having to do and peoples idea of what constitutes housework can vary!
The help that a Home Help from Age UK can offer is in some ways quite restrictive and in others quite wide ranging. I suppose that I was trying to explain what they would and wouldnt do so that you could make up your own mind as to whether it would be helpful.
 

Chizz

Registered User
Jan 10, 2023
3,811
0
Kent
Hi @Hermann
I arranged with the care company for 2 carers per visit, and for 3 visits per day - they come between 8am and 9am, then between 12.15 and 13.15 and then between 18.00 and 19.00. The visits are supposed to be, in my case, 30 mins per visit, but they are rarely ever longer than 20 mins or so.

From what you say, whilst you are coping as one of the carers yourself, I think you need to arrange separate visits per parent. 20 mins is not always enough for one person, and in no way can they deal with 2 patients properly in that time.

I haven't enquired about the Home Help from Age UK, but I may now do so, as having a cleaner for the house would be a great help, and I'm not sure I'm keeping the house up to scratch! However, if they, Age UK, think I'm coping then they may think I don't qualify for the help.

I don't mind doing the gardening - although I don't always keep up with that - but I regard time in the garden as part of my mental respite.
 

Hermann

Registered User
Sep 24, 2023
78
0
Thank you for your replies, Canary and Chizz.

It sounds like you are getting plenty of support there, Chizz.

One of the issues for us if we get more care than at present is the cost. 4 visits a day for both my parents would cost us £300 per day, or over £2000 per week. Not good value, in my opinion, for the help we would actually get (it would still be a lot less than my parents need), and not affordable indefinitely unless we start selling the furniture etc. and then the house, which I live in in order to provide round the clock care.

After a lot of searching I found a care company that was prepared to send only one carer per visit, so that has made things more affordable, especially as at the moment we have only one visit per day. Given that I've been changing and cleaning my mother 3-4 times a day for nearly ten years and my father 3-4 times a day for around three years, I don't need outside carers to take this job entirely off my hands, just to help me or another family member get the job done.

I'm not going back anyway to giving the job of changing and cleaning my father or mother to carers working without my or another family member's guidance as they let us down badly in the past with unacceptably low standards. Nothing I have seen since then of carers working without supervision has improved my expectations of the kind of job they would do if I just left them to it.

As I have mentioned, I think, already, the district nurses, on their regular visits to look at my parents' skin condition, have always given a very positive report, except, that is, during the brief period when carers were more heavily involved in pad changes than they are now. Since my father has not left his bed for nine months I think we must be doing something right.
 

Chizz

Registered User
Jan 10, 2023
3,811
0
Kent
Well done @Hermann for all you doing!
Keep up the good work! Glad to hear other family members playing their part as well.
Best wishes and strength in these trying times to you now and for the future.
 

Hermann

Registered User
Sep 24, 2023
78
0
Well done @Hermann for all you doing!
Keep up the good work! Glad to hear other family members playing their part as well.
Best wishes and strength in these trying times to you now and for the future.
Thank you, Chizz!
All the best to you too in caring for your wife!
 

Hermann

Registered User
Sep 24, 2023
78
0
I'm still waiting for a reply from Age UK, so I'll update if I hear anything from them. Last time I asked I seem to remember they ignored my email and I ended up ringing, whereupon they said they couldn't help us.
Just updating this.

I've now been told by our local Age UK branch that they cannot offer any home help or care service in our
geographical area.
 

canary

Registered User
Feb 25, 2014
25,296
0
South coast
They did say, however, that they're going to send round one of their supervisors/advisers to see what I'm dealing with at home and if there is any way they can help.
Oh that sounds more hopeful. That is good of them and fingers crossed they can help 🤞