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End of tether - Carers UK Forum

End of tether

Tell us a bit about yourself here.
Hello
I'm new to this forum so forgive me if there are lots of posts about this already. I haven't had the chance to explore the site yet. I've joined because I'm feeling pretty desperate. My husband is in Stage 6 of Alzheimers and I've been looking after him for nearly 8 years now. His deterioration is accelerating, but he still has periods of awareness and lucidity, which he usually manages to demonstrate when there is some kind of assessment going on, or an 'official visitor', such as when Adult Services came recently to do a care needs assessment and carer's assessment. He told them he was able to cook simple things (which he hasn't done for years and can't turn the hobs on, or find them); that he reads lots (he can't read any more, except newspapers a bit, or write either) and that he can look after himself. This is not true. I am exhausted because at night he wakes me regularly either hallucinating, peeing on the floor or trying to find the bathroom; he has massive mood swings which recently have also led to raised fists in my direction, although he has never actually approached me aggressively or offered violence before, He follows me everywhere, sometimes even into the toilet. He is panicky, anxious the whole time. And I can't leave him for longer than 15 minutes without him trying to find me, including wandering out onto the street and leaving the doors open so the dogs get out.
I've managed to get him to a Day Centre one day a week. Although we've had the assessments from AS, there are no plans yet and I'm not hopeful because to start with we'll be self-funding. Until this year I've had no respite, but in the last few months one week and a couple of weekends.
I feel guilty because I thought I'd be able to look after my husband until the end, but increasingly I feel as if I'm in prison. It's emotionally draining, intellectually stultifying and absolutely exhausting. I'm irritable and resentful and trying not to be, but failing. Would it be wrong of me to consider getting him into a home, even though he doesn't want to go? And how do I do that?
Hi Liz,

And welcome to the Forum. I found myself in a similar situation with my mum and eventually found that she required more care than I was physically and mentally able to give. If your husband were to be in a nursing home, you would be able to visit and do the nice things for him, while paid carers could see to his day to day needs. Those carers also get breaks / holidays and will be rested when they go to work!

Where to go from here? A phone call to Social Services to tell them that you cannot cope any more and need support would be a good start. Also to enlist the help of your GP. As you are self-funding, you could also go directly to nursing homes and ask about vacancies. Of course you need time to be able to visit homes. Is there anyone who could sit with your husband while you go out for a couple of hours? I used Age UK's dementia befriending service where two ladies visited my mum for once a week while I disappeared. My mum hated them and used to play up but that is another story. The staff at the Day Centre may also be able to advise.

Now is the time to do the research and look at homes. I started by my mum going there for respite for two weeks. Eventually that respite became permanent.

Good luck, it will be difficult but in the long run, your life will become easier. It was the hardest thing I ever did but I do not regret the decision. I could just not cope any more

Anne x
A guide to home care services ...what's available and who supplies them :

https://www.carersuk.org/forum/support- ... site-37984
Hello Liz welcome to the forum
I totally agree with Anne. My lovely husband had vascular dementia, suffered strokes, and the last year had other health issues. I was actually told by his consultant that he needed a nursing home. It broke my heart, but his needs were prevalent. The grace was that I could visit, and be his care manager,fight his corner when needed , but have respite in my own home. Its not easy, but you find the strength knowing that they are being cared for 24/7. Guilt is best put to one side, and feel very sad instead. He had lucid moments too, and at times I doubted that he had dementia, until he said something odd, like asking for his parents, or that he had been on holiday.
As Anne advises, look into the care/ nursing homes, and prepare yourself. You are important too and need to look after yourself.
AGE UK ... guide to care homes ... very comprehensive with several related topics :

https://www.ageuk.org.uk/information-ad ... care-homes/
Thank you to those of you who have replied to my post. It all helps! I will follow advice.
Liz
Hi Liz
I have heard before of people who are suddenly able to rouse themselves for official visitors. Were you able to speak privately during the carer's part of the assessment? If not, as well as what Anne said, and if you have not done so already, could you keep a diary for a week of all the things you have described for us and send it to Social Services? That might help balance the fact that your husband says he does not want to go into a home. You'll find lots of us here talking about the difference between 'wants' and 'needs' and its clear from what you write that his needs are high and increasing.

[Crossposted with lots of others!]
Your welcome.
Liz_1910123 wrote:
Mon Oct 21, 2019 1:29 pm
Hello
I'm new to this forum so forgive me if there are lots of posts about this already. I haven't had the chance to explore the site yet. I've joined because I'm feeling pretty desperate. My husband is in Stage 6 of Alzheimers and I've been looking after him for nearly 8 years now. His deterioration is accelerating, but he still has periods of awareness and lucidity, which he usually manages to demonstrate when there is some kind of assessment going on, or an 'official visitor', such as when Adult Services came recently to do a care needs assessment and carer's assessment. He told them he was able to cook simple things (which he hasn't done for years and can't turn the hobs on, or find them); that he reads lots (he can't read any more, except newspapers a bit, or write either) and that he can look after himself. This is not true. I am exhausted because at night he wakes me regularly either hallucinating, peeing on the floor or trying to find the bathroom; he has massive mood swings which recently have also led to raised fists in my direction, although he has never actually approached me aggressively or offered violence before, He follows me everywhere, sometimes even into the toilet. He is panicky, anxious the whole time. And I can't leave him for longer than 15 minutes without him trying to find me, including wandering out onto the street and leaving the doors open so the dogs get out.
I've managed to get him to a Day Centre one day a week. Although we've had the assessments from AS, there are no plans yet and I'm not hopeful because to start with we'll be self-funding. Until this year I've had no respite, but in the last few months one week and a couple of weekends.
I feel guilty because I thought I'd be able to look after my husband until the end, but increasingly I feel as if I'm in prison. It's emotionally draining, intellectually stultifying and absolutely exhausting. I'm irritable and resentful and trying not to be, but failing. Would it be wrong of me to consider getting him into a home, even though he doesn't want to go? And how do I do that?
Hello

This is a online directory of UK care homes across all regions. When I was looking at care homes, I found it helpful. http://www.carehome.co.uk. Don't forget to read reviews. Find out as much as you can. Make notes if this helps you. Ask questions too. Take a short list of questions to ask.

Have you had a needs assessment or not? It is clear you cannot carry on like this anymore. Is he on benefits? It is a good idea to check what benefits you can claim on his behalf too. The main one that comes to mind is PIP. Also carers allowance. Citizen’s Advice can help with benefit applications and issues etc.

When was the last time you had a break?