Finding appropriate respite

[Gilly1952]

My husband was diagnosed with vascular dementia just over 4 years ago, although he probably had it for at least a year or more before the formal diagnosis. Pre-pandemic I was able to go out and leave him on his own for a few hours and know that he would be fairly safe but his dementia has become worse over the last year and he is now much more dependent on me. I had a carers assessment a year ago and it was suggested I should try and organise some regular respite to help me cope. Well here we are a year on and I'm still dithering over what sort of respite care might suit and how to go about organising it, will my husband agree to it etc etc. I've managed up till now with the occasional bit of ad-hoc help from family but it's not been regular, and my husband's sister who has been the most supportive in the past, is now not well herself so may not be able to help much in the future.

I finally plucked up courage today to contact Age UK and they were really helpful. They suggested we might try one day a week at a day care centre. I'm taking my husband on Friday to meet the staff at a local centre and to find out a bit more about it. I was really pleased with myself - until I told my husband's son what I'd done (son from his first marriage). He said he didn't think it was the right thing for his Dad to be doing, so now I feel like someone has poured a bucket of cold water over me. Of course I am well aware that my husband may not like it, but my view is if we don't try it we will never know.

I've already suffered from mental health problems and needed counselling last year, so I know that I need to organise some regular respite for my own sanity. His son's suggestion is to pay for a carer to come here for a couple of hours a week instead. I feel like I'm on a see-saw - on the one hand I know I need to have a regular break but on the other hand I'm feeling really guilty about it. Part of me is inclined to say I won't bother to look for respite and to just keep plodding on managing without because it's too stressful trying to arrange something.
I'd be interested to hear other peoples experiences of organising respite. Was it worth the effort? Is it normal to feel this guilty about needing to have a break?

 

[Banjomansmate]

I would suggest you do what YOU think is right and then if it doesn’t work out you can try the carer coming to the house. At least if your husband is out at day care you can relax at home or go out if you wish but with a carer you will always have to find somewhere to go. Or you could try both ideas and you get a double whammy of respite. ?

 

[SalsaKate]

Please don’t let someone who doesn’t understand the day to day trials of caring put you off seeking respite. If you burn out you won’t be able to care for him at all.
My Father & I care for my Mother who has both Vascular Dementia and Alzheimer’s, she would not go to a day centre but we do have a Carer visit everyday for half an hour which we pay for. It’s not that long but just that someone different coming in everyday helps, we will shortly be arranging longer visits as I have to go back to work and Dad won’t be able to get out for a walk without.
Check with your GP if they have a care support worker on staff as they will be able to give you some advice, our surgery even offers some counselling for carers.
Don’t give up on your plan and remember to look after yourself.

 

[MarieGan]

You took your husband to the centre and if you think he benefitted from it as well as you then you should continue to take him. I understand the son will have his opinion, but he’s not living with the day to day as you are. If your husband is being taken care of for a few hours a week then you can take care of yourself, you absolutely have to have some time out for you. I really hope you get the support you need xx

 

[Dimpsy]

Please take your husband to the day care centre, maybe for an hour of two to start with. My mum has declined a lot during the last twelve months as well and I'm sure being shielded and just having mostly OH and me to spend time with hasn't helped. I'm very much looking forward to the Memory cafe and singing club restarting, so she can start to widen her horizon's again, I just hope it's not too late.
You will benefit from some time to yourself and, thinking positively, it may be good for your husband as well.

 

[jenniferjean]

I suggest you keep to your plan of taking your husband to the day centre. You've done well to go ahead and arrange it in the first place. You must think of yourself, and you mustn't feel guilty. I started off by having a carer in for two hours a week so that I could get out. That was later increased to three hours.
Last month I arranged for my husband to have a full two weeks respite in a local carehome. That didn't work well for either of us and I'm hoping I don't have to do it again.
Now I have a carer come in twice a week to shower my husband. And recently my husband has been to a day centre. He's been twice now, just once a week, and although he can't tell me anything about it as he can't remember, it must be ok because he says he'll go again next week.

 

[Thethirdmrsc]

You have to be selfish, and look after yourself first, then you can care better. Family members who don’t do the 24/7 caring do not understand how hard it is. I moved my OH and I last month away from his family into a town, to access better care, and after an assessment will be getting a day care centre and sitters once or twice a week, and I will take advantage. If I am happy, he is happy.

 

[Bettysue]

Definitely go ahead with your plan. My partner has vascular dementia and has deteriorated a lot in the last 12/18 months. I have help organised by Social Work and he has 2 days at a day centre10 till 2pm and a carer at home one afternoon for 2 hours. As he is incontinent he has help with showering 4 times a week. I also pay a private carer to sit with him to allow me to play golf once a week. Without this input I would not be able to continue caring for him at home. Even with this support I know that his time at home is limited before 24 hour care becomes inevitable. Look after yourself with as much help as you can access.

 

[Sandy47]

I used to be able to leave my OH for an hour to have a walk or go shopping but now he cannot be left on his own so I started having a carer in once a week. At first he hated it and used to tell them they weren't needed but now I have someone in almost every day for an hour. It gives me a bit of respite and he actually likes engaging with them. We had tried memory cafes and singing for the brain but he refused to go. He's been going to a day centre once a week for the last 6 weeks which has made a huge difference. He seems to enjoy the activities they do with him and it helps him to socialise.
He thinks he's there to help them.
My advice is firstly, get help for yourself and the benefits for your OH may be surprising. Secondly, try things out. Get a carer once a week to let him get used to the idea. Then increase it if you can. Thirdly, don't give up if at first it doesn't seem to work out.
Finally, you will feel guilty but you need a break from the caring. I know in the long term my OH will need more and more care so I am preparing him and myself for that time. Having respite is not a sin it is necessity.
Take care of yourself and I hope you get something organised.

 

[Grannie G]

He said he didn't think it was the right thing for his Dad to be doing,

Perhaps the son would volunteer to look after his dad occasionally to give you a break @Gilly1952 If not he has no right to interfere

 

[AwayWithTheFairies]

I thought that too GrannieG. No on In my family would say anything. Like that because they would find the PWd With their suitcase on their doorstep next day, so they could make a proper assessment of the needs then get back to me with their educated advice!

 

[Shedrech]

just to offer a warm welcome to DTP @SalsaKate
I hope going back to work and the increased home care visits for your father both go well, so your mother gets a bit of a break too
now you've started, keep on posting !

 

[Shedrech]

hello @MarieGan
a warm welcome to DTP
I hope you too get some time to look after yourself
do keep posting, it helps to share experiences

 

[lollyc]

My husband was diagnosed with vascular dementia just over 4 years ago, although he probably had it for at least a year or more before the formal diagnosis. Pre-pandemic I was able to go out and leave him on his own for a few hours and know that he would be fairly safe but his dementia has become worse over the last year and he is now much more dependent on me. I had a carers assessment a year ago and it was suggested I should try and organise some regular respite to help me cope. Well here we are a year on and I'm still dithering over what sort of respite care might suit and how to go about organising it, will my husband agree to it etc etc. I've managed up till now with the occasional bit of ad-hoc help from family but it's not been regular, and my husband's sister who has been the most supportive in the past, is now not well herself so may not be able to help much in the future. I finally plucked up courage today to contact Age UK and they were really helpful. They suggested we might try one day a week at a day care centre. I'm taking my husband on Friday to meet the staff at a local centre and to find out a bit more about it. I was really pleased with myself - until I told my husband's son what I'd done (son from his first marriage). He said he didn't think it was the right thing for his Dad to be doing, so now I feel like someone has poured a bucket of cold water over me. Of course I am well aware that my husband may not like it, but my view is if we don't try it we will never know. I've already suffered from mental health problems and needed counselling last year, so I know that I need to organise some regular respite for my own sanity. His son's suggestion is to pay for a carer to come here for a couple of hours a week instead. I feel like I'm on a see-saw - on the one hand I know I need to have a regular break but on the other hand I'm feeling really guilty about it. Part of me is inclined to say I won't bother to look for respite and to just keep plodding on managing without because it's too stressful trying to arrange something. I'd be interested to hear other peoples experiences of organising respite. Was it worth the effort? Is it normal to feel this guilty about needing to have a break?

Prior to Covid, my Mum went to 4 groups, which she could attend without me, and a couple of other activities, which I had to attend too.

I'm going to stop to give myself a pat on the back here - because I found every single activity myself, trawling the internet etc., with absolutely no help from any dementia organisation or social services.

We also tried lots of unsuccessful activities, because it's not a case of one size fits all (dementia charities please take note that not everyone wants to sing...). Mum was always resistant - like most PWD her default setting is "no" - but we agreed that she would always try something, before deciding it wasn't for her. Much to her surprise she did actually enjoy many of the groups, and now misses them.

I realise that Covid has paused many of these groups, but they are now starting to re-open. Take a look at your local council website under Old Age Services (I expect it's called something more P.C than that!) Certainly in our area there are a number of community and church run groups, Men in Sheds, COGS clubs etc. Age UK in our area offer personal assistants, who can sit with the PWD whilst you have some time to yourself - although it may not be available in your area. Think outside the box - if appropriate could you both join a local walking or gardening group? Attend an OAP exercise class? I realise this doesn't give you a break, but it does allow you to meet other people (and have a sensible conversation!)

What I have learnt is that no-one is going to do this for you, but that there are things out there, you just need to hunt them down.

Good luck, and don't listen to anyone who isn't doing this day in day out, because they have no idea what your life is like.

 

[canary]

Hi @Gilly1952 I think your plans sound very good and sensible, so please go for it.

Has his son given a reason why he doesnt want his dad to do this? Is there a genuine concern that you might reassure him about, or is it denial that his dad has reached this stage? If its just denial then in my books, people who are not involved with the care of a person with dementia have not earned the right to insist on their own views

 

[Gilly1952]

Thank you to everyone that replied to my message. I took my husband yesterday for the visit to the day centre. I was really impressed by the staff and the range of activities. He was a bit reluctant to go but once we were there he seemed interested and asked a couple of questions - mainly about what sort of biscuits they provided with the tea and coffee (he has a bit of a bourbon biscuit obsession). He has agreed to go for a trial - just a couple of hours on the 2nd June. He had of course forgotten where we'd been by the time we got home, so when the 2nd June arrives I'll probably have trouble persuading him to go but I definitely think it's going to benefit both of us, so I will persevere. I've spoken to his son again and told him we are going to do the trial. He's still of the opinion that his Dad isn't going to like it but we will see.

 

[AwayWithTheFairies]

Remind him it’s the place with the bourbon creams!

 

[Gilly1952]

Remind him it’s the place with the bourbon creams!

Yes, great idea

 

[Jazzmax]

I understand how you feel. I recently asked on here for advice about whether to contact Social Services re my partner. I did and one of the recommendations was for her to attend a Day Centre. Before Alzheimer's she would have hated the idea so like you I was torn. This week I took her for a half day free trial, I slipped out while the others were talking to her . When I returned they said she hadn't eaten or spoken much. At first she said she wouldn't go back but when I said I had a lot of running around and jobs to do on Thursday etc and thought it would be better for her if she went there and had company instead of being home alone, some of the other residents made a bit of a fuss about her and she reluctantly agreed. She spent the whole day Thursday 10.30 to 3.30 pm and although tearful and very pleased to see me when I picked her up, the staff said she had eaten and engaged a little bit more and had won the Bingo! Cadbury chocolate fingers. I will try again next week. I didn't really do anything constructive with my couple of hours but felt so relaxed and it recharged my batteries. Please persevere for your own sanity - that is the advice I keep getting. We 're in this together. Good luck, will be thinking of you.

 

[AwayWithTheFairies]

The only reason my mum isn’t much worse is because that she started reluctantly going to the seniors center on my insistence 4 years ago, I had to go with her at first, and only to do an exercise class at first, but now she has friends and will attend several of their activities and facilities, almost eagerly! I’m sure it has prevented serious falls at least. Even she admits it and encourages others to go. They also have a dementia daycare and I’m sure if we were staying here I would have been able to get her in there now as she looks favourably on the whole center now. It’s a great facility and well supported by the wider Community. Lucky it’s nearby.