Your tips: arranging respite care for a person with dementia

[HarrietD]

Every issue our magazine includes real life experiences, and they'd like to hear from you.

What advice would you give to someone worried about arranging replacement (respite) care for a person with dementia?

For example, they might be concerned about how the person will cope without having their usual routines in place, or how it will feel not to be there for the person.

Or they may be wondering how to make the most of the time they get for themselves.

Please share your thoughts by the end of 4 July, and they may be featured in the next issue of the magazine.

Thanks everyone

 

[doingok]

Waiting to read this with baited breadth.. I’m thinking about respite care for my husband but really struggling to make the decision.. Hope to get some good tips ..

 

[MaNaAk]

If it's with a care home make unannounced visits, describe your loved one on a bad day and let the home know about any special diet. Ask about activities and notice how staff and residents interact. If you've chosen a home arrange your loved one's room in the way that you think they would like it. Try to get them in for a few visits first use love lies and when you need to be very discreet do not say goodbye and the home will distract your loved one. If the respite is for two weeks and you are the primary get other members of your family to visit for two weeks do not go yourself otherwise your loved one won't settle.

MaNaAk

 

[HarrietD]

@doingok, hopefully more people will be along soon with some tips to help you make your decision around respite care for your husband.

Thanks @MaNaAk for your suggestions - these are all really helpful.

 

[Jessbow]

Book the respite before you book your own holiday/event. Ifound it almost impossible to find respite that ws bookable.

 

[HarrietD]

Thanks @Jessbow, that's very good advice.

 

[Helly68]

Consider day respite too. We paid for Mummy to go to a care home during the day a few days a week to give my Dad a break.
We had to pay for this as the council won't fund and there was no suitable day care option locally. Daddy got a break and Mummy was able to get to know the staff at the care home she eventually became a full-time resident at. Not all homes are familiar with this, but they will usually do it, as it is money for them, and they don't necessarily need a room if the PWD attends during the day only.
It hels if you have your own transport for this.

 

[HarrietD]

Thanks @Helly68, that's helpful. I'm glad to hear that day respite helped your mum get to know the staff, and gave your dad a break.

 

[MarkoAnto]

I am also interested in reading these responses, I look after my elderly mother, currently has MCI and I havent had much of a break for a year now, but I too am concerned by the impact of having time away and how she would react to it ??

 

[HarrietD]

Thanks @MarkoAnto and welcome to the community. Hopefully the responses on this thread will be helpful

 

[Fusilier274]

I personally visited several homes before picking two that were close to home and I thought were value for money but most important specialised in dementia not all do, I also spoke to the carers and staff, I also decided that the home I chose for respite would be the one for eventually residentiaL, my partner went into respite which is now residential and she is ok, when I first left her as one comment said I snook off, I rang the day after to check she was fine, I was going to see her but was told you can but try not too as it’s respite for you not her, so I stayed away, I visit every day when I can she’s safe she’s well and she’s being looked after, I my initial worries were unfounded, so I know it’s hard but be like me who questioned myself right up to entering the home, bite the bullet and be strong after all they are still there in person but maybe not in mind.

 

[mickeyplum]

I've spent weeks trying to work out how to get my husband into emergency respite care close to home in the event of me suddenly being hospitalised. I've emailed 2 and had no replies.
I found 2 more. Found 2 more on the Social Services website which are run by them. Looked at their latest inspections and both require improvement. Don't know where to go from here

 

[Rehana]

I needed respite care for my mother for 8 weeks while extensive work was being done to the house we both lived in. My mother has always been fearful of care homes and before her diagnosis of advanced dementia, often would express to me how 'you go to those places to die, so I had to tread very carefully.
My first tip is to take the time to read up about the care homes you are considering, and visit each one. Ask to be shown around - I asked if I could just sit in the lounge where the residents were, to get an idea of what it is like.
I described my mother's routine and general needs and behaviours and asked the manager how her needs would be met.
I asked what activities would be available and how they actively encourage participation.
I asked to see the menus available and how flexible they are to meeting my mother's cultural and dietary needs.
During my visit, I spoke to some of the carers.
Once I made the selection of care home, I visited two or three times a day during my mother's stay there (at different times of the day, so I could get an overview of my mother's experience there and manage any needs she might have).
I made sure my mother had a time each day when she would listen to her favourite pieces of music (via headphones), which she loved.
Visiting her regularly reassured her that I wasn't abandoning her, and also helped keep an eye on how she was.

 

[Tonyt]

Very difficult if the patient has not deteriorated significantly in a physical sense and does not accept, or understand, that there is ”anything wrong” requiring the services of a care home or day centre where the majority of other users are on Zimmer frames, or in wheelchairs, or bedridden. Certainly impossible to explain that the “respite” is for the carer rather than the patient. But good care home or day centre staff ought to be used to this problem and, if you can get the patient over the threshold, ought to be able to persuade your loved one to stay and, with a bit of luck, they will emerge saying they have enjoyed it!

 

[Meetoo]

I needed respite care for my mother for 8 weeks while extensive work was being done to the house we both lived in. My mother has always been fearful of care homes and before her diagnosis of advanced dementia, often would express to me how 'you go to those places to die, so I had to tread very carefully.
My first tip is to take the time to read up about the care homes you are considering, and visit each one. Ask to be shown around - I asked if I could just sit in the lounge where the residents were, to get an idea of what it is like.
I described my mother's routine and general needs and behaviours and asked the manager how her needs would be met.
I asked what activities would be available and how they actively encourage participation.
I asked to see the menus available and how flexible they are to meeting my mother's cultural and dietary needs.
During my visit, I spoke to some of the carers.
Once I made the selection of care home, I visited two or three times a day during my mother's stay there (at different times of the day, so I could get an overview of my mother's experience there and manage any needs she might have).
I made sure my mother had a time each day when she would listen to her favourite pieces of music (via headphones), which she loved.
Visiting her regularly reassured her that I wasn't abandoning her, and also helped keep an eye on how she was.

You are the best daughter. She must have been a lovely Mum and gave you the insight into how she should be cared for. I hope that now you are sure she is being looked after well, you are able to step back and relax a little and enjoy visiting without being on the edge of your seat watching for something to go wrong!

 

[Feri]

I think the question here is to give some idea about respite for carers not the patient.
it is perfect if one can find a residents or a care giver to go for a holiday or a long break but what about people like me that because of my wif’s attitude it is impossible. So what I find useful is to take any breaks from my wife as respite. when she sleeps for few hours I sit down and relax. Right now she has been in her room for two hours and is a respite for me. Whenever one of our children comes for an afternoon a I go out and enjoy myself. Remember the advice to mothers with baby? When baby sleeps you sleep. Don’t wait for long break, it doesn’t comes easily.

 

[EllaH]

I have to admit that when I read this what came into my head was “what respite?”. I’ve been trying for six months to get respite care for my dad. I’ve called 17 different homes in and around Fife. Nothing doing. I continue to check back with them as only one was willing to take my name, put me on a waiting list and is good enough to update me every month. I won’t have the option to visit and size them up, make an informed choice, it’s just going to be whatever is available. This is an appalling situation, the system is completely broken. I don’t know what I’m going to do when I can’t look after dad any longer. He went on social work’s waiting list for an assessment in January, no action. I call them regularly too and it’s the same story, they’ll get to us when they can. And when he does need a permanent place, it’ll be the same, take whatever’s available.

 

[Josh60]

My wife has Alzheimers and last year I had get my wife into respite care for three weeks as I had to have a operation. I couldn't go and see her for two weeks due to covid. The lady that helped me to care for her at home went to see her every day. When I did get to see her I couldn't believe the deterioration in her and within two months I couldn't cope anymore with her and I had to look for a permanent care home for her. So as regards to respite care it doesn't always work so I would be very careful as regards to respite care it doesn't always help. I wish now that I hadn't used the respite care.

 

[homeflame]

as a career for my wife i have never done this because the stress of leaving her in with a stranger would not let me have peace to enjoy the freedom

 

[update2020]

I succeeded in finding residential respite care outside the home only once, with a brand new care home that had lots of availability. Even so I still had to pay in addition for carers (companions) to go in every day to take my husband out. He was young, almost non verbal, physically fit and highly active. In other words a relatively unusual case unlikely to fit in most care homes.

Otherwise I built a network of paid carers who provided companionship and care for my husband while I was at work.

I think it was the lack of respite care that eventually made me look for permanent care as he deteriorated. It became harder to find carers as the disease progressed but the level of physical activity remained very high and the issues of coping alone with such a big strong but very ‘demented’ person became overwhelming. Still, I would have preferred continued ‘shared care’ or respite if I could have found it.