How to ease the transition to respite care?

[Worried2017]

Hi,
I have a parent who has been diagnosed with dementia. My other parent was looking after them at home but recently they've had a live-in carer which has been hugely helpful. Very sadly the PWD's condition has deteriorated rapidly and the carer is about to take a scheduled break. My parent cannot cope on their own, so it has been arranged for the PWD to go into a home for respite care this week.

The carer and my parent will be doing the transition (no other family members live close by) by going for lunch at the home, then showing the PWD the room, then leaving quietly/without saying goodbye.

The PWD does not accept or realise anything is wrong, or in fact know about the care home, and we're all very worried how they will react, especially as they have been fairly lucid in recent days. The other parent feels that they are 'shutting the door' on the PWD so I have suggested writing them a letter to leave with the PWD in the room.

It would be a brief letter along the lines suggested by others on this forum, e.g the doctors said you need to stay here for a little while until you are stronger etc, and reassuring them that they will come and see them often.

Interested to hear if anyone else has done a similar thing and if it helped? Also for any suggestions on how to make the transistion to respite care easier for both the PWD and parent remaining at home.

Thank you in advance.

 

[Cat27]

Welcome to TP

I've not heard of the letter bit before but the going for lunch etc is a good idea.
I agree about blaming the doctors for the respite. I hope all goes well.

 

[Bod]

If the respite is for less than 21 days, I would advise against visiting.
The person needs to get used to the new surroundings, not be reminded about home.

Bod

 

[Delphie]

I was extremely concerned that my mum would realise that she was in a care home. She had lucid periods too, and could come across as very together, if only for limited periods of time. And she considered herself to be entirely well, with any suggestion that she might be ill or not coping resulting in instant rage. So the period just before getting her into care was beyond stressful and I remember my husband and I talking about how impossible it all seemed.

She knew nothing of the plans. I pretended we were going on holiday together and the care home was our hotel. We got there, a carer came and took her to see her room, and I left.

I can't say it felt great but there was no way she could continue living at home and the care home was the best I could find, so there could be no discussion about if she should stay or what she thought of the whole idea. Her reality was complete independence. The actual reality was the opposite, with self-neglect so bad she was going to be sectioned.

Guilt drove me to frequent visits and calls but I unsettled her. She was fine most of the time when I wasn't around but became quite agitated by our contact, or even after a phone call. So I stopped visiting and calling for a while, and she settled. In fact she settled incredibly well. And she never figured out that she was/is in care, which I still find amazing. She could look around the place while we sat there together and comment on how she'd never end up in a care home. Her room was/is her 'house' and the rest of the place was... somewhere else!

I say was/is because she's progressed quite a bit over the last few years and conversation is much less flowing, so I know even less about what she might be thinking. But I do know that the decision to move her there was the right one, for all the stress it caused me and the initial unsettled period she went through. The place has given her a much better quality of life. Even now, she still participates in a bit of exercise and singing and crafts. She has all the creature comforts and company too.

And it's not a case of shutting the door once someone goes into residential care. A different kind of caring begins for us at that point. We're there to advocate, to visit, to bring in treats, to spend time together without coping with everything that solo care entails. It doesn't have to be a horrible, negative step. There are many positives too.

 

[Grannie G]

Try to bear in mind when a person with dementia is left in residential care, whether it is for respite or permanent residency, they are not being left alone. They are being left with a team of experienced carers who will care and protect the person with dementia , as professionals.

 

[Samantha1977]

I can sympathise the feelings of when you put someone for respite for the first time. We did it a few months ago. And we were not prepared at all for how WE would feel. Initially we were excited. We would finally get a break in 10years as a couple and spend some time with our little kids. But from the moment we got back home it was heartbreaking. We were so overwhelmed that we cut the 7 day respite care short to 5 days. And we barely got to 5 days as it was Xmas etc and office was closed so they couldn't discharge my mil.
However we explained before she went in that the doctor wanted her to rest and they will do some checks on her. It was a lie ofcourse but we did not know what else to say.
I don't mean to scare you but my mil was besides herself by day 2. The care home actually said she was very difficult to pacify. She wasn't aggressive but she would constantly every 5 minutes ALL day long look for her son and family. She got herself very worked up. She would not sit still at all and was fidgety constantly.

Anyway we felt much better once we picked her up. Even if it was only temporary we just could not take the feelings of guilt for even a few days. It scares me senseless that when her health deteriorates SOO much that we will have no choice but to put her in a nursing home how will we cope with it.

I'm sorry I sound so selfish only thinking about our own feelings. But I'm being honest.

Sent from my SM-G925F using Talking Point mobile app

 

[Worried2017]

Thank you everyone for your advice and sharing your experiences.

We will be hugely torn between letting the PWD 'settle in' whilst wanting to visit, especially as it will probably be the first time ever my parent will be going home by themselves. I guess we may have to expect some unsettledness from the PWD but hopefully the staff are sufficiently trained and experienced to resssure them, and I imagine that first visit to them may be very hard.

This first experience of respite care is very difficult but we will try and focus on potential positives for both the PWD being looked after by a number of trained/experienced staff, and the respite it is providing my other parent, but at this early stage, we're very much taking it one day at time. Thanks again.