Respite Care

[annielee1]

I am considering putting my husband with late stage PSP in respite care for about 3 or 4 days so I can go on a short vacation trip & to reboot my batteries. Right now he weighs about l00 lbs, is mostly bedridden, can't talk very well, can't see too good, & I hand feed him. With my help he can still walk to the bathroom & to the car. His mind is still good though so I am afraid he is going to act pretty badly if I tell him about putting him in respite for about 3 or 4 days. I am wondering if you have to have a doctor's medical form or something before they will accept him. Does anyone know how this works?

annielee

[carolinesimmons]

Annielee, I just did what you are proposing (I am in the U.S.). Yes, it required a doctor's order along with a history and physical and a list of current medications, which we took with us - the medications, I mean. My husband did not put up a fuss but he certainly wasn't thrilled to go. I had told him how sick my son was and he understood. Surely, your husband will understand your need for a break from his constant care.

Reassure him that you will be back to take him home. My husband focused in on not only the day, but the time I would pick him up. He seems to be in a similar place as your husband except for the weight loss. My husband is on a continuous feeding pump so he doesn't have an opportunity to lose weight!

Hope things go well for your both and that you recoup your energy while you are gone.

Caroline

[annielee1]

Caroline, I too live in the U.S. My husband did not want a feeding pump & refused to eat

soft food or thickening in his liquids. At 1st he was ok feeding himself but then it just became too hard & then one day I had some finger food & caught him lying in bed eating it. Why, I just don't know, but he did not choke near as much lying in bed with his head prop up justa little. A therapist said that maybe it is difficult for him to work his tongue to get the food to the back of his throat & so maybe the gravity from him laying down helps. She could not understand it either but I do know he does so much better eating laying down for some reason and refuses to eat any other way. He eats a lot & still does not gain weight. I thank you so much for the information & hope you have a good day.

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Although things are different with the admission in UK (all I did was visit a good home,and make sure I gave them lots of information but we did pay and it makes a difference in the UK as you get a choice if you pay), I can tell you our experience with mum and respite.

First as I said I visited myself to see what the place was like and they showed me round, I got to choose a room I liked for mum that was suitable for her needs and in a good position for mum to be watched for her mobility urges and impulse walkabouts. I suggested to mum that she might like a break from the place she was in for a few days , putting it like a holiday and change of scenery. As mum was a very sociable person who loved going out, meeting new people and holidays, this appealed to her and all she asked was a promise that it was just a brief spell and not permanent.Next I took mum to visit for the afternoon and she stayed for tea. We showed her the room we had chosen as well as the whole place, with its rooftop garden, library, chapel and all the facilities including the hair salon.They made a fuss of her and introduced her to a lady that was quite new so that they could chat and compare. Then mum had a think about it for a few days. She was really taken with it and had no hesitation in agreeing to stay there and her first stay was for 10 days.This gave me a chance to visit my eldest daughter and granddaughter who had moved to America. I arranged for my sister to visit after a few days to let mum settle in and my other daughter and niece visited and mum was quite happy. When I went back and returned her to the sheltered housing she told everyone about her wonderful stay.

Due to the progression of mum's PSP it was only a matter of weeks later when things got to a point where mum needed to go in full time. The care manager and senior carer came to see mum at her sheltered housing and chatted with her about moving in full time. Although mum realised it was a final step and talked about that she was absolutely fine about moving in there -she already had to rely on 4 carers and myself doing everything for her -and we made sure she had as much of her own belongings as we could fit in. It was only 3 months later that she rapidly declined and had to go onto the nursing floor so it really worked out as well as it could in the end.

I hope you get the respite you so badly deserve. It is a rough journey and I still feel emotionally washed out 12 weeks after mum passed away.

[SharonAB]

Dear Annielee1,

Making arrangements for respite is difficult. Well more than difficult - Just straight out damn hard and frightening to do. However, the reality is we all need a bit of breathing space. And, like all things the first steps are the hardest.

I found the respite centres/homes I selected were happy to give me the details on what was required. There was a bit of paperwork required including details from the doctor and the pharmacist. But what I found reassuring is that they provided some realistic ideas on what to do and what to bring along to make things more comfortable for John.

Regards,

Alana - Western Australia

[annielee1]

Thank you so much for the info. My husband is not very social but I doubt if anyone could understand him much because of his speech problem. He is a little hard headed but at the same time I know it would be a little scary for him if I left him somewhere. He likes to get out but being home is his comfort zone. I am just afraid that he would start yelling that he wanted to go home and not shutting up, mainly because he would be a little scared. His mother died in a nursing home & I know that is what he thinks about - that he is going to be left there. But on the other hand I really would like to get away for a little while.

Your input has been very helpful & it makes me feel like there is someone out there who understands what all goes on with this horrible disease.

Annielee