First time respite

[PatA]

After a few days of swinging from total hysteria at "being put away" to looking forward to her "holiday" we took mum for her week of repite care on Sunday afternoon. She seemed fine when we arrived and gave a performance that the Queen would have proud of. Staff seemed ok, room was lovely.She did take a bit of convincing that I was going to collect her and take her back home, but by the time I left I thought that everything was ok.
I rang Monday evening to see that she had settled and was told that she had spent most of the day "wandering". Bit concerned about this as mum will talk to anyone and is a great one for "joining in" with things. Went over Tuesday evening and I'm still not sure what to think about what I saw and what she said.I met the home manageress who scared the living daylights out of me and obviously missed her vocation as warden of a 1950's correctional facility. I found mum in the lounge, sitting on her own at the opposite end of the room from everyone else - and wearing the same clothes that I had left her in on Sunday. She was almost in tears as she told me that she couldn't change her clothes because she hasn't got any others and she didn't have her bath at the day-centre because she didn't have her bag ( the bag was left already packed for her when I left her on Sunday).
I took her to her room and on the way she said she had spent hours wandering around on Monday because she didn't know where her room was.This ties up with them telling me she wandering, but surely someone should have asked her why she was wandering or what she was looking for? I showed her all her clothes and gave her a complete change before chatting. Very difficult because one minute everyone is wonderful and she wants to stay and the next she wants to go home, and I'm very aware that most of the stories she tells are75% imagination. She believes she is in hospital and will only be able to go home if she is well enough. She wanted to back down to "the ward" as it was tea-time. When we got to the dining room tea was already well under way. This left me wondering what would have happened if we hadn't gone down when we did. Why hadn't anyone come looking for her? She is a confused old lady in a strange place and I expected a lot more - or is that the problem? Did I expect too much? I didn't say anything as mum is there for the rest of the week and I'm frightened of making things worse for her but now that I've had time to think I don't want her going there again and if residential care is ever needed then it won't be there.
Sorry for going on but I'm upset,I'm angry and I don't know how to deal with this. Do I speak to the home when I collect her or do I go to SS? I don't want to rock the boat as dad needs the break (I haven't told him any of this) but I would like her to go somewhere different next time.

 

[angela.robinson]

hi pat ,unfortunatly none of us are100% happy with respite care ,i am also made to feel i expect the impossible ,my husband is just 2 days home and has hardly passed water and that being very strong ,i sent a letter asking them to make sure he had plenty of fluids ,as i had the same problems last time ,i have just sent for the GP,I think you should definatly speak to the manager of the care home ,and ask for an explanation ,let them know how concerned you are ,other wise they will continue ,the bad practise i dont have a choice ,where JIM goes ,so i just keep complaining,its a catch 22 situation,ANGELA

 

[Brucie]

Hello Pat,

yes, it is just awful isn't it, leaving a loved one in someone else's care, and with all the worries we naturally have?

The staff at Jan's home told me that, on the basis of training they had been given recently, they are no longer permitted to touch residents to comfort them, or to cuddle them, and even in some cases to speak to them. All this is now rated as 'abuse', either physical, or sexual. The staff also told me that, in the past, when they had touched, cuddled, etc, Jan became more calm, and that they really hated not being able to help her in this way.

So care homes have even more problems than we may realise!

It seems to be the nature of the places therefore that residents are left to wander if they want to - as to stop them would be 'abuse', unless they put themselves into danger.

If someone refuses to change their clothes, or insistes they put the same [familiar] ones on, then that is how it must be. If they refuse to bath, shower, toilet, the situation is the same.

The first times into respite or assessment are hell for all concerned. The patient is totally confused as to why they are there; they feel they have been abandoned; they constantly await their relative coming to collect them. They feel that the other people there [residents, that is] are ga-ga and may steer well clear of them - even sit at the other end of the room.

And you don't join in with people you think are off their heads.

These places can be confusing because all rooms look the same - hence Mum probably won't know where her room is yet. If her personal effects and toiletries are in her room that obviously makes things even more difficult.

Generally speaking, staff at Jan's home will make sure that residents are in place at the table for meals. If relatives are with them, they may wait, rather than sticking to normal routine. Then they will ensure they are fed, because they have to record that in their notes.

Your fears may be correct, but this time in the dementia, it is hell on wheels, I'm afraid, so things may be as I have suggested, above.

Don't be afraid to speak, nicely, to the person in charge, to explain your concerns. If they prove difficult, then avoid the place in future.

I do so feel for your situation at present as I've been there myself with my wife!

Best wishes

 

[angela.robinson]

bruce ,how do i get to read someones post from day one without going back through them all,,something to do when i cant sleep at night ANGELA

 

[Brucie]

Hi Angela

I'm not sure what you mean here - do you mean how to locate the first message a person has ever posted? Or every message someone has ever posted?

If the person's name is available as a recent poster, then click on their name and a small drop down menu will appear. One option is "Find all posts by" and if you select this, you will get a list of all the posts, with the most recent appearing first. This means that at the bottom of the list is the first post made.

Is that what you meant?

 

[angela.robinson]

thanks BRUCIE,that was me being very stupid ,of course i have been using this method every day ,it was just when i brought the first thread up ,i noticed the amount of post that was shown in the corner andand thought these were previous post ,not the total , that is what comes of searching when i should be asleep, it is surprising how much you find in the back threads.i intended going through all the posts but i know i would never get through the amount jokes you have posted i have only just started to look at that section ,that kept me up much later than i wanted but went to sleep in a much lighter mood,so thanks for that ANGELA

 

[Norman]

Angela
I am having similar problems at home,in our own house!!
My wife is sometimes unsure where is the toilet/bathroom etc.
She will go off to bed ,early,and I will find her in bed fully dressed,what can I do?
She often says she would not take on herself in someone elses house!!!
She sleeps ok,so why worry, in the morning she will be bright as a button and say how stupid not getting undressed.
It really is day to day why make problems?
The wandering in homes is common,I remember a very well known England footballer, in a home he wandered a lot.
In the end they put "players dressing room" on the door and he found his room every time
I think I would have a quiet word with the manager as Bruce sugests to satisfy your own mind.
Best wishes
Norman

 

[connie]

This is something I dread. Lionel has been in respite a few times, but in a private residential retirement home. They took to Lionel, and he to they, but I realise that, as he is changing, the home will no longer be able to accommodate us.

He is going again next month, for a week, but his CPN has advised that I look for a home, nearer to us, that is suitable for dementia care.

Will my darling like it. Will they like him.. I am now so confused. I hear what they say, but his (Iwas going to say happiness) acceptance is of paramount importance.

I did start the respite route before it really became necessary, but at least Lionel had a chance to have a say, and more to the point, staff had a chance to get to know the inner man. Seems like that is about to change. It has been a funny old month. As carers we have been campaigning about medication, about payment for continuing care, and still trying to maintain a sense of calm.

Lets hope for better things in April. Regard to all, Connie

 

[PatA]

Dear Brucie,
I read your reply again and again and it does seem to answer a lot of questions. Mum is definitely going to say that she doesn't need any help - why would she, she doesn't think there's anything wrong. The same goes for changing her clothes, she will say that she had a bath and everything is clean on today. She also told me that they are too busy looking after the old people (she is 90 next month) and she can look after herself.
This was all confirmed to me when I had a call from the SW this morning. She said the staff cannot force her to do anything but she had rung yesterday and they said mum seemed very happy. I was suprised and pleased that she rang, hope this means we've got a good one!
I suppose we just have to be grateful that she's safe for the short time she's there and make sure Dad gets the break he needs. It's a sad reflection of the times we live in that you can't care for someone or give them a hug without the term "abuse" being thrown around, isn't it?

 

[Brucie]

Hello Pat

yes, as you say, the important thing - for her and for you - is that she is safe and out of harm's way as far as that can be managed.

Dad will really need the break, though he will be woryying about Mum all the time.

In a world where everyone was nice, we wouldn't need these abuse rules, but when just one person somewhere in the country is a bad apple, we all have to be careful there are not others about. I just have to make sure that Jan gets all the reassurance she needs when I visit her.

I'm pleased my few words were of some use to you!