The day has come

[Mary Poppins]

Today the day I have been dreading yet needing if that doesn't sound strange has come. Thisafternoon Dad goes into a care home for 2 weeks respite care. This is his first time away from Mum in nearly 60 years. He is in his 7th year of dementia and after a recent move of areas we managed to get a referral, within 10 days mum (or dad?) was assigned a social worker and he visited on Monday and within 2 days Dad is off to be assessed and to get his medication sorted. I have mixed feelings, I know I was the main instigator of this move, to that end I feel terribly sad and guilty. Will mum cope? she is very up beat at the moment because she has been ill herself and needs this break to recouperate but how will dad cope. He is (and always has been if I am honest) used to getting his own way and now with the condition he can be very aggressive if stopped from doing exactly what he wants. Last night I dreamt he was strapped in a chair and I was watching but could not stop them doing it to him - I KNOW that sounds dramatic but i think we have been on this treadmill of coping and caring and now others are involved I am panicing inside that he will not cope with the transition then he could be worse when he gets home. How do you know that when you've gone they will give him the care he needs and attention he demands? I feel sick with nerves. I am sure everyone who reads this will have had some of these thoughts - how do you cope? please help

 

[EllieS]

Be Brave - you're doing the right thing

Dear Mary

You poor thing - you must be feeling as if the whole world is on your shoulders. What If's are bouncing through your head! BUT please remember that this was not a rash decision, but one based on the facts as you see them and the love you have for both your Mum and your Dad.

Think positively and don't anticipate any horribles (but you will keep a close eye on everything/everyone anyway - and if you're not happy with anything at all, talk with the appropriate member of staff straight away - they should understand. Don't be afraid to keep asking questions - you'll probably get the feeling you're being a nuisance but as long as you're being reasonable, take no notice whatever. Should things not be right - take things to a higher level and IF things were terrible - "get him outa there" it's 2 weeks respite care not life imprisonment.

Thinking positively, as long as the Care Home is appropriate for your Dad's needs, they should know exactly how to get the best out of your Dad - it's not in their interest to have him too upset, so they should be well versed in distracting and calming techniques. I really hope so.

If all is well, it may well be a useful thing to do every now and then as the need arises or if your Dad (and Mum) needs this to be a more permanent arrangement - at least you will have had the opportunity to gain confidence in this particular Home.

With regard to your feelings of guilt - have a look at my contribution to the previous thread. I think you're doing the right thing.

Try not to worry too much (Easier said than done though).

Best wishes

Ellie

 

[Brucie]

I am sure everyone who reads this will have had some of these thoughts

yes, many of us have been through this, and it is not a pleasant thing.

However, we may feel better if we can accept that it is the best thing for them. There comes a stage where an assessment needs to be made because life just becomes too bad for them without a sensible regime of medication and care.

It makes it easier to come to terms with it if we accept it as the norm - as soon as our hearts will let us! - and then adjust to whatever the changes are.

If they move into care permanently, then treat it as if it is their normal home [which it now would be] and just interact normally. Generally they will ask to go home, or when they are going home, and that is the most difficult part quite often. Lies come into play here and "the place is being decorated at the moment so we can't get in" is often better than trying to explain this is their home now.

Last night I dreamt he was strapped in a chair

set your mind at rest - they are not permitted to do this, though medication will often be the way when restraint of some sort is needed. Homes are hugely sensitive about physical restraint as that is considered abuse, except where people's safety is involved.

How do you know that when you've gone they will give him the care he needs and attention he demands

well you don't of course, but you can test them by visiting at different times and unexpectedly, and observing how he is. When with him, look around at how other residents are treated in the absence of their relatives. If you visit often, then to the staff you become part of the wallpaper, and they don't put on any unusually good care.

Mostly, don't worry about panicking. It is normal. It shows your love. But don't let the panic take over. Just take things a day at a time.

 

[jc141265]

you can test them by visiting at different times and unexpectedly

Heehee I do that too, never make my visits too routine so that all the staff know that I could appear any time of the day so its best not to get slack with Dad's care.

On the rest of your post Mary please don't beat yourself up too much, as Ellie said it isn't life imprisonment so you can decide to take him home again if you are not happy with how it works. As you and I have spoken before your Dad appears to have a lot of the same behaviours my Dad did and hopefully this might mean that he will respond to respite the same way my Dad did and actually improve in some ways.

He is (and always has been if I am honest) used to getting his own way and now with the condition he can be very aggressive if stopped from doing exactly what he wants.

Dad was exactly the same and is quite a big and so somewhat intimidating man, but in respite and now in the home he is almost never aggressive at all just a rare yell and a rattle on the gates. I don't know if it is the routine, the calmer atmosphere or the fact that he is dealing with non-family members and that brings out his polite side but it was quite amusing in fact that all the respite staff and now the home staff rave on about what a lovely gentle man he is (half of them I think are kind of in love with him ). This is the man that at home would yell at and bang on mirrors, pick up chairs and toss them over, pour coffee out of his cup onto the floor quite intentionally just to tell you he was...well peeved!

The other advantage of visiting often is that you can build up a relationship with the staff. Also what we did was write up a history of who Dad was before he had dementia so they could see him as a person, not just a demented old man. If the staff know both you and him I think that makes their care better. If you can manage it or perhaps another family member, visit him often, the staff at Dad's home have said to me that he must have been a truly wonderful father to have a daughter as devoted as I am. That means they have a respect for him and are in awe of how good he must have been to have me behave in such a way, don't you agree that that might make it harder for them to not treat him right? One feels guilty about strapping a wonderful man into a chair (not that it is likely that they will do this) more so then one does if all they know about the man is that he is rude, nasty and cantankerous.

Sadly I have seen this at the home Dad is at, the way some staff only see the bad side of the patient and these are usually very good staff but they are only human and suffer from prejudices like the rest of us do. I do believe that had family members expressed to them all the wonderful things about that person then their loved one would have been treated better and thus would probably have been far less trouble.
Hope all this helps,

 

[Brucie]

what we did was write up a history of who Dad was before he had dementia

I filled the walls of Jan's room with photographs taken throughout her life and many staff commented that this helped them a great deal.

 

[Sally]

choices

Ellie is right, if it all goes terribly wrong then you can bring Dad home if everyone is too stressed to take advantage of the break it affords. My gran went to visit my grandad when he was in hospital in respite and when she found he was sitting in soiled clothes she phoned my Mum and they took him home that afternoon.

Later on a more suitable placement was found in a residential home and that went fine, but don't feel as if you HAVE to leave him in there if you or your Mum are miserable.

I do hope it goes well,

Sally
x x x x x

 

[mcrookes]

respite care

Hello everyone I'me new on here,but I was interested in this topic because with a bit of luck I might also be getting respite this week,I care for my husband who has Parkinsons disease and dementia, and also my son who is thirty seven has has Aspergere's.This is the first ever respite I've had in thirty seven years, and I'm not too sure what it's all about,the social worker has asked me if I can afford £200.00 a week, and I thought it a bit much, am I wrong?

 

[Sandy]

Hi mccrookes,

The Alzheimer's Society has a factsheet on respite which you can find here:

http://www.alzheimers.org.uk/Caring...tia/Coping_with_caring/info_shorttermcare.htm

It does include some basic information about how local authorities might assess the contribution towards the costs.

Take care,

Sandy

 

[Mary Poppins]

Respite update

I have just read what i wrote when I last posted about Dad going into respite for the first time. I was quite shocked at how stressed I sounded - Well we got him there. It felt awful, he was perfectly happy, hung his coat up and set off walking with one of the other residents. We felt at a loss what to do, we settled him in and left him tucking into his sandwiches which were for tea. He ate Egg Mayo, Tomato on cheese and corned beef without batting an eyelid! He would never have touched those things at home. Plain food thats him not 'bu**ered about food like putting tomatoes on cheese!!!!! We had a laugh about that. Mum had a great first week I think but has hit a bit of a depressed 'feel.' The highs and lows, the guilt and relief. the anticipation and dread of him coming home. We have taken her on a girly day shopping and lunch and she loved that, and she is happy with how dad has settled but its like holding your breath for the next hurdle. Dad fits in perfectly with the other residents which was a relief and the staff are lovely (no tying him down) how they can do the job is simply beyond me. One nurse said it was because they went home after a shift and weren't related to the residents so things that would upset me they just deal with. Thats not to say they don't care about their charges but it is a different emotion I think. Anyway next Wednesday is back home day so we'll see how he adjusts to being in a small bungalow after acres of space to walk around all day. Any one day at a time as I have read somewhere!