Just need to spill.

[susy]

My dad has Alzheimer's but my mum who is his full time carer is declining in health herself. She has just had a UTI, not sure it's fully cleared but she had more antibiotics prescribed so hopefully this will help, however this has all knocked her for six. She desperately needs a break so I have arranged for a care home to come and assess my dad with a view to him going in possibly on Monday if he will be ok in a residential room. I think this should be fine as his needs should be well managed.
I just wanted to vent a bit. I feel as guilty as hell as I am the one arranging the care home. This is the thing that he said he never wanted to do. I know all the platitudes and I know that this IS the right thing to do but it really doesn't stop how I am feeling right now.
Let's just see what the care home says and deal with whatever happens after that.

 

[jaymor]

Is this care to be permanent or just whilst your Mum is having a short break?

If it is a short break then it is just like Dad has gone into a hotel, everything done for him and his needs covered while your Mum is away. Can you sell it to him in such a way?

If it is permanent care then that will be difficult but if permanent care is what is required then you have nothing to feel bad about. You are giving your Dad the care he needs and you are looking after your Mum too, so many times the carer gets overlooked and they end up needing care too.

Make a list of questions you want to ask the person assessing so that you are clear about the care on offer and you are satisfied, as much as you can be, that the care is acceptable to you.

 

[BONDJDY]

My dad has Alzheimer's but my mum who is his full time carer is declining in health herself. She has just had a UTI, not sure it's fully cleared but she had more antibiotics prescribed so hopefully this will help, however this has all knocked her for six. She desperately needs a break so I have arranged for a care home to come and assess my dad with a view to him going in possibly on Monday if he will be ok in a residential room. I think this should be fine as his needs should be well managed.
I just wanted to vent a bit. I feel as guilty as hell as I am the one arranging the care home. This is the thing that he said he never wanted to do. I know all the platitudes and I know that this IS the right thing to do but it really doesn't stop how I am feeling right now.
Let's just see what the care home says and deal with whatever happens after that.

Hello Susy ,my heart goes out to you know how awful it feels even though you know it is the right and only thing that can be done ,I had to tell my Mum she could not go back to her house she had dementia when I told her she would have to go into a NH she looked at me sobbed,said you have broke my heart I had to lie and say until you are better when I left her and went home I felt sick and to this day can still see her little face ,like your Dad it was the last thing she wanted ,but the hospital said I had to tell her ,I do hope he will settle after a while ,sounds like me you have no choice but the guilt never goes away always thinking I had come to take her home made me feel the worst daughter on earth ,my heart goes out to you xx

 

[susy]

Thank you for your kind replies. This is for respite care for now however I'm sure there will come a time that he will become a permanent resident.

 

[susy]

The lovely lady from the CH came out to assess him yesterday. I had emailed the social worker and she has spoken to her. The social worker explained his care needs before she met him and said residential would be the best place rather than the EMI part. This is the way we were all thinking too. The social worker just needed the go ahead which is happening. He goes in on Monday. He really liked the lady. He said he didn't need to go, didn't understand what this was all about but whatever. We sold it to him as a holiday, paid for by the government where he will be looked after and fed lovely food (he really isn't a fussy eater so he will be happy as long as he eats often).
So far so good.
I am working all day Monday but luckily my sister isn't so she is taking him in. I must say im feeling a bit cowardly about that because I am relieved it's not me taking him in. Im sure the carers will be brilliant at helping out and fingers crossed he settles.
I asked about visiting and she said it was up to us. I will go and visit when I can, work permitting, and see how he settles. Now my mum is hastily sewing names in all his clothes.

 

[susy]

Have been round the home today. It is a nice place, it is clean and warm and the carers look lovely.
I'm absolutely dreading this, totally and utterly. I know it is necessary but my dad is an intelligent man, he still is despite this vile disease and he is so going to know he is going into a care home. When I picked him up from daycare he cried on Friday, I know he is going to cry when I visit him, tears of relief that someone familiar is there and he will want me to take him home. This is so ****ing hard.

 

[canary]

Yes it is hard and you are probably right, but you need to make it easier for him. People with dementia are very good at picking up on body language, so if he picks up that you are worried or upset it will reinforce his sense that he has to get out. You need to go into the CH with a bright smile stapled on and a breezy "isnt this nice" attitude. Look round the garden, get him to show you his room etc and and make lots of complimentary comments (what a lovely room .... theres a good view from here ...... what a lot of nice people etc). Dont try and reason or argue with him when he says he wants to go home, try and deflect it with a cup of tea and biscuit or say that you will speak to someone (its a little white lie).
Keep your visit quite short, IMO half an hour for the first time is plenty, dont visit in the late afternoon/evening when he might be tired and/or sundowning - you might want to time your visit for just before the mid-day meal so that he has something to distract him when you leave. Make your good-bye short and sweet, or if necessary, say that you are going to the loo and just leave.
Then you can go home and have a jolly good cry.
xx

 

[susy]

Thanks Canary, good advice x

 

[susy]

I went to visit tonight to find him in front of the telly in his room shouting and upset. I calmed him down after he was saying how he didn't ask for this and he doesn't know why that woman (my mum) made him come here!!! He was OK after a bit and I made him a drink then settled him into bed before I left. He was calmer with me there and happy for me to leave. This is so hard.

 

[Shedrech]

So very hard, Susy
but you did well, coping with what he said and settling him to bed
you'll work out a routine and rhythm that works for you both
best wishes

 

[mancmum]

Try writing stuff on a memory board

My father also clocked where he was going for respite but stayed because it was for me to have a holiday. He was still able to beat all comers at draughts and seriously enjoyed eating.

We put a dry wipe board in his room.

"You are at Brook*** until XX. XX is on holiday with husband. You will go back to live at xx on date."

I know you don't need to be here but husband needs a break and this means daughter doesn't have to worry about you."

If he is able to still care about your mum turn it round. Say she's got flu, or something infections and she's fine but she needs to rest. Reassure that this stay is temporary because while he is intelligent he may not be able to remember that he will return home. Give times for breakfast, elvenses, lunch, tea, dinner, supper. Give him something mundane to worry about.

When my dad came home I found scribbled notes in his wallet one with his room number and three with the times of all possible eating opportunities. I sent some of his favourite treats with him.

 

[susy]

Well today is another day. I popped in at lunch time. He was calmer this time. He asked if I had come to bring him home. Oh this is the question I hate the most! He was at a table and being a little bit social with another couple of residents. I had put together some photos, one was of my mum, he loved that and was asking after her and was worried about her as she just does too much!!! So he is coming round to the fact he will go home and he is there to let mum get better. I left him looking at a history magazine is got him which he loved. He was happy
When my sister went after dinner, he was distressed again. He doesn't normally sundown so I don't think it's that, not sure what it is though. She calmed him down and he was ok again. (It was her turn to need wine tonight!) I went back shortly after she had gone and he was fine. I cleaned him up and put him to bed again. He would have done this all with the carer but it's nicer for me to do this. I guess it gives me some sort of closure.
Anyway, thanks for reading and thanks for the support. It means much more than you could ever imagine. This is one of the hardest things I've ever had to do. X

 

[looviloo]

Hi Susy, just wanted to give you a big {hug}. I know from experience how difficult it is to cope with a parent in a care home, who asks to go home, and whose mood changes from visit to visit, minute to minute.

You say your dad doesn't usually sun-down, but maybe the new surroundings are tiring him more than usual, so by the end of the day he is grumpy and has had chance to mull everything over?

Have you spoken to the staff to see how he is while you're not there? They might be able to reassure you.

Take care and keep posting x

 

[susy]

You might be on to something with the tiredness. He seems to be sleeping well but first night went to bed at 6.30, second 7,45 tonight 5.45!!! He was calm today and said he was ok there. He does want to go home but knows he can't at the moment but it's only a few days really until my mum is better. He was simply tired so when I took him to his room he went straight to bed. That's ok though he will sleep through I think. If he wakes early the carers are so lovely, they will make him tea and give him toast and he will settle.
It's good to have positive days isn't it.
Thank you all for your support it really means so much. X

 

[susy]

Today was generally a good day. First I went and my dad had slept since 6pm til I'm not sure but he missed breakfast but that was ok cos he had 3 lunches to make up for it
When I saw him he was in a day room with others (he is generally a loner) he was glad to see me and wanted to go home again and was upset. I held his hand and jollied him along (it's amazing what you can do with a game face on!) he wanted me to stay with him and I could so I did. We had a lovely (incredibly repetitive) conversation but I'm guessing because he is where he is I'm much more tolerable of this. He wanted his dinner so I found a carer and she said she would take him for dinner, I went down with him, the carer was 100% wonderful with him. I left him happy to go for dinner. My sister went in afterwards and settled him into bed, early again but hey ho! It how he rolls in there I guess.
The best bit is that my invisible is coming to help and become visible. I'm guessing my truth and whole truth approach to life has struck a chord. This is great news. A burdon shared is much less heavy.
Much love and good wishes to all out there xx

 

[susy]

Just an update. My mum is well rested and my dad came home yesterday. Last week he became very distressed he was shouting at all the staff and becoming very rude. He shouted at my sister too. He really was angry that he was put there and he wanted no demanded to go home. Very upsetting for all.
All forgotten now, he know he was somewhere else but that is rapidly diminishing. I think 2 weeks is too long for him for respite but the care home insist that 2 weeks is better. I will have to have a chat with them again. Care has to be individual and although this time it was the right length of time for my mum it wasn't for my dad. Although he has this disease he is still intelligent. Hard isn't it.
Anyone else out there whose respite places insist on 2 week placements??

 

[Shedrech]

Hi susy
I'm glad that your mum has really felt the benefit of the respite - the home sounds to have really tried to make it a good stay for your dad too, so looks as though you've found a good care home for any future respite and forged positive relationships with the staff, which must settle your mind
it must be tricky balancing the needs of each parent; your mum balancing her need for a real rest and her husband's long term care needs - I'm tempted to think that, although your dad was restless he was safe and looked after, so although 2 weeks is quite a time for him, it does sound that your mum needs 2 weeks if she is to continue to care for her husband and not burn out - I guess you'll all have to see how things go from now
I hope the now visible one continue to be part of the team too

I have no answer to your question as dad went from his house into permanent care, so we didn't have any respite stays

best wishes to you all

 

[susy]

Hi Shedrech, the home is lovely and the staff were wonderful. He was looked after really very well and yes this would be a place for him to go to long term if needed. We must get his name down so we can keep him somewhere near the top of any list that will form ultimately. I know this sounds bad but I really hope he "goes" before this becomes a reality.