First time respite - one week

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
I care virtually full-time for my Dad who has mixed dementia. I stay with him - and my own home home is 150 miles away which I get to visit for a long weekend when my younger sister does a 'stint'. She too lives over 100 miles away and, unlike me, works full-time.

After a year from hell last year (as well as caring for dad, my middle sister died after a long very disabling illness), I'm pretty knackered.Dad has a very 'on the ball' care manager and she has arranged for Dad to go into respite for one week, starting this Thursday. This will be his first time in respite care.

I'm terrified it makes his dementia worse - but am rational enough (just!) to know that I need that time away. And also, with a fair wind, he may well be OK. Dad's pretty stable, with kindness and support, he might even enjoy himself at times. I suspect (hope?) he will enjoy the company.

I haven't told him yet - as he'll only forget - but equally he's aware enough for me not to spring it on him on thursday. So, later today, I will rase the subject. The plan is to phrase it that he'll really help me by doing this - and that they will also be able to keep a close eye on his awful rash (recent diagnosis chronic urticaria).

Has anyone any tips on how to help smooth this process? Or an experience of respite that has worked out well?

I've heard from a number of people about how good the facility is that Dad is going into - from the staff to the food, so I do really believe he's going somewhere that will care for him well.

It doesn't help my guilt though.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Well that went well - NOT!

Dad can be mule-like at times, and today proved to be one of them. He's quite adamant that he will be fine at home, with the support he has (three care visits a day and a very good friend who is 86!!). Perfectly happy, he said, for me to be away a week - he'll be OK.

I could see he wasn't for changing his mind when we talked, so I've left it for now. Ironically, when he was so unwell earlier this year, he'd probably have gone along with what I suggested - but he's feeling more robust, and is more 'with it', and therefore thinking more about things than he's been doing recently.

So I'm in a quandary....just don't know what to do for the best. I'll revisit the subject of respite again this evening and see if anything's changed. It was a bit like this when he needed his skin graft - initially he said no, but then reached a point where I genuinely believe he consented, if only to forget subsequently. So maybe, the same will happen again here. But so hard to call.

Anyone else experienced a PWD refusing to go in to respite care?
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Well that went well - NOT!

Dad can be mule-like at times, and today proved to be one of them. He's quite adamant that he will be fine at home, with the support he has (three care visits a day and a very good friend who is 86!!). Perfectly happy, he said, for me to be away a week - he'll be OK.

I could see he wasn't for changing his mind when we talked, so I've left it for now. Ironically, when he was so unwell earlier this year, he'd probably have gone along with what I suggested - but he's feeling more robust, and is more 'with it', and therefore thinking more about things than he's been doing recently.

So I'm in a quandary....just don't know what to do for the best. I'll revisit the subject of respite again this evening and see if anything's changed. It was a bit like this when he needed his skin graft - initially he said no, but then reached a point where I genuinely believe he consented, if only to forget subsequently. So maybe, the same will happen again here. But so hard to call.

Anyone else experienced a PWD refusing to go in to respite care?
My husband will go in for two weeks respite next month which is the third annual respite. I tell him when I arrange it that we are both going to have a break then don't mention it again until we are packing up to go or in the taxi. I write in large letters on A 4 "Marion will be back to take you home on the ........" And tape that to his wardrobe door in the care home. I want him to see he is not abandoned but I would not give up this break for anything. The prospect keeps me sane.
 

little shettie

Registered User
Nov 10, 2009
221
0
Well that went well - NOT!

Dad can be mule-like at times, and today proved to be one of them. He's quite adamant that he will be fine at home, with the support he has (three care visits a day and a very good friend who is 86!!). Perfectly happy, he said, for me to be away a week - he'll be OK.

I could see he wasn't for changing his mind when we talked, so I've left it for now. Ironically, when he was so unwell earlier this year, he'd probably have gone along with what I suggested - but he's feeling more robust, and is more 'with it', and therefore thinking more about things than he's been doing recently.

So I'm in a quandary....just don't know what to do for the best. I'll revisit the subject of respite again this evening and see if anything's changed. It was a bit like this when he needed his skin graft - initially he said no, but then reached a point where I genuinely believe he consented, if only to forget subsequently. So maybe, the same will happen again here. But so hard to call.

Anyone else experienced a PWD refusing to go in to respite care?


Oh yes! Been there right where you are. We bought mum to live with hubby and me when my dad died. Two years down the line, I just couldn’t cope. Mum had a week long meltdown and so did I. Anyway respite care for arranged for two weeks. I couldn’t tell mum as she used to get quite hysterical over anything like that, always adamant she could look after herself, which she couldn’t of course. I just literally took her out the day of respite and drove to the home. She was fine, even when we got inside she didn’t seem to realise where she was. I unpacked her things while the Carer made her a cup of tea. I told mum I was working and would be back later. I drove home in tears, fretful that no one could look after mum the way I could and yet so desperate for a break. Sadly mum has a fall and broke her hip, just six hours later! Now I tell you this not to frighten you, as mum had lots of falls even when living with us but after her hospital stay, I got her readmitted to a different care home that a friend had recommended. It was lovely, caring staff, good food etc. Mum was only going to be there a month to recouperate but stayed for six months! Silly me, I brought her home after that but her dementia was so much worse I did the wrong thing completely. Just three weeks later she went back to the home. I felt awful and cried for hours. But, mum has got stronger, she has company, the home is one of the best I could’ve chosen for her and now 18 months down the line I’ve got my life back and our relationship is lovely as I can visit her, hug and kiss her, spend time doing her nails and chatting and reminiscing, but come away knowing she Is very well cared for and I’m almost back to normal. Please don’t worry, Dad will be fine, that’s what I want to tell you. Do what you have to do to get him there, pack some familiar things for his room and you go and have a well deserved break. Your own health is important, and as Carers we’d give so much of ourselves that in the end it takes its toll. Take the breaks whenever you get the chance. Xx
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Please could you all read my latest thread and give me some advice on this as well,

Thankyou very much

MaNaAk

PS: I hope that dad won't think I've abandoned him.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Thank you for the responses above. Just proceed as planned with no fuss, really seems to be the way to do it. I can see why but Gulp! nonetheless

My fear is that we'll get there and he'll just refuse to get out of the car. It's the weird thing about his most recent illness - it's almost as if the meds prescribed for the urticaria have helped his brain slightly. He's definitely perkier and sharper than he's been in months. Nothing miraculous, but noticeable. Some of the things he said this afternoon when we talked about respite surprised me i.e. 'you clearly don't think much about my friends' (he calls the carers his friends) ability to care for me when you're away.' Whoah - where did that logic come from?

Well, tomorrow's another day and Dad's forgotten today's chat as far as I can tell. I'll keep you posted. I'll label his clothes as planned and get his very good friend D to try and help me. No more discussion with Dad as dementia usually wins, even with the current 'improvement'



Your own health is important, and as Carers we’d give so much of ourselves that in the end it takes its toll. Take the breaks whenever you get the chance.

That's what I'm going to try and focus on. It's so true... and I know my poor body needs it. I just wish it wasn't so stressful to try and achieve it.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Well, a bit of a breakthrough today.....

When Dad came back from his afternoon outing with his good friend, he seemed to be keen to help me. (I arrived back at the same time, lugging shopping) He asked a couple of times how he could help after we'd sorted the shopping out, so I decided to bite the bullet.

'Actually, dad, there is something........' and off we went from there.

He had no recollection of yesterday (I think) - but this time around he responded much more openly. He still said he'd prefer to spend the week with his good friend D - but she chose that moment to ring, and forewarned, said she wasn't really up to doing that anymore, but that she'd defo be taking him out as usual.

So as things stand, he's grudgingly agreed to go 'on holiday' in the home for a week. He's due in thursday afternoon, so we'll pop up there tomorrow morning - and hopefully that will reassure him a bit. But I'll only do the look-see if I still think it'll be helpful. It certainly would have been this pm, but tomorrow is another day in dementia land.

I'm finding it strangely tough dealing with this more robust Dad who's more 'with it' than he's been in months - it's such a balancing act on a very narrow tightrope. I love seeing him more like his old self who enjoyed life despite the dementia - after 4 or so months of one viral illness after another. But with his increased awareness of what's happening around, it's hard to judge what to say sometimes.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
I'll just keep adding to this thread, documenting the respite 'journey'.

So, today, we made real progress. I wasn't sure about taking him on a recce to the home, but it seemed to be bothering him that he didn't know where he was going, so I decided to risk it.

So glad we did the visit! We went as a trio - including dad's very good friend, D. The staff couldn't have been more helpful and soon had dad responding to them. By the end he was asking me when it was he was going to be staying there and pretty relaxed about it.
I just pray this carries over 'til tomorrow.

But it was so reassuring to see how the small unit worked. It's a large home but has distinct units. Dad will be in one with just 10 beds, their own little dining room, quiet area, lounge and staff who are trained to deal with respite situations. Plus there's a lovely garden for residents to potter around.

Fingers crossed! I can't quite believe I'm going to get away for a week and not have to worry about Dad, knowing that he's as cared for as he could be.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Fingers crossed! I can't quite believe I'm going to get away for a week and not have to worry about Dad, knowing that he's as cared for as he could be.

I should have known that life with dementia is never without its twists and turns.

We got up there as planned yesterday afternoon but got an awful lot of 'I didn't know I was staying', 'it would have been nice if this had been discussed with me beforehand' etc...

But after an hour or so I thought I should head off - not least as I had a 3 hour drive ahead of me. I was bit worried I'd left him alone in the room, but hoped that staff would be in with him once I'd said I was off.

Of course, my drive down was pretty much populated with mulling over the whole respite thing - no great anticipation of my own holiday.

And then at 10.30pm I phoned the home and spoke to one of the night staff. She told me that when she'd come on duty she'd found Dad in the hallway, bag packed, jacket on, announcing he was off home. Thankfully from all she described she was able to settle him and when she next went back to him, he had his pyjamas on and was en route to bed. I haven't phoned yet for an update - pretty much hoping that no news is good news.

But it just made me really upset. It's so hard that my own need for a break has to result in such turmoil for Dad. He's so enjoying his own garden at the moment, his routine works well for him at home where he knows where everything is - and now he's uprooted for a week, so I can have a break.

Currently feeling like a really selfish daughter.
 

Rosie7

Registered User
Oct 30, 2014
36
0
Well, a bit of a breakthrough today.....

When Dad came back from his afternoon outing with his good friend, he seemed to be keen to help me. (I arrived back at the same time, lugging shopping) He asked a couple of times how he could help after we'd sorted the shopping out, so I decided to bite the bullet.

'Actually, dad, there is something........' and off we went from there.

He had no recollection of yesterday (I think) - but this time around he responded much more openly. He still said he'd prefer to spend the week with his good friend D - but she chose that moment to ring, and forewarned, said she wasn't really up to doing that anymore, but that she'd defo be taking him out as usual.

So as things stand, he's grudgingly agreed to go 'on holiday' in the home for a week. He's due in thursday afternoon, so we'll pop up there tomorrow morning - and hopefully that will reassure him a bit. But I'll only do the look-see if I still think it'll be helpful. It certainly would have been this pm, but tomorrow is another day in dementia land.

I'm finding it strangely tough dealing with this more robust Dad who's more 'with it' than he's been in months - it's such a balancing act on a very narrow tightrope. I love seeing him more like his old self who enjoyed life despite the dementia - after 4 or so months of one viral illness after another. But with his increased awareness of what's happening around, it's hard to judge what to say sometimes.

Hi Amelia
Firstly you really really are not selfish. Your post rang of lots of bells with me. Dad has lived with
me and my husband for 4 years now. Having not had more than a night away for the first two years we started using respite. We have used the current care home 5 times in the past 18months. Dad is due to go back in about 3 weeks for a week. The first few times i got very wound up about telling Dad and how it would all go. I have found this method works for me and Dad at the moment. I mention it to him a fortnight before. Dad has no idea he has anything wrong with his memory so I play it that its good that he has people like nurses on hand in case hes feeling unwell at his age 84. His first response is usually that he will probably go home instead. I just leave it at that. The next time i mention the week before i say as we talked about last week its next we are going away so i'll take you to the care home using its name not the word care home. He usually says ok. I then mention it again about 2 days before but only in passing no in-depth talk about it. In the morning of the day I help him pack he's normally not that happy but i just maintain an up beat demeanour . When we get there its only minutes away the staff are brilliant everyone he meets greets him by name and says its nice to see him which helps. I help him unpack have a coffee with him and then go . I don't phone at all while I'm away I leave all my contact numbers and tell them to phone me day or night with any problems. They never have. I also have the woman who I pay to keep him company a couple of hours twice a week while I'm at work to visit him while he's there.
Last time Dad went both the home and the woman visitor said he was much more relaxed this time. The first few times he packed every morning to come home. But they are use to coping with that. We took Dad away for a few night at Easter and every morning he had packed to come home.
Its hard but please persevere.You have to look after yourself too. I still get anxious about it but not as much as I did.
xxx
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
We managed to get mum into respite at the home where she went for day care. She knew the staff, knew the residents/other day care clients. It is an excellent home and on the first day she went for day care she was greeted by her first name, come and have a cup of tea, and the phrase 'we are going to have some fun.' That hooked her.
Of course there were a few tears and worries but the staff overcame them. I continue to bang on about this in other posts but they are the professionals, I'm not. By the end of each of the numerous respites she took she was as alert, if not more alert, than when she went in for her 'holiday.' They got her to knit, do crafts, etc (the men I noticed were more keen on taking motors to bits or making things!), which she would not do at home. Her English and quizzing was still excellent so she tended to do well all the quizzes, benefitting her self esteem. I could go on.
I found the best way was not to mention it at all until the night before (by morning she would have forgotten) and then reinforce it on the morning and engage mum in helping me put all her things together for the suitcase. Usually I told a few love lies - I am going to my friend's wedding in France; I have to go to xxxx for work for a few days.
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Thank you for these different accounts of respite that you've shared. I really appreciate the detail.

So : One week on and we're both back home.

By all accounts Dad settled after his first night. His grand-daughter visited several times, and his dear friend D took him out as they normally do. When I got back today he was already home - his grand-daughter had picked him up and he gave me a big bear hug when he saw me.

I didn't call the home when I was away. I knew I just needed to switch off and it was so good not to have to worry about his welfare whilst I was away. The sheer relief of being free of that responsibility for a short time! I got out to France for a few days, met up with several sets of good friends and then, all too soon, it was over.

Dad's been a bit confused today. All evening he kept saying he needed to phone the 'nice people' to say he wouldn't be back tonight. He totally knew he was in his own home but no matter how much I reassured him, he kept returning to the subject of phoning them. An Il Divo concert helped distract him - Dad loves music! And then about 10 pm announced that as it was so late, he'd better stay.

So, all in all, I think it's worked out OK. His dementia hasn't deteriorated which was my really fear - the staff said he'd been fine and he himself seemed to have enjoyed his time there.

Hopefully tomorrow he'll be more settled after waking up in his own bed.

Phew!
 

Graybiker

Registered User
Oct 3, 2017
326
0
County Durham
Sounds like it was a success. Your dad has come to no harm, he and the home coped well, he wants to thank the nice people? That’s great!
You did the right thing not ringing the home, being relieved of the burden of responsibilty, just for a short time, is such a relief and should be enjoyed.
I hope this experience has helped settle your mind regarding future respite and care, sounds like you did really well. I’m sure he’ll settle back into his normal routine soon. In the meantime, I hope you feel better after your break
Take care
X
 

Amelie5a

Registered User
Nov 5, 2014
122
0
Scotland
Thanks Graybiker.....you're spot on with your recap. Yes, it was a success - I was kind of missing that with all the anxiety which hovered around the prospect of first respite. And I do feel better.

Certainly next time, I'm not going to be anywhere near as fearful (and there is a next time already planned - for longer).

And two plus points this morning:

- dad's had a shower! Whoopee
- and earlier he called up the stairs 'do I have to go back to those people today?' 'Nope', I said, ''you're staying home'. this was greeted with an affirmative 'Good'. Hopefully that's bye-bye to his need to ring them.

Last Friday I so very nearly didn't go abroad, but so glad I went ahead with the original plan.
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
So glad Amelie5a that it all went well. It is a worry at first but with a good respite home and a holiday it has obviously rejuvenated you. So go for it and book some more holidays now that you know he is cared for and enjoyed his time away.