I won't go!

[Rosalind]

I've raised the subject of respite on this forum before. I have to go away next week, and husband is now not capabable of surviving at home with home care. At first he demurred, but then agreed to go to a local care home for a week. He has been taken to see it, and signed the paperwork. He is due to go in on Monday. I leave Sunday morning, but a neighbour is giving him dinner and his Alz Support befriender is taking him in on Monday. Last night, he said he absolutely would not go. At his age, he wanted to sleep at home, not go somewhere where he did not know anyone. This is a man who travelled for a living, and is very sociable.
Very ugly scenes ensued. I am going on a course that could bring us in an income after four very lean years, and it is something I not only really want to do but have now invested a considerable amount of money in. I do everything for him, and all I am asking is for him to face the fear and put up with one week in a different place to the one he is used to.
I'm not sure I can hack this much more. I gave him the stark alternative of co-operating, and giving me some support, or I would start divorce proceedings. That would mean the house he so wants to stay in being sold, me buying somewhere smaller, and him going into care full time. This may sound cruel, but it is actually now getting near the truth.
I am sure when he gets there the home will not be the hell he imagines, but am now desperately on edge and worried, as I see action replays of the horrors of last night happening over and over again between now and Sunday, and even then when I set off for the airport I will not be certain he will go, although he will probably behave better with Philip from AS than with me. He just is not safe on his own at home. What do I do?

 

[Amy]

Rosalind,
It's hard, but you have to stick to your guns.

all I am asking is for him to face the fear and put up with one week in a different place to the one he is used to.

Obviously something that your husband would have done easily, prior to his illness, but sounds now as though facing it in advance may be too much for him.
I think if I were you,(and I'm not, and it is my mum who has dementia), I would get myself prepared for the trip, pack my husband's things, (and keep the bag out of sight) and hope that if I don't mention it his anxiety calms. Is there any chance of getting his befriender round this week, just to be there as a calming influence if your husband needs to express his anxiety?
Would it be possible for your husband to go into the care home on Sunday; just thought it might be easier for you if you knew he was settled?
Thinking of you. Let us know how things are going. It is obviously going to be a difficult few days for you, but you know where we all are!
BFN. Love,
Amy

 

[Brucie]

Hi Rosalind

This is an awful time for those of us who have to make passage through.

Your husband is not just being difficult, he is probably scared stiff, and when you are like that, you put your claws into the woodwork and just hang on where you are.

Things are difficult enough for someone who has dementia, trying to keep a grip. When multiple things happen, all at the same time, it becomes so, so difficult for them to cope.

I'd reckon that, had you been able to take him in yourself, a few days before the day that is planned, then he might just have been okay with that. [no chance, I suppose to advance his start date for respite?]

As it is, a stranger - albeit a well-known neighbour [for even we, the partners, become strangers over time] is providing a meal, then there will be a night without you - and another stranger [even a known befriender] is taking him away from home to a strange place [even though he has been there before - home will be a strange place at some stage, too].

Final thing - in his mind he may believe you are leaving him... for good. The first time I took Jan to the assessment centre, she said to me as we drove down the M3, "is this far enough away from home? Are you just going to leave me here?"

I only say all this to illustrate the situation that you probably know all too well.

There are times when we just have to believe we are doing the right thing.... and then do it. Clearly this is the case for you.

Take your flight and your course. It is important for you. Philip will manage.

Best wishes, I so feel for you.

 

[Rosalind]

Thanks to you both. I have asked him if he thinks I am abandoning him for ever, and the CPN also raised this - we both told him that the bed he is getting is one for respite only, and there is no question he could have it for any longer than a week. I have also bought tickets for a lot of things happening at the Devizes Festival the week afterwards, and have written these events up on our calendar, so he can see there will be trips to see Andy Hamilton etc after the week. This morning he has once again agreed to go, and I will indeed pack his case furtively. I'm not sure he is worried about the neighbour - she is coming in to feed the cats, and I have asked him to show her where everything is when she comes to collect the fish pie I have cooked for them (she gets back from holiday that morning).
Sadly, bookings at the home have to be Monday to Monday, otherwise I would certainly have taken him in earlier.
I am hoping that this is like first day at nursery school, and once I am out of the picture he will go along with what people suggest. The neighbour had a mother with Alzheimers, and understands. Please God he will actually like the respite place, as I have hopes for a week's holiday in a month or so, and don't think I can face this rigmarole again. Also, the CPN wants to introduce him to the day centre at the care home, as once I start working again he should have some daytime care on a few days a week, rather than mouldering at home alone.

 

[Michael E]

Rosalind hi,

I think you really must stick to your guns as well. You have a big financial and emotional investment in this course. It will benefit you both and it AD is certainly a sickness that costs more and more money as it advances so it is essential you go.

Sometimes when I get in similar 'conflict' situations I have played the 'crying card' - when the disagreement has arisen I have become totally despondent, broken, cried and appeared so hurt and given up all hope... required sympathy and so on... Has worked and and put the emotional pressure on my wife and she has been so sorry she has agreed. Of course she then forgot she had agreed - sort off but I was able to put off the conflict and wait until the 'day' and then get into a 'right here we go mode' it's what we agreed... works some of the time! (also I did train as an actor - downside, I gave it up as I was not that good!!)

It is so ingrained in us all to 'agree' things in advance, to discuss, to be 'fair and reasonable' and I really question if that is truly helpful. Given that our 'partners' cannot remember agreeing, cannot appear to follow logical steps in an argument or disagreement there seems little value in going through the process too often.... I think.

I am so sorry for you - it is a dreadful situation - be brave and break a leg!

Michael

Our posts crossed - sounds like you have it more or less under control - well done and good luck. M

 

[Margarita]

Brucie said

Final thing - in his mind he may believe you are leaving him... for good. The first time I took Jan to the assessment centre, she said to me as we drove down the M3, "is this far enough away from home? Are you just going to leave me here?"

When my mum went to her first respite ,she keep saying things like ,don’t take my bed away leave it hear , you well pick me up take me back home

Must say her first reaction was that she was adornment that she was not going all hell broke out between us .

I made the mistake in telling her a week before was due to go to her first respite so it was a stress full week & i thought was it all worth it for just a week ? (yes it was ) I was worried also that she would not like it that the care home could not cope with mum .

As the days went by she still keep on about her bed & was very anxious ,I had to do a lot of reassurance that I still loved her & how better I feel in having a break & of course she be coming, home then when the day came she went & settle in ok , because she new I was coming back & all that worry on my part for nothing , I phone her once to see how she was getting on & she was fine, just ask when was she coming home.

So I learn not to tell her until a few days before the next respite.

I am telling you this, so you know you’re not alone on this issue.

 

[Margarita]

Brucie said

Final thing - in his mind he may believe you are leaving him... for good. The first time I took Jan to the assessment centre, she said to me as we drove down the M3, "is this far enough away from home? Are you just going to leave me here?"

When my mum went to her first respite ,she keep saying things like ,don’t take my bed away leave it hear , you well pick me up take me back home

Must say her first reaction was that she was adornment that she was not going all hell broke out between us .

I made the mistake in telling her a week before was due to go to her first respite so it was a stress full week & i thought was it all worth it for just a week ? (yes it was ) I was worried also that she would not like it that the care home could not cope with mum .

As the days went by she still keep on about her bed & was very anxious ,I had to do a lot of reassurance that I still loved her & how better I feel in having a break & of course she be coming, home then when the day came she went & settle in ok , because she new I was coming back & all that worry on my part for nothing , I phone her once to see how she was getting on & she was fine, just ask when was she coming home.

So I learn not to tell her until a few days before the next respite.

I am telling you this, so you know you’re not alone on this issue. Have faith in yourself that all will be ok (easy said then done I know

 

[Kriss]

Hi Rosalind

I guess it all depends on the individual and how far along the path they are but I can remember comparing notes here some time back and we likened it to the leaving of a child at nursery or playgroup with all the screams and tantrums only to peek through a window as we left to see previously traumatised child with head in a bucket of toys!

You have prepared the logistics and I personally would be inclined to not even raise the subject again until you are off out of the door. A reassuring hug and a positive "see you in a few days when we will do...." before turning and leaving as smartly as possible. It will hurt like hell but you have done everything possible and for all of the right reasons so you have to switch into your own auto mode and leave others to do their bit.

You will probably return to hear that he put on a brave front for your friend without giving him any of the treatment that you would have had.

Good luck with your course!

 

[DickG]

Hi Rosalind

We are in a similar position, Mary only wants to be at home with me and to try and reason with her is futile. I can only repeat what others have said, stick to your guns - easily said but....

Hugs

Dick

 

[Norman]

Hi Rosalind,Dick g and Micheal

my wife would never agree to take respite in a home.
My wife would refuse to go to day care.
We do now have sitters come and stay that I may go out for some time,that was awkward at first but it is now accepted.
I have reversed the respite care!!!
I am going away and we are having a sitter stay in the house for 4 nights and 5 days.
The sitter is known to my wife and this was set up with the help of my new social worker.
I only have one problem now!!
What white lie can I use for being away?
Norman

 

[Rosalind]

Mother's ruin

I have now deduced that part of the cause of the outburst was a very considerable lowering of the level of gin in the bottle. He had drunk quite a lot in the week running up to going into hospital, not sociably with me but when I was not around, probably to cheer himself up.

Since then I hid the gin in another cupboard, and doled out sensible amounts when required. But the day after the outburst, when I had been out on a job, I came back to find him out for the count at 6 p.m. Did not realise he had been at the gin, and we shared a bottle of wine with dinner. Half way through I realised he was absolutely blotto. He said he was going to bed, bent over to give me a kiss, and completely missed.... Then tottered off, swaying abnd lunching. The previously hidden gin bottle was back in the drinks cupboard, much depleted.
The AS befriender, who is a star, has said he will get him to respite place if he has to put him under his arm and carry him, and we have not had any more tantrums, so I am not discussing it, and keeping fingers crossed. Will report back after the event.

 

[Rosalind]

white lie

Norman, your posting crossed with mine.

Did you ever have to go away earlier in your marriage, due to work or whatever? You could probably say you were going to do something that you did 30 or 40 years ago, along the lines of 'I have to go to Glasgow to that factory again for a few days' and so long as it was something familiar that might work?

good luck

Rosalind

 

[Amy]

Good to hear you sounding so upbeat Rosalind, from the advice you gave Norman, you are obviously getting prepared for future white lies!! Go on any courses or conferences Norman? When you get your respite are you going anywhere nice? (We won't tell Peg, promise.)
Love Amy

 

[Canadian Joanne]

Rosalind,
Sounds like you might have to lock up the booze! Since alcohol can make the best of us stroppy at times, my mind boggles at the thought of AD & gin!! Thank God my mother was never a drinker. Me, on the other hand........ never mind.
Joanne

 

[Bets]

Hi Rosalind,

Just to wish you all the best for Sunday. Good luck with the course and your new project.

Re the demon drink - spirits are now a rare occurrence in our house and my husband doesn't seem to notice. But wine is a different matter. I have to keep that in my bedside cupboard! I then decant some every evening (diluted with soda water) for him to have with dinner. Otherwise he would (and has) get through a bottle of wine in an hour or two.

Bets

 

[Jann]

I too want to wish you all my best for Sunday and hope you have a well-earned break. I also hope things go smoothly for you.
Jan

 

[Rosalind]

Thanks everyone. I took his medicines into the home today, and must say I am not sure I would want to stay there - lots of old women asleep in chairs. The CPN said it was her second choice, and that next time there was another place more suitable for memory problems. Still, it is only a week, and it might make him appreciate me a bit more!

Am now doing the most enormous pile of ironing of things that in the end I will decide not to take....

 

[LindaD]

Alcohol

Mum always used to love her wine - member of a wine club and could talk knowledgably about it. But in the end we had to stop or limit her intake as It always made her far worse. You could see it in her eyes when she "went" after only a couple of glasses of wine and she wasn't with you any longer.

Very sad as I still find a few glasses of vino a tremendous help!