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Worse after respite

gjjh

New member
Jan 6, 2020
6
Hi everyone

My father in law came home from a week of respite today - it was such a lovely week!! However, he is so confused, asks me every 2 minutes what he is supposed to be doing. Appears to have forgotten his bedroom and that all the things there are his. He goes to his room and comes straight back own again to ask where his room is! He had been constant all night and now is finally asleep (although will be up and going through stuff through the night). I have sat here in tears. I struggled before the respite and I feel so stressed out by all this - am well out of my depth and then adding guilty to the feelings, as I know he can't help it!

My question is... will it just take a few days to settle back in, or this permanent?

Thank you xxx
 

totallyconfused

Registered User
Apr 18, 2016
421
This is smy fear with respite and why I have said no so far and feel if my mother goes in somewhere it will be permanent.

It took us so long to get her to move downstairs, get her settled etc, she still uses toilet(we take her frequently and she needs supervision)-I think this would all change if she went to respite.

I hope this is just temporary as must be very stressful
 

marionq

Registered User
Apr 24, 2013
6,026
Scotland
People react in different ways to respite. My husband had 4 spells in a great care home and ha no after effects at all. Unfortunately on his fifth stay he fell on day one and broke his hip with a catastrophic outcome but this fall could have happened anywhere.

If you have reached a point where you can't go on without a break then respite is the answer. Your FILs confusion will eventually settle down into general confusion because that is the nature of his illness. In the meantime I suggest you ask social services for a needs assessment to see if there is any help you can get with looking after him. I would also strongly suggest you look at daycare where he would have company and stimulation. If he continues to be distressed then you might talk to his GP or consultant about an anti anxiety or anti depressant to ease him over this period.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,651
Kent
It`s disorientation.

I found with my husband it wasn`t only a stay away from home, even a full day out confused him. He didn`t know where he was in relation to home and this made him anxious.

Respite does become necessary when the primary carer really needs some space and it`s a pity, for some, it almost needs rehabilitation when respite ends.

I hope your father soon understands where he is @gjjh and becomes less anxious
 

Avis

Registered User
Nov 2, 2019
106
I finally had t put my husband into respite when he developed a pressure sore and needed professional treatment. He was so heavy to lift and move that I was exhausted and often in tears. While he was there the facility assessed him and advised me to place him in permanent care as it was taking two or more people to shower, dress and toilet him let alone anything else. He misses me but other than that he is perfectly happy - it's me that has the guilt issues. Our doctor advised that I am physically unfit to keep him safe so that was the decider for me. Still feel awful about it though.
 

gjjh

New member
Jan 6, 2020
6
Thank you everyone. Am hoping he settles down a bit - I can't live like this for the long term!
 

northumbrian_k

Registered User
Mar 2, 2017
966
Newcastle
My wife used to get more confused after her respite stays but got back into her 'normal' state of confusion after a day or two at home. A visit by her son when he insisted on taking her out for to a gallery caused more confusion than a week's respite stay. People with dementia get confused in unfamiliar surroundings and ultimately even the very familiar becomes confusing and meaningless. This ought not to be a reason for not taking up respite if it is available and if the carer needs it. The person with dementia may come back more confused or - after a few days without having to deal with it - the carer may notice the confusion more. But the chance to stop being a carer, if only for a few days, and get some of one's old life back can do wonders for the carer.
 

Hazara8

Registered User
Apr 6, 2015
416
Hi everyone

My father in law came home from a week of respite today - it was such a lovely week!! However, he is so confused, asks me every 2 minutes what he is supposed to be doing. Appears to have forgotten his bedroom and that all the things there are his. He goes to his room and comes straight back own again to ask where his room is! He had been constant all night and now is finally asleep (although will be up and going through stuff through the night). I have sat here in tears. I struggled before the respite and I feel so stressed out by all this - am well out of my depth and then adding guilty to the feelings, as I know he can't help it!

My question is... will it just take a few days to settle back in, or this permanent?

Thank you xxx
Respite is often a precursor to actual residential care. But it does require thorough assessment of the individual and also the environment where respite is to take place. These " changes " in environment can be subtle and tricky, especially when the time comes to return home. The nature of dementia can make what seems like a " nice day out " a potential problem. By the same token it can be almost liberating ( especially for the carer who simply needs breathing space) in as much as the change is positive. My mother loved having a bath and would return home in a truly contented mood. But that was " day" respite and not " residential ". Unfortunately it was "emergency respite " which was the precursor of permanent residential care into which she entered and l would not wish that experience on anyone, ever.
Even what appear to be quite insignificant changes in environment or routine , can be major conflicts for the one living with dementia.
In the Care Home you can take a resident from an EMI unit into another room in which say a " sing song" is taking place. Then afterwards you return that individual to their usual place or their room and a pronounced unease comes about or even agitation. That simple move had a marked effect. All of this requires awareness and constant awareness. Respite too is much more than a " break" for the one who enters into it and who often cannot understand why they are so doing.
 

canary

Registered User
Feb 25, 2014
11,617
South coast
My OH went for a few weeks respite following repeated UTIs and failed discharge. He seemed to enjoy himself there, but I have noticed that since then he has forgotten how to do some things. However, he was forgetting how to do things before he went in, so Im wondering whether the difference is simply because I wasnt living with it 24/7 and didnt notice some of the more subtle changes. Some of the changes were due to him having forgotten the routine at home, but that was sorted within a few days.

Nevertheless, even if the respite had caused a downturn (and I dont believe that it does), without the respite I could not have carried on. The person with dementia does not trump the carer.
 

totallyconfused

Registered User
Apr 18, 2016
421
My OH went for a few weeks respite following repeated UTIs and failed discharge. He seemed to enjoy himself there, but I have noticed that since then he has forgotten how to do some things. However, he was forgetting how to do things before he went in, so Im wondering whether the difference is simply because I wasnt living with it 24/7 and didnt notice some of the more subtle changes. Some of the changes were due to him having forgotten the routine at home, but that was sorted within a few days.

Nevertheless, even if the respite had caused a downturn (and I dont believe that it does), without the respite I could not have carried on. The person with dementia does not trump the carer.

"the person with dementia does not trump the carer"

I wish someone had looked out for me over the years, that I had a person that would have said that to me.Its a lonely road, had very little support from family, especially in those days and im paying for it now with poor health.
 

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