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Which way to turn?

Margeaux

New member
Dec 27, 2020
9
0
My husband, aged 63, has recently become more confused , particularly during the night. He couldn’t find his way back to the bedroom and was very distressed. Yesterday, we arrived in a hotel where he used the bathroom floor as a toilet. He also did this last week in our home bathroom. I frantically managed to clean up the mess and bought disinfectant from a local store. My parents , both in their 80’s, are with us and v v supportive. I feel so guilty that they have to help me to manage him. I can no longer leave him alone. He has day care whilst Im at work, ((Im in a v demanding job, which I love), but I fear this isn’t enough. Any thoughts and advice?
 

kindred

Registered User
Apr 8, 2018
2,739
0
My husband, aged 63, has recently become more confused , particularly during the night. He couldn’t find his way back to the bedroom and was very distressed. Yesterday, we arrived in a hotel where he used the bathroom floor as a toilet. He also did this last week in our home bathroom. I frantically managed to clean up the mess and bought disinfectant from a local store. My parents , both in their 80’s, are with us and v v supportive. I feel so guilty that they have to help me to manage him. I can no longer leave him alone. He has day care whilst Im at work, ((Im in a v demanding job, which I love), but I fear this isn’t enough. Any thoughts and advice?
Welcome and you will find great support here. Have you had any contact with social services to get an assessment yet?
When you say that you fear the day care isn’t enough, were you wondering about residential care?
Perhaps tell us a little more.
Warmest kindred
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,138
0
Kent
It`s heartbreaking to hear of any diagnosis but even more when the person with dementia is so young.

I would advise you get as much LA support as possible @Margeaux . Your parents will not be able to manage your husband for ever so better get the help sooner rather than later.
 

Izzy

Volunteer Moderator
Aug 31, 2003
65,194
0
70
Dundee
I’m so sorry to read about your situation @Margeaux. It’s really heartbreaking.

LIke others I hope you are managing to access as much support as possible. It might be helpful to put your postcode into the link on here and see what might be available in your area -


If you haven’t done so already I think it would be timely to have your husbands care needs assessed - or re-assessed if this has already been done. This factsheet might be helpful -


Do keep posting here. You will get lots of support from members.
 

karaokePete

Registered User
Jul 23, 2017
6,256
0
N Ireland
Hello @Margeaux

My wife was also diagnosed in her early 60's and she too developed problems with finding the bathroom at night. I solved the problem by leaving a light on at night so that she could find the bathroom in the dark. I know others use lights activated by sensors and such things for that same purpose.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,665
0
Yorkshire
hi @Margeaux
it may be that the change in environment is confusing your husband more .... and don't be concerned about letting the hotel staff know about the 'accident', they will have met this before and their cleaning routines will cover it

however you do say that this happened at home too, which will be disturbing your nights ... that is when home carer visits cannot help ... and for you, having wakeful nights is going to impact on your work during the day

you have day care in place to cover the days you work (4 I believe) and increasing that plus adding in home care visits on all days, so you are given time away from the hands on care, may help .... or consider a live-in carer/PA, though that's expensive (remember any payment of care fees should come from your husband's money only ... if night's are disturbed, look into applying for higher rate Attendance Allowance)

you say you cannot leave your husband on his own, so even when you are not working, you are not able to relax ... and that wouldn't change were you to give up work (which I do not recommend; you need and have a right to a life of your own)

to be honest, when the confusion causes disturbance at night, so the carer isn't getting enough sleep to cope during the day, is one factor that often signals it's time for the support that residential care provides .
 

Margeaux

New member
Dec 27, 2020
9
0
hi @Margeaux
it may be that the change in environment is confusing your husband more .... and don't be concerned about letting the hotel staff know about the 'accident', they will have met this before and their cleaning routines will cover it

however you do say that this happened at home too, which will be disturbing your nights ... that is when home carer visits cannot help ... and for you, having wakeful nights is going to impact on your work during the day

you have day care in place to cover the days you work (4 I believe) and increasing that plus adding in home care visits on all days, so you are given time away from the hands on care, may help .... or consider a live-in carer/PA, though that's expensive (remember any payment of care fees should come from your husband's money only ... if night's are disturbed, look into applying for higher rate Attendance Allowance)

you say you cannot leave your husband on his own, so even when you are not working, you are not able to relax ... and that wouldn't change were you to give up work (which I do not recommend; you need and have a right to a life of your own)

to be honest, when the confusion causes disturbance at night, so the carer isn't getting enough sleep to cope during the day, is one factor that often signals it's time for the support that residential care provides .
Thank you for your response. I am exploring respite care as I am desperate for a break. I have a few weeks school holiday and will use this time to consider options . It is so kind of people to listen and advise.
 

Margeaux

New member
Dec 27, 2020
9
0
Hello @Margeaux

My wife was also diagnosed in her early 60's and she too developed problems with finding the bathroom at night. I solved the problem by leaving a light on at night so that she could find the bathroom in the dark. I know others use lights activated by sensors and such things for that same purpose.
Thank you. I have put several lights on around the house now. Unfortunately, things have regressed and I now need to assist him with toiletting.
 

Rosettastone57

Registered User
Oct 27, 2016
1,591
0
I think as others have said, this may be the tipping point for full time care. I'm sure that's not what you want to hear, but the night time confusion, the fact he can't be left, all indicates he needs 24/7 supervision.
 

Sandy47

Registered User
Aug 14, 2019
46
0
My husband, aged 63, has recently become more confused , particularly during the night. He couldn’t find his way back to the bedroom and was very distressed. Yesterday, we arrived in a hotel where he used the bathroom floor as a toilet. He also did this last week in our home bathroom. I frantically managed to clean up the mess and bought disinfectant from a local store. My parents , both in their 80’s, are with us and v v supportive. I feel so guilty that they have to help me to manage him. I can no longer leave him alone. He has day care whilst Im at work, ((Im in a v demanding job, which I love), but I fear this isn’t enough. Any thoughts and advice?
Hello Margeaux,
I had the same problem a few years ago with my OH who was 65 at the time. It led to a diagnosis of Alzheimer's. At first he would be found wandering in confusion during the night so I left lights on which helped for a while. Then he wouldn't make it to the bathroom and in the morning I would find urine all over the landing, his bedroom and sometimes on the floor downstairs. Even if he got to the bathroom the floor was often wet. Eventually I discovered that he couldn't remember what to do when he got there and this was followed by a period when he soiled his clothes which needed frequent changing and wet his bed every night. At first he refused to wear incontinence pants (he isn't actually incontinent as he still gets the urge but doesn't have the time or understanding to do what he needs to in the toilet).
SS gave me a sensor alarm to wake me during the night if he got out of bed but it was often too late and I ended up cleaning up in the night and not being able to get back to sleep. Ok for the odd night but not a long term solution.
Back to the present.
He now wears incontinence pants all the time and apart from an occasional refusal to change them they have become "normal". There is still some bed wetting at night but it is more manageable and I don't feel so overwhelmed. I use the alarm most nights and 50% of the time he sleeps through. When he does wake I can often change his underwear for him (he cannot do this himself) which usually keeps him and the bed dry for the rest of the night.
I have carers in a few times a week but he doesn't allow them to do any personal care.
I don't know why I've rambled so much but just want to say, the NHS supply the incontinence pull ups and they made a huge difference. He no longer wanders in confusion at night except for the odd occasion. I'm not continually trying to clean up mattresses, bedding, carpets, flooring, and furniture.
We can no longer go away overnight and long day trips aren't possible but other than that, the situation is much better than a year ago. Refuse to think things can only get worse from now on. Sometimes you just need to find a solution that works for you and your husband.
Good luck.