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Carers UK Forum • Loneliness
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Posted: Tue Jun 04, 2019 12:25 pm
by Alan_1709
How do carers and those they care for cope with loneliness? I have been caring for my disabled wife for about three years and there seems little prospect of her condition improving. The care she needs is demanding and the only outings I have are to the supermarket about once a week for essential household shopping and collecting her prescriptions from the pharmacy once a fortnight. I take her out to clothes shops and so on now and again but it never works well as she hates being in the wheelchair.

My lady used to have a very active social life, around the Church and the groups she belonged to there, a choir which performed concerts in the area (even pantomime) and a group of long-established close friends. Our outings together were frequent but we also had independent interests, my main one being long-distance walking.

Now we are together just about 24 hours a day and she hates being dependent on me for her general care and her personal needs. Apart from about four people, friends and family seem not to be interested. Gradually, during the past few years, contact has grown less frequent. This behaviour distresses my wife particularly.

And I don't know what to do to improve the situation. My company clearly isn't enough and that I fully understand. I get irritable because I am nearly always tired - long days and sometimes disturbed nights with no let up. My lady is frustrated because of the restrictions her condition impose upon her and the pain she is in and that also leads to "words" being spoken, which I know she doesn't really mean but nonetheless it is distressing when it happens.

We had a young man from Social Services here about six months ago and he arranged a respite stay in a local place for ten days and I took my wife there. I brought her back home the following day - she was very upset. She found all the other persons there had some form of dementia and there was no social intercourse - she was hoping for conversation but didn't get any. What particularly upset her was the presence of former friends from Church, who simply didn't know her.

I don't know what the solution is - I feel as if we are descending into a situation which gets steadily worse and from which there is no escape.

If you have got this far, thank you for staying with me and I apologise for the length of this posting. I am sure many of you find yourselves in a similar situation and, like us, you are just trying to cope as best you can. But you may have something offer from your own experience which will make a positive difference. Thank you.

Re: Loneliness

Posted: Tue Jun 04, 2019 1:31 pm
by Chris From The Gulag
Hi Alan.

To save you hanging about for replies , if you type LONELINESS into the search bit ( Top left )
on the Board Index screen , you will be rewarded with over 250 hits ... some multiple ones
where several postings appear in one thread.

Not an uncommon issue ... in fact , almost inevitable for far too many carers and their carees.

Re: Loneliness

Posted: Tue Jun 04, 2019 2:43 pm
by Alan_1709
Thanks for the suggestion - never even occurred to me! As you say, plenty of hits, so something to browse through. Thank you.

Re: Loneliness

Posted: Tue Jun 04, 2019 2:52 pm
by Chris From The Gulag
Your welcome.

Some really human postings amongst that lot ... only to be expected.

After all , this is CarerLand ... one tends to leave their former life at the door ... only to discover that
the outside world has changed ... for the worse ... on their release ... no matter how many years /
decades down the line.

Re: Loneliness

Posted: Tue Jun 04, 2019 2:58 pm
by bowlingbun
However much you love each other, few couples can cope with being tied together without a break.

Social Services should have done a Needs Assessment for your wife and a carers assessment for you.
Did you ever get a written copy of each? Was it complete and accurate?
Does your wife have a mobility scooter now?
How old is your wife? Is she claiming PIP (under 65) or Attendance Allowance (over 65)?

Re: Loneliness

Posted: Tue Jun 04, 2019 3:18 pm
by Alan_1709
There was no written assessment for either of us arising from the social worker's visit. Not that I have seen, anyway.

I am 75 and my wife a little older. My wife receives the Attendance Allowance which, over time, has paid for the stair lift we had installed and other bits and pieces related to her care.

We have considered a mobility scooter, but one of her problems is a disability in her right shoulder and arm (she is right-handed) and she worries about having effective control of the scooter as her movement there is restricted and painful. Despite an operation for this a few months ago, the shoulder hasn't improved a great deal.

On the whole, we can cope with the mechanics of caring and being cared for, although she finds it frustrating and I find it tiring. The company of friends always gives her a boost and this is what she misses most. She has some friends coming this evening and, once I have provided the tea and cakes, I am off the hook for a couple of hours, so my wife enjoys some fresh conversation and I have a little break. But we both want (need?) more of that.

Re: Loneliness

Posted: Tue Jun 04, 2019 3:25 pm
by Chris From The Gulag
Hi Alan.

AGE UK ... on their radar ?


Certainly worth making contact with their local office.

It is truly amazing what they actually do throughout the country.

Re: Loneliness

Posted: Tue Jun 04, 2019 3:50 pm
by bowlingbun
Alan, in that case, ring Social Services and ask

a) for a copy of the assessment they wrote last time (calling their bluff!)
b) for updated assessments.

Without your help, your wife would really struggle, so it's really important tha you look after your own health, and get others to do some of the current caring role so you don't get so tired

If your wife had someone to help her bath, dress, sort out the beds, laundry etc.that would give you some "me time" every morning. Alternatively, someone preparing the evening meal with your wife could give "me time" late afternoon.

I know you don't WANT to have someone in, but perhaps it's what you NEED?

have you ever investigated going on holiday together? Would you prefer a hotel, or self catering?

Re: Loneliness

Posted: Tue Jun 04, 2019 6:24 pm
by Melly1
Hi Alan,
you have been given some great advice.

I just wanted to add though, that there are other ways to operate electric wheelchairs than with the hand, arm, shoulder; no reason why a mobility scooter couldn't be adapted either. First stop, an OT assessment to see what they recommend. If no joy there, try the charity REMAP https://www.remap.org.uk/ They are fantastic and have made some amazing adaptions and inventions to improve the lives of people with disabilities.

If you wife was more independent and could go out with her friends - it would free you up to go walking again.


Re: Loneliness

Posted: Tue Jun 04, 2019 8:55 pm
by Alan_1709
Thank you for your responses and advice.

The social worker who came to see us didn't mention a written assessment, although he took plenty of notes. This may be worth following up. And the adaptable wheelchairs sound interesting - never heard of those.

Holidays - the last one was three years ago in a ground floor apartment by the sea and was reasonably successful, although my wife found getting about in the recently acquired wheelchair frustrating. Before then, the same year, we went abroad with the benefit of assisted passage and a wheelchair hired locally. We found that pavements there were not always wheelchair-friendly.
"Ramps" on to the road were often about 4 or 5 inches high. We would like to have another holiday, but it will have to be self-catering in the UK, a ground-floor apartment or a cottage. My wife wants to feel a bit stronger first, so she has a better chance of enjoying it. It is a current topic for discussion.

Help at home - I have tried to talk to her about this , but she is not prepared to co-operate. Despite my evident shortcomings, she wants to keep things the way they are.

Her main problem, apart from her disabilities and the inconvenience and discomfort they cause, is feeling isolated as friends and family have gradually taken less interest in her.

My thanks to all of you for your kindness and your advice.