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How many carers feel lonely and isolated??

Guzelle

Registered User
Aug 27, 2016
421
Sheffield
Your post caught my eye, as we are the same age. When my late husband was ill, I was lecturing for one day a week, and it was my day off from cancer. Eventually, we had to have someone to sit with my husband while I worked, but I carried on till the last few weeks of his life...and resumed about six weeks after his death. This time round, my present husband is in a care home, and , quite apart from me finding caring for someone with dementia much harder, I have not worked for five years. I stopped a few months after we married, as he had cancer and needed chemo. I never resumed work, as after his treatment we planned to travel, but he developed dementia and I became his carer.
Sorry, this is a long winded way of saying, how helpful it would be to me now, if I had continued to work. It would have been a break from caring, a way to contact and connect with other people, and hopefully a source of some satisfaction. I feel it is way too late for me to resume my previous career, and although I have many friends, hardly any are my own age. That, in itself, is quite isolating.
As you have only just left the work place, is there any possibility of returning, should you choose to? It might be worth considering.
I don’t think I could return permanently but maybe temporarily. I only worked term time in a school office part time, but he wasn’t coping when alone as he never knew the time and didn’t manage to out on the health walks I arranged for him. Also he used to visit a relative who lived close by but she has since died and he has no where to go!

I am feeling lonely and he seems to be sleeping a lot more and is more confused.
 

maryjoan

Registered User
Mar 25, 2017
1,513
South of the Border
In total agreement with all this.Never been lonely before in my life - I like being on my own. This is different -I’m scared and frightened of the changes in this man I love.
How many carers end up with mental health problems ? Will it be the next big scandal I wonder.
I. too. enjoy being on my own, I could easily live on my own, and have done so in the past - the problem I find is actually living with someone, but feeling as though I am on my own - if that makes sense....
 

Amethyst59

Registered User
Jul 3, 2017
5,764
Kent
It can be very lonely, so it would really be good if you can start to build a bit of a life for yourself. The horrible thing about dementia, is that it can only get worse, so the more support you get, as early as possible, the better. I was advised years ago, to start using carers, or day care, so that when my husband’s condition deteriorated he was already used to being with other people. Try this link to find out what is available in your area

https://www.alzheimers.org.uk/get-support

Sometimes some of us have used different ways to describe day care to make it more acceptable to our loved ones. One lady tells her mum that she needs to go, ‘to help look after the old people’. I used to refer to it as a ‘club’ to my husband. Once you have some help to look after your husband, then you will have a bit of time to yourself. Try to build some support networks so that you will have people around you in the coming years. Is there anything in your town or village that you might enjoy? WI? Walking groups? Church activities? Or do you have any past colleagues you can meet up with?
 

B72

Registered User
Jul 21, 2018
139
I put something like this on yesterday, and then deleted it. I’m not a mad dog person, I know not everyone likes, or can have a dog, but it really is one answer to loneliness. Therapy dogs are used in CHs to calm residents and provide affection. I have taken mine into CHs in the past.

Dogs which have been trained by Hearing Dogs for the Deaf, or to help the blind don’t always pass their final test, also there are lovely older dogs whose owners have died or gone into a CH which need a new home, so it is possible to get a well trained pet from a rescue centre or other source.

They provide uncritical affection and companionship, can help and calm a PWD and the carer. They get you out, you meet people walking a dog. People talk to someone with a dog. You’re less isolated. So it can be a help.
 

mab

Registered User
Mar 6, 2010
198
Surrey
@Bel72 that's exactly what I did last year! My dog is now 17 months old and whilst the puppy training alongside dementia was sometimes very tough he has been such comfort, such joy. Definitely it would have been easier to have had an older dog from a rescue centre, but because we have small grandchildren I felt it safer to start from scratch.
Out walking, in the park, I never fail to have a chat with someone. Often someone in a very similar situation as myself. Without doubt he is my therapy dog! So very glad I got him! :)
 

nae sporran

Volunteer Host
Oct 29, 2014
7,201
Bristol
I. too. enjoy being on my own, I could easily live on my own, and have done so in the past - the problem I find is actually living with someone, but feeling as though I am on my own - if that makes sense....
I am beginning to get that feeling, Maryjoan. Nothing you say or do makes any difference to the person you are living with. She knows today that you have sciatica and sounds very sympathetic, guilty about being a burden, then tomorrow she demands every 5 minutes that you make her a sandwich while you are still finishing your breakfast. Sorry, that was a rant and from reading your previous threads I think you have worse to deal with.
Can you get some time to yourself, so at least one day a week you get to feel human and part of the world ?
 

Angela57

Registered User
Jan 22, 2016
195
I put something like this on yesterday, and then deleted it. I’m not a mad dog person, I know not everyone likes, or can have a dog, but it really is one answer to loneliness. Therapy dogs are used in CHs to calm residents and provide affection. I have taken mine into CHs in the past.

Dogs which have been trained by Hearing Dogs for the Deaf, or to help the blind don’t always pass their final test, also there are lovely older dogs whose owners have died or gone into a CH which need a new home, so it is possible to get a well trained pet from a rescue centre or other source.

They provide uncritical affection and companionship, can help and calm a PWD and the carer. They get you out, you meet people walking a dog. People talk to someone with a dog. You’re less isolated. So it can be a help.
When I lived with my mum to look after her, I couldn't leave her for long, so I got a puppy and he was my saviour at the time. He's tiny, so he only needs 20 minute walks twice a day, which worked in well with leaving mum alone. He's 3 now, and mum's been in her home for 2 years, the home allowed me to take him in to see her regularly. I can't now because dementia has turned her against me due to decline, and she refuses to see me for a couple of months now, but he's also brought a lot of happiness into her life too. I just don't know I'd do without him now.
 

B72

Registered User
Jul 21, 2018
139
It’s true, Angela57, and it can really help with visiting someone with dementia in a CH. It provides something to talk about, the PWD usually feels happy stroking the dog, other residents are interested. It can widen a conversation with staff and other residents. I don’t know how we’d have managed visits without our dog when MIL had dementia both earlier and later in a CH.

Now my OH is going that way. Our dog adores him, and the affection is mutual.
 

Philbo

Registered User
Feb 28, 2017
841
Kent
My wife goes one morning a week to a local dementia "activity morning". It is run at a community resource centre, which as well as being a dementia hub, also caters for over 60s activities, improving mental and physical well-being etc.

There's also a nursery attached and they often bring the little ones in to visit the dementia group, which I am told, my wife seems to enjoy.
 

maryjoan

Registered User
Mar 25, 2017
1,513
South of the Border
I am beginning to get that feeling, Maryjoan. Nothing you say or do makes any difference to the person you are living with. She knows today that you have sciatica and sounds very sympathetic, guilty about being a burden, then tomorrow she demands every 5 minutes that you make her a sandwich while you are still finishing your breakfast. Sorry, that was a rant and from reading your previous threads I think you have worse to deal with.
Can you get some time to yourself, so at least one day a week you get to feel human and part of the world ?
Thanks for your kind words naesporran - I have taken some positive action with regard to forward planning, and just the knowledge that there is something possible that will suit him and me, has lifted a great big dark cloud - hopefully we will never use this forward planning, but just knowing it could work, is wonderful.

I know exactly what you mean about the demanding every few minutes. We need the money I earn, I have been working away at my computers today ( takes concentration to do my job properly) and I have stopped for 2 x 1 hour games of scrabble, and 3 x half hour board games, as well as the average caring that goes on around someone with dementia - and, you know what? Just the knowing that there is a 'forward plan that might happen' means I am not nearly as resentful as I would have been a few days ago.

It probably will not last, but for now, I can smile a little.
 

AliceA

Registered User
May 27, 2016
2,864
My darling, I do understand. I am still suffering from what I call prisoner mentality too. I'm glad you, we, can talk on here. Kindredxx
Oh, you poor thing. Sometimes I feel I may be the same, I am very home based, when I do go out it is for appointments so never alone.
I do remember something similar when I had been house bound with the children who had health problems. I learned to be gentle with myself. Go out but prepared to turn back, catch a bus or not. It was a weaning process. Then going into a cafe, ordering a meal, just gently gently. There is no competition. Xxx
 

Duggies-girl

Registered User
Sep 6, 2017
2,134
Well I went out today. My husband did the morning shift for me at dads while I took the morning train to London for a walk around some of the London canals with my local U3A hiking group and what a lovely day we had. We started at Camden Lock before following the Regent canal and ended up in Little Venice before getting the bus back to catch the train.

Nothing special about it, just a walk with pleasant company and a picnic lunch in glorious weather, sunny with a bit of a breeze.

I was back in time to do dad's dinner and spend some time with him before coming home. It is the first day off I have had since April and it was wonderful, just to take in some pleasant views and have some outside company. I hope to do it again next month if all goes well.
 

Maryland

Registered User
Mar 30, 2015
62
North East UK
Thanks angela57 - you have hit the nail in the head,!! Sometimes I just go for a walk around the block for 10 mins to stop myself screaming and to see another living sole as my OH wont go out to a day centre etc. Thank you. Take care x
 

kindred

Registered User
Apr 8, 2018
2,523
Oh, you poor thing. Sometimes I feel I may be the same, I am very home based, when I do go out it is for appointments so never alone.
I do remember something similar when I had been house bound with the children who had health problems. I learned to be gentle with myself. Go out but prepared to turn back, catch a bus or not. It was a weaning process. Then going into a cafe, ordering a meal, just gently gently. There is no competition. Xxx
Thank you so much. At the moment the panic just takes hold of me and needs to be addressed. I can go to my workplace and that is about mile and a half away but that is the limit of it. Went on a bus trip with a friend who is actually a psychiatric nurse the other day and it was good but was terrified. Everything out there seemed so alien ... Thank you for your kindness. with love, Geraldinexxxxxkindred.
 

AliceA

Registered User
May 27, 2016
2,864
Thank you so much. At the moment the panic just takes hold of me and needs to be addressed. I can go to my workplace and that is about mile and a half away but that is the limit of it. Went on a bus trip with a friend who is actually a psychiatric nurse the other day and it was good but was terrified. Everything out there seemed so alien ... Thank you for your kindness. with love, Geraldinexxxxxkindred.
I try not to look too far ahead emotionally but I plan practically to eventually make life simpler, I must admit that can be like stuffing a pillowcase with holes in it!
I never leave my OH on his own. Last week I left him in a car with daughter while I had a blood test.the nurse was running late so I had a lovely conversation with someone who had come back after working abroad for 40 years. Sounds sad, but that was a break for me, a lively conversation with someone.
Yes, sometimes it does seem, perhaps, we make not get our social skills back again. It may take time but I think we will.
I find I do miss the lively debates, the banter and the caring of the U3a groups I was involved with. I had to admit to myself that friends are very sparse, many old friends are now gone or ill, my body is in its eighties however young my mind aspires to be.
I could get a sitter I suppose but life is so erratic now, there is no transport, so no longer a trip on the bus for a coffee. I always used to find someone to converse with. What a pickle this condition we are dealing with puts us in. So my body stays but my mind flies. TP is one place. Ted talks etc. Is another. So I feel alone, perhaps not lonely, I feel no person is better than the wrong person! I know who my right person is, bless him. Take care, xxx
 

AliceA

Registered User
May 27, 2016
2,864
I put something like this on yesterday, and then deleted it. I’m not a mad dog person, I know not everyone likes, or can have a dog, but it really is one answer to loneliness. Therapy dogs are used in CHs to calm residents and provide affection. I have taken mine into CHs in the past.

Dogs which have been trained by Hearing Dogs for the Deaf, or to help the blind don’t always pass their final test, also there are lovely older dogs whose owners have died or gone into a CH which need a new home, so it is possible to get a well trained pet from a rescue centre or other source.

They provide uncritical affection and companionship, can help and calm a PWD and the carer. They get you out, you meet people walking a dog. People talk to someone with a dog. You’re less isolated. So it can be a help.
Dogs are a blessing, we could not care for one now. Ours were great ice breakers, they were fun and gave an excuse to play. They were great mind readers too. Enjoy your friend!
 

AliceA

Registered User
May 27, 2016
2,864
Well I went out today. My husband did the morning shift for me at dads while I took the morning train to London for a walk around some of the London canals with my local U3A hiking group and what a lovely day we had. We started at Camden Lock before following the Regent canal and ended up in Little Venice before getting the bus back to catch the train.

Nothing special about it, just a walk with pleasant company and a picnic lunch in glorious weather, sunny with a bit of a breeze.

I was back in time to do dad's dinner and spend some time with him before coming home. It is the first day off I have had since April and it was wonderful, just to take in some pleasant views and have some outside company. I hope to do it again next month if all goes well.
Sounds lovely, breaks are about quality rather than quantity.