Does anyone else find caring lonely?

All about caring
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Hi everyone,

I’ve never posted here before and tbh find it quite daunting but I need to express myself somewhere. I’ve been caring for my oh for around 7 years now. He has several problems but he main one is respiratory problems. So although he is far from healthy at any time he also has flare ups which can leave him stuck in bed for most of the time for days and often weeks on end. I feel selfish even typing here as he is the one who is literally suffering but sometimes I find it really difficult and extremely lonely. My mental health has taken a huge hit (I had previously had problems so it’s not just down to this) but I feel awful about complaining even to myself as he is the one who is actually sick, and I know it gets him down a lot.
Does anyone else feel like this?

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Yes I care for 83 year old medically non compliant husband. I feel very isolated and lonely and also angry a lot of the time - partially due to his non compliance. I think your feelings are quite normal and natural.

Could you see if there is a local Carers Group? I have a telephone befriender who phones most weeks. Often they have been Carers themselves. If you can get to meetings, then that is worth considering. Can your husband be left? What kind of support does he need.

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You are not alone .I am so lonely it hurts.Hardly any conversation from my other half as he has dementia.Have to watch him and he doesn’t go out alone .Has been 2 years now and I feel trapped .
Don’t feel guilty as he may be the one who is Ill but you are suffering as well .
I’ve tried to find a group to go to so that I could meet other carers but he doesn’t want to go .:pensive:

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Yea I feel the same as I’m a carer for my mum for 10 years and I haven’t had any friends since I was 16 and still only have online friends for the first time in a while. Any friendships I have had haven’t lasted long.
All our family have abandoned us and I only have my online friends to talk to and very shallow small talk with people when I do go out shopping for some bits. In recent years I’ve started meeting people from dating sites but after the first meet they often ghost me. The only ones who don’t ghost me are ones I don’t like and so I don’t meet them again.
I seem to struggle maintaining any long term relationships with people. Something seems to put them off.
I haven’t just only struggled with this since becoming a carer it’s been along time before then as well

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I might try that myself carol

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Hi Sarah, I get out of the house as much as possible. Last night I went to Reigate in order on my own to have dinner at a new restaurant. It was really nice. I ordered carrot cake from the menu. I even played games there.
Try finding some fun activities you can do on your own too. Find out if your local library has any events or activities worth going to. That way you can even make tons of new friends. Consider learning new skills. Embark on a course. Sign up to a local higher education college.
Look at finding part time roles and explore your career options. Pick up a weekly copy of a newspaper to see if there are any advertised vacancies that are listed on offer. Make notes.

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Hello Sarah

You are not alone, many carers find themselves isolated and alone. I know you have been a member for a while but I just wanted to remind you we have weekly meetups online where carers come together for an hour or so and talk. It’s a great place to connect with other carers who know exactly what you are going through. I know it can be quite daunting but there’s no pressure to share anything unless you want to. If you haven’t already given our carer for a cuppa session ago, please have a look at the link attached and see if it is something you would like to come along to, we would love to see you there.
https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/online-meetups/care-for-a-cuppa/
with best wishes
Ingrid

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Hi Carole and welcome.

Please see Ingrid’s post above - as your other half can’t be left alone - the cuppa for carers might work for you too.

Also, have you had a Carer’s assessment recently? There should be a sitting service in your area, that could sit with your other half and enable you to go out and socialise - a Carers group/ Book Club / meet a friend / a class etc

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You’re not alone, I think your feelings understandable given your circumstances, so try not to feel guilty. I find being a carer very isolating. My husband is in his mid 70’s has multiple health issues, heart disease, cancer. However for the last 12 months he’s been suffering with anxiety and depression. But, he’s been very difficult to treat, primarily because he has a 1950’s attitude to mental health, and doesn’t think he should have this problem. Consequently he’s complained about side effects from tablets, blamed everything & everyone else for his issues rather than accept it’s an illness like any other, and recently stopped all treatment because “it’s caused his problems”. He’s just agreed to try some new medication, but before he’s taken a single dose declared the side effects as horrendous. He’s cut himself off from friends because he feels ashamed, but that’s left me more isolated. Like you I feel guilty sometimes, because he’s had a lot to deal with, but equally cross at him as I’m the one running around in circles doing everything. I don’t know what the answer is, but others on here understand what you’re saying. Unfortunately in my rural area there aren’t any carer support groups, but might be worth exploring in your area. I find reading others experiences on here helps.

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Hi again. In that case perhaps look at getting a care needs evaluation done. Call or email your local social services team in order to start the process and make notes. A good social worker will explain to you in depth about your options and offer you a choice. Good luck. Carers UK run a number of share and learn activity sessions via zoom.

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Hi.

Since becoming Carer for my husband a year ago we have lost touch with most of our friends and feel so isolated.

Not sure why they dont bother with us now.

Coffee mornings and quizzes are not our thing but what else is there?

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Take a look online and make notes. If you love singing try finding a choir. If you love bowling do that. Consider your own skills and interests when trying to find activities to do.

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Thanks thara.
Living in a small village makes it doubly hard as everything involves travelling and unless we do things together i have to leave him alone. I try to get to the gym and he sometimes comes to sit and watch ((cant do anything due to heart condition) then i get resentful cos thats supposed to be ME time! A vicious circle.

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Not sure if you have already thought of this but try advertising for a live in carer. You can create a advert to be placed in the Lady for starters. Or even in a newspaper.

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Thx
We are a gay couple so makes it a bit more complex for that sort of thing!
The main problem is he can manage most things - albeit very slowly - and doesn’t need “traditional” Care with things like washing and dressing, but gets wobbles and dizzy spells so cant be left alone too long. He is getting bored as all we seem to go out for is medical appointments (I have to attend as his retention of facts is sometimes a bit poor). Some very good friends are taking us away to a country hotel for a weekend soon so that will be something different.

As my sleep pattern is shot to pieces I have started trying my hand at writing fiction which I do for a couple of hours each morning from about 5am when he is safe in bed!

The biggest change recently is the loss of my dog. He took ill very suddenly and we had to make a decision to say Goodbye within 48 hours. That has left such a hole in both our lives, he was with me 24/7 for 8 years, so I am now lost. He saved G’s life once and on my early morning starts he would come to nuzzle me when I first came downstairs each day. “Love is a cold wet nose!”

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Hi Sarah,

You absolutely must not feel guilty or feel selfish. Being a carer can be an extremely isolating experience. Over time this can lead to depression (even though you might not think so at the time), which in turn can have a hugely detrimental physical impact too as your own health deteriorates - and then everything becomes a vicious circle.

I speak as someone who was a carer for elderly parents for six years. Thankfully my own journey of being a carer ended nearly four years ago - and I can now reflect on that truly isolating and exhausting time having mostly healed but still bearing scars.

First and foremost, you must understand that you cannot effectively help your other half without looking after yourself. When you’re in the thick of being a carer, you think you can do both - but you can’t. It’s false economy to keep on putting your own needs second.

Secondly, while I’d like to think your other half is truly grateful for your efforts and a lovely man - if he’s a decent person, he’d probably also hate to think of the impact his health is having on you. He’d surely understand that you’re not Super Woman and that he’d like to see you have some pleasure from life…

What all the above is leading to is this >>> think about yourself more, get some professional help in, and give yourself some respite. You’ll feel better for it, which means you’ll be a more effective carer. You might be thinking “but I can’t do this” - nonsense! You NEED to do this if you’re feeling lonely, as loneliness is debilitating.

I’m not sure how across the ‘system’ you are or how healthy or otherwise your finances are looking (I’m not asking!)… but maybe the following is useful…

Does your other half receive Attendance Allowance? From memory it’s something like £60 and £90 per week - depending on the level of care required. Even the lower rate is enough to pay for half a day of professional care per week - that’s four hours when you can escape and breath fresh air. Or the higher rate could allow you to have say two blocks of three hours a week when you can just escape the house and be you.

Do you claim Carers Allowance? It’s something like £70 per week, and it sounds like you could be entitled to it. Again, this money could go towards paying for a carer to provide respite for you.

Have you requested a Carers Assessment from your local council? As a carer, they are duty bound to offer you one. It looks at YOUR needs as a carer. While local authorities are strapped for cash - nonetheless it is within each council’s gift to put in place a package of measures to help support YOU. In my case, although I had to fight for such an assessment, my local council did pay for a short break. It was much needed.

It’s not wrong to feel guilty or selfish as a carer. Quite frankly I hated my latter years of being a carer and I wouldn’t wish it on anyone. But you do need to put yourself first and to seek professional help to give you some respite. And if money is an issue, there is financial help available. Final thought. Don’t be proud in these situations. It’s okay to cry out for help.

Wishing you and the other half all the best.

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Sarah.

Sorry to say that a lot of Carers feel guilty about doing things ‘for themselves’ and not the person they care for. However, it’s important to try not to allow this to dominate your life. You have a right to do things YOU want as well as being a full-time carer.

If you were employed by a company FULL TIME, you still get holidays and weekends off, so what is so different when Caring for a loved one. I can hear everyone shouting already as I know the answer. It is SO SO different.

I have said elsewhere that I feel guilty when I want to go to the gym ON MY OWN as that is supposed to be ME time, but can I actually say ‘No I don’t want you to come as you are a burden’?

Hard as it is, we all need time to ourselves, otherwise Burn-Out happens and that helps no-one.

I don’t have the answer for you - as I feel the same way: lonely and isolated and fed-up, tired and undervalued. Many, if not most in our situation will agree with those feelings, I am sure. It’s easy to say ‘join a club’ or ‘go to a coffee morning’ but those don’t appeal to us and the one time we went to a Stroke Cafe it was all ‘jolly jolly’ and people talking down to the visitors ‘Alright dear, we’ll have a nice cup of tea in a minute’. THAT is the sort of thing which drives me up the wall. G doesn’t want to be treated differently, but just find somewhere to relax and be treated as anyone else.

Perhaps it will happen one day. Til then - this forum is a great place to unload :slight_smile:

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Hi

As you can see definately not alone in that. I care for my wife, she is completely dependant on me and won’t have any other carers so its 24/7. My family is 4 hours away and she doesn’t like travelling anymore so I wait for their visits for some respite. I can’t leave her for more than a couple of hours on her own and we don’t have friends nearby to pop in(she’s scared most away) I used to have a close friend to confide in but not anymore so its just me now, we are not close, the relationship changed quite a few years ago, though she gives everyone the impression we are!!! I stay because I do love her and I don’t want her to go into a home to be looked after so i try to keep busy with projects( winter does limit them). I don’t have any answers I’m afraid, making friends for me is limited by the time I can be away, trips to the shops is about all I can manage without a phone call to come home. I’m not unhappy, just need to talk sometime or hug :slight_smile:
take care Sarah, this is a good place to share.

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Hi Sarah

You’re not alone, l feel lonely a lot of the time. I’ve been caring for my husband for the last two and a half years. He had a bad stroke. He hardly leaves the house aside to go to health appointments. Due to fatigue and depression, as well as other effects of the stroke, he is a different person to live with and will spend most days in bed, not eating or communicating with me.

I know it’s all due to the stroke, but life is a daily challenge and my mental health has suffered massively. I cry most days. I used to work full time but it all became too much so have had to reduce my days which I didn’t want to do. I’m hoping it’ll give me time to do something I enjoy as all of my interests went out of the window when he came home.

It is really is tough, I can’t imagine what it’s like for him but it’s also had such an effect on my life too. Unless you’re in this position I feel people don’t really understand what being a carer is like. Most days I hate it but with the new year I’m trying to be positive and make healthy choices to improve my emotional and physical health.

I’m learning that if I’m in a state then I’m not able to help him either. I’ve given up trying to be superwoman, I was digging an early grave for myself, and as morbid as that sounds, it’s the truth.

I really wish you well. It’s good to know we’re not alone.

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I can so relate to what you said Chris - thanks for sharing.