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Caring for a partner - Carers UK Forum

Caring for a partner

Share information, support and advice on all aspects of caring.
This is the position i find myself in. I was aware of my new partners illness and disability before we entered a committed relationship, and to me it didn't matter (in terms of getting involved) So it's how the relationship has always been. My partner is an above knee amputee with diabetic neuropathy (peripheral and autonomic). There's a whole load of issues that go with this but I'll keep it simple for now :)

I thought it would be good to have a thread dedicated to carers who care for their partner as there doesn't seem to be an area on the site for this. I think it's a very intense kind of caring that makes emotions and difficulties run deep and I feel real guilt in saying I spend a lot of time feeling useless and lonely :(

my circumstances are very similar to yours in that I was also aware of my partner's health problems when we met 8 years ago. However, over the past 4 years he has become progressively worse. I feel very sad and cry every day. I miss the able person he used to be as well as the happy person that I was. I am also very lonely. I don't know what to do...
I also care for my husband who has a deteriorating condition. I did know before we married but it is still horrendous watching him deteriorate. There are different emotions & challenges for each type of caring - for a parent, a child, a partner.

We find the most important thing is keeping our relationship & marriage separate from the caring. Obviously I care for my husband because I love him but we also work hard on having a relationship apart from that - we make sure we have plenty of close romantic time that any relationship needs.

We have dark days when one or both of us just wants to scream at the world about the unfairness of it all. There are other days when I just hold him as he realises yet another thing he can no longer do. On the whole, though, we try hard to be in this together & support each other - I go places with him as he can no longer go out alone & he supports & encourages me to go out for coffee with friends or be involved with local groups. It is tough but I am so glad that I can be here for him or he would be stuck indoors with carers popping in for brief visits or wheeled off to a home whilst still only in his 50s.
I too can relate to all of above posts I have been with my partner for 15yrs and 1st 8 were pretty smooth sailing (although he was born with a genetic progressive condition)so we knew it would always rear it's head at some point.. well last 6yrs have certainly showed us the conditions true colours, and have been pretty horrendous...sometimes I too cry in despair and miss the watmy it was before..at times I wonder if I knew what was to come would I have chosen this path..I don't know as horrible as that sounds but sadly true...
It's important to acknowledge the feelings that you have. I have a son with severe learning difficulties. I love my son but his disability (brain damaged at a teaching hospital because the midwife was an unsupervised, unqualified student nurse, busy hospital, no notes) has given the entire family a life sentence. We all do our best, it's not his fault after all. The last few weeks have been extra difficult, for a variety of reasons, and I'm not sleeping well. If things are getting on top of you, try to avoid putting any extra pressure on yourself. Admit you're having a bad day, and leave non essential jobs for another day.
im a full time carer to my partner and like you all we do what we do out of love for that person , and yes it can be hard on us emotionally and physically .

But we have to remember we have to take care of our selves first before we can take care of our loved ones.

I find it hard sometimes to remember that too so none of you are alone . but what gets me the most is due to my situation i feel so isolated and alone sometimes. and with my own health problems i find it hard to trust people . also as i cant drive i have to travel by public transport which on the little money we get in i rarely could afford to get to any of the groups close to me . plus i have no one that we could trust to sit with him in case his copd acts up.
I've been caring for my husband for 5 years. He is terminally ill due to a number of medical issues having had leukaemia. He know has a terminal lung infection. It's a great idea to have a thread dedicated to caring for a partner. I like many of you on here feel lonely, I have great friends and family but do not think anyone really understands unless they've been in the situation. We have a 7 yr old daughter and it's tough caring for them both! My husband is clearly nearing the end and watching him deteriorate is awful. It's feeling so hopeless. He's been truly amazing through his illness and we are very positive hopeful people - he has far outlived all doctors life expectancies! But watching anyone you love become weak and ill is absolutely terrible. I feel let down by the system too - the support networks that you believe would be there to help you have been non existent! So looks like I will watch my husband (who is only 46) die in our bed. I'm scared at what the last few days will be like, his symptoms, pain, fear. In a way it will be a relief when he goes as I am exhausted and it's been a real emotional rollercoaster for the last 5 years as he has come close to dying a number of times. However I pine for the life we had before he was ill - full of hope with a young daughter, nice home, good jobs. Life is very unfair and cruel. Xx
My husband has early onset dementia of a very cruel kind. The things he most valued, social interaction, involvement in the community and being active are gone or going as he can no longer speak and finds everything difficult, even opening a gate to walk out.

My mother also has Alzheimer's, so I know the emotional impact of having a partner with dementia is very different and I struggle with depression, anxiety and just sheer exhaustion, mostly due I think to a lack will to carry on. I have good friends but it is lonely.

I just wonder what it is all for. No real help available for someone who is still fit, still aware and understandably frustrated and tetchy.

Thanks for posting this thread. I think it is an important issue and nice that someone acknowledges it.
I have been caring for my O/H for 35 years we have been married for 39 her illness be came apparent four years later when she had to give up work. We have together and with an assortment of helpers nannies home helps and now PAs had a son and brought him up, my O/H condition has been markedly worsening for the last 5 years, and will we believe draw to a conclusion in the next two years or so but then she will probably battle on just to frustrate the professionals.

The last five years have been the worst we are no longer able to sleep together or even in the same room, and it is difficult to have any real relationship other than friendship which gets tested to the extreme on occasion.

As the above have said I know everyone has special aspects to their caring but caring for a partner is very different and has different dimensions to looking after children or parents.

The main impact is I suppose loneliness there is no one who's shoulder you can cry on. You start thinking well what happens to me afterwards will I die alone unlike my OH.

I'll avoid getting embroiled in the other dimension which can be lost but I think it would be helpful to have a partner carer thread.
Hi Tony, welcome to the forum. As your wife's condition is apparently serious, can I suggest that you Google "NHS Continuing Healthcare Checklist" so that you can ask your GP to arrange for an assessment if/when you feel your wife might qualify. I was widowed 9 years ago, loneliness is one of those things you learn to live with when you are forced to.