My partner has a neurological condition causing him mobility issues. Three months ago I had to reduce my working hours to look after him as he’s now totally reliant on a wheelchair. I’m really struggling with my emotions and getting angry and frustrated with him, which in turn is making me feel guilty.
I’ve reached out to a local carers group now, and a therapist, but I just wondered how others cope with these feelings…I’m hoping I’m not alone feeling like this?
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Hi Lori, I also care for a partner with a neurological condition (plus other stuff), and have had to reduce my working hours due to help he needs. Your feelings are natural and normal, it’s a huge change of lifestyle for both of you, and hard to accept as it’s been forced on both of you by circumstances outwith your control.
One thing that helped us was a visit from a good occupational therapist. She made a number of recommendations that made it possible for my partner to do more for himself (until his condition worsened).
I also find arranging things like meeting a friend for coffee or a walk really helps. I do need to try and arrange it at times when my partner is less likely to need help, so I’m less likely to have to hurry back after 30mins, but that’s a compromise that works. Or if I can arrange for one of his friends to visit him, that will give me a few hours where I can unwind, guilt free. It is hard when you know how much help is needed, but you need to try and have a bit of time to yourself, for your own wellbeing.
This forum is really supportive too, so you can seek out support any time you need it 
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Hi Lori, a warm welcome to the Forum.
My husband, Graham, suffered a stroke 2 1/2 years ago and although he started to recover we had to shut down our small business very quickly so I could become his full time carer. At that time we lost contact with so many people and so many just didn’t bother with us. That left me feeling resentful of them but also a bit of Graham although logically I know it is not his fault.
Since then he’s suffered a cascade of other medical issues and is currently in rehab after a few weeks in hospital when they thought he’d had another stroke. It’ll be six week on Sunday that he was admitted to hospital and I have been to visit every day but one. That’s left me feeling tired, anxious and sometimes resentful. I’ve had days when I have cried and he started to see ‘the cracks’ in my smiles, which added to me feeling worse. That just meant I sent myself on a guilt trip because I was the “healthy” one and able to get around so I shouldn’t feel like that.
I’ve been trying to get time for ME but it’s bl**dy hard and adds to a bit of resentment which is, in a way, silly. I get cross with him and snappy when he can’t do things or his memory fails him a bit - even though logically I know its not his fault.
That is why it’s important to get time for yourself, just to destress a bit. I now go on fortnightly walks with a Walk and Talk Group which was started by the local Carers Support Centre, and the members have kept it going. Recently three of us have “taken it in turns” to need support from others and that’s been amazing.
I’m just trying to say ‘you aren’t alone’ with those feelings - they are perfectly natural, I think.
Yesterday they started talking about discharging Graham home and I suddenly had this feeling of ‘oh no that means I lose more independence and have to think about him again’. ooops!! However, I put my foot down when the OT mentioned next week and pointed out that I have commitments I cannot change - including the W&T group and I told her that I am attending that no matter what as it does my MH a lot of good. Graham heard and said ‘oh I am pleased you are going to that - you don’t get any time to do things YOU want to do when I am home’… OT couldn’t argue then.
I hope you find the local support group works well for you. A lot of support is available here - including the “Roll Call” thread where some of us have a natter and moan and a laugh too. You may find that helps sometimes, and I would recommend checking it out.
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Hello and welcome from me too. Your feelings are totally normal.
I am so glad you have reached out to a local Carers Support group. If you cannot get to meetings, some groups have a telephone befriender. There may be a waiting list but they have often been Carers themselves so do understand. Chris has found the Walk and Talk group very useful. I struggle to leave my husband for long periods so the telephone befriender is my best option although I have not given up going to the actual meetings!
All I can say is reach out and get all the help you can both for you and for your husband. It is very hard to ‘carve out’ any ‘quality of life’ but you do need to think about YOU as sadly, care needs in most cases tend to increase not decrease.
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Hi Lori,
Welcome from me, also a newbie to this forum, but not to caring.
It feels weird saying I’m not new to caring… I thought I was, but it’s actually been 5 years now!
I care for my Dad who also has a neurological condition. We lost my Mum just 5 years ago, and I suddenly gained a new identity and focus in life. It was a huge change for me at the time. My every waking hour was spent trying to protect my Dad from feeling like his world was breaking in two.
I wasn’t working due to my own mental health issues brought on by workplace bullying, and so caring gave me a role in life. I didnt realise for about 9/10 months that there was any support available for me as a Carer or for my Dad.
I studied and researched my Dad’s condition the way I studied for any new role/job/course, and so I discovered he could get a Needs Assessment from the Council. It was during that phone call that I discovered about Attendance Allowance for my Dad and Carer’s Allowance for me. The few extra pennies in recognition of my new role helped me feel less of a waste of space.
I’ve battled hard over the last few years to represent and advocate for my Dad. It’s hard. He has a slowly progessive condition. His brain is struggling more these days, and he becomes less of the independent Dad I once knew. It used to be a case of “Daddy fixes things!” But now, he is more likely to break things (rarely himself, thank goodness). I’ll always be his daughter, but he treats me more and more as someone he takes for granted.
I do get frustrated with him. When I get stressed, I find it hard to reel my neck back in and not snap at him. He just does such silly things sometimes because he doesn’t think things through anymore… that isn’t who he used to be, he used to be methodical and clever. Then, I feel hugely guilty because it’s not his fault, he didn’t choose this condition. He didn’t choose this life. But then, neither did I.
My way of dealing with this emotional friction is to remind myself that we’re BOTH battling his condition. We’re both in it together. My Dad and I are a team, and we both have a part to play in making the best of things. I find this attitude of a ‘united front’ helps me and my Dad both feel empowered within our ever evolving relationship.
The hardest lesson for me to learn as a Carer is to stand back and allow my Caree to fail or succeed (safely and within reason). It sounds unkind, but it’s actually incredibly empowering for the person you care for to still try to do the things. Sometimes, it’s quicker and necessary for me to do it myself, and that’s ok too.
Caring is great in so many ways, but it can become all consuming. We must remember we’re not just an extension of the person we’re caring for. We have as much right to be cared for and considered too… we just have to seek out the path to find that, particularly when the people we care for are those who’ve previously been the one’s caring for us.
I’m caring for my Dad, but you’re caring for your partner. These relationships have completely different dynamics. I won’t pretend I know what you’re going through, but you’re not alone in trying to adapt to a changing relationship based upon your Caree’s condition.
Definitely try to do as many ‘normal’ things as you can. Especially while there is so much change going on for you both.
Just remember that you are important and worthwhile too. I mean, you’re a Carer now, so you’re actually pretty incredible! Grab the happy feels from wherever you can, and hold onto them for as long as you can.
Hope to see you around the forum,
Bx
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If dad has a neurological condition, is he claiming exemption from Council Tax due to severe mental impairment? Easy to claim, and it can be backdated!