Hello, I care for my husband. He has a disability called arthrogryposis which for him means hes unable to walk or use his arms or hands so requires support with all daily activities and all personal care. I’m 33 and hes 40, I’ve been caring for him since I was 24. I can completely relate to how your feeling, it can be so isolating and lonely. Those feelings dont mean we dont adore our partners it’s ok to not be ok. I feel like our lives are so far behind our peers we dont work, we dont drive, we dont have kids… hes never found employment, I’m needed here. I tried to learn to drive but kept failing and tbh money is so tight I dont know how we would afford a car even on the mob scheme. We tried for kids never happened for us. I started getting into voluntary work but a lot of the time I’m so tired from being a carer and dealing with my own health issues I struggle. We also moved to a new county for housing reasons and that means no family or friends in the area…I have some people I see maybe every few years but no close friends who I can confide in, I’ve made a few friends and there but my caring restrictions soon leave me behind again. It’s tough.
Lately, especially since the lockdown I’ve felt like I’m on a merry go round… every day is the same, I get up I cook I clean I care I walk the dog I watch tv I go to bed to wake up the next day and do it all again. I’m 34 and I thought life would be more than this by now. I’m trying to find something outside of the home and my husband to give me some more purpose in life but we live in a small town and not having a car or much time is very limiting, then covid on top.
I’ve not noticed much difference to my life since lockdown, but the rest of it sounds familiar: and it is indeed very monotonous.
Can I suggest that you try and make more of walking the dog? I walk every afternoon, I don’t necessarily walk very far or very fast so it probably doesn’t qualify as exercise, but I take my camera with me and in summer I photograph Dragonflies and Butterflies, when they’re not around I birdwatch, if none of those want to play, I’ll turn to Spiders or Beetles or Fungi, there’s always something. There must be somewhere nearby that you could come up with something similar.
Could you cycle, is the dog small enough to go in a basket for that?
Claire,
What support are you and your husband getting?
Are you aware of NHS Continuing Healthcare? Have you ever applied?
Is he receiving maximum PIP? Are you claiming Carers Allowance?
You need to have time to yourself, on a regular basis, to keep yourself well. It can’t be about him all the time and his needs, your health and well being is really important too.
From you descriptions you husband should be in receipt of both care and mobility at the highest level. As bowlingbun as already mentioned. If not this should be readdressed and when in receipt of high mobility award. Then a car can be supplied through the motability scheme.
It you have had problems with his award. You need to get support with completing the forms.
https://www.carersuk.org/help-and-advice/get-support/local-support
If you are attached to a local carers group. There will be advisers there who can help.
Has there ever been a needs assessment.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment
Or a carers assessment for you.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment
A carers assessment is a separate to carers allowance. So even if you receive carers allowance you need to have a carers assessment.
Has you husband had a recent O/T assessment.