Hello, my husband has had many illnesses over the years we have been together, cancer, kidney removal surgery, heart attack, then 3 years ago he had a stroke which although physically he recovered well from he was left with cognitive decline and his personality and understanding changed. Last September he had a heart attack and declined further, last month he was diagnosed with Parkinson’s and possible vascular dementia, he is still having tests for that. I’ve always cared for him and done my best for him, the last few years have got steadily harder for me and I’m struggling. I miss the man I married, the man living with me looks like my husband but his personality and the man I fell in love with has gone.
Eight weeks ago my elderly mum fell, seriously fracturing her hip in 5 places. We don’t live near her but both spent several weeks staying with her following her hospital discharge, she was agitated, demanding and a challenge to be with. Her pain medication was changed and she is now more like herself but not the same as she was prior to surgery. I’ve arranged a care package and we have returned home.
My husband has resented not having all my attention, he hates it when she FaceTimes or I get phone calls about her care. I feel Iike I’m being torn apart caring for both my husband and mother. I feel exhausted and stressed beyond belief. Since returning home my husband has started to forget where he puts things and can’t find them, he is blaming me for moving his things when I haven’t. He shouts at me and we then argue, I know he can’t help it but it’s so hurtful. I feel sad all the time, on auto pilot, my whole life caring. I want my sparkle back.
How does everyone else cope with this, I feel all this caring and stress is going to kill me.
Hi @Sootycat, welcome to the Forum, we’re really glad to have you here and hope you enjoy being part of the community.
We are really sorry to hear about how you’ve been feeling and we want to thank you for all you do caring for your mum and husband. It is not easy caring for someone so close to you and we’re sure you are doing an amazing job.
On our website, we have lots of information for people caring for someone with Parkinson’s. It includes tips to look after yourself, information about respite care if that is what is needed and links to support groups which we think might be really beneficial for you. You can find it all here: Caring for someone with Parkinson's | Parkinson's UK
We also have a free, confidential helpline on 0808 800 0303. If you have any questions or need to speak to someone, our specialists will be more than happy to listen, answer you and offer you the advice and guidance you need. Please do call if there is anything we can do.
@Sootycat Is there a local carers support group where you live? I’ve not used a carers support group myself but have heard from people who have and they say how good the group was
I am so sorry to hear about all the problems that you are facing. Have you had a carer’s assessment? If you haven’t, then contact your local authority’s adult care dept and request one. Inform your GP that you are a carer.
www.mobiliseonline.co.uk is an excellent place to go especially if they work with your local council. This is a carer support charity who are invaluable.
Dear Sootycat - two years ago I was in a very similar situation to yourself - my husband has had PD for the past 8 yrs and my mother became quite ill some 2 1/2 year ago and whilst I was also working a full time job, my life was just working/caring for quite some time and I also felt exhausted. Unfortunately mum pass some 2 years ago - so I had to then deal with all that also. I retired from my job some 2 months ago (at which stage my husband could at least do some things for himself) however, within the last two months his PD has deteriorated tremendously whereby I am now almost a full time carer for him (which I do not want to be) as I want to go out to work for a few hours a week to keep me sane. The Carers service has been in contact with me as I had a breakdown a couple of weeks ago however, they cannot do anything to help really apart from a ‘support line/groups’ - I have raised the idea of respite/long term care and he is not interested in anything - so I am now stuck in a full time caring role which I hate and do not want to be in. The only option I am considering, for me at this moment in time is to leave my husband (after 26 yrs) which will at least let me have some sort of life to live - so I fully understand how you are feeling - but, it will not get any better for you……….
