Hi everyone. I am new to this group and am unsure what to write about. I will just say that I have been a 24/7 carer for a year now, and am finding it difficult. My partner/companion of 9yrs has Parkinsons and has been great up untill a year ago when I came home from a night shift to find he had been on the floor for most of the night , unable to get out of the awkward possition he was in… Anyway he ended up in hospital and his mobility and other movement has deteriorated greatly. He now needs help with most things. I have managed on my own, as Ive had a long profession in NHS, and thought i could manage, and although mostly I can, its a full time job. I gave up my job as I was no longer able to be flexible with shift work which wasnt fair on my employer, and so have become financialy dependant for the first time ever… I am usually a very active outdoors person, walking, cycling , kayaking etc, but can now only be out for essentials for a couple of hours at most. I am committed to picking grandchildren up from school twice a week, but lockdown had relieved some of that for now, and I have a new grandchild on the way but my son is a 6 hour drive away so I will be restricted in how I go to see them as my partner is no longer able to come with me. He has 2 children who have decided they do not want to be responsible for relieving me at any time. Add to that the twice daily support I give my mother ,4 times a week, who has early stage dementia and I have no spare time to enjoy my hobbies at all. I know all of you are in similar situations but I cant see past the fact that this is all I can see my life being for the rest of my life and that fills me with horror. I dont know what the best solution is. When people ask if im ok, as you do! I end up tearing up…If my own family need me in a hurry, I cant just up and go, and I feel they should be a priority for me. Through no fault of his own he has imprisoned me. I am torn between wanting to do the right thing for him and the right thing for me… I dont know where to go going forward. So thats why I have joined this goup, to see how others cope…
Welcome to the forum.
You cannot be forced to provide ANY care for anyone.
I would suggest that now is the time to start a new chapter in your life, where you take control, rather than let others constantly pull you in all directions.
You need to start managing everyone’s expectations of what you are prepared to do.
I’ll start with your partner.
He needs to have a Lifeline Pendant provided by Social Services, and some care provided by them. Start by asking them for a Needs Assessment for him, and a Carers Assessment for you.
List all the things that he needs help with.
Is he claiming Attendance Allowance?
Does he own or rent your home?
Have over £23,000 in savings? (Yes/No).
Does he give you anything for the care you provide?
Are you under pension age? If so, are you claiming Carers Allowance?
Mum has dementia. Do you have Power of Attorney? Is she claiming AA?
Is she claiming exemption from Council Tax on the grounds of Severe Mental Impairment?
What are your dreams for retirement? Travel, clubs, hobbies?
You can and should have time for yourself, but you’ll only have it if everyone realises you are serious, and cannot be made to feel guilty.
I am getting carers allowance. He gets PIP, and he now gives me an allowance monthly. Its not really about the money though, although I will not walk back into a job in the current circumstances. My state pension is due next year. We have Power of Attorney for my mum. The only thing I havnt done is get social services involved and I guess with the fact that his children have decided they will not be able to relieve me when I need to be available for my family, which is the only thing I actually want to do if im honest, as I love sending time with them, I am going to need help. I know all this but dont want the restriction of people coming in and out of my house… I know!!! I am going to have to do something… its all so emotionally complicated … but thankyou for you reply … usefull to see things put in bullet points…
Are you aware of the fact that Social Services can provide your partner with Direct Payments instead of arranging care for your partner? Sadly, he is going to need increasing amounts of care for the rest of his life.
Direct Payments can give lots more flexibility for both of you.
Have you sorted out the “who gets what” side of your home when something happens to one of you?
Both done wills?
You both need to do POA’s for each other, or give the power to a trusted friend.
I was very ill when I was 52, lost my husband when I was 54, and nearly died in a car accident 3 months later, left with serious disabilities. It’s best to sort things out long before you need them.
Welcome to our forum, many carers are finding it difficult at the moment for all sorts of reasons, which is why we have set up a couple of zoom online chat groups for carers to come together to talk and support each other. There’s no pressure to share anything, a lot of carers have just found the sessions a useful place to chat and pick up tips. Here’s the details for our care for a cuppa, it’s on a Monday afternoon at 3pm (except next week because of the bank holiday it will be on Tuesday morning.) Here are the joining details Online meetups | Carers UK
We also have a weekly share and learn session these are held on different dates and include sessions on dance, singing, first aid - there’s a whole range to choose from Share and Learn | Carers UK
Please come along, we would love to see you there