To all who are hoping to support a caregiver

I have been in this situation - it is a tough road. TBH I was just glad if anyone said or did anything at all that indicated that they were thinking of us. I am guessing that your kind friend simply does not grasp the day-to-day realities of this.

I think you should try to put a positive spin on this if you can.

When my OH was in this situation, and before he was so unwell that we needed live-in care and then a nursing home, I used to pay a friend to sit with him so that I could go to my weekly choir. It saved my sanity. I made a rule that if I did not look after myself, I would not be able to look after him. My family fully backed me up on this.

I hope there are ways that you can find some brief peaceful moments- but I do know how hard it is.

Nanamar I also have been in this situation and I do know how difficult it is. I use to try to relax in the bath every night, take a book, have a read, me time, it helped, but I was always aware I was on call 24/7, and reading your post brought back very sad memories. I do hope you find some peace.

We are on the gentle downhill slope to complete dependency and I realise that DH’s needs dominate my whole life. At the moment it is not possible to find the kind of support which Luckygirl cites, and I do wonder if I will have any kind of life of my own when lockdown finally eases. The only help which would really be useful is someone with a nursing background who would undertake the inevitable unpleasant personal tasks, and that won’t be easy to find. I keep reminding myself that we had over fifty years of “better” before “worse” set in, and I try to accept that.

Same here GrannySomerset the only support we have had is Hospital Appointments onlne. I have tried to keep a sense of proportion as so many others have been so affected by covid.
After 3 years of sliding downhill most of our friends have faded away and have no idea how far DH has deteriorated.

Exactly GrannySomerset! Unfortunately my DH’s health has periodically “dominated” (as you said) our lives a number of times but the past two years have been particularly intense. I’ve been truly blessed by great health but this is the third time in 6 years that I’ve been the point person and health advocate for someone - I’m an only child and both parents’ health failed pretty much simultaneously a few years ago and they passed just 10 weeks apart. At this point after all my experiences with them and DH, medical staff consistently ask if I have medical background!

Nanamar is right to observe that we become honorary medical staff but without the training or anyone to hand over to, and she has had a particularly tough induction. Blossom notes that friends gradually disappear, especially in the present circumstances, and if and when we can see them again they will be uncomfortable with DH’s inability to be a normal social being. It’s all very well the AC saying I must plan ahead and put arrangements in place but I have no idea how!

Granny Somerset, can you afford to pay for a careworker to come and assist you in the personal caring tasks.
even if you do not need one yet, it might useful to start looking around, to find an agency or an individual whom you feel might be suitable.
if you cannot afford it, you might be able to get help to pay for a few hours from social services.
i presume he has already claimed attendance allowance at the higher rate.

i know what OP means. i don't think you have to make any allowances for that person. you have got enough to deal with, without having to carefully handle her mistaken expectations. your husband is your priority, not these so-called friends.
i wish you all the best.

Nanamar I’m so sorry that you are in this position and I send all good wishes to you.
I hope that when your friends and relatives say that they ‘wish they can help ‘ that you say ‘actually, yes you can help’ and then get them to come over and give you some respite, even if they bring some cake and offer to sit with your DH. Maybe your friend thinks that it’s the only thing she can do, as offers to help have been ignored?
The only reason I say this is because when our neighbours wife was ill I offered to help and actually said what I could do, ( shopping, sitting with her, put the Hoover round, cut the lawn) but I was continually told that everything was fine.
Anyway, you are allowed to be a curmudgeon I hope that you can get some respite soon even for just a short time.

When my FiL with dementia was living with us, and he just wasn’t safe to be left alone for more than about 10 minutes, what I longed for was for someone to take him out for a couple of hours, to give me a bit of peace from the endless pacing and the same question over and over and over.

I didn’t particularly want anyone to come and sit with him while I went out - I just wanted some P and Q in my own home.

On the one occasion my BiL and SiL reluctantly agreed to have him for a couple of days, I collapsed on the sofa immediately they’d gone, and slept for 4 hours solid!

Nanamar this is so difficult for you and whilst other people mean well they do not know what it is like to be a Carer unless they have been in that situation themselves. As you say it is all consuming and gives you little time for yourself. What is needed are good friends who listen to what you want rather than telling you what they feel is right for you. When I receive the "If there is anything I can do to help" my response is yes actually you can, here is what I need: Can you drive Mr J to his hospital appointment, pick up his prescription, get some shopping for me, tidy the garden etc. Perhaps this make work for you and I send my kindest wishes to you understanding the hard work that being a Carer entails

Sorry should read may work for you.