I am interested to find out if anyone is in a similar situation to me. I work full time and look after my husband who has SP MS. I provide all personal care (washing, dressing, intermittent catheterisation, assist with going to the toilet and transfers in and out of bed. As I work we get no financial support other than DLA, and are not eligible for grants. I have put us into debt with adapting the house (downstairs toilet, lift, ramp, air mattress, bespoke wheelchair). we have community nurse support once per day mon-fri and they will support more if needed. I have a conflict in that I am exhausted but do not want anyone else looking after my husband. At the same time, having to figure out all of the issues around continence, infection, pressure ulcers seems to have been a battle my husband and I have had to fight alone. There is so much focus on treatment and not much support around quality of life. We have had little assistance from social services or the seemingly invisible MS nurse and its difficult to research if you have 5 16 hour working days (work and care) and a weekend to catch up on sleep. To be clear, I adore my husband and I do not like the word “carer” . We are both now in positions neither of us wanted to get into but we are so need to crack on. I can’t be the only person in this situation so would be interested to hear if there is something I have missed. Respite is not an option.
We have lived through a situation like yours ,my wife has had ms 20 years now and is very disabled ,I look after, as always, as I did before Ms IM more domestically suited to care , its just the way we are,My wife cant speak now or move, eat etc,They have been the toughest symtoms to accept and cope with,for some unknown reason, my wife laughs at my jokes,or is it me , im not sure ,she cant speak but she can still do sarcasm, which is fantastic. To me, a moan of derision is like heaven ! , We still connect, thats really my point ,if you can still connect you have everything you need. You sound like a great couple all the advice I can give is, little victories ,Like managing to go out or go on holiday, even though its difficult. Going up a mountain ,seven years ago I took my wife in a wheelchair, my two year old daughter ,and eight year old son up mount snowdon in Wales on the railway ,Im not sure my wife was that impressed but we did it.Even now Im draging her out in her reclining wheelchair, to the cinema and shows fetes etc okay she sleeps a lot and slips in her chair somtimes ,which is risky, but we must go on ,but it is as you say a lonley road, unless you want services but like you I dont .
Hi, I am the cared for in our house. Fir 11 years my hubby was my sole carer and although he wasnt working, he has pretty bad rheumatoid arthritis to cope with.
I felt so guilty as he bent down or had to take my weight when i fell, and he groaned or winced in pain.
He was adamant that he and he alone would look after me.
But it was taking such a toll on him…and our relationship.
I had to go behind his back to arrange outside help. he was furious at first, but now sees the real benefits we both enoy, as i have a morning carer to geet me up and ready for the day, plus 2 others who take me out and one does a sleepover a week. My hubby always has a wonderful night`s slepp when he doesnt need to listen out for me.
So back to you hun, I dont think you can carry on working and seeing to your hubbys care. You will probably burn out and then youll both be in a state.
It is admirable the way you do what you do, but in the long term, it may break down.
I use Direct Payments to pay for my 3 carers and I was means tested for it.
luv Pollx