I started being a carer for my husband, Roger, when he came out of hospital in March 2012 after 6 months in Stoke Mandeville and Amersham rehab. He’d had a blood clot on his spine which left him paralysed from the waist down. He then had a stroke which left him paralysed on the left side.
I care for him 24 hours a day with 2 carers every morning coming in to hoist him from bed to commode, then shower him and part dress and put him back to bed until 12noon when they come back to hoist him into his wheelchair for 3 hours, then back again to undress and put him back to bed. I feed him all meals as he very soon gives up only having the use of the right hand and whilst in hospital lost two and a half stone – he is now 10 stone. He has physio privately twice per week as he is not entitled to NHS physio. I participate in this hour session so that five days a week I can give him the physio for one hour to help him.
I am on duty all the time day and night I have to administer 10 tablets with his breakfast, four lunchtime after lunch, two at tea time and four before he goes to sleep. In the night he wakes up after a couple of hours for morphine which I give him orally.
He may wake again if he needs a drink or just cannot sleep. He is on a flip flow so every time in the day he needs to spend a penny I have to open the flip flow and hold the bottle.
I get out for two and a half hours once a week allocated by Social Services to get the shopping for the week. I go on the bus because I find if I have to wait 10 minutes or more for parking this reduces my time for shopping, I only just manage to do half the week’s shopping in that time, my son comes from Battle every Saturday to allow me to get out to finish the shopping etc.
I feel I have no life at all now my entire life is taken up with nursing Roger. I have all his drugs delivered by the
chemist as I cannot get out to get them. He has had six trips back to hospital since March. On each visit I stay with him in the hospital sleeping by his side on a chair. If I’m lucky I may be given a blanket but not often. I cannot leave him because he gets extremely distressed thinking he is going to stay in hospital for months again and also the nurses do not have the time or inclination to feed him so I do this.
I am tired all the time and feel totally abandoned to get on with looking after Roger. The only other option is for him to go into a nursing home which I would never, ever agree to as I know he would not survive very long. I used to be a very sociable person but find now I see so little of people that when I do I find it hard to concentrate on a conversation. I feel that my life as such is over and all I do every day is get up at 6am after, perhaps (if lucky) three hours sleep and spend the entire day looking after Roger. But I love him so much as we have been married since March, when we had the ceremony in the bungalow but have been partners for 4 years. I married him to secure his peace of mind that I would not leave him or put him into a home.