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Hi from a new carer. - Carers UK Forum

Hi from a new carer.

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My name is Irene and I am 69 years old and a carer for my husband who is also 69. He had a stroke in early May which affected his left hand side. He can no longer use his left arm, is very unsteady when he walks, shuffling his feet and has to use a stick for balance - he can't use a walking frame as he can only hold on to it with one hand. He has lost the sight in his left eye and also has very little feeling in the left side of his mouth. Our lives have turned upside down now as I am the one who now has to look after him. He was always a very man's man, handling all the family finances and making the major decisions, that's what it was like for our generation. I had a dreadful job trying to understand the various bank accounts but our bank assistants were great and got me to put my name along with his on all accounts in case he took a further stroke. He isn't very happy with this decision but it had to be done. We have carers come in morning and evening to get him washed and dressed. He has a permanent catheter as his kidneys would empty and they see to this at each visit. I have to empty it during the day however. We have 3 children who do not live close to us, although only about half an hour away by car. They have all got young children and jobiss to go to, so I am left to get on with things by myself. I know I should't feel resentful that he has had a stroke but I do. I know it isn't his fault and his life has come to a halt, but my life has also been turned upside down. I was never one for gadding about but at least I could go into town for a look round the shops if I felt like it. I also liked to go to a swimming class each Tuesday. I have now gone back to the class but instead of relaxing afterwards having a coffee in the cafeteria, I now have to rush back home to make sure he is OK. He hasn't been in good health for about the past 4 years as he had a heart bypass 18 years ago but now another artery has clogged up and they won't risk any more surgery. His kidneys only work at 32% so has frequent kidney infections which always end up with him being taken into hospital for intravenous antibiotics. I just feel completely trapped in my house even going to the supermarket is a mad rush to get home as quickly as possible. I usually go when he has a sleep in the afternoon but he panicks if he wakes up before I get back. I am so glad to have found this forum, sorry if I sound like a moaning Minnie, but I cannot speak to my family about how I feel. Obviously their first priority is for their dad.
Hi Irene and welcome to the forum. Sorry to hear that you now find yourself in this position. I think you must try hard to get on with your own things and not keep rushing back. These new circumstances could last for years or your husband may improve further in the weeks ahead but if this is the new normal, you will drive yourself nuts rushing home at every opportunity. Make the most of the support the carers are offering and try to make yourself stay for that cup of coffee. In the end that will make you a more relaxed and capable carer if you get plenty of me time.
Hi Irene,
It sounds as if you need a carer's assessment for yourself and also as if it would be worth applying for Continuing Health Care (CHC) for your husband. Your chances of getting CHC vary from borough to borough. You should find more about it by googling - if your husband's condition is regarded as serious enough - he has a 'primary health need' - the NHS should take over responsibility for his care and it would all be paid for. I haven't asked about your finances. It definitely sounds as if not enough is being done for you. If you are worn out and eventually get ill yourself, it won't help your husband either.
I sympathize with you taking everything over too. I have a situation where my brother is disabled and has carers in four times a day and I am able to get out, but I have to be there for every doctor's visit and I have to make a lot of decisions about finances, the house and so on which I'm not used to doing.