New to the concept of caring...but been doing it years

Hi I’m Karin. I’ve been married nearly 30 years and my husband is the person I care for. Many many years ago he had a false ACL inserted which then snapped about 12 years ago. Endless arthroscopies, x rays, consultations and time moving forward. They told him some time ago he couldn’t have a TKR because the knee is so badly damaged. Suffers severe osteoarthritis in that knee along with patella femoral disorder. Spinal implant to control the nerve pain but that doesn’t stop the bone pain. And now the other knee is suffering with same problems.

In Dec 2010 he slipped on the ice and put his knee out of joint in the opposite direction to its normal popping, which put him on crutches permanently. He has slowly deteriorated, a few years ago he started using his wheelchair full time when outside of the house. Like with most carers, I imagine, we never noticed the change in roles and household duties, it just happened slowly.

I do all the jobs he used to do from emptying bins to putting up shelves, feeding his fish to decorating the house. I make all the meals, clean up after us all, go with him to all appointments regardless of what they are for. I order and pick up his prescriptions, I take his car to get fuel each month, I visit his family on his behalf because sometimes the drive is just too much. He does work full time but that is starting to take its toll because of the permanent pain he is in and in January he will reduce to a four day week in order to have a recovery break in the middle of the week. All of the above has changed slowly over the years and its only recently a friend said to me, “do you get carers allowance” I said, “No, cos he works” She said it doesn’t matter because its a payment to you for what you do. The only thing is I’ve never viewed it as being a carer, I’m his wife, “in sickness & in health” that’s what we vowed, so its what we do. But, the reduction in wages is worrying me and so I’m taking on board what she said and looking into claiming the allowance. My only problem is I really don’t know where to start or what to say. I’ve downloaded and printed the form so I’ll have a look through, but I still don’t really know what sort of things to put on the claim form. He doesn’t have appointments every week, so saying 35 hours has to exclude appointments, but then I don’t know, I know making meals and drinks and cleaning up after him will add to the hours, helping him dry after showers on the bad days too, along with things I’ve mentioned above. As my header says, this is all new to me.

Thanks for letting me join the forum, I will definitely be browsing around and trying to get a sense of balance with all this.

Welcome and hello! When filling out the claim form, try to provide as much detail as possible. Give examples. Outline his good and bad days. If you need more help, call Citizen’s Advice and ask to speak with a benefits advisor. Or you can also take a look at their website, there is a ton of useful information on there on all aspects of benefits. Be completely honest. Include lots of information on how his disability affects his ability to remain independent. Explain in detail.
Have you had a carers assessment or not?

Hi Karin, welcome to the forum.
A car accident ruined my knees, and I hobbled around for 5 years before having replacements. Your husband must be in a huge amount of pain, I’m surprised he is still working!

How old are both of you?
Is he claiming Disability Living Allowance/PIP? He will need to do this before you can claim Carers Allowance.
You are already meeting the 35 hours a week because you live with him and are “on call” all the time he’s home!! Read through the list you’ve given us.
How much time do you “ring fence” as being for you alone?

Has he had a Needs Assessment from Social Services, and you, a Carers Assessment?
Do you own, or rent, your home?

Your answers will help us give best advice for the future.
Reading between the lines, are you dreading his eventual retirement?
What is your own health like?
Is your home adapted in any way for him, so that he can be as independent as possible?
Do you have a dishwasher, tumble dryer, everything possible to make your role easy as possible?