I’m 40 and a full time carer for my husband (45). He has stage 4 cancer and is on palliative chemotherapy. I have been his full time carer for 3 years. We know his cancer is incurable; he could live another 10 years or 10 months. The cancer has been stable for the past 18 months.
I have employed a cleaner 2 hours a week, but otherwise it’s all on me. I do everything - cook, laundry, help him with his meds, his personal care (he has an ileostomy), shopping, all the household admin, look after our pets; everything. He has no responsibilities. He spends his days watching TV or playing computer games. I cajole him into going out when he is well enough, and he has an electric wheelchair for when he is not (although it is my job to charge it for him and keep it in working order). He doesn’t go out on his own, even though he could do so with his chair. He doesn’t organise things or do anything on his own. He has good days and bad days. On bad days he is very weak, and needs my help to move around our home and personal care etc, but on good days he could do things like cook a meal or walk to the shop and back.
I feel like he’s given up. I feel like I have to think for him and plan for him day to day. He’s not always good with his stoma care - I often find faeces on the bathroom floor, in the sink, shower etc and on his clothes after he has changed his bag. He has had counselling, but was discharged after 3 sessions as he agreed with his counsellor that he did not need it (I have seen the written report). He vehemently denies being depressed.
I have given up everything for him. We’ve had no intimacy in 4+ years; he feels like my son and not my husband. I’ve given up my career to care for him, and I would sorely love to get back to work (we need the money!). Even trying to get a simple night out is impossible, as he’s ill so often I can’t leave him. I feel like I’m living in hell. I have no family at all, and all of his family are overseas. I’m only 40 but I feel 80 years old. The only thing I have that is mine is one hour a week where I see my counsellor. She tells me I am going to have a breakdown if I don’t get some time away, but I have absolutely no way to do that. I have lost the past 4 years of my life to this and I feel like I already lost my husband to it as well. And when this ends I have to try and pick up the pieces, restart my career and keep a roof over my head.
I’m mostly venting but I’m at the end of my tether.
You sound in a state of bereavement for everything attached to this situation. It’s time to bring in more outside help. You will need to draw on all your strength. Your husband is properly not going to change. But you can change your situation.
It’s time to tell him you need to return to work. And for that to happen you will be doing less around the home. Professional care staff will become available for him.
You need to speak with social services and tell them. How you feel and your husband will require help. For now link up with your local carers group. There will be many like minded people and qualified staff who can listen and help you.
You are still young and you need to plan for you own future.
Do you have any security within your home should things change.
Can you afford paid for carers or not? Start by seeing if you can afford a care home even though the fees are a lot. Ask for a needs assessment as well. A social worker also should help you with this. Is he on any benefits? The main ones to apply for and claim are PIP and ESA. Can you go back to work? Is part time work a option?
Citizen’s Advice can assist you with this. Give them a call tomorrow morning or email them etc. When was your last me time opportunity? Me time is crucial for all carers. Your counseller is correct. You need a break seriously. Make sure to obtain a copy of the report written by the social worker afterwards. They should also conduct a financial assessment at the same time.
He receives both ESA and the higher rate of PIP. The one saving grace is that we own our home outright, meaning our monthly outgoings are very low.
I don’t think he needs a care home, I just need some help with his care. Someone to come in a few hours every day to get him up, help him wash and dress and make his lunch. That would at least free me to work. My job is very flexible, hours-wise. But when I’ve looked into it, it seems prohibitively expensive.
My ‘me’ time is literally my hour of counselling each week. I’d like a week away but have no idea how to begin to arrange that. I was hoping he would get stable enough to maybe join his family abroad for a month, so I could have a break. But I doubt that can happen.
I know absolutely nothing about social workers - do they get involved in this kind of thing?
I am grieving, for both my husband and my life. I feel like I’m living in a weird limbo with no idea of when it will end. I just go from day to day trying to have the strength - mental and physical - to make it to the end of the day. Then wake up and do it all again. I’m exhausted.
I do think it is worth pushing to see what you can get. I looked after my late husband for just two years and he needed personal care for only a small part of that, but even doing the rest (organisation, hospital visits, household tasks, being his advocate) was shattering. Towards the end we had carers in to get him up, washed, dressed etc and got ready for bed. The morning shift allowed me time to get washed and dressed myself, or I think I would have been dirty and in pyjamas all day! The people who set up his care also talked about finding respite care for a week, but he did not live long enough for us to try that.
Other people here will have more experience of this than me, but if you get a needs assessment for him (through Social Services at your local council) it will include a financial assessment to see how much he would have to pay. This will be on his income and savings only, NOT yours, even if you go back to work and earn more.
In my experience it is very hard, living in limbo without a timescale, as you cannot prepare properly for anything. I am sorry that is where you find yourself.
These links look the same but they are one for you and one for you husband.
Both can be done together with Social Services.
I thinks it’s important to get your husband registered with SS. My husband is even though I do the care. The information is held on file and easy to access should I have a medical emergency or his care needs change. And I will need help in the future.