More on care

Last year I blogged on how difficult it is to find help with caring. This post is is something of an update. My experience won’t be the same as others’. What is available really depends on where you live. But it may provide some insight into the process.

As mentioned before, I need help looking after my husband, because I am chronically ill myself, in full-time employment and would like to enjoy at least some of our relationship as a couple. I have been searching since last spring and I still haven’t got there. I have much more help than I did, but my long-term fatigue symptoms are increasingly exacerbated by the stress of the situation.

In the UK (or at least England and Wales) the starting point for care is a Care Needs Assessment, carried out by your local authority’s social care department. I have actually had this twice but the only thing they could offer was a referral for residential respite care. Other support, for example from Age UK, is triggered by the assessment. I asked the social worker who assessed me how to find private care and they sent me a link to PA Pool, a ‘dating agency’ for PAs, or personal care assistants. The only other support is from the charity Carers UK and the local dementia service which is outsourced to the Alzheimer’s Association. But there’s little they can offer other than advice.

Since last year I have help from two of my friends, which makes a significant difference, but I really need more. As we are lucky enough to have a spare room, I tried to find someone to live with us who could take on light caring duties. Part of the attraction would be free accommodation in inner London, with some guaranteed work, but freedom to do other things. We found someone but this didn’t work out for a number of reasons.

At that point I turned to PA Pool. Unfortunately we aren’t the right people for the live-in PA. My husband doesn’t need round-the-clock care so we couldn’t offer enough hours for most PAs. The offer of free accommodation isn’t a bonus to professional carers: for them, a live-in job is a means of earning a substantial amount of money for very hard and concentrated work. Quality of life isn’t part of the calculation. We actually thought we had someone lined up before we realised there had been a language glitch and he wasn’t interested.

We did, luckily, find a live-out PA whom I hope is going to work out for two days a week. But as yet nothing is completely settled. And needless to say, all of this, plus the uncertainty, is exhausting. After I have found someone, they need to build a relationship with my husband who is far from easy, and particularly resistant to the idea that he needs a carer. One carer shared that he said he finds meeting new people hard. Unfortunately his own friends haven’t been able to contribute.

The sheer quantity of work involved in seeking care is baffling. I am hardly the first person in my situation, yet it seems I have to do everything from scratch. As someone who can literally feel when their energy bar is empty, it’s frustrating and infuriating.

I don’t know if my experience is particularly bad, or if there is just an assumption that every couple will ‘just manage’. Maybe our particular situation is unusual: I have to work, my loved one has no occupational pension and is too young for the state pension (he has a small private one). But, chronic illness aside, I consider myself a capable person. If even I am floundering, what chances for someone more vulnerable?