From patient to carer

While my treatment for breast cancer has ended and the disease is at bay for a while at least, this blog has been comatose – mainly because I had little to add. I see from the statistics that occasionally people find it and browse through some of my musings and I hope that they are of help. One thing I am sure of though is that my cancer was caught early on and so my treatment, though pretty drastic, was successful. If I have any message at all for my readers, it’s to get checked out if you suspect anything abnormal at all.

Changing direction

I wanted now to turn this outlet for my musings into one that is more in tune with my life as it is now – a full-time carer to my husband. I shall refer to him as Mr B.For his sake I won’t go into the details of his illness, but it has turned him from a moderately active 80 year-old, into a frail gentleman needing constant care and attention. And this care and attention is provided by me, with the help of a small army of people around me, without whom I would probably collapse into a nervous, raving heap of humanity. After several months of hospital admissions and re-admissions, Mr B. and I have now settled into a pattern of life at home. And I want to share some thoughts.

When he came out of hospital the first time back in September, I arranged the house around so that he could sleep downstairs. A friendly neighbour helped me to move the bed and sundry other items downstairs to their new location. I had already installed a shower downstairs a year or two earlier. We “borrowed” a commode from the hospital to fit over the downstairs loo and I had grab rails installed in the shower, the toilet and on the outside step. The rollator that I purchased for a cruise years ago (and spurned at the time by Mr. B) came out of hibernation. The house was ready. But it took a lot longer for me to come to terms with my own new life. I had always worked at home. My job was pretty much full-time. During my own illness last year I cut down my workload by selling the webinars business (and thank goodness I did because I wouldn’t have been able to cope with it now), but I am still translating for a few clients. I now juggle between this, voluntary work for local organisations, and caring.

Being a carer can be exhausting. I am ‘on duty’ all day and every day. Even during calm moments when I am getting on with other things (maybe a translation, writing this blog, making a meal, or reading a book) my husband often needs me to help with something, or fetch him something. By the end of the day I am often so weary that I long for my bed, but when I get there I cannot sleep straight away. And just occasionally, although he tries very hard not to, he will call for me a couple of times in the night because he’s got stuck. To save his voice, I have set up our Alexa devices so that he can alert me without shouting up the stairs.

Support networks

There are a lot of support groups for carers – so many in fact that I get confused as to which ones I have registered with. And I have investigated most of them, but I end up not really making use of them. The best of these networks so far has been Foresight – a charity which offers support for blind people. As a result we now receive talking books for the blind from the RNIB and one or two other items of interest. A “Caring for the Carer” group contacted me and some months ago someone came out to visit me. But I’ve not heard anything since. I guess because I am in good health and try to maintain it. But they are there if I need them or am worried about my own wellbeing.

Help from medical professionals

Medically, we are visited by a district nurse every couple of weeks and a doctor from our GP surgery will come out or phone if I am worried about anything. And the local hospice has recently got involved and will be offering extra support, in particular a weekly visit to the day hospice, which will give me a bit of a break for a few hours.
Day-to-day

To help me with the day-to-day care I employ a lovely carer who, twice a week, helps with the personal care and some housework. I can’t tell you how great it is to come back from the gym or the shops to find the bed made, the ironing done, and everything shipshape in the kitchen. She also comes in at least once a week in the evenings so that I can go to choir practice. She will cover if, on occasions, I need to be away for a whole day.As a carer I am in charge of administering all his medication – and he has a lot. It also involves monitoring blood sugar and balancing that with diet and insulin. It’s quite a task to ensure that supplies never run low. I also help him with his computer and various electrical devices. I am very fortunate in that Mr B. does not, in any way, suffer from dementia. I think I would find that very hard to deal with. He loves his Alexa (Amazon Echo – other home assistants are available!) because he doesn’t have to operate any fiddly buttons and simply speaks to her. She’s even getting used to his slightly slurred voice, though we occasionally get some comical results. It’s the illness, not alcohol, that slurs his voice, by the way!

Melding roles

I often think that many of the tasks I perform – cooking, shopping, laundry and so on – are tasks that any wife, especially of my generation, will often perform. Although in a marriage where both partners are equally healthy, those tasks can be shared, with Mr B.’s blindness, I had already completely taken over all domestic tasks. But now I am also responsible for sorting out the garden, for maintenance in the home and for every single morsel of food that passes our lips because meals out are now out of the question. I don’t make life easy for myself, as I am trying to eat less meat – and no red meat or bacon at all. So I often make separate meals, plus countless snacks between meals.And I don’t like leaving him on his own for more than an hour or so. Any longer and I worry about a fall or a relapse while I am gone.

Something to look forward to

I would find this all very relentless – after all, when my helpers have gone home I am the one here 24 hours a day, 7 days a week – if it weren’t for a trip to Singapore to look forward to. My little grandson is growing fast and I need to see him a couple of times a year at least. When I go on such trips, I book my husband into a lovely care home that has a few respite rooms.

With an exciting adventure to look forward to, I am able to cope with the relentlessness of my new role.If you are a carer, I’d love to chat and compare notes. Peer contact is the one thing I’d like to have. And now that I shall have a few spare hours one day a week, perhaps a meetup could be arranged if you are not too distant. So get in touch!

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3 thoughts on “From patient to carer

  1. That’s weird – I could read this fine in my gmail feed, but when I move to WordPress to like the post, the majority of it is displayed as one long, five-letter-wide paragraph in the middle of the
    screen. (Oddly it’s everything from the heading “Changing direction” onwards – bit of a coincidence!)

    Like

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