Long term effects of caring
When I’m asked about my occupation these days, I reply ‘carer’. It is often written that caring has a big impact on an individual’s life, and, indeed, their freedom; I can only go by my experience. Caring has completely changed my life. In this essay I shall try to explain how.
I’ve actually had three phases of caring: pre-critical illness, during critical illness, and post-critical illness. Viv’s ‘during’ phase lasted fifteen months, after which she began a slow recovery; the effects on me of what happened in that time will last much longer. In an attempt to relate the effect of caring to that of another challenge I’ve experienced, I’d like to go back fifty years.
Daily life and freedoms as a Bluecoat boy, 1971
In 1970 I was admitted to Christ’s Hospital, the Bluecoat school. I’ve seldom claimed to have enjoyed the six years I spent there; it should have been seven but I persuaded my parents to agree to me leaving at seventeen, rather than study further to attempt to get a place at Oxbridge. My first three years were hard: my housemaster chainsmoked and was, I am fairly sure, an alcoholic, and his assistant an unpleasant man from whom most boys - me included - kept a good distance. (Forty five years later he was convicted of abusing boys at the time I was there; we all half-knew something was going on, but, in that environment, it was just accepted.) The things that I found most difficult to accept were the lack of freedom, the rigid whole-day timetable, and the expectation that I should conform to norms (religious, and perhaps social) which I did not wish. With hindsight, I realise that what I needed most was time, and support, to reconcile my firmly-held views with the expectations of the school and those around me.
There were three different daily routines at CH: full days, half days, and Sundays. The timetable on a full or half day, for me as a third former, would have been something like this:
Older boys did stay up later, the extra time in the evening being for more prep. Sundays were different: morning alarm was at 7.45, breakfast was later, and, after half an hour of ‘letter writing’, we were free until lunch, and then free until prep at 4.30. Tea was at 5.30, roll call 6.15, and chapel (compulsory) at 6.30 before we had to go to the dorm at 8.15.
I recall telling my father about our daily schedule; his reply was along the lines of ‘By golly, they keep you pretty busy, don’t they?’. Looking back, it's fair to say that on a full day I had a total of perhaps two hours when I was able to disengage, consider my problems, or read a book on a subject that was of interest to me. On a half day maybe three hours, four on Saturdays, and six on Sundays. So, in term time, I had perhaps twenty two hours a week when I could let my mind wander.
Terms, of course, only took up about 34 weeks a year; I had 18 weeks at home every year, seemingly free and able to do what I wanted and with whom; the time between those periods at home was never more than seven weeks. It was only in later years that I realised how much it had messed me up - for instance, I struggled with relationships, arguably not managing a ‘normal’ relationship until I was in my forties. I struggled to be open and communicate with those I ought to have done, perhaps having found at school that being open and voicing my ideas and opinions did not turn out well for me. I wasn’t alone in having such problems: I was not the only one of my year at CH to marry and then divorce.
Daily life as a carer
In those fifteen months when Viv was particularly ill my daily life took on a structure more rigid and restricting than anything I had ever experienced. The closest I can compare it to, in terms of rigidity of schedule and effect on my mental health, was my time at CH, for, like then, everything had to be done, at the right time, in the right way. I wanted to give her the best hope of at least a partial recovery, and indeed many ‘experts’ have confirmed that her recovery is wholly due to the help I gave her during that time. However, such a rigid lifestyle came at a significant cost to me. Here is my daily routine for that period:
Note that every day was pretty much the same; we maybe had an extra half hour in bed on a Sunday morning, and on Wednesdays we went to our volunteer gardening jobs, so everything was a bit rushed, but, overall, the same schedule applied every day of the week, from March 2017 to June 2018 - fifteen months, with no breaks or real holidays. We did get away from the house, on shopping and hospital trips, but, even then, the above timetable had to be adhered to as closely as possible.
Note the entries ‘Do Viv’s pad’: these involved me either helping her to the loo, her sitting over it while I sorted out her pad, or, at night or early morning, she would have to do a ‘bridge’ on the bed to let me do the necessary. This, of course, included wiping her bum, and cleaning up any spillage; once I did end up changing the sheets and putting on a wash at 1.30 in the morning. I was never required to do that sort of thing at boarding school, but, strangely, the discipline of daily life that I endured at CH had prepared me well. (I wonder, perhaps, whether I should suggest the school might like to add something to their prospectus, along the lines of ‘pupils from CH have, in later life, shown remarkable capability and determination in caring tasks, including wiping the bums of their partners at all hours of the day and night’.)
For the first six of those fifteen months Viv was unable to get up stairs, so she slept on a bed the NHS had kindly provided, in our lounge. I had to sleep in a sleeping bag on the floor beside her. The beds at CH may have been a century old and uncomfortable but they were never as hard as our floor: I often failed to get back to sleep after Viv’s 1.30 am pad change, and I think I averaged no more than five hours sleep a night for that whole fifteen month period. My sleep patterns were so messed up that it was mid-2021 before I started to sleep right through the night again.
During those fifteen months there were few opportunities for me to do anything other than focus on what needed to be done for Viv; it was only in the afternoons, while she had a sleep, that I could read, or catch up with email or other online activity. It's fair to say I had no more than seven hours a week when I could let my attention wander, relax and think of things I wanted to, and hence deal with the stresses of the situation. To put it another way, that year of caring gave me only a third of the amount of ‘personal’ time that I had had in my second year at boarding school; my schedule - including being woken up in the middle of the night, every night - would probably be subjected to criticism from the likes of Amnesty International if it were to be implemented in a prison. I was pushing sixty at the time; youngsters, or those in the services, may be able to cope with such a stressful lifestyle, at least for a year or so, but a sixty-year-old will not be able to take to it without some form of impact on their health.
Effects of caring on my health
I’ve mentioned that it took me over twenty years to get over boarding school. I doubt I will ever get over those fifteen months of looking after Viv. The lack of sleep, and the stress of dealing with someone who, at times, had no control over her limbs, bowels or bladder, drove me to the very limits of sanity. I ended up buying washing-up bowls in sets of six, because they were objects on which I could vent my frustration - we still have two bearing the scars of being kicked across the hall; several more were deposited in our wheelie bin, in many pieces.
I recall spontaneously bursting into tears on multiple occasions, shouting, even screaming, ‘WHY? WHY? WHY…..?’. In May 2017 the NHS physio team made their apologies and left, the kind of help Viv needed did not fit in with the processes to which the community physios were obliged to operate. Save for the agency carers who came for half an hour morning and night, I was alone, deserted by the very support networks that should be there to help, and I very much felt it. Family visited, but - undoubtedly realising the scale of what Viv needed - offers of help with her care were understandably not forthcoming. Some of the agency carers were wonderful, and it was good to have someone to talk to even about the news of the day but they were there to undertake fixed tasks before dashing off to another client, not to help me solve my issues. What I needed was a few hours off here and there, to walk in a field, or look in a shop on my own. I used to recall the walks Viv and I had done in Suffolk the previous summer, and in Essex just a few weeks previously, and wondered whether Viv would ever be able to walk again, and even when I would be free and able to venture along paths and bridleways; at times, in her wheelchair and much as I loved her, Viv seemed to be a ball and chain to which I was attached. I wondered what I had done to deserve this, and my screams were the only way I felt I had to, in any way, deal with it.
The neighbours undoubtedly heard my screaming sessions. Of the three closest households, all of whom were civil prior to Viv’s illness, one has been very difficult ever since this all happened, they now don’t ever have anything polite to say to me. The second was interested in Viv’s recovery, but they have always maintained a good distance. Only with the third would I now feel comfortable discussing even high-level care issues or the challenges I faced. Other neighbours and friends, apart from those at our weekly gardening sessions, had little idea of what I was going through; they saw Viv’s decline, and must have seen her in the wheelchair, but, other than a polite ‘hello’, we seldom had the chance to chat, let alone talk about what were quite personal issues. Even at gardening it was difficult to talk about many of the problems I faced - wiping your partner's bum when she’s slumped on the floor in a seizure, lying in a pool of urine, is hardly the sort of topic for conversation at mid-morning coffee.
Social services visited twice in those fifteen months. At the second visit I was told that I would be entitled to vouchers for agency carers to visit for a few hours once a month or so, to allow me an afternoon off. The lady promised to arrange these, but I never heard any more.
Viv did start to recover, in May 2018, following an operation. Her recovery, however, has been slow and continues now; in March 2021 she had an eye op that did reduce the amount of help she needs from me, but she still needs me, or someone, around much of the time: she has unpredictable memory failures, hearing problems, occasional seizures, and needs help with her medication morning and night. I do have more time to myself than I did four years ago but I am not able to live the sort of life that many men my age can: I seldom go out without Viv.
My mental health has never been a strength in my life, and has suffered from this experience. I often wonder what the future holds, whether I will ever be able to live a ‘normal’ life; at times my behaviour has been unpredictable, with small setbacks often triggering crockery-smashing meltdowns. I’ve had counselling through the local carer’s group; it helped, but it's not a long-term solution. I don’t know what would be.
Stress has many causes, and one cause can trigger another. For instance, Viv’s illness and my caring duties have made it impossible for me to work. Prior to 2016 I was earning something of the order of £70K a year. If Viv hadn’t fallen ill I would still be earning now, and putting money away for our futures; instead we’re relying on drawing down my pension, and Viv’s not very generous benefits and savings, to keep body and soul together. The impact on our financial position pension-wise at age 66 could be something like £250K, and this is another reason for me to worry and suffer stress.
I mentioned how neighbours, friends and family have been distant since Viv’s illness. Whether this is due to a lack of desire to understand what happened to her, or to caution because of my occasional but obvious erratic behaviour, I am not sure, but the result is that Viv and I live a somewhat isolated existence; we have less contact with others than we had before her illness. In some ways we do not mind this, we are, we like to say, ‘different’, but there are times when it would be really good to be able to share a problem, or have some support, from someone else.
This leads to another cause of stress for me: what would happen to Viv if I became ill, or worse? We have discussed this, and what our plans should be, but we would have to rely upon our own resources; for whatever reason, we do not believe we can rely upon much help from friends or family, or the powers that be, in such circumstances.
It's not just my mental health that has suffered. I’ve had a slightly dodgy digestive system since I was young, but as I’ve aged it has become worse. In 2016, about the time that Viv started to become ill, my stomach became more troublesome, and I started on some tablets. Strangely, during the fifteen months of her critical illness, my stomach seemed to behave itself, but in the middle of 2018 things turned quite tricky. I had a gastroscopy, was diagnosed with an ulcer, gastritis and a hiatus hernia, and have been on Gaviscon on-and-off, and Omeprazole, ever since. One effect of this condition is that I often burp, loudly, without any warning; this can happen at the most inconvenient times or in the most public of places. It may be a coincidence but such health issues are known to arise with stress.
Oh, my sex life was one other thing that suffered during those fifteen months: Viv was in no way interested or up to it. No matter how wonderful the NHS may be, it doesn’t provide sex for those missing it, and fantasising about the community physio is no substitute. Yes, this was a cause of stress too.
Longer term impact
As I’ve mentioned, Viv’s recovery continues, but it is not expected that she will ever recover fully. Her hearing, we have been told, will never return in her right ear, and her balance may be poor. Her right eye will always need special care. Her capability in terms of short term memory is unlikely to ever return to ‘normal’ levels. She may continue to have seizures, although medication may resolve that. She will probably never quite get to grips with much of modern technology (smartphones and contactless payment being two examples), and will need help with aspects of her life (finances and medical records, for example). As long as I am alive I shall be helping her as much as I can, but this will not be without some cost to me.
In addition, I expect to continue to suffer from the legacy of the fifteen months when Viv was critically ill. No one recovers from such a traumatic experience in a short period; in what way I shall be affected is difficult for me to predict, but, that I shall be affected, I believe to be certain.
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