This issue has been on my mind since my 54-year-old mother spent a couple of weeks in hospital in January. 99% of the patients on the emergency care ward and later the all-female general medicine ward, were over 80 and had mobility issues. And of those, about 90% suffered from dementia.
After witnessing this, I’ve been re-evaluating my retirement years; how I want to live, and when I want to die.
I should start by introducing you to Olive. She’s 83 years old, married for over 40 years, suffers from Parkinson’s and has moderate dementia. She’s thin, under 5ft, bird-like, bespectacled and ever so sweet, sometimes tending to other patients – her temporary neighbour in particular, who cried while repeating “I don’t know what I’m doing.”
I’m not sure what brought Olive to hospital, but her bed was opposite my mother for 8 out of the 12 day stay as they were transferred at the same time to the same ward, to be opposite each other again.
Lack of space between beds meant there was no privacy so I had a front row seat to Olive’s husband’s conversation with the social worker. Olive’s condition and admission into hospital highlighted his inability to care for his wife as well as himself. As a wheelchair user, he required carers to assist him during the day, but with Olive’s notorious propensity to go for a wander – surprisingly quick and quiet, fast-walking like the archetypal burglar in black on tiptoes – she needed 1-to-1 care, day and night.
Olive was to be moved to a nursing home and her husband wished to go with her so they could be together, at which point the social worker informed him that his needs were being met during the day, so it wasn’t possible. He was understandably heartbroken.
Frieda is a 99-year old German woman with a little dementia. If not snoring away in the corner, she was pleading for help: “Help me. Please help.” On one occasion, while using a bed pan she asked to be wiped, but there was nothing there. Staff took the bedpan away, only to hear pleas for a bedpan again. They realised Frieda was constipated though Frieda herself didn’t appear to understand this. A number of times, a member of staff, a nurse or a healthcare assistant, would explain, until they gave up and left her, despite her repeated pleas for help.
Monica, a devout Catholic, was visited by her priest, who closed her curtains for a little privacy, yet we all still heard the prayers coming from their little cubicle (that’s how I realised they were Catholic – by the different Lord’s Prayer). Earlier that day, Monica was screaming while being washed and having her bed changed. She was frightened by everything: the bed moving, being shifted around on it, and being poked and prodded. No one likes bed baths, whether you’re the patient or the one holding the sponge, but the screams for help coming from that curtained off cubicle were those of fear, as if she was enduring torture as a prisoner of war, the unwinnable war of old age.
Another lady, so frail looking that she had to be in her hundreds, was always asking for something: her pillows fluffed, a cup of coffee, a bedpan – it was non-stop. But it wasn’t what she was asking for, it was the way she asked. That sing-song voice of the entitled. A nurse is not your bitch. They may be paid to keep you alive, but they’re not your servants. Her visitors were few and they never stayed long – I could see why. On the other hand, she could’ve been acting up precisely because she felt starved for attention. In any case, the staff gave this rude lady a wide berth, making her wait whenever she requested aid. I don’t blame them.
But this upset a newly transferred neighbour whom I’d accidentally assumed was a man because she was bald, thin and small-chested. (I didn’t have my glasses on.) She was more fragile than she’d seemed on first impressions. She stepped up to the nurses’ station to ask them to see to Little Miss Rude, and when they were slow to respond, she got upset and asked to be moved back to another ward.
To have to so heavily rely on the kindness of others for every little thing is extremely daunting to me. Scandals surrounding the mistreatment of the elderly in nursing homes have been numerous of late, and there’s no one more vulnerable than a dementia sufferer – unable to reliably recall an incident of ill-treatment or exploitation.
Now I’m not impugning the nurses or healthcare assistants that cared for my mother. Any issues I had could be directly attributed to staffing levels. A few shifts were almost dangerously understaffed and I’m surprised I didn’t see one of them sobbing in a corner at the stress of caring for so many with so few helping hands. I couldn’t get angry that I was woken every morning with a phone call from a nurse requesting me to come in and help. Occasionally I found myself helping other patients (mostly sweet little Olive) because to just sit there and watch another person in need or in danger of hurting themselves or others, knowing the staff were too busy to notice, would be wrong. And cruel.
News organisations getting on their high horses and criticising the 5th largest employer in the world because the NHS employs staff from more than two HUNDRED countries angers me. Over 1.7 million employees are providing healthcare to an expanding population of over 60 million people.
How is the NHS supposed to source employees when it takes years to train to be a doctor or a nurse and yet it must quickly recruit staff during sudden increases in demand for healthcare, during winter, for example? Who is willing to work 12-hour shifts for little money in a fast-paced and stressful work environment, and still be able to show kindness and be polite to the bad-mannered, aggressive or absent-minded patients and their anxious friends and relatives? Not me, and I expect many Brits feel similarly, and that’s why the NHS looks abroad. I have no problem with this. Of course, it gets a little tricky when trying to decipher thick accents, but as long as they fulfil the above-mentioned criteria, I don’t mind spending an extra few seconds clarifying what’s been said.
Grace is a Nigerian nurse with a thick accent. She’s a multitasking goddess willing to do anything and everything, and do it efficiently. I can’t praise her enough. Need a bedpan? She’s there with one. In pain? She’ll grab you some pills. Paperwork? She’s got a pen. Thirsty? She’ll hand you some water. Nothing is beneath her. She does it all. Gently, and with a smile on her face. That is so very rare. Most delegate tasks to those lower than them in the hierarchy, whether it’s the catering staff for food or water, or healthcare assistants for personal hygiene (bed pans, bed baths, etc).
Adelaide is a senior nurse from an African country, and an absolute joy to talk to. The radiant sound of her voice – you can hear the smile in there – engenders trust and you feel hypnotized into becoming light-hearted and sunny in response. Just talking to her brightens your day.
Ron is a cheerful and chatty Filipino nurse, always somehow managing to lighten the mood of the usually depressing atmosphere of a ward filled with the seriously ill.
If anything, I have more of a problem with the doctors than the nurses. I know their time is precious, but courtesy costs nothing. More than one was downright rude, tending to ignore or fail to consider what friends and relatives tell them. I gave up explaining things to the senior doctors and consultants, things that would’ve saved them time. They didn’t listen, so I didn’t talk. You also notice very quickly that a large proportion of hospital doctors and pharmacists are quite young – the newly qualified. A couple of them appeared no older than 18. It’s a little disturbing.
But I digress.
I’d rather die at 60 with all my faculties than live to 100, unable to carry on a meaningful conversation or possess some modicum of independence – even retaining just the ability to feed myself would be enough for me, because there are elderly out there who’ve starved to death or suffer malnutrition through neglect.
Mental health is also a factor to affect my decision. Depression is common. Lack of mobility is one reason. Another, is lack if money. At 27, the age at which I can collect my measly state pension has risen from 60 to 68 in recent years, and I suspect the goal posts will be pushed back further still, or abolished in its entirety; retirement eliminated, we’ll have to work until we drop dead. Also, how many friends would I outlive if I were to reach 100? Too many. Loneliness is an epidemic amid those of advanced years. I don’t want to count myself among them.
Of course, on the wards of the hospital, I was witnessing the demise of the unlucky ones and those in the midst of short-term deterioration. Relatively healthy and robust pensioners leading normal, independent lives exist too. Whether I’ll be the former or the latter, is what worries me.
I, like many, am not rich. Nor do I exercise regularly. Chronic migraine and insomnia sum up my health problems. Both sets of grandparents lived beyond 70 despite hard lives, and thereafter, stroke and cancer were their afflictions. If I had a large and loving family willing to care for me in my old age, as I have been doing for my mother with her inflammatory arthritis, then I wouldn’t be as concerned as I am.
Modern medicine is both a blessing and a curse. I can’t help but wonder at the ethics of prolonging life without considering its quality or standard of living. With old age come the numerous disorders and diseases associated with it. Cancer, arthritis, stroke, heart disease, pneumonia, Alzheimer’s, osteoporosis, cataracts. Everything degenerates until the body eventually stops working. Treating these illnesses is expensive, painful and mostly long-term with few quick fixes.
It’s tragic that euthanasia is still illegal in developed countries, although I do appreciate the complexities of the disadvantages of legalising it. No one should be manipulated or coerced into ending their lives, for example. But having to travel to places like Dignitas in Switzerland shortens lifespans. Anyone assisting you in travelling there can be prosecuted so you must be fit enough to get yourself to the clinic, meaning you must end your life earlier than you otherwise would to ensure those you love aren’t punished for the last decision you’ll ever make. And if you leave it too late, you’re deprived of ending your life cleanly and with dignity. People wishing for the “right to die” should never be forced to resort to starvation and/or dehydration to end their suffering.
However, I’m also reminded of the Star Trek: The Next Generation episode ‘Half a Life’ depicting a man from a world where they kill themselves at age 60 to ensure they aren’t a burden on their children or society. I’m beginning to see the possibility of this becoming a dystopian reality in the future.
We have a growing ageing population to care and provide for – pensioners outnumber under-16s and ‘the over-80s are the fastest growing age group’ in Britain – and the custom that saw grown children take up this duty is waning. Leaving society to pick up the bill and paying for it through higher taxes, for example, recouping care costs from the individual’s estate after they’ve died, seems to be one of the few options on the table.
All of the above has left me contemplating making a living will. No one wants to consider the horrible things that could happen to them, at any moment, whether it be 10 minutes or 30 years from now, but I do think it’s imperative to state your wishes now so that no one is forced to guess and make decisions for you later.