Today I phoned two GPs and asked them how soon my parents were likely to die.
Do I hate my Mum and Dad? On the contrary, I adore them. My beloved and
devoted parents are in their late eighties. January 3 this year was their
64th wedding anniversary. It was also two years almost to the day since they
were forced to live apart.
In December 2004 they seemed fit and well, living comfortably and
independently in their home of 40 years in the Midlands. We are a close and
loving family and spend a lot of time together; I had noticed nothing
seriously amiss. Then Dad fell over and cracked his head on a windowsill.
There was a lot of blood. We spent Christmas Day gathered round his bed in
an A&E unit 20 miles away. The hospital was hideous: uncaring, unkind,
understaffed.
Dad had a chest infection and was very confused. He was also going through
alcohol withdrawal – it turned out that his GP had known for a year that he
was alcohol-dependent, but had been unable to convince him to get help.
We moved Mum in with me, 15 miles from her own home in the opposite direction
from the hospital, while we all got over the shock. Another was to follow.
Her forgetfulness was dementia. She asked the same question six times in 30
minutes. I had to label my kitchen cupboards and write out for her every
night where she was and what was happening the next day. My sister Pam and I
juggled our jobs with caring for Mum and visiting Dad, a two-hour round trip.
Exhausted by the distance, we got Dad moved to a private hospital in our town.
He improved mentally and physically and was having physiotherapy to get him
back on his feet. But soon his consultant told us that he no longer needed
active medical treatment and his insurer declined to go on paying. We moved
him to a short-term private nursing home. He deteriorated; his confusion
returned, he repeatedly tried to get out of bed and fell, he developed leg
ulcers and got MRSA. He became wheel-chair-bound and doubly incontinent.
Then they too declined to keep him and advised us to look for a long-term
nursing home.
Complete strangers to the welfare state, Pam and I turned to the internet to
try to establish what financial help might be available. The answer seemed
to be none, if my parents had substantial savings, which they did – Dad had
astutely, or so he thought, raised £50,000 recently via an equity release on
their house and put it in the building society for their future care needs.
So Pam and I visited six nursing homes in and around our town, all of them
costing well over £600 a week. In four of them the smell of urine hit us as
soon as the front door was opened. Dribbling residents were ranged round
three sides of a sitting room while giant TV screens blared at them
incessantly. Of the remaining two, one had a high turnover of foreign staff.
The only one that looked remotely civilised enough for a former international
sales director was also the most expensive – more than £900 a week. We
filled out a hugely detailed financial statement of his assets and income,
confirmed that he was self-funding, and moved him in.
Winter turned to spring. We moved Mum back to her own home, got her a referral
to a memory consultant and, after much phoning, form-filling and
investigating, found an agency to supply carers to visit her three times a
day.
I tentatively contacted her social services office, having read on the
internet that everyone is entitled to a needs assessment even if they are
self-funding; they sent an ineffectual chap who told us little beyond
agreeing that she was self-funding. I got back on the internet to find out
what benefits she might nonetheless be entitled to; there were one or two,
it transpired.
I called in on Mum as many weekday evenings as possible on my way home from
work; Pam visited Dad as many afternoons as she could. At the weekends one
of us collected Mum and took her to have lunch with Dad at the nursing home;
the other one took her home again afterwards, a 90-minute round trip each
time.
Mum’s daily carers were variable and the agency was unreliable. Mum lost a lot
of weight. My sister and I rang her every day; she was tearful and confused.
We rang each other eight times a day: Have you seen Dad? Can you get to Mum
– the agency can’t find anyone to visit tonight. Have you phoned their
solicitor? Can you get to their building society? Have you rung Mum’s GP to
organise a medicines box from the pharmacy (a friend of a friend told us
about this)? Can you buy Dad more pyjamas? Who’s collecting Mum on Saturday?
Have you rung social services? Can you look for a gardener and cleaner for
Mum? Have you paid her chiropodist’s bill? Can we get together to fill out
these funding forms tonight? Who’s taking a day off work this week to get
her to the memory clinic?
We put our own lives and families on hold and irritated our work colleagues
with the long list of phone calls we had to make day in, day out. It was
relentless, depressing and utterly exhausting – and that was with two of us
to share the load.
At Easter the nursing home rang – Dad had internal bleeding and an ambulance
had been called. Another understaffed, uncaring hospital, another nightmare.
He was pushed, pulled, prodded, hauled about. Somehow he survived and
returned to the nursing home.
The saintly staff wept when they saw the condition he was returned in –
confused, dirty, and with his leg ulcers opened up again because the
dressings hadn’t been changed.
I grabbed the chance of a week’s holiday. The day I arrived home Pam rang –
Mum had had a fall at home and was on her way by ambulance to the same
hospital that Dad had left three weeks before. It was just as grim. We
watched the A&E clock tick round hour after hour while the staff
gossiped at their station with their backs turned.
Eventually an X-ray showed a fractured pelvis. Our hearts sank. They put her
to bed in a disgusting mixed ward. A nurse rang me late one night to say
that my church mouse of a mother was trying to kill the other patients and
could I go immediately. She was incoherent and trembling; I put my arms
round her and we sat for four hours, into the small hours, in a cold
corridor while a nurse phoned other wards trying to find the antipsychotic
drug that they thought she needed. We were both crying. Nobody explained
what was happening. (Much, much later I was told that she had a urinary
tract infection that can induce psychosis in the elderly.)
Fit from years of tennis, Mum recovered physically and returned home. But
spring turned to summer and her memory worsened. We went back to the
internet and found another agency to supply live-in carers – mainly
wonderful South African women who cooked her fresh food and played Scrabble
with her. She put weight back on (but not before her own mother’s engagement
ring slipped off her thin finger and was lost) and I felt confident enough
to skip some weeknight visits, although I still phoned her every day.
Meanwhile, Dad was calmer at the nursing home. We found a wheelchair-transport
charity that took him midweek to Mum while her carer cooked them both lunch.
They were permanently distressed by their enforced separation but at least
we knew that they were secure and well looked-after.
Then the money ran out. By January 2006 they were broke – or, in the
distasteful social services jargon, wealth-depleted. The £50,000 had gone on
nursing home and carer fees, as had the money we raised from Dad’s few stock
holdings and an income bond.
Their only asset now was their house, their only income their state pensions
and Dad’s two small occupational pensions. By the time we discovered (from
the internet again, of course) that social services will step in when
savings diminish to £20,500, they were already well below that and fast
approaching the next threshold of £12,500. Both social services offices said
they were now contributing the maximum, yet Mum and Dad still had a combined
monthly short-fall of about £2,300. Moving Dad into a cheaper nursing home
was unthinkable; he’d been shunted around enough. We appealed to the
charitable trust that runs Dad’s wonderful home, and mercifully they agreed
effectively to waive his top-up. Mum’s dementia appeared to be temporarily
stalled with the aid of a memory drug, and she was secure and calm in her
own home; my sister and I were managing between us to top up her finances to
pay her live-in carers. By last autumn we were back on an even keel.
Then the next crisis hit. In January Mum had two strokes in succession and
was taken back to hospital. She got a bed in another appalling,
old-fashioned “Nightingale” mixed ward. She had lost the swallowing reflex,
couldn’t talk, couldn’t walk. After four weeks on intravenous fluids, a
stomach tube was inserted to feed her by. My sister and I bounced between
Mum’s hospital and Dad’s nursing home. He was desperate to visit her but the
hospital was unsurprisingly in the grip of a superbug and we couldn’t risk
it.
Mum was gradually shunted to the farthest end of the ward from the nurses’
station. Sometimes she was hoisted from the bed to a chair and left
unsupervised; once when I visited, in February, she was in the chair in bare
feet and just her nightie, next to an open window. Mostly she had her eyes
closed; occasionally she would look at us, but it was impossible to know if
she knew who we were. Then the hospital started to ask what our plans for
her were; they couldn’t do any more for her and she was bed-blocking. We had
to decide between a nursing home and her own home. If we moved her into a
nursing home, social services would then require us to sell the house after
12 weeks to pay for her care; as the house is jointly owned, Dad, too, would
then be deemed to be self-funding again. At a combined rate of up to £1,800
a week for their nursing home fees, the money would soon be gone. We toyed
with reuniting them in their own house, although we’d need to install a
downstairs bathroom and hoisting equipment for Dad.
He is wheelchair-bound, doubly incontinent and increasingly confused. He
hasn’t seen Mum since her strokes, and we believe he would be devastated if
he were faced daily with the reality of his adored wife’s pitiful condition.
Better, we think, to keep him in the caring environment that has been his home
for two years.
So we took Mum home. We bullied, cajoled and pleaded with assorted authorities
to provide a hospital bed, a hoist, a pressure mattress, incontinence
supplies, the food bags, visits from district nurses. My sister and I and
her carers were taught how to administer her food, water and medicines via
an electric pump and the stomach tube. She had a catheter but pulled it out
twice, so now it stays out. I have acquired other skills too nauseating to
describe.
The NHS has accepted her for continuing care, meaning that it takes over all
the payments from social services, which should be cause for celebration;
however, at the time of writing it has yet to devise a means of paying her
live-in carers, as it seems it is against the rules for the NHS to make
payments to individuals. The only suggestion forthcoming to date is that my
sister and I might like to set up a company to which the NHS could make the
payments. We being oddly disinclined to give ourselves this extra little
burden, a stand-off has been reached. We are therefore still topping up the
care package to the tune of £130 a week, although we are promised we will
eventually be reimbursed by the NHS. My eyes water at the thought of the red
tape that is going to involve.
So now I have two parents in a condition that can only be described as
pitiful. My once-immaculate and elegant mother is shrunken, withered,
bedbound, incontinent, unable to communicate, fed through a stomach tube;
she has no teeth, her cheeks are sunken, her skin is grey, her eyes, when
open, are rheumy and unfocused. She pulls her knees up to her chest and
claws at her blankets.
My handsome, globe-trotting businessman father is in a wheelchair, confused,
incontinent, speaks with difficulty and has recently had shingles that
swelled up his face and closed up his eyes. They are both being kept alive
by modern medicine far beyond the point of decency, humanity or dignity.
Where is pneumonia, once called “the old man’s friend”, when you need it?
You wouldn’t, you really wouldn’t, do it to a dog. I’m crying as I type
these words, but if I had the courage I would pick up a pillow and help my
mother towards that better life promised to Christians.
Both their GPs are sympathetic to their, and our, plight, and both have agreed
in principle to let nature take its course rather than strive officiously to
keep them alive, but nature is taking its time. Hence my phone conversations
with them today.
Beyond reaffirming that agreement, however, they cannot help me.
I am so angry that we have arrived here. I am angry with Dad for not telling
us about Mum’s dementia. I am angry with Mum for not telling us about Dad’s
drinking. I am angry with myself for being powerless to make it all better
for them with a wave of a magic wand. I am angry with the NHS for the
disgraceful treatment of both my parents in two large hospitals. I am angry
with the Government for its callous underfunding of care for the elderly. I
am angry with social services for the apathy, the lack of help, the
misleading or contradictory information that repeatedly dribbled our way. I
am angry with God for drawing out their end in this demeaning way. If He
does it to me, I shall sue.
Every single thing we have learnt about the care our parents have needed and
its funding we have discovered slowly and with difficulty for ourselves, and
often too late. (Example: when Dad’s nursing home fees had virtually wiped
out the £50,000 he raised via equity release for them both, we approached
his social services office for a financial assessment, and only then did
they point out to us that the building society account was – most
unusually – in Mum’s name, and so the money should never have been used
for Dad’s fees. Our mistake, we hadn’t noticed – but we
were amateurs, and we needed help, and none was forthcoming.) There is no
quality to their lives, and little to mine and my sister’s for the past two
and a half years that we have struggled to do our best for them. But the
very, very worst thing is that our golden memories of two wonderful, loving
parents have been all but obliterated by the sheer, unmitigated, unending
misery of their last months on this earth.
The author’s name has been changed
WHERE TO FIND HELP
Age Concern UK’s largest charity for the elderly: www.ace.org.uk has
free legal, financial and medical advice and information. Freephone 0800
009966
CareAware UK Specialises in elderly care funding advice:
careaware.co.uk or 08705 134925 for free advice
Counsel and Care Charity that offers advice and tries to influence
elderly care policy: counselandcare.org.uk or 0845 3007585 for free advice
Help the Aged International charity working on issues that affect the
elderly: helptheaged.org.uk (useful local support services search) or 0808
8006565
www.privatehealth.co.uk/
elderly Advice on funding private care and home options
Is the care system in crisis? Tell us your experience.
