At no point in my previous life did I
ever plan, or indeed expect, to become a caregiver. I am, by
profession, a Graphic Designer, and also spent 26 years as an army
reservist (Territorial Army here in the UK, similar to the National
Guard in the US).
As a result, I've been pretty active –
mountain climbing, rock climbing, skiing, marathon running and
mountain biking. I'm a trained mountain leader and a qualified
mountain bike instructor, and with the army, could have become a ski
instructor.
However, things began to change about
three years ago. Mum, who is now 86, was by then living with me, as
it was becoming clear that she was beginning to have minor problems
looking after herself, nothing major, and for the most part was able
to look after herself.
That was fine, as I was away at work
during the day, and away with the army most weekends.
Two years ago, things began to change.
Mum started to have difficulty with everyday tasks. She became
confused when trying to use the stove or the washing machine. She had
a fall and broke her wrist. Stairs became more difficult for her to
negotiate.
Later in 2011, Mum was diagnosed with
vascular dementia. She'd had a minor stroke a couple of years
earlier, and this was probably the first indication of what was about
to develop. She had also been diagnosed, some years earlier, with
hypertension and type 2 diabetes.
Mum had started to wander when alone in
our apartment, and on one occasion was found outside, cold and
confused. Even though she hadn't wandered far, she couldn't work out
how to get back home. I was at work at the time, and unfortunately,
where I was then working, cell phones were not allowed.
The caretaker of the building in which
we were living, had tried to contact me, but was unable to do so. A
message was left on my phone, and I was eventually able to retrieve
this at lunch time. It was becoming clear that Mum would soon need to
have someone take care of her during the day.
The company I was working for would not
have allowed me to work flexibly, and fit work around caring for Mum,
so a decision had to be made. I'd already finished with the army
reserves that year, so was no longer away at weekends. Now, I had to
make a decision regarding my normal employment.
At the beginning of 2012, I left my
job, and started caring for Mum. I didn't consider myself to be a
caregiver at that point. Mum was still able to walk, and was still
able to carry out many tasks for herself, such as washing and
dressing.
It was however, becoming clear that
we'd need to find somewhere else to live. We lived on the top floor
of a three floor apartment building, with no lifts, and the stairs
were becoming more and more difficult for Mum to use.
We were fortunate enough to find an
alternative ground floor apartment in a small two floor building. The
apartment had been built with disabilities in mind, with wider doors
and a wet room with level access for wheelchairs. When we moved in,
Mum was still able to walk, but just a couple of months later, these
adaptations were to prove invaluable.
At the beginning of October 2012, Mum
was admitted to hospital, having suffered a TIA. She was discharged
after just three days, but her mobility was clearly affected. Over
the next few weeks she began to have even greater difficulty walking,
and by the time she was admitted to hospital again, in early
November, this time with a UTI, she was no longer able to walk.
After spending three weeks in hospital,
she was discharged. At home, we now had a profile bed with a pressure
relief mattress, two hoists, a wheelchair and a commode. Things had
changed dramatically.
It was at this point that my life
changed completely. I now considered myself to be a carer. All of the
activities I had taken part in before, were put on hold. Any social
life I might have had, came to an end.
Mum was now unable to walk, and spent
much of her time in bed. When the weather is good, I do take her out
in the wheelchair, but she doesn't really enjoy it. She's still
convinced she can walk, yet is in fact not even able to stand.
Mum's room has been rearranged to
accommodate the bed, commode and hoist. She has a TV so she can watch
programs or DVDs. One of her bedroom cabinets now houses essentials,
such as medication, continence pads and other equipment such as her
blood glucose monitor, in-ear thermometer and blood pressure monitor.
We have home visits from a care agency
four times a day to help me with Mum's needs. Washing, pad changing
and using the commode. For the rest of the time, it's just the two of
us, apart from two budgies and a small parrot.
Visitors, both family and friends, have
all but disappeared. They just don't understand Mum's condition, and
are afraid because of their lack of awareness of dementia.
Mum is fine in herself, apart from
UTIs, which, in the case of many older people with dementia, is quite
common. She is still able to communicate, but no longer reads or
writes. She does get confused with some words, and this causes some
upset and frustration. Her mood really changes when she needs to use
the commode. Something she really hates.
The commode has stripped her of some of
the dignity she once had. It just doesn't seem right to her, that she
no longer goes to the bathroom, something she has done for much of
her life. Fortunately, the ordeal is soon forgotten, and her mood
changes to her normal sweet and friendly manner.
Keeping Mum occupied is a challenge.
She has dolls and soft toys, which she loves, and talks to. I've
created an activity box with a wide variety of colorful items, from
craft kits, interlocking building blocks, clothes pins, and even
colorful shower puffs.
She also has memory box with old photos
and items to remind her of her past. These help to jog her memory and
get her talking about what she used to do. Much of what she likes to
talk about, revolves around a job she had way back in the 1950s,
before she was married and well before I was born.
Being in bed for the most part makes
eating a little more difficult, especially as Mum now has problems
using a knife and fork. Meals are prepared using foods that can be
eaten by hand, without the need for utensils, and drinks are provided
in sip cups, to minimize spillages.
Of an evening, I sit with Mum watching
TV or listening to her favorite music, mainly from the fifties and
early sixties. Going out, or eating out is no longer an option. Apart
from the visiting caregivers, it's just Mum and me, as usual.
Occasionally a friend does visit, he's
going through a tough time himself - his Dad has terminal lung
cancer, and is not expected to see the year out. We kind of give each
other moral support, and he's pretty much the only one who seems to
understand Mum's condition.
My experience of caring for Mum, has
taught me things I never expected to learn. It has shown me how
rapidly life can change, and how the unexpected doesn't just creep up
on you, sometimes it jumps up and smacks you in the face!
My life has changed, and I have
changed. In a way, I have cared for people for years, by looking out
for junior soldiers in the army. They'd come to me with their
problems, and we'd discuss them, but I never expected to end up
caring for Mum. You just don't. Mum's are just there, and you always
expect that to be the case.
I now do for Mum, what Mum did for me,
all those years ago when I was just a child. The selfless devotion
she showed me when I was young is now being returned, unreservedly,
it is my turn care for Mum. I never planned for it, nor did I expect
it – it just happened. Something that happens to many across the
world, everyday.
You don't prepare to care - but you can
be prepared to care.
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