I look at all the wires coming out of her body, her pale
face and the machines surrounding her beeping constantly. I am inside the ICU
with my mother who has had a brain stroke. She had been admitted within what is
called the “Golden Hours” in medical terms wherein a stroke can be reversed but
somehow something went wrong and now she would be a near vegetable for the rest
of her life. My wife is outside waiting for me to come out so that she can
visit her. Fortunately, she is much closer to her than I was. That was the
first big relief. Little did we know this would
continue for two and a half years and we would be staring into the future with
the prospect of things being status quo.
Ten days later her room at home was a veritable hospital
room with a medical bed, IV stand, air mattress, all kinds of pumps. Her 45
year old bed had been dismantled and most of her furniture moved out. Nurses
and maids had taken over our house and life with the occasional
physiotherapists. Overnight – our lives
had turned upside down.
One thing my friend had drilled into my head – to avoid burn
out of the family members and the first step towards it was each person getting
enough sleep. That was the one BIG mantra. Next came the changes in the
relationship amongst the household people – my father, my wife and I, the
latter being more critical of the two. It took us almost six to eight months to
settle down, to iron out issues and to ensure that no chinks showed up in the
armour. Here are the few things that we learned while dealing with a bed-ridden
patient – my mother.
Like I have already mentioned – my wife and I made sure the
other got enough rest, enough sleep. We HAD to be honest with each other –
mercilessly and selfishly – we decided. If one was not feeling rested enough –
the other had to be told and adjustments made. Responsibilities had to be
shared and we decided all the running around would be my part of the job and
her deal would be to hold the fort at home and manage the nurses and maids (I
must admit a woman does a much better job than men in critical situations.)
Each had to take occasional breaks – travelling out was ruled out unless it was
for a day and within 4-5 hours of drive. Hence each had to make plans to take
breaks the way wanted to – going out for movies, occasional dinners, visit
friends homes – anything that would take the mind off the home front.
From a man’s perspective – make her feel more special and DO
NOT take her for granted. Give her parents the same attention that she is
giving to your parents, surprise her (women LOVE gifts specially if it has
anything to do with gold and diamonds!) Never ever feel bad or comment if on
some days she is more concerned about HER aging parents – in fact encourage her
to go and be with them for a week and take off and baby sit your own
mother/parents. All of them will be happy. We did have
two situations when her father was unwell – once it was severe panic attack and
the other a gall stone operation that turned critical. She was hesitant going
(she is the only child based in India) and I had to not only persuade her to
drop everything and go – I also followed her there for few days for moral
support. Off course that ment fortifying my house with additional medical staff
to assuage my father’s worry but giving her the freedom to reach out to HER
parents was of prime importance. Also, when it comes to taking breaks - don’t
be selfish by trying to get more time off than your partner. Be responsible
towards your children and share the load equally (we don’t have children but
this appears to be common sense.)
Two plus years have been a
tremendous learning process for both of us; I always knew she was a giving
person but the extent she can go to surprised me. But what turned out to be a
revelation was her quick uptake on medical situation – she could have matched
step by step the nurses we had and better them even. Maybe she too has learned
something out of it about me but I never asked but I am sure she now realises I
trust her judgements more than I used to before! One great thing was that we
never really had a fight or misunderstanding as far as our role as caregivers
was concerned and I think she more than delivered her share of the
responsibility – more than I did. There WERE some instances when I had put my
foot down on some medical decisions leading to scraps but she consistently
proved me wrong. That is when I decided to shut up and LET HER LEAD.
In the end – keep medically important things handy –
doctor’s numbers, chemist’s number where you can call and get home delivery.
Try and take a short life saving/first aid course. Learn to administer
injections and insulin. Do NOT do away with nurses and maids – DON’T expect
your wife (my wife works at home and gets a better salary!) to do their work –
even if she can, don’t since if she burns out then next is your turn. Keep calm
and cool – losing your head will lead to stress and you will pass it onto
everyone around you. AND take special care of the partner of the patient –
remember, they are going through the real trauma and that too in silence.
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