There are events in life that can monumentally change a
person's lifestyle, daily routine, life expectations or carefully designed
plans. Sometimes these events are expected and sometimes they just happen. Being
diagnosed with ALS in 2006, was of course one of those unexpected "events"
for my family and me. Since then, we've had to learn to be flexible and adapt
to all of the cascading changes, big and small, that have occurred in our
lives.
This is a normal and natural state of affairs for most
people. Everyone must be flexible and adapt to change. This is a key concept
for a happy and healthy life, but for families dealing with illness or tragedy,
the changes can be overwhelming and adapting can be a major struggle. I am not
an expert on change, but we have found that it helps if we try to predict,
prepare for, and control the changes as they come. If we are ready for the
change and we have some control over its implementation, it helps to ease the
transition. This is not easy, and it's not always possible, but "planning"
is one of my strengths – perhaps it's from my early years as a Boy Scout – so,
we have prepared for the major change coming soon.
My wife is going
to stop working full-time and stay home with me.
She has been working with the same company for over
twenty years. For the last five years since I have needed 24-hour care, we have
been paying caregivers to be with me during the day while she continued to
work. This arrangement had its pros and cons. One of the pros was that my wife was able to continue working. Working gave
her a sense of purpose and a feeling of accomplishment outside of the home, and
outside of caring for me. It gave us some financial stability and additional
help with medical and dental insurance. However, as my disease progressed and
my need for care became more acute, a major con
began to assert itself – her stress level increased – my stress increased as
well.
Other cons
began to become apparent. For example, those of you who utilize home care will
understand when I say that, "good caregivers are hard to find, and
expensive." Even though we had paid help and many volunteers, as time went
on, my wife found that she was always busy. She had very little time to
herself. She was working less during the day at the office, thanks to a
flexible work schedule, Family Medical Leave, and an understanding
boss/company, but because of the progression of my disease, I required more
care. She continued to be my primary caregiver in the evenings and at night. At
the same time, her responsibilities and workload increased, forcing her to work
late into the night to keep up. We knew the situation was getting more
difficult for her to handle and it was having a detrimental effect on her
health – as well as mine.
I felt terribly
guilty about the entire situation. She felt extremely stressed out.
After lots of discussion, we decided to make the
change. She will continue to work part-time from home, but she will not go
into the office. To offset the loss of income, we will discontinue our
caregivers, except for one special caregiver, which we will keep for one day a
week. This should give my wife the opportunity to get out/away from me for the
day and do things that she needs to do for herself. I will ask friends and
volunteers to come over several times a week to spend time with me, so that my
wife can take a break. We will need everyone's help to make this work.
"Rick's
posse" will be reinstated! (More
on this in future posts.)
We are hoping the stress level for both of us will be reduced
almost immediately. Of course, there will still be things for us to be anxious
about – particularly, financial and emotional unknowns. But, my wife will have
less work to do and less stuff to worry about. We will have time to reconnect, talk
about and do stuff outside of just considering my daily care. We will stay
flexible and adjust as we always have when struggling with this terrible
disease. I will have the best caregiver possible – my loving wife. She will have
time to rest and consider her own health. I will feel less guilty about asking
for help. We may even be able to go out on short excursions to the movies, the
mall, the beach – which will be wonderful. We will do things together. We will
laugh more.
We are prepared. We are in control of this
change in our life. I feel positive about the outcome. Wish us luck!
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