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 20 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 — and 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!
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!
The blog originally was posted Feb. 7, 2013.
About the Author
My name is Richard K. Raker, and I am 54 years old. I have lived in Honolulu, Hawaii, with my wife and son for 26 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was totally bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of writing.
First, I struggled through a memoir about the first 25 years of my life, telling the story of the events leading up to my decision to move to Japan. It felt good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew I had. The memoir, A Remarkable Life, Lived by an Ordinary Person, has been self-published using Createspace.com and is available on Amazon.com. After that, I realized that I had a few more stories that I needed to write. I enjoy writing. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It is fun and gives me a much-needed purpose in life, but I do hope that you will enjoy reading what I have written. Thank you all for your love and support. Be sure to visit my blog called A View from Rick's Window, Web page, DVD reviews and Facebook page.