My Personal Care-giving Story

(In this blog post I am retelling my own personal care-giving story. I first told my care-giving story in my very first blog post at this site. I also tell my story in the introduction to my new book DEAR CAREGIVER subtitled Reflections for Family Caregivers. This is followed by over a one hundred mediations meant to encourage family caregivers.)

I was a caregiver for four and one half years to my husband who had a devastating neurological disease. Sadly, my husband died on January 2, 2011. Having been a caregiver myself I know that caregiving is a stressful and sometimes discouraging venture. It is my desire that my experiences during those four and a half years will not be wasted. It is my passion that I can perhaps identify with and help other family caregivers.

In 2006 my husband, Wayne and I had already weathered the challenges of raising a family including a few times of unemployment. The most recent time of unemployment had been in 2003 when Wayne’s company (for whom he had worked for 39 years) moved out of country. In April of 2006 Wayne had been again employed for over two years. In many ways we were enjoying our “empty nest” time of life.

Then in April of 2006 Wayne went into our family doctor for a routine check-up. It so happened that an intern doctor saw Wayne before our regular doctor came into the room. This intern noticed that my husband’s speech and his gait was not quite right. The upshot of all this was that an MRI was ordered for Wayne. The MRI showed deterioration or shrinking of his cerebellum. Wayne was then referred to a local neurologist and ultimately to Mayo Clinic in Rochester, MN. We were at Mayo Clinic for over a week in late August of 2006, and we also returned to Mayo Clinic in October of that same year for a few days.

Mayo Clinic believed Wayne had a rare neurological disease called Multiple Systems Atrophy Type C. It has some Parkinson disease-type characteristics, but it moves faster. The prognosis is eventual total disability. Wayne’s disease affected his speech, balance, small motor skills, and a host of other involuntary body activities. Although he still ate well, later in the disease Wayne had to have his liquids thickened. This was to prevent those liquids from slipping down too quickly and going into his wind pipe.

In the midst of this came my own diagnosis of breast cancer in July of 2007 and my subsequent eight months of treatment to fight my cancer. I praise the Lord that as far as I know I am now cancer free. My care-giving role in many ways was a more difficult role than was the cancer victim role, however. The emotional feelings that surface with such care-giving can be intense at times. I missed and I mourned the way things used to be in my and Wayne’s relationship. Also the physical demands (like pushing wheelchairs and helping him with the lift) were very heavy. Finally, more of the decisions fell on me.

After being diagnosed with his disease in 2006 Wayne worked for some time. Between the summer of 2006 (when Wayne was diagnosed with his disease) until January 2 of 2011 (the day of his death), Wayne went from still working, to walking with a cane, to a walker, to a wheelchair and then the need for us to get him to a standing position with a sit to stand lift in order to transfer him from place to place.

We were told at the beginning and every thing I read since Wayne’s diagnosis indicated that life expectancy is 6-10 years after diagnosis. Wayne lived only four and a half years after diagnosis. On January 2, 2011 when my son and I went to wake Wayne up for the morning, we discovered that he had died sometime during the night. We were not expecting his imminent death, and hence it came as a total shock.


Since I grieved each step down that Wayne took during his illness, however, I had anticipated that with his eventual death I would have an easier time with the grieving process. I did not find that to be the case. I grieved what Wayne had to go through, and I grieved what I went through. I grieved Wayne's absence. I have learned, however, that pain has a purpose, and pain does not equal peace.  I had to make many baby steps towards healing.

These challenges of the last few years have drawn me closer to my Lord God and strengthened my faith and character. If it was not for the promises and encouragement of God’s Word, however, I would have folded under pressure long ago.