Friday, February 25, 2011

My Caregiving Story

I was a caregiver for 4 ½ years to my husband who had a devastating neurological disease. Sadly, my husband died on January 1, 2011. Having been a caregiver myself I know that caregiving is a stressful and sometimes discouraging venture. It is my desire that my experiences of the last 4 ½ years will not be wasted. It is my passion that I can perhaps identify with and help other family caregivers. For this first blog post I will tell my caregiving story.

In 2006 my husband, Wayne and I had already weathered the challenges of raising a family including a few times of unemployment for awhile. 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 dr. saw Wayne before our regular dr. came into the room. This intern noticed that my husband’s speech was not quite right and also that 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 also called Oliviopontocerebellar Atrophy. 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, so they would not slip down too quickly and go 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 caregiving role in many ways was a more difficult role than was the cancer victim role, however. The emotional feelings that surface with such caregiving 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 awhile. 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 4 ½ years after diagnosis. On January 2 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.

Because of my grieving 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 after his death. I have not found that to be the case. Grieving I am told is a process. My grief process is not exactly the same as someone else’s grief process. I can not rush this process, but I have to meet it head on. I believe I am going through layers of grief. I am still grieving the 4 ½ years after my husband, Wayne’s diagnosis. I am grieving what Wayne had to go through, and I am grieving what I went through. I am grieving what we once had, but I am also grieving even what Wayne was even at the end. I have learned, however, at least in my head that pain has a purpose, and pain does not equal peace.  I believe I am at least making 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.