Denise asked us to tell our stories during this week. Those who have been with caregiving.com for a long time knows my story, but for those who do not I will try to briefly tell my caregiving story.
In April of 2006 my husband, Wayne, went into our family doctor for a routine check-up. It so happened that an intern dr. saw my husband 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 the 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 has Multiple Systems Atrophy Type C also called Oliviopontocerebellar Atrophy. This is a rare neurological disease. It has some Parkinson disease type characteristics, but it moves faster. The prognosis is eventual total disability and perhaps even a feeding tube at the end of the progression of this disease. Wayne’s disease affects his speech, balance, small motor skills, and a host of other involuntary body activities. Although he still eats well Wayne has to now have his liquids thickened, so they will not slip down too quickly and go into his wind pipe.
Even after his diagnosis Wayne continued to work until November of 2007. Wayne was laid off at that time because of the economy, but because of his physical symptoms he would not have been able to continue to work much longer anyway. We wanted to have Wayne keep working as long as possible, as we felt that the longer he could keep physically active the better off he would be. Wayne’s job was a very physical job, however, and it was getting too dangerous for him to keep working.
While Wayne was still working he was doing some traditional therapy as well. This was cut short for a couple of reasons. One of these reasons was my own diagnosis of breast cancer in July of 2007 and my subsequent eight months of treatment to fight my cancer. In the meantime between the summer of 2006 when Wayne was diagnosed with his disease until now December of 2009, Wayne has gone from still working, to walking with a cane, to a walker, and now to a wheelchair.
At the present time we are working with a physical trainer. Wayne’s brute strength has increased significantly through these sessions. I am not as worried about him being able to continue to make transfers from his wheelchair to bed, the bathroom, and the car for the foreseeable future. His balance problems, speech problems, and a host of other aforementioned symptoms remain, however.
Life for Wayne and I has changed dramatically in the last three and a half years. Having suffered a serious illness myself, I believe the caregiving role in many ways is the more difficult role. The emotional feelings that surface with such caregiving can be intense at times. I miss the way things used to be. Also the physical demands (like pushing wheelchairs and putting them in and out of cars) are heavier. I weary of having to coax and remind my husband to do the things that are important for him to do to fight the progression of this disease. Finally, more of the decisions fall on me now.
Wayne and I are people of faith. These challenges in our lives are drawing me closer to my Lord God and strengthening my faith and character. No matter what happens we will seek to trust God. The struggles still remain, but I am thankful for the encouragement and strength I daily get from my Lord and the Bible.
Hi Sharon–When I think of what the year 2007 must have been like for both of you–OH! Do you look back and wonder how you made it?
It’s almost been a year of blogging for you here.
I’m so very grateful you share your story with us. Your honesty, perseverance and faith help so many!!
Sharon,
Thank you for sharing your story – I guess since I’ve not been around that long, I was not aware of all that it entails. What an interesting perspective your caregiving role presents with your ‘patient Sharon’ story embedded inside your ‘caregiving wife’ story. In the world of programming, I believe we would call that a subroutine.
As I’ve mentioned before, I very much admire your writing style – your degree of candor is simply inspirational. From previous exchanges, I was already familiar with your faith, but I’m glad to see that it is shared with your husband. Personally, I don’t know how people take this type of journey without faith.
In retrospect, I can see how life’s trials, or ‘opportunities’, were designed to strengthen my faith prior to my caregiving journey. I believe they were prerequisites to the level of faith I have, and need, in my life today. I seriously doubt that I could be the caring, loving and giving person I am today without having experienced those building blocks.
These days I am aware that as my faith strengthens, faith-building opportunities become more complex and increasingly difficult. In my next Derek’s Blog entry I will share one of my most recent ‘opportunities’ that I think demonstrates the rewards of faith. I hope my entry inspires others to stay with their faith even when it seems impossible – just as you ‘all apparently have done throughout your multi-layered ordeals.
Thanks again for sharing, I for one am certainly glad you are here.
-Derek
Thanks, Derek, for your kind words. I’m not so sure that I am a “patient” Sharon. Often I feel very impatient. Oh, to always show the fruit of the Spirit. I agree with you, I could not have survived all this without my faith and the encouragement of God’s Word. I look forward to your blog.