We Are all Changelings

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

Those who have been following us as a couple (or Jean or Michael individually), know that the blog wasn’t updated last week, as we partook of a pleasant tradition called a “honeymoon.” We were married in Weatherford, Texas at 1 pm Memorial Day afternoon. For our week off, we visited Jean’s older sister Ruth in Arkansas, Michael’s sister in Indiana, and his sister-in-law in Missouri.

While in Missouri, we visited Lebanon, where Michael grew up and graduated from high school. In terms of details, let’s just say that the visit did not go well. The home he grew up in was still there, but nearly everything else was gone. His high school, the places where he used to hang out, everything was just gone. Even the rocks along the cuts in the highway, which were bright and red, were now just black, weathered, and nearly overgrown with small trees and vines. Sad.

As we talked about it, Jean confided that she had experienced a similar reaction a few years back when visiting Springfield, Missouri. That was where she went to Bible College, and where she met her first husband Don and gave birth to her daughter Jennifer – both now dead from Huntington’s Disease. She obviously has no further interest in going back there again.

On the positive side, while in Indiana we visited a small park on the Wabash River, called French Post Park, and found a beautiful park bench where we could sit under the spreading arms of massive, ancient maples and oaks, and fantasize about living the life of Huckleberry Finn.

This panoramic picture gives a sense of what the place was like. What a truly beautiful day.

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When the Lord of the Rings trilogy was released, it became something of a tradition for Michael and his son to attend the first, midnight showing of each installment. At the end of the last movie, there is a scene that was particularly poignant. In it, the hobbits have made it through all their dangerous and fraught adventures, and were home once again in Hobbiton – safe and in one piece. But the faces of some of them are still troubled. The problem is that as anyone who has been through a dangerous and fraught adventure knows, it is possible to come home, and have it not be “home” any more.

But even absent going to war with an evil wizard, life changes you in ways that can leave you feeling alone, untethered and adrift. One of the things that we can miss after a traumatic event – such as the death of a loved one – is a feeling of place, a sense of “this is where I belong”, a sense of “home”.

Neil Diamond expressed a similar emotion when he complained of being, “… lost between two shores…”:

LA’s fine, but it ain’t home,

New York’s home, but it ain’t mine no more…

The fundamental problem, of course, is that as human beings, we are hard-wired to prefer the status quo over change. The issue is that we often associate change with insecurity, uncertainty, and risk while forgetting that change also produces opportunities – often in ways that we’d never imagined. A good example of this is Jean’s experiences caring for her late husband Don.

Thinking back over my adult life, I have had the privilege of getting to know dozens of families who had a loved one needing extra care at home or at a medical facility. Situations can involve families taking care of elderly parents and trying to provide them with as much independence as safely possible. However the greatest number of caregivers I have met through the last 30+ years have been families dealing with Huntington’s Disease, and all ages can be affected. Some patients need only minimal care at the beginning but all will eventually require intense caregiving as they approach the end of their HD journey. This need can extend over many years.

The one certainty of caregiving for both the patient and the caregiver is the need to adjust and adapt. The changes can be a slow progression, or just as often, seem to appear overnight. I would adjust to one new symptom, and suddenly be faced with two or three more within a few days’ time.

There seems to come a time when caregivers can rarely feel completely and comfortably at ease. My home, my haven of rest, was transformed into a place of uncertainty. I remember early symptoms were showing up even before we knew my husband had HD. For instance, some small inconvenience would cause him to react with rage. One such episode I specifically remember was him being livid over a Hogan’s Heroes rerun not being shown on TV when the TV Guide said it would. World War III almost ensued. It was certainly not a “home, sweet home” that afternoon.

Years later as the HD symptoms swallowed up more of his ability to care for himself, we had to begin introducing him to the possibility of moving to a nursing home. I was working 40 hours a week in downtown Dallas and would come home to medication dropped on the floor, broken dishes, or some other great catastrophe. When an opening came up in a lovely nursing home in the area, he was not especially happy about the change but did comply, and over time, he grew to love it there.

However, all of his disability money went to the nursing home now, so I had a sudden significant loss of income. The change was scary and left me feeling uncertain. Still, after working long days, I would go by the nursing home nightly to spend a couple of hours with him and get him to bed. When I finally arrived home long after dark, I would collapse into bed, exhausted.

Tired became my “normal” status.

Five years after he entered the nursing home, my phone rang one winter Sunday morning at 5 am. It was the nursing home Administrator letting me know my husband had passed away in his sleep. Through my tears I could rejoice in knowing he was no longer under the effects of HD. He was 54, and had had HD for 19 years. Finally he was at complete rest with God.

But now there was a new change. Home became so lonely, and I felt lost. Driving straight home from work was insanely boring. I felt unneeded and fought depression. What was my purpose here on earth? Sweet caring girlfriends would invite me out for supper, but the invitations seemed to be just another reminder of how pitifully alone I was. It was all about me.

About a month after the funeral, I realized I was spending every Saturday on the couch doing nothing productive. I knew I was going through some depression, and that I needed to do something to stop this decline. One day as I lay on the couch still in my pajamas, my mind tried to think of just ONE thing I could physically do to begin to fight this cloud over me.

Then it occurred to me: one load of laundry. I could manage that! But God used that one load of laundry to help me realize my attitude about my future life depended on me, to a great extent. Now there was more time to try to help others. As a caregiver, it was somewhat easy to justify not volunteering to help others. Surely I was much busier than anyone else on earth. Eventually, I got involved in some volunteer work and worked to find ways to help others. There is always someone worse off than me, who needs encouragement too. This idea allowed me to turn my thoughts of “poor me” into a realization that I could be useful and a blessing to others. This is where real joy is found!

Slowly, as I got more physical and spiritual rest, the Lord restored my soul. I allowed Him to be my Shepherd and lead me through the tough days and weeks ahead. Yes, changes will come in our lives but we can learn to embrace them and turn them into something good.

In Christ, Amen ☩

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A prayer for when you are going through changes…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your timeless and eternally constant nature. But today I want to bless You especially for showing me how to find real joy and comfort in the midst of difficult times. You love me and care deeply about my everyday life. Help and strengthen me as only You can. Teach me to lean on You when my heart is lonely and breaking. Thank You for providing friends who encourage me, and help me to be a friend to others in need. Amen.”