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Fear of the Future

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…

My husband was in his fourth year of needing full time care in a nursing home due to Huntington’s Disease, when he suddenly began to repeatedly try to run away from the facility to go back home. We lived 20 miles away, and at this time, he could hardly take a step without falling. To make matters worse, he began to get aggressive with anyone who got in his way. One day I got a call at work from the Director of the nursing home, telling me they had had an “incident” with Don, and they had had to call the police to restrain him. He was OK, but he had been transported to a local hospital until they could decide what to do with him. He had shoved a little elderly lady when he was trying to make a run for the door to get outside. The little lady had no injuries, but was understandably traumatized. The police were involved in case charges were filed against him.

When I got to the hospital, Don was in a cheery mood. He had no memory of what had happened and was actually loving all the attention he was getting in the hospital. He was put in the ICU so he could be monitored all night. The next morning, two police officers came to take Don to a psychiatric hospital where they could do an evaluation of all his medications.

My heart broke when I saw them place Don in the back seat of their squad car and speed off. I needed to tell Don one more time that he would be OK, that I would check on him daily, and that I loved him. Little did I know that I would be unable to even see or visit him for seven days. Then I could only visit for 30 minutes, twice a week. It was a scary place to visit. I looked around at all the men in his visiting area, and some were huge burly men who seemed to pick a fight with anyone around. Thankfully, Don kept to himself.

I was so afraid for his safety. Fear became my constant companion. Would he be safe? Would his medicines be regulated so others would feel safe around him? When these sorts of things happen to other people, there can be added worries about family finances. They might lose their home. They may have to go down to one car. And then there is medical care.

After I became a caregiver, a whole new set of fears arose. I was not sure I could even give Don good healthcare. I worried about whether I was physically, emotionally, and spiritually prepared to literally give my life to caring for another person. I was uncertain about how long this journey would last or how bad it would get. When I am cooped up in the house 24/7 and can rarely have a meal out with friends, will I even have a social life?

I worried about our two children during these years. How would this all affect them? Both were smart and made good grades in school, and both had close friends. Would they be comfortable inviting friends over… or would I be comfortable with them inviting friends over? We never knew what Don’s mood of the day might be. And, if one of the kids stumbled, or dropped a dish, or forgot something, I prayed it wasn’t an early sign. Only parents of at-risk children can understand what this truly means. This brought me huge fears as I never wanted to see my own flesh and blood have to live their life with HD.

In the end, at the psychiatric hospital, all Don’s medicines were stopped and slowly a few were added back, with a few new ones. He was now very calm and compliant and after six or eight weeks, he was cleared to go back to the nursing home. However, the Director had decided he would not be allowed to move back. Every nursing home I talked with gave me the same answer. No. They were not able to care for HD patients. Eventually, after meeting with the Director at our original nursing home, she agreed to allow him to come back on a trial basis. It was a calm, sweet patient who returned, and there were no more behavior problems.

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There are very real fears and uncertainties that patients with degenerative neurological conditions and their caregivers might experience – even before they know anything is definitely wrong. These diseases have so many possible early signs and symptoms that anger episodes can seem as though the person is just having a really bad day and overreacting. Often, the explosive person forgets it as soon as they calm down and cannot understand why the caregiver can’t just let it go.

I remember being hurt by things said or done by my husband, and it was always up to me to forgive and forget. He saw no problem with his actions and it was just easier for me to be the one to try to make things right. It was happening frequently and I became understandably fearful that this was the new normal.

The best thing I could do at those times was to get alone and tell God about it. He knows the situation, but I can pray to ask for His help for my fears and heartaches because I am His child. He loves to hear from His children and longs for them to talk to Him every day. In Philippians 4:6-7, God tells us not to worry about anything, but to come to Him and let Him know our needs. He gives us a great peace in our hearts and minds. He understands and comforts us! And He is waiting to hear from you, too.

Certainly when I am unsure of what my future might hold, fear often grows as my faith is challenged. Perhaps we see our loved one with health problems but have no idea yet what might be the cause. Every visit to a doctor makes you wonder if it might be the appointment when you get a diagnosis.

Other areas that brought me fear were parts of caregiving that only grew more difficult. My husband had the diagnosis by now and we knew HD could stretch on for years. I wondered which symptom would show up next. How long would he be able to work? When would he decide to make small repairs needed around the house? Every time he drove the car, I was terrified he would have a wreck. His braking response was slow, and his speed control was very erratic with an uneven pressure on the accelerator. But I knew that, for him, giving up driving would not be an easy transition.

Fear is a very normal human response and we learn to express it at an early age. A baby cries in fear when someone else is caring for them and they want their mommy. Kindergarten students are often scared and fearful on those first few days in a classroom setting. As a school age child, I never would go to sleep with one leg out of the covers and my foot dangling off the bed. I had a fear that a tiger or bear would surely take a bite out of my toes.

As a caregiver or friend to those with health problems or who are grieving, I should be ever mindful of the trap that fear places us in. It can stop us in our tracks and the burden of our daily life becomes almost unbearable. I can truly grow in this experience when I allow our Heavenly Father to lead and guide me.

I had to go to the Lord all through each day, to ask for peace in my heart and mind. All through the day I would think of the verse in Psalms 34:4: “I sought the Lord, and he heard me, and delivered me from all my fears.” All through the day his presence helped me put away those fearful thoughts.

In Christ, Amen ☩

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A prayer for when you are feeling fear of the future…

“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 how You love and protect Your children. But today I want to bless you especially for how you are with me every single moment of every day. You know when I am feeling depressed, overwhelmed with duties in life that seem to never end, scared of what the future holds and full of fear. Help me to turn my thoughts toward You when I am weak. Teach me to remember to depend not upon my own abilities, but upon Your strength. Amen.”

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A Family Secret

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…

Do you remember being 18? For some of us, we really have to clear the cobwebs in our memories to go back that far! I was at college, and away from home for the first time. My home life had been very sheltered, and I could be described as naïve and innocent. My daddy had died when my twin sister and I were just 15 months old and our older sister was five. Mother was a strong Christian lady who was determined to raise her daughters in the right path. Second semester of that first year of college brought in some new students. After mutual friends introduced me to a handsome young man from Indiana, we became friends and started dating.

Don was a “life of the party” type guy, and I was much more like a wallflower. I have heard that opposites attract, and in our case it was true. During those months of dating we began to learn more about each other’s family backgrounds. I told Don about my mom’s mother dying of a brain tumor, and I learned he recently had lost both of his dad’s parents. His grandpa died of lung problems that originated during WWI from inhaling mustard gas. And within an eleven-day span, his grandma died in a different hospital from complications of something called Huntington’s Disease. When I asked him about HD, he was very vague and honestly didn’t know much about it, nor how to describe it. He just said she had been sick for a really long time. I remember thinking I would look it up in the encyclopedia next time I was in the college library.

When I did so, I found a total of just three or four sentences describing Huntington’s Disease. It was a neurological disorder. The main symptom was chorea or the so-called St. Vitus Dance. One famous person with HD was Woody Guthrie, who wrote “This Land is Your Land, This Land is My Land.” Given the paucity of information, I decided it must be some minor thing that sure didn’t deserve any worry or concern or further research on my part. We were in love, and nothing else mattered.

Don and I were married in August of 1972. At least a couple times a year, we drove up to Indiana from Missouri to visit Don’s family. We had one concerning, growing question when we visited his parents, and it involved his dad’s health. Something strange was going on, but we had absolutely no idea what was wrong. Shortly after my father-in-law’s parents died, he had to be hospitalized in a mental health facility for several weeks. There he was given some treatments, and different drugs were given to try to help him.

Even though Don questioned his mother about his dad’s health every time we visited, she said the doctors were just unsure of what was causing these mental, emotional, and physical problems, and not to worry about it. His dad was having problems at work over minor issues that he made into very major problems and was unable to continue working. He began stumbling and falling more. At least one wreck in the family car happened with him driving, and thankfully no one was hurt. He was going to several doctors, who each seemed to think adding another pill would “fix” him. Nothing was helping.

Eventually Don’s dad was moved to a nursing home for medical care. If anyone else had even an inkling that this could be HD, it was not shared with Don or me. It was apparently, a family secret. Even when we asked specifically if this could be the same disease that Grandma had on her death certificate, we were told his health problems were different. By mid 1987, my father-in-law was in his third nursing home.

For anyone who is familiar with HD, this can be easily understood. In one nursing home, a male aide made my father-in-law mad and he shoved this guy so hard across the room that he fell and broke his collarbone. The nursing home administrator gave my mother-in-law a short time to find another placement for him. Eventually he ended up in the Indiana State Hospital, the same hospital where his own mother died of HD. Eventually I learned he was the third generation from this family to be hospitalized for HD there.

A social worker took an interest in Don’s dad and saw one of the letters we wrote him. She contacted me to let me know how much he enjoyed the letters, and gave me a list of some things he needed or wanted, so we began sending care packages. This social worker asked me if we were educated about Huntington’s Disease. I told her we only knew my husband’s grandmother died from HD, but had really no other knowledge. She seemed very concerned and asked if she could mail me some information.

I was happy to finally be able to learn more about this disease, but was devastated when the social worker told me my husband could have the gene too. I was just stunned that it could be hereditary. Why had no one told me? Family members knew but no one ever even hinted at this information. Don knew I had begun getting more information about HD, but he responded with irritation and disinterest. We now had two precious children, and soon I realized they could be carrying the gene too.

I read and reread every article I received many times. I wrote to every author, medical center, or university listed, asking for more information. I began to gather a thick folder of articles and pamphlets and searched each one to try to convince myself that our little family would never see this horrible disease. That is one thing about these kinds of pamphlets about HD, nothing is sugar-coated. The Web and Facebook were still far in the future so absolutely everything I knew or could learn was in this published material. The materials gave the doom and gloom picture of HD because there was no current news about possible treatments or testing for the gene. Many of the pamphlets were several years old.

On January 20, 1988, my father-in-law died from complications of HD. I knew he had three brothers, all who were by now healthy, mature men. It seemed Don’s dad was the only one of the four kids who inherited the HD gene, but 25-30 years later, I finally learned the truth. There was also one daughter who had HD. No one had even told me a daughter existed. She had separated herself from her family when she became old enough to leave home, and she was never discussed. Little did I know that when my husband and I first married, this daughter lived just a few houses down the street from my in-laws. I could not wrap my mind around how some HD family members could stick their head in the sand and seem to deny anything was going on. That sure didn’t make the problem go away, nor did it strengthen my trust in those family members who kept this information quiet.

As I learned more about HD, I began consistently seeing those small “soft signs” in my husband. When I shared this with my husband’s mother privately, it was not well received. My greatest need was for someone who had been through this to tell me I wasn’t going crazy; that yes, everything I was describing was part of the beginning signs. She insisted Don did not have HD and I needed to quit thinking he did. It made my life as an HD wife so much more difficult and lonely.

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Despite all the changes and challenges, I have been left with no doubt that I have a Heavenly Father who loves and cares for me. For example, I began praying several times a day, for even one HD caregiving friend. God taught me much about His care of me in the following year. I could go to Him all through the day, to share my thoughts or verbal prayers, and He was always there to listen and comfort me. Daily I thanked Him for how He would eventually answer my heart’s desire. But my need for this kind of Christian friend was overwhelming to my very heart and soul.

After praying diligently for over a year for this HD friend I needed, God gave me three within a couple weeks’ time. One was a man whose wife had HD, and one was a lady caring for her husband. The third was an HD widow, who now had two sons with HD. All three friends were precious to me, all with children who either had HD, or with children at risk of carrying the gene. Most importantly though, we could all pray together.

That was 30 years ago, but my heart is still full of thanks to the Lord for bringing these “angels” into my life. One of my special friends has passed away, but I am still in touch with her daughter-in-law and some of her grandchildren. Two of these friends are still my friends today.

This is just one example of God’s care for me. In the weeks ahead, I will share more of the story of how HD has affected my life as a caregiver. I may not need the support and encouragement I so needed 30 years ago, but I will always stay involved in the HD community, to be a friend to others on this path.

I am often reminded of the first part of the verse in Mark 7:37. “And they (the people witnessing the miracles) were astonished beyond measure, saying, ‘He has done all things well.’”

Yes, He does!

In Christ, Amen ☩

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A prayer for when you need comfort and understanding…

“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 life and breath each day. But today I want to bless You especially for Your presence that calms my worries. Help me to always remember You care deeply about every detail of my life, even when some details are unknown to me. I will trust that Your plan for my life is good, when I allow You to lead and guide me. Amen.”

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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.”