Scleroderma: An Unplanned Journey

scleroderma caregiver
I was wondering about stories you hear about these selfless men or woman who tirelessly take care of someone while working three jobs, etc…..these super people type.
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The year 2000 was the beginning of a journey that I had never expected. Someone should have reminded me that things do not always go as planned. A disease called scleroderma entered our lives and never in my wildest dreams would envision what would lie ahead. It would take the courage and strength of steroidal proportions to get me through.  Nine years later I made it through, a bit hardened along the way, emotionally and physically spent, but I made it. I regret how that I did indulge in a bit too many pity parties for myself over the years. After all I was not the one sick.

Mid-summer of the year, my husband Russell would come home from work complaining that he was so tired. I did not think too much of it at first because he had always stayed up late fixing something or working on some household project. After work he’d do things with each of our four children. They adored him as did I. He was a great guy who would go out of his way to help anyone any time of the day, every day. It was tiring just watching him. The fatigue became increasingly more of a problem despite lifestyle changes. I had suggested he visited the doctor to check it out.  His reply was what would be a familiar one heard over the next nine years, “There’s nothing he can do", “It’s just some sort of bug.” It was when his hands turned blue and cupped, unable to move his fingers he finally got it checked out.

Results of blood tests taken suggested that Russ make an appointment with a rheumatologist.  We were there the following week.

The doctor walked into the room with Russell’s lab result and reached out to shake his hand. One look at those hands and the tightening of his facial muscles, she knew immediately what was wrong with him. “You have scleroderma”.

“Sclero what”? he asked. Scleroderma.  My heart sank. I had remembered reading about it. I also knew it was a really bad disease.   Hard skin my husband thought.  Not a bad deal.  Little did he realize at that time that it was not just hard skin but hard everything……heart, lungs, kidneys, digestive system. Systemic scleroderma.   He did not know how sick he was. I felt that ignorance was bliss and I kept it that way for a long time.

I often wish that I could be as nice a person as Russell. Somehow his kind, gentle demeanor would rub off on me. I was angry at him for getting this disease. I found myself constantly asking “why’?  I was angry that my life was about to be turned upside down.  I had to remind myself constantly that I was angry at the disease and not him. He did not ask for this but neither did I.   This diagnosis happened at the worst time possible time in my life. My Mom passed away unexpectedly a few years before, I had been helping my elderly Dad through chemo and my brother would pass away suddenly a month after Russell’s diagnosis. I had also been dealing with anxiety/panic issues. I needed to get over that.  The wrong person had been chosen for Russ to go on this journey with. I felt he deserved someone better equipped as this was a tough hand to given. I needed to quickly learned to play the cards I was dealt.

It did not happen overnight but as the days and weeks progressed you could see scleroderma making more of a presence.  He became more physically dependant on me as this disease slowly mummified every part of his body.  Severely disfigured hands made it difficult for him to bathe and dress himself. Cooking proved to be dangerous and although he could feed himself, I had to cut his food to make it easier for him to eat. His facial appearance was changing. He jokingly called it his free face lift. It was suggested early in the disease that he do physical therapy to help his hands but he resisted. All that keeps playing over in my head is “There’s nothing they can do to help. It is what it is”. He became a poster boy of what NOT to do to when you want and need to help yourself. 

Russell was able to go to work in the beginning.  I had to get him dressed in the morning after getting the kids ready for school.  How I loved Mondays.  I loved the quiet of the empty house.  I needed that quiet even if for just a few short hours.

The disease progressed to the point that Russ had to go on long term disability.  He had significant weight loss …his body looked like bones with a very tight packaging of skin. There would be hand and foot ulcers that would get infected that I bandaged daily for months at a time. There were painful dental issues. Eventually his heart became the most serious issue.  He was hospitalized on a few occasions for congestive heart failure and there were lung issues. Eventually he lost control of his bowels, and bouts of diarrhea found me cleaning up on a regular basis. He would never go to the doctor until things became unbearable.  That expression of his “Oh there’s nothing they can do” would be ringing in my ears,

Because of certain medications he was on Russell’s bones had softened and as a result, he had broke his back while sitting down too hard.  He had a hard time standing for any length of time and was able to walk only short distances.  I did manage to persuade him to go to physical therapy but he would never be the same. After his initial refusal, he finally agreed to get a wheel chair.  I stated that if it were me, I would rather LIVE my life in a wheelchair than NOT LIVE sitting in the house all day.  Just go out and see the world even if it meant doing it sitting down. We did daily outings to the mall, grocery shopping and take our beloved dog to the park.  It was very hard for me to do that but I wanted him live his life as best he could and not by staring at the ceiling.

We soon started arguing daily about anything and everything. He became bossy and demanding. I think he was growing frustrated depending on me and the kids for just about everything short of breathing for him. Taking care of him had now become a job in of itself.  I had another child in an adult body.  It broke my heart to see this happen to a wonderful person but I was tired.

I was wondering about stories you hear about these selfless men or woman who tirelessly take care of someone while working three jobs, etc…..these super people type. You only hear of their good deeds done.  Did they ever get angry about having been put in these circumstances?  I feel guilty for even have entertained thoughts of anger. I had so much bottled up that I didn’t know what or why I was angry about.  I did everything because I loved him and although deep down I knew the outcome was not hopeful, there was a yearning for the life we once had. My days taking care of him were consumed by the questions, “Why did this happen to us” or “What did we do so bad that to deserve this”?

On June 22, 2009, the day of our youngest daughter’s high school graduation, Russ was taken to the hospital via ambulance never to return to our home again. He was acting truly bizarre the day before, Father’s Day. Once again I found myself urging him to go to the hospital. He was having trouble breathing and he was behaving psychotic-like.  As we would later learn, all his heart meds were being reabsorbed into his body making the levels much higher than they should.  As a result only half his heart was working for the whole heart.  He was stabilized there then transported to a nursing home. He hated being there and wanted to come home because he said they were mean to him there. I had spoken to the doctor and he said he could but I’d have to get the family together as it was going to be extremely difficult to take care of him. Didn’t know how I was going to be able to do it.  Somehow I would dig down deep and muster all the strength I had for Russ, to make him happy and bring him home. I couldn’t bear the thought of anyone being mean to him (I did witness myself a few impatient nurses). So I started making the arrangements to get him out. He was growing weaker by the day. I would go visited him two or three times a day with food and magazines but all he wanted to do is sleep and sleep.  He would drift off to sleep in mid sentence.  I had asked why he did that and he once replied “I’m going to places unknown”.

He never did make it home again.  On July 11, 2009 he passed away. I am saddened that I was not there when he passed.  I had helped him through everything else so it would only be right that I helped him do one last thing. 

It was standing room only at his memorial service of people who Russell touched somehow in their lives.  He was loved by all who knew him.  But I can’t help but wonder where all these people were during the nine years that he was sick?  It would have been nice for both of us to have a visit but it was almost as if were hard for some to bear looking at his sick, disfigured body. His Dad, divorced from his mother years ago, never saw or called.  When finally things were going poorly, he was urged just to call or come over.  His dad mentioned to his mom that he had a hard time looking at Russ. She replied, “If you came over more often you wouldn’t notice”.

I have learned a few things during the past nine years. The first is that guardian angels can come in an earthly form, friends that you can count on anytime for anything. They were very few.  Second is to make time for you. A caregiver cannot help someone else if they do not help themselves.

Third is don’t ask, just do.  Most people are reluctant to say how much help they really do need.  Help does not have to be physical. Visit, offer a warm hand, and shoot the breeze.

I am at an odd sort of peace with his passing.  It’s ok. I mourned the greatest, most wonderful guy ever during the nine years of him being sick.  I miss the guy I had married, not the sick one for they were two different people.

It has been two months since and I am doing alright emotionally. I do get a bit overwhelmed at times as he left me without an income, no life insurance and very little savings.  But I’ll pick myself up, dust myself and try and put one foot in front of the other.  I have my four beautiful kids that are there for me. Time to move on.

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