It was only me taking care of him 24/7 – Bob and Janet’s Hidradenitis Suppurativa Patient Story

Bob and I had been married for 20 years. By the time he discovered he had this disease we had two sons aged 9 and 15.  Our oldest son, Todd, had been married to Angela for a year and had their first child, Dakken (our first grandchild).

Bob had symptoms before, but of course, the doctor always said they were boils, prescribed antibiotics, and sent him home. It was not until he was about 45 or 46 that he started getting these bumps under his arms, in his groin area and on the cheeks of his rear end. Our family doctor sent him to a specialist in the city (Regina, SK). That was a 72-mile drive, one way, from our small town of Weyburn. He was sent to a dermatologist who knew a bit about this disease and told us she would do more research on it. She wrote out a prescription for a different type of antibiotic. I told her he was already taking another antibiotic from our family doctor. She said it would be alright for him to take both of them at the same time and also gave him some cream Benadryl. She sent her report back to our family doctor. Little did we know that this would not be the end. Hindsight being 20/20, I am glad we didn’t know, so we carried on with life.

My husband worked at a Power and Cable Plant, on the floor, moving power cable, so he sat by his machine for 12 hours per shift. He suffered pain day in and day out. For the next sixteen years, he toughed it out. How I will never know!

Well, within five years he had progressed to Stage 3 (He would have been 49 at the time). The best specialist that he was sent to had her office right in the General Hospital in Regina. Her name was Dr. Krunenkran, an East Indian doctor who specialized in infectious disease and wounds. She had full knowledge of this disease. She prescribed Penicillin and creams and took several swabs. She sat down with us and explained that there was no cure for this disease. It broke Bob’s heart, and mine also. I put on the strong face, I had to. We went home and called the kids in and explained to them what their Dad’s future was.

At age 50 Bob applied for the Lead Hand position at the Power and Cable Plant. They were still 12-hour shifts. We begged him to take a leave of absence. He refused…stubborn as a mule he was. He plugged away at work. Over the course of the following years, he took very few days off and that was not until the last five years. He refused to resign from work or take a medical long-term disability from work. He said he would do that when he could no longer perform his duties. That happened when he was 59 years old. He applied for long-term disability. A lot of paperwork was done. We went back and forth to different doctors and specialists to fill out this paperwork and tried to be patient. By the end of all of this, my husband had no patience left so my sons and I handled it all and he just signed the different papers. Seven months later he received his first cheque. Then life got even worse.

Bob was diagnosed with diabetes, COPD and then congestive heart failure. The next year and a bit it was me and only me, taking care of him 24-7. I called the boys in and told them that I could no longer care for their dad. That I was physically, mentally and emotionally drained and that we needed to get him assessed and place in a nursing home full time. They both agreed and Todd, our oldest son, said he would sit down with his dad and explain the situation to him. Todd said, “Dad, Mom cannot take care of you anymore. She is beyond exhausted she is breaking herself down.” Bob said he knew that. Then Todd told him that I was going to call someone in to have him assessed to be placed in the nursing home. Bob broke down and cried. He said he would die before we put him there.

One week after the talk he died while he was coming down the front sidewalk. I never cried and still have not cried over his death because it was such a blessing. Bob had begged to die daily for the previous three months.

It hit all four of the grandchildren very had and there is not a day that goes by that one of them brings up his name. They loved him deeply, as Bob did them. Our sons are just now beginning to show their emotions and are allowing the tears to flow.

Bob passed away August 20, 2015, at approximately 7:30 a.m.

Janet Bedore

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