I was living alone after losing my Dad to heart disease in 1988, my husband to cancer in 1989 and my mother to cancer in 1992. My sister, her husband, and I then decided to build a house together. They sold their old house and came to live with me while our new home was being built.

      That was when his 'foot drop' started. He had been pitching for the town league softball for years and decided this was his last year to play. I think his balance was affected then. He was an electrician and did the wiring on our new home. They built a cape and I added on a breezeway and a smaller home for me. It is more like one extended home as we keep the doors to the breezeway open.

    They moved in Dec 1994. He had been going for tests to find the cause of his 'foot drop' and in April 1995 my sister told me he had been diagnosed with ALS. This was about one year after the first symptoms. I hadn't sold my home but moved into my new one anyway to be with them. Their daughters were about 17 and 20 then, one just out of high school, the other in college. They didn't tell the girls for quite a while, wanting to 'protect' them, it hit us pretty hard and I think we felt we needed to come to grips with it ourselves first. I say WE because from the minute I heard the diagnosis  we became a 'threesome'. Paul (PALS) was 6'3" and still over 220 lbs. six months before he died. My sister and I are just over 5'.

    Paul soon had difficulty walking but didn't want to give in to using a cane etc., he would hold onto the wall to get around in the house and my sister would support him walking to the car etc. Paul was a mighty man, the one who would chop down the biggest trees, climb the high ladders at the power plant, no job was too much for him. So many PALS seem to be extraordinary people, either in strength, intelligence or fortitude. That is why I think a story needs to be done, a movie maybe, on a PALS showing the powerful person they were before ALS. It would be great for awareness.

    People need to know that ALS can happen to anyone. PALS are not people who were always sickly, more often they were extremely vibrant people. Well, as time went on Paul was in a wheelchair and was using a bi-pap. Early one morning my sister was in his room (they had made the downstairs den into his bedroom) and noticed his color was bad, (she had been in to see him only shortly before and he said he was fine). She called 911, they responded quickly and had to revive him, we would have lost him that day if not for the quick response of EMTs. He went to the hospital and then had to make the decision to trach or not.

    Paul was never one to make decisions, left everything up to my sister and this one was no exception. I think he saw that we were willing to be there for him and finally decided to be trached. After over 6 years of dealing with ALS, three of them while he was on a vent, I still say there is no right or wrong decision and it must be made by the P’ALS. He was at MGH in Boston for a month and two more months at rehab. The two months at rehab were not necessary. We stayed with him all day and went to the house on Beacon Hill, which the hospital rents to families at night. Many nights my sister slept in his room at the hospital. On subsequent hospital stays we stayed day and night as he was unable to communicate and wasn't sleeping all night.

    He had a nurse visiting once a week and a health aide most days after he got the g-tube. Then when he came home with the vent he had per diem nursing. Sixteen hours a day were allotted but because of the shortage of nurses and the fact that few want to work with vents, many hours were not covered. Some days we went night and day with no nurse. In the beginning it's scary to be alone with full responsibility, later you become comfortable with the vent but after time you become very weary. We went thru many nurses before we had ones we trusted. We always had two people in the house and needed three to safely transfer him from bed to wheelchair.

    Because my sister was his primary care giver I usually stayed home to allow her to get out during the day when a nurse was here and I had them wake me at night as I could sometimes catch up on sleep in the day. We often said that dealing with insurance, medical supply companies, Medicare, nurse’s schedules etc., were what wore us down. No one should have to fight for PALS needs while fighting for his life.

    Six months before Paul died his stomach became bloated and he was diagnosed with end-stage liver disease. I believe he would have lived much longer if not for the liver disease as he looked real good and was fairly content, thoroughly enjoying all sports on TV, sitting on the screened in porch with the family and friends and dog coming and going. I think he had resigned himself to his fate. It was only with the liver diagnosis that he gave up. He needed constant care then, day and night. I was not getting enough sleep, became sick, and came down with shingles!! They lasted 3 or 4 months and I was only able to go back helping out the last month of his life.

    Paul’s death in July 2001 was peaceful with many family members and friends here all day and night, most of his nurses came and stayed to the end. We remain close to the wonderful nurses and health aides who were with us the last three years of his illness.

    Well, I have gone on much longer than I planned to. Once you are part of ALS it grabs hold of you and never lets go. I am still on ALS web sites every day, reading posts and answering quests when I can. Two years ago I met a lady on Doug Eshelman’s site who was seeking support, her husband had been diagnosed a few months before. It turned out she lived in a nearby town and we formed our own little support group. Later, two more CALS joined us, one whose son has ALS (only 28 years old), the other has many family members who have/had ALS. We meet for lunch when we can.

Well, that's my story :)
Mary

"Life is a succession of lessons which must be lived to be understood." Helen Keller

 

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