ALS-LOU GHERIG'S HAS NOT CHANGED IN 38 YEARS

 My father-in-law Joe/Giuseppe died 38 years ago today from ALS.

He was diagnosed in 1967 and lived until Aug. 4 1974. 7 years.

First few years he shuffled then started to lose functions.

My mother-in-law Concetta worked fulltime and did his care before and after work.

Pureed his food the last few years of his life. 

A very debilitating disease.

Now people get feeding tubes, oxygen tubes but the end result is the same.

Sometimes there are suggestions of treatment. I was excited when MS was trying something new.

So as time goes on there is always hope that there will be a breakthrough.

Remember the bucket challenge a couple of years back that helped with funding treatment and research.

My heart goes out to anyone living with this condition today.

#ALS#lougeherig'sdisease#neurologicaldiseases#joediedaug41974#reflectivethoughtsbybarbara#barbaradimambro#alsadelibilitatingdisease#diseasetakesatollonpeople

THE WORDS WE SAY

Can create a memory for people. I was chatting with a young nurse who had returned from her maternity leave about a case where the patient had died that both of us had involvement. She remarked that my role as the Social Worker had been more important to the family. She only supported the patient. It made me think of a time in my life where the thoughtfulness of a nurse had made the difference. My father-in-law Joe had ALS- Lou Gherig's disease for 7 years. My mother-in-law, Concetta had cared for him while sustaining a fulltime job to support herself, spouse and mother-in-law. She cared for him doing the diapers when he was bedridden the last 3 years of his life. She pureed his food as the disease had atrophied his throat and he risked choking to death every time he ate. Many of her family and friends in my husband's Italian group were not the most supportive and often quite critical. Questions like- does your house stink from a family member wearing diapers did not actually help with the situation. At the end when he was hospitalized for the last day and a half of his life, it was while we were doing the death watch- that time when you stay with the loved one until the person passes away- that an amazing memory occur. It was two experienced nurses that were supporting us during the six hours. One nurse came in to turn Joe and noticed his body and skin. She looked at my mother-in-law saying did you provide this excellent care? I was 24 years old and knew nothing about skin care and how hard it was to keep the skin intact without sores or ulcers. Sometime later another nurse remarked about the same skin and how beautiful it was. In that short time two wonderful nurses provided more support and acknowledgement about the care Mama-Concetta had given her husband for 7 years than many other close family members. The small things we say and perform stay with the people we have contacted in our lives. If you think your small kindnesses do not count, well they do. My only regret to this day is not taking the names of those two nurses. For my mother-in-law it was the most validating moments. Professionals who understood the love and care she had given. I told this story to my young colleague stating the patient and family we supported that day through their death watch will always remember the care she gave. Do you have a memory of a professional being there for you when you needed him or her? Was someone nasty and you remember the negativity? For the professionals who read this blog, do you have a story to tell?