Sibling ALS
New member
- Joined
- Oct 22, 2014
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 10/2014
- Country
- US
- State
- Florida
- City
- Auburndale
I am reeling from the shock of being diagnosed with the disease that killed my brother seven years ago. He was 59 when he died. I am 59.
I was told that the average life expectancy is 3-5 years. Tom only had 19 months.
I am beyond scared. I am terrified! I nursed my brother. I know what lies ahead. My husband doesn't know how physically and emotionally demanding caring for me is going to be. I told him that if my care gets to be too much that he has my blessing to put me in a nursing home. He vows that he would never do that.
My thoughts are swirling like leaves in a whirlwind. Tears come on like sudden summer squalls.
Let your family and friends know that you and your caregiver are going to need a lot of support as the disease progresses. Prayers, cards, postcards, phone calls and visits will be most welcome so that you don't feel like a leper, isolated and forgotten. Circle the wagons early!
I sent a letter out in all of the Christmas cards that first year, telling of Tom's diagnosis, explaining what ALS was and how it would affect him and asking for support. One cousin sent a postcard with a note every month. Those postcards meant the world to Tom.
At this point I don't know if it is better to know what's coming or to be ignorant as I was before.
I am a Christian. I don't know why I was given this cross to bear but I do know that God will give me the strength to carry it.
I was told that the average life expectancy is 3-5 years. Tom only had 19 months.
I am beyond scared. I am terrified! I nursed my brother. I know what lies ahead. My husband doesn't know how physically and emotionally demanding caring for me is going to be. I told him that if my care gets to be too much that he has my blessing to put me in a nursing home. He vows that he would never do that.
My thoughts are swirling like leaves in a whirlwind. Tears come on like sudden summer squalls.
Let your family and friends know that you and your caregiver are going to need a lot of support as the disease progresses. Prayers, cards, postcards, phone calls and visits will be most welcome so that you don't feel like a leper, isolated and forgotten. Circle the wagons early!
I sent a letter out in all of the Christmas cards that first year, telling of Tom's diagnosis, explaining what ALS was and how it would affect him and asking for support. One cousin sent a postcard with a note every month. Those postcards meant the world to Tom.
At this point I don't know if it is better to know what's coming or to be ignorant as I was before.
I am a Christian. I don't know why I was given this cross to bear but I do know that God will give me the strength to carry it.