jwife
Distinguished member
- Joined
- Jul 10, 2010
- Messages
- 163
- Diagnosis
- 05/2009
- Country
- US
- State
- Alabama
- City
- Lincoln
It is very difficult to write this post. I am one of the caregivers who has complained about how much ALS changed my life. Well, it has really hit home now. My PALS lost his 2 year 4 month battle on Sunday August 14th. This last week has been filled with all those things associated with death. Now I am alone in a silent house and would give anything just to know that he is asleep in the bedroom.
The end came very quickly and as a complete surprise. Wednesday we moved from home health care to hospice. On Thursday, we were planning a visit to Chicago. Friday morning he was breathing rapidly and turning red from the carbon dioxide buildup. I called hospice and his nurse was not on duty. I begged for his old home health nurse to make the visit. She did and told me that he was not moving any air in the bottom lobes of his lungs and it was time to start the morphine and adivan to help him relax and slow his breathing. We did that Friday night. I followed the nurse's suggestion and called my son. He and his family came and did not leave even though they live only 10 miles away. A hospice nurse came Friday afternoon late and again on Saturday morning. She told me to call his family. So Saturday Aug 13th we had company all day. He was alert and talked with everyone. Saturday night around 8 it was becoming obvious that the end was near. I crawled in the hospital bed with him. The smile he gave me will forever warm my heart. At 10:30p.m. he was playing fist-a-cuffs with the 12 year old granddaughter. At 2:30 a.m. he answered a few yes/no questions. Are you in pain (No) Do you need something (No) Final test - Do you love me (Yes). At 4 we changed his sheets because he had been sweating and he was unresponsive. His breathing continued to slow and he passed away at 9:15 on Sunday morning. Just the way he would have wanted to go - peacefully, at home, surrounded by his immediate family. We are thankful that he did not suffer and that he did not linger in pain. So, tonight I sit here alone and want nothing more in the world than to be that caregiver that I so hated being for the past 6 months.
Hug your PALS and tell them you love them. I will never understand how this was over so quickly. I am sorry if this is too much information, but I know that here more than anywhere else there is a shared bond and a common understanding.
Love to all,
Janis
The end came very quickly and as a complete surprise. Wednesday we moved from home health care to hospice. On Thursday, we were planning a visit to Chicago. Friday morning he was breathing rapidly and turning red from the carbon dioxide buildup. I called hospice and his nurse was not on duty. I begged for his old home health nurse to make the visit. She did and told me that he was not moving any air in the bottom lobes of his lungs and it was time to start the morphine and adivan to help him relax and slow his breathing. We did that Friday night. I followed the nurse's suggestion and called my son. He and his family came and did not leave even though they live only 10 miles away. A hospice nurse came Friday afternoon late and again on Saturday morning. She told me to call his family. So Saturday Aug 13th we had company all day. He was alert and talked with everyone. Saturday night around 8 it was becoming obvious that the end was near. I crawled in the hospital bed with him. The smile he gave me will forever warm my heart. At 10:30p.m. he was playing fist-a-cuffs with the 12 year old granddaughter. At 2:30 a.m. he answered a few yes/no questions. Are you in pain (No) Do you need something (No) Final test - Do you love me (Yes). At 4 we changed his sheets because he had been sweating and he was unresponsive. His breathing continued to slow and he passed away at 9:15 on Sunday morning. Just the way he would have wanted to go - peacefully, at home, surrounded by his immediate family. We are thankful that he did not suffer and that he did not linger in pain. So, tonight I sit here alone and want nothing more in the world than to be that caregiver that I so hated being for the past 6 months.
Hug your PALS and tell them you love them. I will never understand how this was over so quickly. I am sorry if this is too much information, but I know that here more than anywhere else there is a shared bond and a common understanding.
Love to all,
Janis