• Memoriam wall
    • We've created a memoriam wall to remember our friends
    • If you know someone that battled ALS, please add them here
Status
Not open for further replies.

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
 
Janis- so sorry you lost your mate so suddenly. But as you noted, he didn't suffer or really have ample time to think about what was happening. THANK YOU so posting in detail how you are feeling. I have been up more than usual tonight moving and adjusting my PALS. I'm tired, frustrated, angry, and resentful. A major part of me hates myself for it but some of me also can't blame myself. I fear the same will happen to me as it has to you... I'm gonna want more than t tanything to have him in the bed next to mine. I'm often distracted by our three boys (6,5,3) and I'm addicted to my iiPhone. He only wants me to help him-even when the PCA is here. He has been better about transfers- my back is less achy. My addiction w/ my phone is one of my coping mechanisms- eating is another. :(.

I got on the forum tonight looking to vent and find input on how to handle the situation- and there was your post. Again, thank you! Hugs!
 
Dear Janis,

That smile he gave you must have been the "thank you" that was missing before! I am sorry for your pain.

Blessings to you.
 
My sincere condolences are with you and your family.
 
Janice I am holding you and your family in prayer....so sorry for your loss....when my best friend died of cancer someone told me that the pain I feel is equal to the depth that I loved...this really helped me endure the sorrow. You shared your grief with us in a beautiful way, and I thank you for telling your story as it makes me less fearful of my dying of ALS...your husband seemed alert, peaceful, not suffering, surrounded by love....thank you for sharing and giving us pals courage.
 
Janice, please accept my heart felt sympathy at the loss of your Dear Husband. I pray for God's comfort and love to protect you and yours now. You are a courageous woman. His love remains.
 
wow Janis, what a wonderful heartfelt end to what sometimes seemed like an unbearable series of events. How lucky you were to affirm his love for you and to lay next to him, many aren't able to do that and I know he found comfort in the feeling of you next to him.
Thank you for sharing, its important for others to know how quickly the respiratory system can and will fail often in ALS. I hope you find the comfort you seek in remembering the love of your life by helping others preparing for much of what you have experienced as a caregiver, those that are in shoes of the beginning not knowoing which way to turn nor what to do grasping at straws or every minor word those seasoned are typing in caring for ALS.
I'm sorry for your loss
Dianna
 
I'm so sorry for your loss. So many lost and so recently. I'm very glad that his family was with him and that he wasn't suffering. If you need us, we'll be here for you.
 
I'm so sorry for your loss, and thank you for writing such a beautiful letter. Its brought me to tears yet again this morning, and I will pray that you and your family will find peace.
 
Janis
So sorry for your loss, and so grateful for your honesty in what you wrote xxx Ang
 
So sorry

You're story is both beautiful and heartbreaking. Thank you for sharing.

Peace to your family
 
Janis... I'm so sorry. I understand the silence... try to get some rest and be kind to yourself in the days and months to come.
 
Thank you for sharing your experience with all of us. I am very sorry for your loss.
 
I am so sorry to hear of your PAL passing, Janis. I hear your pain and the love that dwells in your heart. Blessings of peace and love to you and your family.
Love and light
Meg
 
Status
Not open for further replies.
Back
Top