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Larrytbm

Active member
Joined
May 13, 2017
Messages
96
Reason
Loved one DX
Diagnosis
05/2017
Country
US
State
Tx
First, when Eileen was on hospice, I couldn't share all the details of her passing, even now some of it is more than I can talk about on the forum. When the time came, with two pastors, family and friends in the room, I couldn't let a stranger make the final step. So, I turned off the Trilogy and took the mask off her face for the final time. That is the grief that won't go away.

Otherwise, I feel I am doing well, not sure if it is my strong faith in God, my nature, just other tragedies or all the above. I feel blessed that Eileen's journey with ALS was short, the struggles with the illness have not blurred the memories of life before ALS. I did resolve to remove as much of the disease related things as fast as possible. Most of the equipment is gone, the special sink and lift points off the walls. I'm leaving the roll-in shower and garage ramp. The van was sold. The modifications made to the RV were reversed and I traded it in on a new RV. Drove 900 miles to make the switch, kept me away from home for a week. In October and November I went back to doing volunteer work, so that kept me away from home for 3 weeks at a time. The work kept my mind and body occupied, but group time with all our friends was tough.

I will share this as well. Eileen's faith in God was so strong that she accepted the ALS diagnosis almost immediately. She had the strength over the months to do most of the planning of her own funeral. I don't know how she did it, but her strength gave me strength that I otherwise would not have had. She was happy except for the last few days.

Now I am home and it feels strangely quiet with too much idle time. But I am doing things around the house and getting much needed doctor and dentist appointments done. Went to a group grief session yesterday, supposed to help with holiday grief. But after listening to other's dealing with years of suffering and still needing the group sessions, it didn't seem like an effective solution. Maybe I'll find out I'm worse than I feel right now, will know once the holidays are over. In January and February I will be back doing volunteer work.
 
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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,334
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Larry, please do not grieve that your hands were the ones to give Eileen her well-deserved rest. She would not want you to think that way. You brought her home, and our courage means everything to our PALS at each fork of the road.

From the activity that you describe, your hands are working ahead of being through the initial grief, and feeling empty, unfortunately, is part of what happens whenever you stop. It is something that you have to keep walking through, but it will get easier.

I understand that there is more than you want to share here, but encourage you to share it with someone, if it weighs on you.

Best,
Laurie
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
431
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
Larry,

I too had great difficulty processing some of the events that happened during my husband's illness and death. The first few months after he passed I couldn't even grieve my loss as they overpowered all of my emotions, I couldn't even speak about them. I went to a grief group a couple of times but it was not for me. I found a grief counselor at our local hospice that I began to see privately who really helped me talk about and process what we went through.

I am thinking of you and hope you find the right person that you can work this out with, Kate
 

NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
100
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
California
Hi Larry, I remember when you made your first post. I really wanted to respond to it but I was just knee deep in everything ALS. I don't know where some of these CALs find the time to post.

I find the last ten days which ended with the removal of my wife's mask the toughest part to get over also. It eclipsed everything that happened before it.

It sounds like your doing all the right things: getting rid of the ALS stuff, taking care of yourself, going to a grief session and getting back to your volunteer work. I wish you the best...

Rob
 
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