Larrytbm
Distinguished member
- Joined
- May 13, 2017
- Messages
- 102
- Reason
- Lost a loved one
- Diagnosis
- 05/2017
- Country
- US
- State
- TX
- City
- Austin
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.
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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