biotron2000
Member
- Joined
- Dec 30, 2008
- Messages
- 12
- Country
- US
- State
- CA
- City
- Bakersfield
I'm Patrick and I'm 45. My wife, Jacki, 44, has had ALS for 6 years. We have no children. Jacki can't talk, eat, move her arms or hands, walk, or lift her head. I quit my job to care for her because hiring help would have cost more than I made. No choice, really. It's been three years since she was able to eat or walk. Thankfully, her neurologist believes in being proactive and she had a PEG tube and hoyer lift before she needed them. Were are just scraping by financially, having blown through all of our savings and retirement accounts just living.
I did everything myself for the first few years and got burned out. My family has been no help at all, but her family raises funds to pay for a caregiver to come in for a few hours Monday through Friday to get her showered, dressed and ready for the day, and I have her by myself on weekends. I manage to get out for a couple of evenings a week if I can get a sitter.
The problem is, and I hate to say this, but I'm ready. For three years, we have been in a holding pattern, and we just sit around waiting for her to die. The only change in that time is the loss of strength in her neck. (She has a computer with Dynavox software and she can still use it if we prop her head up, a task that needs to be repeated countless times during the day.)
I feel horrible for wishing she would die, but I hate seeing her like this and I miss the life we used to have. Selfishly, I also want to move on with my life before I am too old to live it.
Does anyone else ever feel this way, or am I just a bad person?
Thanks for reading,
Patrick
I did everything myself for the first few years and got burned out. My family has been no help at all, but her family raises funds to pay for a caregiver to come in for a few hours Monday through Friday to get her showered, dressed and ready for the day, and I have her by myself on weekends. I manage to get out for a couple of evenings a week if I can get a sitter.
The problem is, and I hate to say this, but I'm ready. For three years, we have been in a holding pattern, and we just sit around waiting for her to die. The only change in that time is the loss of strength in her neck. (She has a computer with Dynavox software and she can still use it if we prop her head up, a task that needs to be repeated countless times during the day.)
I feel horrible for wishing she would die, but I hate seeing her like this and I miss the life we used to have. Selfishly, I also want to move on with my life before I am too old to live it.
Does anyone else ever feel this way, or am I just a bad person?
Thanks for reading,
Patrick