mysisterskeeper
Active member
- Joined
- Sep 14, 2012
- Messages
- 44
- Reason
- Loved one DX
- Diagnosis
- 00/2000
- Country
- OH
- State
- ohio
- City
- columbus
I have been her caregiver only since this past November. She lives with me. I also have a 19 year old daughter who lives at home. I get frustrated because family always says how they will help but always has excuses. I hate that she is now in the final stages and we aren't on the same team anymore. She seems to have a different perspective than mine. Some things about her medical care aren't so important to her. She seems to be mean sometimes. She forgets sometimes. She gets angry if you point it out because she thinks you are saying she is diminishing cognitively.
She still wears her bipap and goes from decisions about full code to DNR every week or so. She has a feeding tube but still eats small amounts of puree foods for pleasure. I have hospice involved. I get 18 hours of nursing a day and it feels like none because they always need something or she does because they don't do things like I do. I'm tired - emotionally and physically.
I know that as she progresses it will only get harder but I promised her I would do everything I could so she didn't suffer. We argue so much it seems but I'm sure it isn't much at all. I have clinical depression and epilepsy and try to stay as on top of my own health as possible, but sometimes I feel guilty because I realize exactly what I have taken on. I will see things on through to the end. She deserves that much. She goes back and forth about her wishes for a ventilator. I can understand to some extent why. Who would want to live that way.
She still wears her bipap and goes from decisions about full code to DNR every week or so. She has a feeding tube but still eats small amounts of puree foods for pleasure. I have hospice involved. I get 18 hours of nursing a day and it feels like none because they always need something or she does because they don't do things like I do. I'm tired - emotionally and physically.
I know that as she progresses it will only get harder but I promised her I would do everything I could so she didn't suffer. We argue so much it seems but I'm sure it isn't much at all. I have clinical depression and epilepsy and try to stay as on top of my own health as possible, but sometimes I feel guilty because I realize exactly what I have taken on. I will see things on through to the end. She deserves that much. She goes back and forth about her wishes for a ventilator. I can understand to some extent why. Who would want to live that way.