buf68
Member
- Joined
- Dec 3, 2006
- Messages
- 14
- Reason
- Loved one DX
- Country
- US
- State
- Michigan
- City
- Lake Orion
About 2.5 years ago my father (now 44 years old) was diagnosed with Bulbar onset ALS. He was doing really good until just a few months ago. He started falling a lot, and decided that he had to quit working. When he did this, my mother stopped working to take care of him. I was lucky enough to have him walk me down the aisle this summer (4.5 mins to go 100ft, but we did it). After getting married, my husband and I decided to try to help out and we moved into my parents house (into a sort of makeshift apartment in their walkout finished basement). Since this summer things seemed to have progressed rapidly. My father now basically doesn't walk. We had to start feeding him ourselves, and then he started to cough a lot when eating. So next tuesday he is having a PEG tube placed. Things have gotten really difficult in the house. I have a 10 year old sister, and she doesn't even talk about anything that's going on (it's a lot for a little kid to deal with). My mother is having an increasingly difficult time balancing her roles as wife and caregiver. She has respit care that comes 2X per week for 3 hours, and a few other services (home health aid, PT, OT, speech, nurse) that come out a few times a week. It's just been very hard to deal with. My mother had to deal with growing up with a brother who had muscular dystrophy, and all she wanted was a healthy normal life for her family, so she is completely devastated. My dad seems to be getting scared of her, mostly in terms of her inability to deal with her anger. She feels burdened by the disease and all of this, and takes it out on the whole family. My husband and I are a help when we can be, but I'm a full time graduate student, and he tried his best ya know. I don't know how to alleviate her stress. She is having a very hard time coping. It's almost like she just wants him to die already. He wants to get a vent when the time comes that he'll need one, but I am really afraid that somehow she is going to talk him out of it. It's so difficult to deal with all of this, I don't know how anyone else handles it. Really just any words of advice on how to deal with an overstressed (occasionally suicidal) mother/caregiver and also any experience with PEG tubes and their upkeep, and really any words of hope would be highly appreciated right now. Thanks.