sweetea26
New member
- Joined
- Mar 22, 2011
- Messages
- 3
- Diagnosis
- 01/2004
- Country
- US
- State
- PA
- City
- Abington
I'm just now finding this website and am glad I have. I am 26 and have been my mothers caregiver since she was diagnosed with ALS in January 2004. It has been hard at times but I always try to keep it together, not only for my mom, but my two young children ages 6 and 2. I am an only child and sometimes I get bitter or resentful because my mother is 44, the youngest of 8 children and her brothers and sisters barely help. She has 2 sisters. One comes to visit about once a month and the other comes every weekend to help wash my mom (I'm very grateful for her help). However she has 5 brothers who haven't even so much has called in about a year. It just seems like everyone just forgets about my mom and just goes on with their lives. It hurts, but I just try to hold on and and do what I have to do as her daughter.
I get depressed sometimes watching her deteriorate, and it's hard for me to just get away for a while. To collect myself. So far I have been traditionally taking my children to Disney World every year just so we can get away for about a week. I want to make sure that I keep them occupied and not sucked in to the depression of the household, because it CAN definitely get depressing in here. Their dad, my fiance, has been so very supportive but I can't help but feel bad that we don't get to do the normal couple things as much as we'd like.
I don't know. It seems like it's kinda hard to get family involved and I just need someone to talk to sometimes. My aunt, the one who comes over every weekend, is the one who takes my mom every year when we take the children away. I'm glad that she always agrees to, but I feel like I shouldn't have to work so hard for it. That break. She never just gives me an answer, it's always a run around and call backs and so much an so on, I barely want to ask. I have just started paying her when we want to go so maybe it'll help.
I just wish my mom wasn't like this, and it hurts. Currently she needs help transferring from bed to chair, and using the commode. She can still feed herself (she uses Dining With Dignity forks and spoons), and use a remote. She also wears a BiPAP every night to sleep. Right now we are focusing on making sure she keeps her weight up because she is adamant about not wanting a feeding tube. Her speech is also fairly slurred; others can understand her sometimes but I usually have to help translate.
She was diagnosed on 2004 and I am happy that she was able to last that long, however I am BEYOND nervous that it has been so long that the end could be soon. I'm just worried and just.....I don't know, worried.
I get depressed sometimes watching her deteriorate, and it's hard for me to just get away for a while. To collect myself. So far I have been traditionally taking my children to Disney World every year just so we can get away for about a week. I want to make sure that I keep them occupied and not sucked in to the depression of the household, because it CAN definitely get depressing in here. Their dad, my fiance, has been so very supportive but I can't help but feel bad that we don't get to do the normal couple things as much as we'd like.
I don't know. It seems like it's kinda hard to get family involved and I just need someone to talk to sometimes. My aunt, the one who comes over every weekend, is the one who takes my mom every year when we take the children away. I'm glad that she always agrees to, but I feel like I shouldn't have to work so hard for it. That break. She never just gives me an answer, it's always a run around and call backs and so much an so on, I barely want to ask. I have just started paying her when we want to go so maybe it'll help.
I just wish my mom wasn't like this, and it hurts. Currently she needs help transferring from bed to chair, and using the commode. She can still feed herself (she uses Dining With Dignity forks and spoons), and use a remote. She also wears a BiPAP every night to sleep. Right now we are focusing on making sure she keeps her weight up because she is adamant about not wanting a feeding tube. Her speech is also fairly slurred; others can understand her sometimes but I usually have to help translate.
She was diagnosed on 2004 and I am happy that she was able to last that long, however I am BEYOND nervous that it has been so long that the end could be soon. I'm just worried and just.....I don't know, worried.
