comfortermom
New member
- Joined
- Oct 16, 2008
- Messages
- 7
- Reason
- CALS
- Country
- US
- State
- IN
- City
- NewCastle
So glad to finally have found this caregivers forum, so I can have a place to vent. Nobody else would ever understand. My daughter was diagnosed 11 years ago, when her daughters were ages 1 and 5. Doctors said she had 3 months to 5 years to live. I was envisioning those poor little girls growing up without their mommy. Well, we have been blessed, as she is still with us, and the daughters are now 12 and 16, and are the most loving and caring daughters. Mom has been a super mom to them, teaching them to cook, clean the house, decorate for holidays, do gardening..... They are going to be wonderful compassionate wives and mothers, themselves, someday.... because of all they have learned from their own mother.
For simplicity, I'll refer to my daughter as D.
D has lost all use of her arms and legs, and only has limited use of hand/finger. Barely enough to operate computer. She is in touch with others around the world with ALS, and they keep each other supported, comforted and informed. THis has been her lifeline.
D's husband works during the day, and daughters are in school. I live next door, so am the one who does any caregiving needed during the day. She doesn't need/want me to stay there all of the time... giving her a semblance of independence/privacy. When she is in her wheelchair and on the computer, she can just call when she needs me.
But most of the time, it tires her to stay in her chair all day, so she lays on the couch. When she does this, she has no way to move about, to get a drink, eat, change leg or arm positions, change tv channels. So I check in on her at regular inervals, and help her with lunch.
She has poor respiration, which is beginning to affect her speech. Getting out a few words is a real effort for her; which is beginning to make it hard for her to tell me what she need. I know this is frustrating for her, as it is upsetting to me.... not to understand her needs. My poor hearing further complicates the matter. Like she might say "hair". I push back her hair. She shakes her head no. I brush hair from around her eyes. No. I check the food. No hair on it. She had a hair on her lip, partly in her mouth. That kind of thing. Or she wants her hands in a certain position on her legs, or her toes are curled up on the pillow. Things that I know are a discomfort to her; but it is so hard for her to communicate those needs to me. Sometimes she is almost in tears from trying to get thru to me, and I'm about in tears, feeling so incompetant.
I won't go on any further today. This has been so long already. But I'll probably be back every day. So glad that I have found all of you. We are all in this together and are the only ones who truely understand. Thanks for being here.
For simplicity, I'll refer to my daughter as D.
D has lost all use of her arms and legs, and only has limited use of hand/finger. Barely enough to operate computer. She is in touch with others around the world with ALS, and they keep each other supported, comforted and informed. THis has been her lifeline.
D's husband works during the day, and daughters are in school. I live next door, so am the one who does any caregiving needed during the day. She doesn't need/want me to stay there all of the time... giving her a semblance of independence/privacy. When she is in her wheelchair and on the computer, she can just call when she needs me.
But most of the time, it tires her to stay in her chair all day, so she lays on the couch. When she does this, she has no way to move about, to get a drink, eat, change leg or arm positions, change tv channels. So I check in on her at regular inervals, and help her with lunch.
She has poor respiration, which is beginning to affect her speech. Getting out a few words is a real effort for her; which is beginning to make it hard for her to tell me what she need. I know this is frustrating for her, as it is upsetting to me.... not to understand her needs. My poor hearing further complicates the matter. Like she might say "hair". I push back her hair. She shakes her head no. I brush hair from around her eyes. No. I check the food. No hair on it. She had a hair on her lip, partly in her mouth. That kind of thing. Or she wants her hands in a certain position on her legs, or her toes are curled up on the pillow. Things that I know are a discomfort to her; but it is so hard for her to communicate those needs to me. Sometimes she is almost in tears from trying to get thru to me, and I'm about in tears, feeling so incompetant.
I won't go on any further today. This has been so long already. But I'll probably be back every day. So glad that I have found all of you. We are all in this together and are the only ones who truely understand. Thanks for being here.
