SamSam
New member
- Joined
- Jul 1, 2017
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- New Mexico
- City
- Albuquerque
So here's my story,
My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7 more months have passed and her left arm is useless her right had had very limited capabilities, but she is still able to use her electric wheelchair to move herself around the house. She can no longer hold up her body or head up. Eating has become difficult, things have to be cut up and drinks thinned out and in straw cups. She eats very little and her face has become shallow from weight loss. Her voice is frail and raspy, she mostly talks in a whisper.
Now there are a few extenuating circumstances that make this difficult. She live with her husband who is 76 years old, no young chicken. She won't let anyone else come into the home and take care of her no matter our pleas. We're not sure if it's just her or her husband as well that dislikes the idea. Although when talking to him he says it's up to her, but it's hard to know for sure. She is very dirty and I don't think she ever gets out of her wheelchair anymore, even for sleeping.
We've caused many a fight trying to get help into the home, trying to get them to fill out end of life paper work. We've told her she needs to do it before her voice is gone and she has less say in what steps will be taken when things progress. Still nothing is done. What makes this difficult for me is that I feel I can't talk to my husband about it anymore. Since we've tried and failed enough times, it's no longer up for discussion. I understand that. But now I feel we can't even talk about how she's doing at all. I feel trapped in my worry and fears for her with no where to turn.
I guess I'm looking for reassurance, suggestions, support, I don't even know. I'm worried we are getting close to the end, but I don't know? She's only been seeing the dr every 3 months and she hates going and obviously doesn't tell anyone what the drs are saying. Does anyone have any insight? Should I be preparing myself and my husband for the worst at this point, just in case? I know this could go on for years, but things have gone so fast I just don't see that happening unless she gets a feeding tube soon or does the tracheotomy.
Thanks in advance for any insight you can give. And for making it through this long posting.
My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7 more months have passed and her left arm is useless her right had had very limited capabilities, but she is still able to use her electric wheelchair to move herself around the house. She can no longer hold up her body or head up. Eating has become difficult, things have to be cut up and drinks thinned out and in straw cups. She eats very little and her face has become shallow from weight loss. Her voice is frail and raspy, she mostly talks in a whisper.
Now there are a few extenuating circumstances that make this difficult. She live with her husband who is 76 years old, no young chicken. She won't let anyone else come into the home and take care of her no matter our pleas. We're not sure if it's just her or her husband as well that dislikes the idea. Although when talking to him he says it's up to her, but it's hard to know for sure. She is very dirty and I don't think she ever gets out of her wheelchair anymore, even for sleeping.
We've caused many a fight trying to get help into the home, trying to get them to fill out end of life paper work. We've told her she needs to do it before her voice is gone and she has less say in what steps will be taken when things progress. Still nothing is done. What makes this difficult for me is that I feel I can't talk to my husband about it anymore. Since we've tried and failed enough times, it's no longer up for discussion. I understand that. But now I feel we can't even talk about how she's doing at all. I feel trapped in my worry and fears for her with no where to turn.
I guess I'm looking for reassurance, suggestions, support, I don't even know. I'm worried we are getting close to the end, but I don't know? She's only been seeing the dr every 3 months and she hates going and obviously doesn't tell anyone what the drs are saying. Does anyone have any insight? Should I be preparing myself and my husband for the worst at this point, just in case? I know this could go on for years, but things have gone so fast I just don't see that happening unless she gets a feeding tube soon or does the tracheotomy.
Thanks in advance for any insight you can give. And for making it through this long posting.