Billard
New member
- Joined
- Feb 13, 2018
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 06/2015
- Country
- US
- State
- LA
- City
- Sulphur
For 3 years my wife has fought with everything she has to make ALS take things from her. Anything that could help make life easier was pushed to the side until it was the only option left. Her PWC sat as a dust collector for seven months, although for the last month, she was being pushed around on a rollator. (Stubbornness runs deep in her family)
She was Bulbar on set and didn't lose mobility until September 17. She's been the kind that if you don't talk about it, you don't have to worry about it. We discussed and she accepted Hospice to come in
About a month ago she lost her appetite somewhat, started eating about a third of what she was. Longer sleep patterns started setting in. Now this week when she woke up Wednesday she was struggling with violent coughing which leads to nasty tongue biting. She has only eaten one formula from wed till tonight. Mainly ativan and small drops of morphine with water is her only intake through the peg.
She now sleeps 16 to 18 hours a day. If she's awake she cries uncontrollably and just wants to be held. Hospice said she could be transitioning. I've been hopeful it's just a bad week.
Up till this week, you would look at her and think, there nothing wrong with her, besides needing the PWC. Laughing and brightening anyone's day that she came across. Be it there was some bad days, but more good than bad. It's hard for me to fathom her will stopping overnight.
Sorry for the sulking on my first day of posting. This was supposed to be me asking about transition. I've always tried to be the strong, I can do it all for her type husband. This week I've felt the weakest I've ever been.
She was Bulbar on set and didn't lose mobility until September 17. She's been the kind that if you don't talk about it, you don't have to worry about it. We discussed and she accepted Hospice to come in
About a month ago she lost her appetite somewhat, started eating about a third of what she was. Longer sleep patterns started setting in. Now this week when she woke up Wednesday she was struggling with violent coughing which leads to nasty tongue biting. She has only eaten one formula from wed till tonight. Mainly ativan and small drops of morphine with water is her only intake through the peg.
She now sleeps 16 to 18 hours a day. If she's awake she cries uncontrollably and just wants to be held. Hospice said she could be transitioning. I've been hopeful it's just a bad week.
Up till this week, you would look at her and think, there nothing wrong with her, besides needing the PWC. Laughing and brightening anyone's day that she came across. Be it there was some bad days, but more good than bad. It's hard for me to fathom her will stopping overnight.
Sorry for the sulking on my first day of posting. This was supposed to be me asking about transition. I've always tried to be the strong, I can do it all for her type husband. This week I've felt the weakest I've ever been.
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