sunandsea
Distinguished member
- Joined
- Jun 17, 2016
- Messages
- 144
- Reason
- Lost a loved one
- Diagnosis
- 11/2014
- Country
- US
- State
- VA
- City
- Fairfax
Checking in on a Wednesday for a change. Was going to start a new thread, looking for advice, but not sure what I would call it. Went to clinic last week and respiration function was surprisingly good - no change in 3 months (71%). But fatigue is more noticeable and confusion continues to worsen. I believe the specialists at clinic were also surprised at his responses, or lack of, and his cognition. E.g., he wasn't able to tell the doctor her name or where we were when she asked. We've been going for two years. I know this is ftd with the als but have others had these difficulties with memory? There are times he doesn't know who I am and he can't remember what we did last week, a year ago, or many years ago - so it's not just short term memory.
Today he is so tired and he said he feels like he is dying. He's using the trilogy more and I can't notice a change in cognition or fatigue with it and without. His appetite is down and he's not eating as much as he should. He's lost weight and is coughing more with liquids so we are now using thickeners.
Sorry if this is disjointed and rambling.
I know others have it more difficult than this. He just says so little, it's difficult when all he is sharing is that he feels he is dying. I guess I am often wondering if I will know when he needs more help.
Today he is so tired and he said he feels like he is dying. He's using the trilogy more and I can't notice a change in cognition or fatigue with it and without. His appetite is down and he's not eating as much as he should. He's lost weight and is coughing more with liquids so we are now using thickeners.
Sorry if this is disjointed and rambling.
I know others have it more difficult than this. He just says so little, it's difficult when all he is sharing is that he feels he is dying. I guess I am often wondering if I will know when he needs more help.