Mom is mumbling and gesturing, is hungry but can't eat or drink. Any suggestions?
She has Achalasia and the doctor refused to do her last botox treatment because of her poor health. She now can't keep almost anything down. She has so much mucus and phlegm she chokes on it. Her intake pretty much just sits in her esophagus until she gets bad pain and only gets relief when she throws it up. Hospice put her on scopolamine (?) patch and it helps but she gets sore spots from it. Neither the drops or pills we tried help. She has pretty bad dementia. So now with very little food/water intake she's been mumbling, gesturing, not sleeping much. Hospice Nurse came out last night (not her usual one) and said she thinks it's progression of the dementia. Mom seems restless and I can't understand 90% of what she is saying. She seems to be talking to someone nonstop. This sounds really strange but I wish I could understand her side of the conversation. I'd like to join in and offer her whatever I can. I don't want to have nightmares after she passes about her trying to tell me something and I'm not able to understand her. I requested antibiotics in case it's a UTI (she's prone to them). Sorry for the ramble. I know nobody can say for sure but has anyone else's loved one experienced this? Also, she doesn't seem particularly agitated in her "discussions", more animated (?). But if she wants or needs something I'd like to be able to get it for her, if she just wants conversation I'd like to be able to offer that. I tried reading to her, she used to love that, now I don't think she's even listening. She's making signs like she is eating something sometimes and I know she's hungry. Even when she does manage to eat she gets a bad stomachache. Needless to say I feel so bad for her. I keep her favorite music on. I talk to her anyway. I hold her hand - she sometimes jerks away, possibly involuntarily. She has hand tremors on her "good side" gor the past year. She has been awake since 6 a.m. like this. No signs of sleeping. She usually sleeps all the time. Any ideas?
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I can attest to the fact that you're never prepared for the end. Try to stay in the moment and not to worry too much about the "next".
The only way to prepare for the loss of a loved one is in having knowledge that you've done all you can for them while they are still alive. And it sounds like you've done that. That will give you peace, while you grieve. The rest is a matter of work, (clearing the house etc) that, for me was a comfort too. It helps to have something to do, when there the bigger issue is out of your hands.
From my experience, professional and personal, I agree with others who suggest working with hospice to provide meds that will provide comfort for your mom (and you when you know she is more comfortable). Especially to decrease the mucus.
Second, it is very common for individuals to talk with "someone in the room". Often times, those who can verbalize will say they are talking to a loved one who has passed or to God or Jesus. Is your mom a spiritual person? Reading the bible and playing gospel music may be beneficial. If you sing, sing to her. (even if you don't think you sing well, it's you she hears). Have you asked a member of the clergy to visit her?
One last thought, no matter what, when we all come to the end of our lives here on earth, we all need to decide - Is this it? Nothing beyond? If you believe there is something, like God creating us, there is relief in knowing this walk on earth wasn't just that, a walk on earth. I have seen the struggle many individuals experience as they are nearing death. We are mind, body and soul. Unfortunately, our soul gets forgotten.....
It's only a lay, anecdotal opinion but I'm sure you're also right that the intense "conversation" your mother is having is related to the dementia. My mother kept up her side of this kind of chat for a good couple of hours one memorable night in the ER. As long as it doesn't seem to be distressing her try to take some reassurance from that; but I agree, the moment you think it *is* distressing for her is the time to speak up and ask for more help.
Giving her food at this point is probably counterproductive. I'm so Sorry she's so agitated, and that YOU are dealing with this alone.
Call the hospice nurse and take her advice about giving mom meds from the Comfort Pack you were given.
It happens...make sure Hospice is on the scene monitoring her so there's no pain.
Nothing can prepare you for the end.
You've been a good daughter and wonderful caregiver!
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