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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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.
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.
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.
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!
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.....
As for her pulling her hand away, it has nothing to do with you.
Likely she wants to gesture with her hand, or sometimes elderly people become pressure sensitive and even the lightest touch can cause discomfort.
She was prone to UTIs. We stopped diapers. Use washable bed pads under cotton sheets for sitting and sleeping. She wears long, cotton only skirts or oversized nightshirts. She sleeps on cotton sheets with no clothes.
We don't just wipe after toilet. We spray wash her underside. We have used a Brondell bidet seat since 2011 that washes her and the toilet is beside a walk-in shower. We monitor her urine with 10 parameter Urinalysis Reagent Strips for hydration, glucose, UTI, and others body chemistry. That has been a life saver.
We encourage her to be on her feet as much as possible. Sitting restricts the orifices. No UTIs since 2014.
Hydrating is a challenge. She doesn't remember how to lift a glass, she chokes if we tip it for her and is often reluctant to draw on a straw.
We use a turkey baster when she is incapable. We do not squeeze the bulb. We let it gravity feed or she will draw on it when she wants. We only hydrate while she is sitting or standing.
Watermelon is the best hydration when in season.
We add water to all foods Oatmeal is 1-1/2 cups. We eat much soup with fresh absorbing vegetables and rice. 2 cups of water.
When we hear her sniffle we use a child bulb syringe. We cut the nozzle to a stub because she can be combative and we just draw from the outer edge of the nostrils.
We have learned how to best position to draw from deep in. She has stopped fighting and seems to appreciate the coming relief.
We follow with Zicam swabs. She has not had cold, flu or allergies in years.
We found the right edible cannabis combination and dose. FTD does not respond to pharma and it has adverse effects. The cannabis greatly increases her awareness and we laugh often.
She cannot communicate or perform any act without total assistance and has to be watched as she is ambulatory and active 24/7, but she is happy. We are happy.
The UTI prevention is extra work, but so worth it.
Bowel and bladder require a scheduled 2-hour toileting, because she has little cognition, but is devastated when she soils herself. She will hold bowel and bladder until she explodes if a toilet is not available.
We offer a diet that encourages good digestion. We reluctantly stopped dairy and bread.
The Bidet spray stimulates stubborn poop-at-the-door. It works for me, too.
When the mass is too large for comfortable discharge we administer a gentle enema just inside the door.
We can do this for a long time.
When it is time, we will know how to make her comfortable in that, also.
Of all this UTI prevention is the most important.
"Eye hath not seen, nor ear heard the things that God has prepared for those who love Him"
Like your Mom, 2 of our parents went through the mumbling stage near end of life, certainly conversing with someone, others not in the room, and probably to those who had passed over, it was unsettling at times, but they never seemed to be in distress, just babbling away.
Unless She seems to be agitated or in distress, I wouldn't worry too much about it, for some reason, their brains are being hyperactive, as sadly, they too sense that their end is near and they just have a lot to talk about, and probably, their babbling brings them some comfort.
I remember my Mom jabbering away a lot, and when I asked her who she was chatting with, it was Always my Dad, who had passed only 14 months prior to her passing. Knowing that, it also gave me great pleasure, as she made it Quite clear that Dad was right there with her, waiting for her (but in no hurry), to accompany her to Heaven, or so she often told us.
My FIL (on Hospice in our home), was Always a mumbler, only way more so in the end of his life. There were Definitely times there in the end, where he was experiencing agitation (not necessarily associated with the mumbling), and our Hospice Nurse helped us to recognize exactly when it was important for us to medicate him, as he did seem to be frustrated and in distress at times. Thankfully the Ativan helped this very much.
It is a sad and difficult time, so be sure to utilize All of you Hospice team resources , as well as help from your friends and family, as you well know how difficult and wearing this phase of caregiving is on You!
Those moist mouth swabs definitely help to keep their mouths moist, and help to remove excess mucus build up, our Hospice provided those, they have lemon flavored ones, and we kept our in the fridge and cooled, which he seemed to enjoy!
Honoring your Mom by caring for her so lovingly as she nears the end of her life, while so challenging, is also so rewarding, and you are doing a Beautiful job. I pray her final days are joyous and peaceful for the both of you, take care. Stacey B
I am sorry for your loss and hope you can remember your mother as she was before she was so ill. Perhaps lilacs can be a favorite flower for her, and the lovely fragrance can help you remember her in better times.