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Ruth, that was hysterical!! Thank you for the laugh!!
I think there is a big grey area in comfort care between offering and assisting to eat, and practically force-feeding. On one hand, your loved one may be really hungry and not able to eat, but on the other end of the spectrum, they may not be hungry or interested in eating at all, and feeding someone in this state can be excruciatingly slow and not very productive; it may even be dangerous, since there is always the risk of pocketing food and choking.
I think it is wise for you to bring it up with your Mom, so that when/if that time comes, you will know what was said, and be able to direct staff accordingly. You might also use this time to bring up final arrangements with her if she wants to talk about it. I know I'm glad I did bring it up with my Mom towards the middle stages, and it made me more confident when the time came to review it with caregivers at her memory care facility.
I agree, it's person by person. I have watched persons being hand fed at Mom's place, and some seem to really enjoy their food. When Mom was having what we hope was just a stomach virus recently, hand feeding/coaxing was tried, and mostly it didn't work, probably because she looked at it as babyish and not being given her way besides. One time apparently she shut her mouth exactly as a stubborn child will. Things have settled down, and she is given freedom to eat, or not, as she likes.
My MIL was hand fed a bit towards the end. She, like Mom, had an out-of-hospital DNR, but nobody was forcing her (or Mom) to eat. MIL loved a bit of ice cream or sherbet, and one of the caregivers specialized in searching out and buying novel flavors for her. Mom is a chocolate girl herself, and ate a bit of Chocolate Decadence with me today. If the right thing is offered, and she wants to eat it, she will. The day will come when no thing is the right thing. I think staff will honor that.
I couldn't begin to formulate a one-size-fits-all protocol. Sunny, definitely ask your mother her wishes. I think the memory she's got of her sister will inform her. I know I certainly wouldn't wake a sleeping lady to roust her out of bed and take her to the noisy dining room! But I would equally keep my ears open for her to call out for food. That's something a facility can't always do.....
Years and years ago, when Mom was in the midst of making us her POA's and doing all that legal stuff, she called us together under a little tree and told us how she wanted to die. It was not long after Dad had died in her arms, 5 years maybe. She was fairly convinced that Dad's last dose of morphine for cancer pain, to which she'd assented, killed him. She does not want, or did not want at that time, to have that last dose. She made us promise that even if she seemed to be in extreme pain, we would allow the pain to go untreated; that God was somehow working through her and would carry her home in His time. Hand feeding is nothing in my mind as compared to this years-old, never since discussed, wish of my mother's.
DW has been in MC since 1 May, and the past month she has been needing more and more help with eating. It's a day by day thing, as yesterday she ate all her lunch, but not today. She attempts to feed herself, but has a hard time finding her mouth or uses the wrong end of the spoon/fork. Some times she will close her mouth when I'm only half way in with the spoon. Some times you just need to stop and try another time/meal. I find that some times the staff has a better chance getting her to eat.
Now she needs help moving from chair/bed to a wheelchair. Fell from bed twice last week.
We talked about what she wanted done or not done last year while she was still "with it". Beside the DNR we also did a "Advance Directive" which has her medical treatment wishes written down, and my agreement to follow her wishes.
Will have a hospice RN come on Monday to see if and when she should go on hospice. The down hill trip picked up speed this week, but never know what tomorrow brings.
Best advice I could give would be to try and talk about all of this before we are in no condition to make these decisions.
Many patients lose the ABILITY to feed themselves, but still have hunger and an appetite, they should be fed. It's similar to feeding a baby who doesn't know how to feed himself.
But when a person loses their appetite or otherwise doesn't want to eat, they CAN'T be fed. Remember the adage, 'You can lead a horse to water, but you can't make him drink.' The same is true with food and humans.
As I have indicted before, I have strong feelings about hand feeding. I believe it will (and should) go the way of tube feeding (that is, rarely used).
Unless a person CLEARLY wants to eat, IMO hand feeding is an intervention that is artificially extending life. If a person has a medical directive indicating no treatment, DNR etc, hand feeding should not be started.
I have observed a number of people being hand fed. Some were obviously enjoying their food + attentive to the process. In those cases, hand feeding in appropriate IMO.
Others were clearly uninterested, distracted, dozing off(+ being roused) + being ‘coaxed’ to open their mouths or to drink Ensure type liquids. In those cases, I believe hand feeding should not be done.
If you have an advance directive yourself or helping a loved one with theirs, please address this SPECIFICALLY, by hand writing in if necessary your wishes regarding hand feeding. I have a dementia directive on which I have written ‘NO HAND FEEDING’.
As some of you know, my family did not allow my mother to be hand fed. She had been very clear that she did not want hand feeding under any circumstances. When she stopped finger feeding herself we did not allow hand feeding to start. She died about 10 days later without visible distress or pain.
Please make your own wishes known, for or against hand feeding + complete a dementia directive as well as the standard advance medical directive being specific about this
It is good that this observation is causing you to move to conversation!
My own advance directive says in very plain language, "If I cannot feed myself and I give you no indication (verbal or non-verbal) that I want to be fed, YOU ARE TO ASSUME THAT I DO NOT WANT TO BE FED!"
That statement fully reflects my bias. I would never impose it on another person but, it is what I prefer for me. I hope that having it in writing confirms for my caregivers that they are not acting out of neglect, but out of respect for my wishes.
To Pathfinder: "My
own advance directive says in very plain language, "If I cannot feed
myself and I give you no indication (verbal or non-verbal) that I want
to be fed, YOU ARE TO ASSUME THAT I DO NOT WANT TO BE FED!"
My advanced directive says: "If I'm not eating, fine, but by gawd you better have wine in that IV bag, and it better be coursing through my veins 24/7. YOU ARE TO ASSUME THAT I WANT TO BE DRUNK!"