I have lived out if state, and sometimes country, from my mom for over 25 years. When she was first diagnosed with dementia my uncle became her medical PoA and my brother took care of her until she needed to be put into care in 2017. Previous to this, I had requested my uncle relinquish his PoA to move so I could move mom and my brother near me, but my uncle refused and I knew he had my mom's best interests, so I did not fight him. My brother now lives near me and only my uncle is near mom. Now my uncle wants to move away to be near his daughter and I am taking over guardianship legally.
We were recently called and told that mom had stopped eating and the end was near. So, my brother and I flew in immediately. She has, not unexpectedly, deteriorated greatly over the years. She has not recognized anyone in over 3-4 years and hasn't been able to communicate. Even her word salad days ended years ago. She used to walk around a lot, then a wheelchair was used, now she is bed ridden.
When we, and my uncle, saw her we thought, this is it, but she "improved" over the time we were there. Only minimally. And if what we saw was improved, I honestly can't imagine what worse was. She is a shell of herself with no recognition of anyone or anything. Her improvement was due to them being able to force spoon feed her (she has a no IV or feeding tube living directive). She does not react to the food or liquid when presented and much patience is needed to make sure some goes down and she doesn't choke.
This seems cruel to me and she would have hated knowing she was lingering like this. She had conversations with me and my brother years ago before she was diagnosed and she does have the DNR and no exceptional measures in her living will, but what those exceptional measures are I am not sure beyond the very invasive feeding tubes and IV.
The home takes good care of her, but I feel (and my uncle and brother agree) that prolonging her struggle is just cruel. Can we ask to have them stop force feeding her? I am fine with offering regularly, but if she does not take it willingly (not just sliding it down her throat) they shouldn't force the issue as they are now. What steps can I take?
I am somewhere in the middle of the guardianship process so if we ask soon, it will have to be my uncle doing it. Or we wait until I have "control" which could be in two days when we speak with the judge, or later depending on the court. I do not like the optics of getting guardianship and saying "stopping feeding her, let her go in peace". I don't want her to suffer,and I honestly don't think she is. She is not aware and hasn't been for a long time.
Short question: can I (or my uncle) request that my mom's home stop feeding her in order to let her go peacefully sooner rather than later. She has no quality if life and hasn't for years.
I spent a lot of time in the nursing home dining room and it was clear when people didn't want to eat, they turned their head and refused to open their mouths and would not swallow anything that did make it to their mouth, instead they would chew and chew without swallowing or just spit it out. Careful hand feeding is the gold standard of care and you have found a very good care home if they are willing to do it, in my experience many staff will not take the time to "force" food on anyone who clearly isn't interested, they charted the amount eaten in a reasonable amount of time or it was marked as as refusal. Actually shoving food in a slack mouth is more likely to result in aspiration than swallowing and that IS abusive.
Force feeding can actually cause significant pain. If she is near the end the organs have likely started shutting down and cannot process food.
If they have to open her mouth with the spoon to get food into her that is "force feeding".
Forcing someone to eat can cause damage and pain.
If the food is not being processed it can linger in the digestive tract and without being processed it can remain there, or it can be vomited up or it could cause an obstruction.
The body is using energy keeping the heart, lungs and brain "active" so minimal energy is spent on "non essential" things like digestion, keeping hands and feet warmer by circulating blood to extremities.
If Hospice has not been called in to help a call should be made. The Hospice team will educate the caregivers if necessary and will make sure mom is comfortable.