Stuck(1)

neetzie

My mother is stuck.  She isn't alive, she isn't dead.  She can't move or speak and hasn't for a year.  She has been on hospice for two.  She sleeps like 22 hours a day.  BUT they wake her up to feed her and so on she goes.  She is stuck.  Is anyone else been through this?  Is anyone else in this?  how does it ever end?

terei

I can tell you only what we did.  I instructed the facility not to wake my mother up, to let her sleep.   My mother also had told us many times, over years, that she did not want to be hand fed.

I told the facility, if my mom could not pick up her food + eat that I did not want her hand fed. She was on hospice.  The facility balked at not coaxing her to eat.   I told them. that if they did not follow my instructions, I would remove her from the facility to my DD’s home about 6 miles away.    Hospice agreed to arrange her transport.

She was scheduled to be moved  + went to the facility + stayed in her room.  I allowed them to reposition her + change her nightly + bedding.  I swabbed her mouth with liquid when I thought she was awake.  I was there 8 days.

She died 2 days before she was to be moved.

The idea that a person in this condition has their life extended by spooning food into them is outrageous.

ButterflyWings

I agree with you terei. It really is outrageous. I could even go so far to say it is sadistic and cruel. But, honestly, I think we all know this practice continues even though it seems inhumane, because the system continues to get paid as long as the bed is full and its occupant is still breathing.

If I ever end up in this position, I pray someone will have the strength and compassion to just let me die in peace. neetzie, so sorry for your situation. 

M1

One of the bravest things my mother ever did was similar:  when the nursing home called that my 98 year old grandmother was ill, my mother told them not to take her for evaluation, and went and sat with her for the next three days while she was actively dying.  No fluids, no IV's, just Tylenol and holding her hand. It was relatively peaceful, and again I think it was very brave to handle it that way.  This was in '83, when Hospice was still a pretty new concept.

Sometimes I think paid caregivers are unsure what to do, and so they tend to do to much out of anxiety that they will be accused of not doing enough.  It's hard to NOT do things, sometimes.

Sjodry

Neetzie,

I have not had this experience, however I think that I would share your frustration. If my mom and I were in this situation, I would continue to allow hospice/nursing home to allow nourishment. I would spend time talking with her and letting her know it’s okay to let go. I would assure her that she will be restored in heaven, but always remain in her family’s hearts.

If you are a person of faith, I would continue to pray for mercy and a peaceful passing for her. God ultimately makes the decision of our passing. In scholarly articles that I have read, the hearing is the last to go, maybe she just needs to hear you give her permission to let go. God will hear you as well!

Wishing your mom a peaceful passing at God’s perfect timing.

Take care

Sandy

Marta

She is not stuck. It is up to you, as health care POA, to implement your mother’s wishes ( is there an advance directive)?

When my husband was obviously in a vegetative state, I instructed staff, including Hospice, to stop hauling him out of bed and feeding him. I sat with him for a week or so, friends and family arrived in time, and we let him go.

He was 68 years old.  This was 8 years since diagnosis.  

neetzie

I am stunned to hear that anyone was able to get the facility to stop feeding them.  I have fought both the nursing home and hospice about this very issue and both have told me that it is against the law for them to stop waking her and feeding her.  I do have POA which gives me the broadest power but they say that it doesn't matter.  so maybe I am the one the is stuck.  I don't live in the same town so saying that I am going to take her home or move her isn't going to work.

Marta

I suspect you either need to be present at the facility, or bring her home.

aod326

Agreed. I don't think it's reasonable to suggest any sort of facility stop feeding someone. It's not fair to put that responsibility onto them, and could so easily be abused, especially given their patient/resident is in an impaired mental state. If you are present - at the facility, so that you can be the one deciding, not them, or if you bring her home - then I think it is the merciful thing to do.  

DH had a fast progressing dementia, so the duration was very different for him, compared with your mum. He had progressed to the stage of being totally bed bound because of so much discomfort when being moved, months of not being able to communicate, needing to be fed, with pureed food, only able to drink via a plastic syringe  placed directly into his mouth. When the first day came that he couldn't swallow, we stopped offering him food. We gave him water initially, but his swallowing was a problem so we stopped that too.

He lasted six days without food or water (other than light swabbing). The swallowing issue was probably an indicator that his time was coming close anyway, but why would I prolong his awful situation? 

That may sound cruel to some people. But he had zero quality of life, plus no chance of any improvement. I have no doubt whatsoever that he would have wanted me to do that for him.

So, if your circumstances allow, be at the facility at mealtimes.

Good luck.