My mom (74) has been chronically ill her entire life, and has especially dealt with a lot of health setbacks in the last few years - atrial fibrillation, skin cancer, and a detached retina that has left her with poor vision. She fell at the beginning of this year and fractured a vertebrae due to balance issues from her vision loss. Then in late April she had two significant strokes that resulted in severe aphasia and worsened vision problems. She can no longer read or write and her speech and cognition are very diminished. She’s been in a subacute rehab facility since late May while we secured home care. Sadly, she has made very little improvement in speech therapy and stopped receiving PT and OT due to lack of progress.
An unexpected setback in getting her discharged to home last week has led her to stop eating. She said “I’m never getting my vision back. I’m never getting my mind back. I’m done.” Even the prospect of going home stopped mattering to her. I cried, I pleaded, I begged, I told her how much this hurts me, I tried to convince her to find something to keep going for. She refuses. The facility called in a therapist to talk to her and also gave her medication to stimulate her appetite. Still nothing. I finally told her that I will support her even if I don’t agree with what she’s doing. She made it clear that she doesn’t want a feeding tube or any other interventions. I keep swinging wildly between trying to make peace with what’s happening and breaking down/panicking trying to think of something to do to fix it.
If anyone has been through something similar, did anything change the situation? Did the person change their mind? Is it possible to secure hospice or palliative care for someone who wasn’t terminal but is refusing food?
Many people choose their final exit as stopping eating. When the MD understands that tube feedings won't be allowed and that it is time for help and medication for comfort care he or she will likely request hospice. And you should support your own mom in this request. My own father in his 90s told me he was utterly exhausted with life. He had had a good one and honestly very little illness, but he was tired and he was done. He was ready for, as he called it, the long Nap. Among the wonderful lifelong conversations I had with him some of the most beautiful occurred when we were totally honest at the end of his life.
Support and honor your mother and her wishes and DO listen to her; don't negate what she tells you. Let her know you love her and will never be ready for the loss of her, but that she taught you well and you will be OK and you will carry her with you EVERY SINGLE DAY you live, because quite honestly that is the truth.
I can't imagine how hard this situation is for you. This is the greatest and kindest thing you can do for her--and the hardest thing for you--to assist her in this final journey.
Get her doctor to place her on hospice now. This way she and you both can have invaluable support. I am sorry, LostandSad.
Maybe being out of the NH may change her mind about giving up.
When life situations become too much to bear, its time to make a decision to take the next step in the journey of eternal life. I know how hard this is for you; I've lost both of my parents, dad to a brain tumor and mom to dementia. During the last year of her life, I prayed daily for God to come take mom. She had no quality of life left and she was ready to see her parents and siblings again, she spoke of that continuously.
You can't "fix" this situation for mom now, unfortunately. Speak to her PCP about a hospice referral. She may be readily accepted with her health history and the recent significant strokes.
Bless you as you strive for acceptance of a difficult situation.
Prayers and Blessings to you and your family 🙏🏾
Your mom has been through a lot, as in A LOT with various health issues, can you really blame her for wanting to call it quits? I know that you don't want to lose your mom now, but is it really fair to want to keep her here in the poor shape she's in just to keep you happy? And does it really make you happy seeing your mom in the shape that she's in? I'm sure it doesn't.
So I would now bring hospice on board and let them keep your mom comfortable until she leaves this world for the next, and just be there for her.
We are all going to die one day, so why not let your mom die on her terms and not yours? To me that could be one of the greatest gifts you could give her.
May God bless you and keep you.
Take Mom home. Get her pallitive care or Hospice. Let her have peace while she is here.
It is difficult to stand-down as a caregiver even when we know that is the correct course and even when we know that is the choice of our loved one.
As a patient, we might think that surely we have the right to make the decisions or the choices of whether to continue treatment. We can have all the right paperwork in place, even have had the discussion with our loved ones and yet find ourselves back in an ER or the hospital due to the fear of our caregivers.
That’s what happened to Dr Gawande’s father. His father (a physician himself) had already experienced interventions that didn’t work and he knew he wanted to be at home on hospice. When his wife found him non responsive, she panicked and had him taken back to the hospital. Finding himself back in the hospital and in great pain, he insisted he be taken back home and readmitted to hospice. Not everyone is able to speak so clearly for themselves. Not everyone has family who will listen.
Please listen to your mom. Call hospice for an evaluation. Sometimes hospice patients actually improve. Think about how she can enjoy the time she has left living rather than drawing out the time she spends dying.
Such a beautiful sentiment. Thank you.
Don’t make her feel she has to fight or pretend for you . Let her be able to be honest .
Being able to watch Daddy control the last months of his life according to his own choice was quite beautiful. We never argued with him about his choice. He had suffered so long and so profoundly from Parkinson's--getting to go 'home' was a blessing to him.
Of the 6 of us kids, 3 of us opted to help mother with the caregiving while Daddy was actively dying. She needed breaks and when we were there, she could have them. Also, I know my time with dad was very quality and remains to this day one of the most spiritual things I got to experience.
Daddy wanted NO intervention in his process, All he got was Morphine and Valium. It kept him out of pain and calm.
As far as refusing food--dad would choke on anything that wasn't plain liquid, and at the very end, even that didn't work.
My dad was DONE. He had lived a wonderful life and in then when he had endured all he could--he opted 'out'.
In my case (as it is with many people) being a believer in an afterlife and the reuniting of our families for eternity--well, having daddy simply walk through the door that separates this life from the next made it easier to accept.
His wishes were met and respected. Only my YS fell apart, but she had reason to know that daddy loved her, but was not really happy about some life choices she had made. His passing was very, very hard on her.
It IS hard to accept that a LO wants to be 'gone'. But why would you want them to hang in there, sick and miserable and holding family hostage to their care when the option to go with dignity is there.
Let your mom have this. Give her support and love and let this be a time of peace, not anger or argument.
And try to enjoy what time you have left with her. Don't fight. Just be there for her.
I just got through having the exact same conversation with my spouse this afternoon. His mom says she just wants to stay comfortable at home and doesn't want any medical intervention. Hubs was discussing palliative care for her but she won't let anyone examine her, do any kind of tests on her or diagnose her even to see if she has something terminal. I'm no expert but I always thought you needed to be terminal with something before palliative care can be provided. Don't quote me. I'm not sure.
Last time hub's sister spoke to her doctor he said she needed to go to the ER stat.
It's a sad situation for everyone and I'm not sure what one does when a loved one refuses care.
If mom is refusing to eat and she is expressing that she no longer wants to fight the only thing that you can do is respect her wishes.
It sounds like she has been fighting her entire life.
I imagine she is exhausted.
Let her do what she wants or doesn't want to do.
I think it may be easier for the family when the elder has made his/her wishes incontrovertibly clear in writing before a serious life-altering event occurs. I have done so, and my best hope is that these directions will be honored. Without question, it would be very difficult for my soon-to-be 94 Y/O spouse, if I were to predecease him, and for our adult son. However, both understand my position on EOL issues when a "fix" is no longer attainable--or tenable.