My 90-year-old mom is now in rehab. It will be interesting to see how she does. She is in such bad shape. But of course the rehab facility’s goal is to get mom back to her ‘baseline’ status, to get back home. She has multiple serious comorbidities. Her baseline was not good and required help with basically everything but toileting which she was obsessed with. Not surprisingly that’s why she fell and broke her hip in the night. My brother literally had checked on her not even 5 minutes before. At baseline someone had to be there 24/7 and was already becoming a burden even with some outside help.
I see her at end of life. No one else in the family seems to, but I don’t truly know because they have always refused to discuss it, so of course they don’t want to do anything to help Mom understand.
That is so hard for me to watch. Mom and I a few weeks ago had such a productive, clear conversation and I believe she would have signed a DNR had we had the right people there at the time.
I just read her advanced care directive on discharge from the hospital and it was clear she wants CPR and mechanical ventilation. ??!!???!!
I am certain her reduced cognitive function has made it hard for her to truly understand what it means. Other family members are in denial also and want her to be able to make that decision no matter what and refuse to have the talk about that to help her understand as mentioned. They have avoided it all costs, no matter what she’s gone through which is a lot over the last 2 years, 3 hospitalizations just since January.
I believe her sense of independence is such that once she decides something it becomes ingrained in her psyche and nothing is going to change her mind and she just digs her heels in for the sake of her own pride and lack of understanding. Now I believe she just doesn’t have the cognitive ability to do that.
With the other family members in control she is ineligible for hospice, but only because of her goals of care as stated above. We could really use them now. Maybe they feel ‘ignorance is bliss?’ There’s nothing is ‘bliss’ about this whole thing. They have just resisted to educate themselves.
But slowly I’m coming to grips this is the reality I’m forced to reckon with and I have to do that for my own sanity.
All of that said, time will be the true telling force. I just hate she has to go through more pain and suffering to get to that inevitable end game. And we have to watch it play out.
Do they know how awful it would be for her to be on a feeding tube, should she have a paralyzing stroke (for example)?
Do they know that due to your Mom's dementia, she may not be compliant with even keeping in an IV for fluids? Or participate in PT?
If they are willing to be the ones to care for her in their homes, then maybe don't resist their decision. Once they start to care for her (and you are NOT obligated to participate in that) they will find out in short order that it was probably a mistake to bring her home.
Sounds like your Mom may now (or soon) be a candidate for long-term care. If she qualifies medically and financially, LTC in a facility is covered 100% by Medicaid and her SS income.
I was PoA for my 100-yr old Aunt with advanced dementia. I live many states away and she was being cared for in her own home by 2 of my cousins and my other Aunt. My Aunt shimmied out of bed one night forgetting she couldn't really walk without assistance. She fell and broke her hip. My other Aunt and 2 cousins were adamant about taking her back home to care for her. While in rehab my Aunt continued to attempt to get out of bed. Before I could make a decision about facility vs in-home care, she passed away in the rehab facility, possibly from a clot which can result from a large bone break. Also, a rehab facility is not the same as a NH or SNF so without her sister and nieces going there daily to make sure she was eating and drinking enough and having her hygiene attended to, she was just not going to improve.
It's totally possible that even if your Mom does recover enough from this break she will just continue to fall wherever she goes after rehab. There's not much you can do in this scenario since no one can be restrained.
I understand your sorrow in this situation. I personally would just go and visit your Mom but not participate in the caregiving since you don't agree with the plan. No one can be assumed into caregiving. This should be a boundary for you. Your relatives will soon get an object lesson. I wish you peace in your heart on this journey.
Who will ultimately make the tough decisions when it comes to her care.
I am curious about the advanced care directives you read from the hospital. Who was it that indicated she wanted CPR and Ventilation? If she stated this in the hospital I would argue that due to the trauma she may not have fully understood what was being asked. And if that is the case it may not be valid if she is not cognizant to make decisions. And if it was signed after a diagnosis of dementia it also would not be valid.
If the document, the POLST was signed prior to the hospitalization and or prior to a diagnosis of dementia then that is different.
Just curious as the time line on this might matter if the POLST is valid or not.
I am not even going into the problems that CPR and Vents can and will do to any body let alone a 90+ with dementia and underlying medical conditions.
I've come to accept what you said of what’s likely to happen if she goes home and something like that is likely to be what writes the end to this story. Unless a medical crisis happens as you mentioned. So sad. Whatever happens though, I understand it is really out of my hands.
Also I just want to say THANK YOU to you all for taking the time to offer your experiences, expertise and encouragement on this forum. It truly is invaluable for those of us who are on this journey.
I am so sorry your mother and family are dealing with this.
Yes, you are in a no-win situation with your family.
I do like the idea of your Mom's doctor having a frank discussion with your family about her prognosis and needs upon discharge. That could lead to a discussion about end of life plans (to have a DNR or not). But the doctor can explain in detail to everyone what CPR does to a frail 90 year old body, and what mechanical ventilation would mean if she were not to be able to ever breath on her own, and what a feeding tube entails.
Yes, these things would keep her alive, but not really "living".
I had to step back from helping my mum recover after her stroke, 14 years ago, because her husband wanted to do everything for her rather than let her gain independence; he had the authority as her next of kin. I knew what the outcome of this course of action would be, but I couldn't change the situation, so I had to step back to protect my mental health.
Then, fast forward 13 years, and I could see that Mum was approaching end of life. My brother was against a DNR and my stepdad couldn't have made that decision. As it happens, I was the one who always went with Mum to her medical appointments and hospital admissions, and I had been with her in the GP's surgery when she had expressed her feelings on the matter, before the dementia took over. Years later, the hospital doctors listened to me and signed a DNR document for Mum.
It was never needed. Mum couldn't have been kept alive, not even with CPR or artificial breathing.
Based on this experience, my advice is to try not to project your fears. Try and take each day at a time.
Heroic measures are only taken when there is a sudden emergency, such as a heart attack or stroke. It is more likely that your mum will become weaker if she is at end of life, and she will start to slip away.
Doctors don't use CPR or a breathing tube when a person fails to thrive due to chronic ill health and old age. Instead, they usually advocate for pain management and other end of life drugs to keep the patient comfortable.
I wish you strength and peace of mind as you deal with this difficult time.
You are very correct that most people do not, when they do Advance Directives, understand all that is involved. But if they have lived long enough and seen enough they do have a fair enough idea and if they are adamant in wanting something it should be considered.
And if your mother has enough cognitive function to participate in rehab then she has enough cognitive function to discuss this with family and a social worker present and mediating, and with the MD there as well.
I understand you need to do what is in your best interest to safeguard your 'sanity'.
What I do not see addressed is who has legal authority for decision making?
Who is the POA and/or who has other legal responsibilities?
I understand that it (sounds like it) is 'you against the rest of the family' - that you do not have any support and that you feel for your mom and the situation she is in.
I wonder if the family would be amenable to either:
1) getting together with a religious person, like a priest or head of a church - if your mom or family are affiliated;
2) (a) have a group meeting with a med social worker or
(b) her MD (assess her cognitive decision making abilities);
3) an outside independent social worker to sort all the feelings out - and to see if family members would actually be agreeable to such a meeting to talk? Since you say they do not want to discuss it ... I wonder if they would with a neutral person guiding the / a discussion;
4) Perhaps if one family member is 'more on the fence' than the others, you could talk to that one person.
I agree that for your own well being, you need to let go and accept what is, 'while' trying to do what you can for your mom. I wonder how it is that you do not have any ... say, legally ... in how things proceed. There must be some family history playing out to get to this point (although we don't need to know as what you need to deal with is what is going on now.)
Take care of yourself, be with your mom and let her know how much you love her each moment you are with her. These moments will be with you forever.
Gena / Touch Matters
"Take care of yourself, be with your mom and let her know how much you love her each moment you are with her. These moments will be with you forever."
Knowing that I did what I could to make Mum comfortable (even though I couldn't do everything that I knew should be done because I wasn't NOK) and that we shared some very special moments in her last few months, are the memories that comfort me now.
This is not a family round table consensus about mom.....its up to the POA to carry out final end of life wishes.
Bst of luck.
A friend of mine and her 6 siblings were made equal DPOAs for their parents. When the Dad was diagnosed with cancer it was a poop-show to say the least. Some dug in their heels, the others felt they were held hostage on making a decision.
Please, don't make it a poop-show, for your own sanity.
If you need to step back, then do so.