Hoping folks might share advice/experience. Thx in advance.
My mom (almost 87) is in a NH, has been there almost 3 years. Has dementia (later, mid stage); cannot walk more than about 5 feed with/o a walker, otherwise is in a wheelchair; has a host of medical conditions (diabetes, COPD, heart disease/arrhythmia, clinical depression, OCD, loss of 75% of hearing in both ears -- won't wear hearing aides).
Her NH has high quality marks and they provide many social opportunities (exercise "class" even for those in a wheelchair, hallway bingo, outings on their beautiful grounds, daily big screen movies, book club, game room activities. They have a beautiful dinning hall and social room. My mom will have none of it, eats all meals in her private room with the lights out, blinds closed and TV blaring 24/7. Other than when they take her to the shower room, she does not leave her room. She can pick whatever she wants to eat, for BLD. My uncle see her once a week and brings her favorite meal, fried chicken nuggets. The same uncle takes her out maybe 2 or 3 times a year to lunch or an early dinner; but it is a challenge for him-he is 83 almost 84. One cousin visits about once a month. I am in no contact other than to handle Medicaid paperwork, taxes and to participate in the every 90-day "care plan" meeting calls with the NH staff. (Me long story, one can read in my profile, but she is my biological mom, I ended up in foster care as a kid after my dad passed away, and I tried to reconnect later as well as tried to care for her but it all came apart in Oct 2020. A permanent NH placement was necessary.)
So now she is loosing her eyesight (uncontrolled diabetes for many years and macular degeneration, and she has cataracts). The TV blaring is her only outlet, other than the visits from her brother/my uncle or the cousin.
Earlier this year the NH staff asked me about a DNR, did I want one for her? I am her POA, health agent and yes there is an Advanced Directive. Years ago when this was filled out she indicated "not wanting tubes" to "keep her going." Given me in no contact (2 yrs); I asked her MD to discuss the DNR? w/her. The MD said my mom said "no to the DNR" and asked to "take measures" to keep her going. I was surprised, but also with the dementia and me in no contact, I have no clue if she understood the question or if she really wants "all measures" to keep going.
My question: Now with her loosing her eyesight and coming up on another year at the NH; when and how should (OR should I at all) revisit this DNR question with her MD and the NH staff?
I feel bad for her, how her life turned out. She was a very broken person throughout my childhood. None of us are perfect; and yet she never took any steps to get help much less have any awareness of her own issues (narcissist personality). Working w/a great therapist for 2+yrs I know, no contact has to continue on my end. I have been working on grieving the mother I deserved but never had. I do not want her to suffer. Also, honestly her passing would mean I can start that 2nd grieving process, her actual passing. I have no clue if she really does want to "keep going" using all measures or not. All to say this DNR question weight heavily on my and I appreciate your thoughts, advice and/or experience you might want to share as I work through this part of "this journey."
FYI your description of her in the NH is almost identical to my MIL: I worked very hard for 1.5 yrs solid to get her into a great facility on Medicaid. She just decided to stop getting out of bed. We couldn't incentivize her. She wouldn't participate in the many awesome activities and events; she only ate in her room. But then one day, they were able to convince her to go out and eventually she started going to all the offerings, and eating with others. I think her dementia/memory impairment made her forget that she was a certain way. Just saying this so that you know your Mom may still change. I encourage you to keep asking the staff and admins to coax her out of her room.
When I signed the paperwork for her admittance to residential care, I was prepared to sign as she had, but the social worker in attendance said that there were certain comfort measures that might be necessary as she approached death.
We bent her DNR by a little, and after conferring with religious advisors and her medical caregivers. I was comfortable with the care she was receiving and with my own decision making.
When COVID hit, I spoke again with her medical care providers, and because I was her only connection to her younger life, I begged them not to hospitalize her or use an artificial breathing equipment unless there was absolutely no other alternative to providing for her comfort.
My decision proved sound, and she remained in her residence, in their “COVID floor” and recovered enough to have a fairly decent life style following her last of 2 COVID infections.
If your mother has diagnosed dementia, can she understand and respond appropriately (and legally) if questioned regarding her own opinions regarding her DNR?
There is a more current form that goes into detail about the measures to be taken and the instructions can go from none at all to a moderate temporary measures to the other extreme to do all that can be done to preserve life. In my State this form is a POLST. It goes by other names in other States.
Just a comment about some things that might be done.
CPR will probably break ribs and maybe the sternum. This can be a difficult recovery (if the CPR works) and broken ribs often lead to ppneumonia.
Nutrition through tubes may be fine but at end of life the body no longer digests foods so that can cause a problem and IV fluids often cause problems as the fluid can build up and is retained and not circulated as it should.
I would not hesitate to complete a POLST or DNR indicating that I do not want any extreme measures taken.
However, if she is not willing to sign it, I am not sure what you can do.
And previously indicated DNR, "no tubes to keep her going"
You also say that mother filled out advanced directives years ago not wanting tubes to keep her going .
Personally, I would assume she filled out that advanced directive when her mind was better than it is now . I would also assume she is not understanding how ill she is now with all her medical conditions . I understand how difficult this is because you are unable to speak with her now .
IMO I would sign the DNR , I would go by her advanced directive that is indicating no tubes to keep her going . At 84 with all her medical problems , even if she survived CPR , it would be a miserable existence on a ventilator . My step mother in law was 80 with dementia . She coded in the hospital after aspirating on her lunch . She was on a ventilator with minimal brain function . Her kids ended up pulling the plug anyway .
You were a good daughter. You did more than enough for a mother who had a mental illness. You have grieved for years for a mother that just could not be there for you. If you grieve her death it will because you have lost something you never had. If you don't grieve, thats OK. Like I said, you have been doing that for years.
Assuming dementia and incompetence in her own decision making and if you ARE the one who is making the decisions now via POA or guardianship, I would opt for no heroic measures when your Mom passes. At the age of 87 they will not be successful in almost any case, and the bones become fragile enough at this age that CPR quite simply crushes the chest; I live with that sound in my brain.
I think you cannot predict how you will feel at your Mom's passing. You are being supportive now. I suspect you will feel how I felt when my beloved parents passed in their early 90s, which is relieved that they had no longer to suffer, that there was no fear for them and what they would have to go through.
Glad that you are working through your feelings of grief over having a parent who, due to HER OWN LIMITATIONS could not be what you needed. You can forgive someone for something they could not manage, could not help. Then you should be able to move on away from what could not be fixed and is past history. Best of luck for you both.
No matter your choice, no medical will long attempt resuscitation of someone in late 80s, so make the decision you are best comfortable with. As an old RN I always said families who wanted CPR on an elder should be forced to witness what it entails. It is a cruel process with NEVER a good outcome in my own experience.
Which it is, considering her poor condition. If I were your mom, that's what I would want.
I am sorry you are questioning yourself on this. You know what she wanted. Let that be your guide post, regardless of the relationship now or then.