My mom lives by herself in a house 3 miles from mine. She is 79 and has not seen a doctor in at least 35 years. Takes only over the counter vitamins and Advil and such. Her diet is very healthy— lots of vegetables and protein, low carbs, no junk or sugar. She does drink 1-2 glasses of wine per evening. I would bet she has arthritis in her hands and knees. One leg is very stiff and she pretty much drags it. That knee angles inward when viewed from the back when she stands or walks. She also has very severe bunions. She walks with a cane. She does have a walker left from when my dad was in hospice (he passed in May) but so far, she won’t use it. It’s hard for her to get out of a chair or the car. I do not think she has dementia.
She does have a living will in which she states she wants no life sustaining treatment — no cardiac resuscitation, no IVs, etc. She also has a DPOA document if she becomes incapacitated and I am the named person on both.
She told me yesterday that she wants no treatment of any kind for any long-term health condition. No surgeries, no physical therapy, no knee replacement, no treatment if she gets cancer, CHF, no prescription meds, etc. I asked what about chronic conditions that could be debilitating or cause pain but not lead to death? She replied she would “just take street drugs” in order to hasten her death. Of course, she has no idea how to procure street drugs and has never tried any. She did acknowledge she would take antibiotics for an infection, Paxlovid for Covid, and she would seek medical care if she broke a bone. she also has a lot of anxiety and I have suggested more than once that a prescription could help with that (also therapy) but she is totally opposed. I said she might have depression after my dad died, but again, she refused all professional help.
What I worry about is something like she falls and breaks a hip then lives another 15+ years. She did have a life alert style medallion for a few months but kept setting it off by accident and now refuses to wear it.
How realistic would you all say my worries are? Are there other things I should be concerned about?
I have broached AL many times and she is adamantly opposed. She fired several home health aides even when my dad was incontinent and basically bedridden. She now has a high school girl who helps her a couple of days per week with things like taking out the garbage, putting away groceries, and getting the mail from the end of the driveway. But who knows how long this girl will last. I also go over there usually 2X per week to chat with her and do stuff for her. I also handle all her bills, taxes, most home repairs, etc. I am mindful of boundaries and setting limits and avoiding burnout.
I know we are in “wait for the crisis” mode. I am pretty much at peace with it, but just wonder what the future will hold. She hasn’t seen a dentist in probably 4-5 years or an eye dr either. She does wear glasses.
I agree with every single move your mother has made. EVERY ONE.
Now, when and if something comes Mom has the opportunity, if well and rational enough, to change her mind and treat after discussions with MD. That includes a busted hip which often has a good recovery. She can decide at that time, and if she is no longer competent then YOU do as she said, because living with incompetence is a crucible.
I was a breast cancer survivor, 36 years ago at age 47. I had Chemo and a mastectomy and then 36 very happy years cancer-free and living well. Last December, there it was again, same old Triple Negative, this time in the remaining left breast. I accepted lumpectomy with NO node removed, and I made it clear to Kaiser I have no intention now or ever of taking chemo, radiation or other treatment unless it returns to this breast in which case I would be doing a removal. I would NOT TREAT any spread. I would get palliative care (Kaiser agrees) and I would avail myself of our California right to die laws (Kaiser agrees). I have made this clear with social workers, and with all by interviews. This is in my chart. So the good drugs. Then the good cocktail at 6 months prognosis.
I am a member of FEN, and I do understand how to make a final exit when I wish to do so.
I have lived my life and I am lucky in its having been an enormously LUCKY life. I am satisfied. I am ready to go. My daughter is aware of this as is my partner; he agrees.
Now, like your mother, on I go. I see doctors when I wish to. I don't worry a whole lot about any of it. If I get dragged down the steps tomorrow by the foster dog it is quite likely I WOULD address a broken hip.
For others out there, if you do accept surgery it is important to re assert your No Code wishes while you are on the table. Those are usually off the table during surgery as they feel that if you go out on the table it's their fault and they need to try to correct for it. So if you don't want to be coded make that clear to the surgical team. Anesthesia. I LOOOOVVVVVEEEEEE it. One second you are there and the next you have a lemon popsicle in your mouth!
Good luck, Suzy. Do your best to honor mom's wishes, and thank god that she made them clear to you! My best to you and to her.
I'm 70, and in relatively good health, but I know I would not agree with any procedure that extended my life unnaturally. I would let nature take its course, after a certain age, why fight it?
Partly I am still reeling with the death of my mother at age 90. This was a woman who would see a doctor for any little ache or pain and complain incessantly about how sick she was. She insisted on having various elective surgeries for her back, her neck, he shoulders etc etc. She would not do the physical therapy so would end up worse than if she had done nothing. She took so many prescription drugs she had no idea what they were supposed to do, yet she was someone who had to take pills every day for what exactly? She had nothing to live for and no one really wanted anything to do with her.
Do I want to extend my life unnaturally to spent years in a nursing home with nothing and no one? No. Would anyone really choose that?
I would rather be remembered as someone who was alive and vibrant right up until the end. Always leave 'em wanting more.
It's better to leave the party an hour early than an hour late.
79? May not be awaiting a crises. May be years of stability ahead.
Relax.
She thinks she's independent, but she's really not. By refusing to see doctors and sort out fixable problems, she's causing more work for her daughter.
I do let her live as she wants.
And often current "medicine" actively shortens a life span.
So, honor her wishes. It's her body. It's her life.
However, if she gets towards the end of life, I would suggest hospice. They will provide pain relief if needed.
P.S. The average lifespan of an American woman is 81.2 and you say she's 79. I say she's doing pretty good.
That is how you "cope" by knowing the decisions you make are ones that she herself would make.
I will say that if she did break a hip IF she consented to surgery it would take a lot in rehab given he current mobility problems.
If she elected NOT to have surgery she most likely would be confined to a bed, wheelchair or a chair. Not a great outlook.
But you do what you need to do to honor her wishes and accept them...you don't have to agree with them but they are her wishes.
One of the things you can do if she has not done so already is plan her funeral and do that the way she wants it. (Paying now is good, prices keep going up and you will be locked in and you will not be hounded to make decisions that you might not under normal circumstances)
I’m going through the same thing with my mom.. 81 and confined to a bed, dementia kicking in and kidneys failing and she has refused everything. I have to honor HER wishes.. I would just be selfish and greedy wanting to keep her with me longer as much as I want to.
So I moved her in with me as I didn’t want her to die in that empty nursing home alone and scared. I have aids and nurses coming in for her being on hospice and they pay for Everything!
I also work at a funeral home and agree 100% get her funeral wishes in order and prefunded so it is not a last minute ordeal as you won’t be in a sound mind and have to wonder if you made the decision “she” would have wanted.
I see this with most families that leave it behind to their loved ones and it Only brings a huge burden and more heartache ! They are missing you and grieving and the last thing they want to do is pick out and pay for your funeral.
Even if you are going to be cremated you still need a funeral home to come pick you up and cremate you. You still need a burial spot.. no one takes the urn home anymore. Because they find out that is a burden they don’t want to pass it down and look at that every day and then what happens when everyone dies and here is this urn still sitting there. The estate lawyer brings them to us and we have to dispose of them. Very sad!
Trust me! I see it every day.. I got all my funeral wishes prefunded at 50! If you can’t afford it now how are you going to afford it later? You can make payments
I would never leave that behind for my daughters to do on the worst day of their life ever. It’s not a matter of if, it is a matter of when. You can save money now as yes, the prices only keep going up every year.. You won’t have your house, car, material things etc.
You need this regardless.
Even if you have life ins.. leave that to them as No life ins will take the emotions away from leaving it for your kids to have to plan your funeral.
Take Care..
i have a tattoo saying no code, no cpr, stroke meds ok which an emt told me will be ignored so …
ive also got paperwork which the doctor has signed including that which says no aed, no ventilation, no intubation.
i believe in quality of life over quantity of life, the opinion of which will vary from person to person.
i want to someday go to a facility which “should” also help that quality but im too healthy so far.
i want to have a job but looking me up online shows my age so if some reads without looking at me theyll imagine an age-appropriate person not me.
no facial operation either.
this is me … the way she feels is her. But it sounds similar.
i know it’s difficult for you to accept debilitation of someone you care for but i really think that as hard as it is you should visit, help her out as she wants, and say you wont nag as long as she has a medical alert button and leave it up to her to push it.
But, I have to tell you, what she says about seeing a doctor and taking meds sounds *exactly* like the beginning of Apathy. Apathy is a BIG red flag that Dementia is possibly in play. Apathy results in a resistance to care, due to a lack of insight and the inability to recognize the need for care.
I also recognize that you said you pay your mom's bills. Why? What would happen if you didn't take care of your Mom's bills and she had no one else to do it for her? If your answer is disaster, that IS dementia. Old age does *not* make someone forget to pay their bills frequently, or mishandle paying them.
Depression is sometimes, another sign of dementia. However, Apathy can be confused with depression and which behaviors are the Apathy and which are the depression. Depression, though, involves sadness and guilt feelings. Apathy involves no feelings, except maybe anger and frustration, especially when you press them on seeking medical care.
I would not be so quick as you are to say she doesn't have dementia. Of course, I am not an expert, and I have no advice on how to get to her see a clinician, to at least rule out, dementia. But, you should consider it, at least.
Although, one point I have to add is that depression doesn't just result in sadness and guilt. The worse depression also results in apathy. I know because I suffer from chronic depression with CPTSD.
Not feeling anything is the scariest level of depression, for me at least. Apathy is debilitating and makes it difficult to function.
So, I also wondered if Suzy's mother was suffering from depression, or if she was in the early stages of dementia. That's why I pointed out the difficulties of honouring her mum's wishes if her mum no longer had capacity.
She has established her lifestyle over many years and has survived either because of it or inspite of it. Respect that even though you long for her to have a more comfortable life. Keep the communication lines open, keep visiting and quietly helping her by just doing things that lighten her load or provide greater safety, but ask permission before doing anything she would think is drastic. Separate your needs from her needs. In the end, she is making choices that make her happy. Allow her to be happy and in charge as long as possible. That will be a gift no one else can give. I have had the privilege and have learned to ask for help, but I would be furious if someone wanted to change my ideas of what makes me happy. Thanks for being in her corner and loving her as she is.
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