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.
Furthermore, should she develop a lack of capacity, she’s been pretty clear about her wishes, both explicitly in her living will and also her general philosophy (no doctor times 35 years, no chronic-condition meds, etc). So hopefully that will give you some useful guidance about how to represent her wishes when she can’t represent herself. Many POA’s don’t have such clear signals to follow, which leads to a lot of agonizing about what mom would want.
You're being very realistic about what's likely to happen - the fall, etc. etc. Since she knows how she wants to exit this life, you might as well give her free rein to do it. Nothing but frustration for you would result from trying to stand in her way.
But still - there's the prospect of her having some problem (stroke, fall, dementia) that results in her living disabled for many years, as you said. I think you should discuss that with her as kindly as possible. How would she like to handle her demise if disabled and unable to find what she needs to accomplish it? Or has cancer, and is in pain? Would she see a doctor for diagnosis when she has a growing lump somewhere? Or just lie in bed waiting? Would she allow hospice? Palliative care? Are you supposed to be her only caregiver at such a point? How long would you be willing to honor her previously stated wishes? How long can you put aside your own life to watch her debacle unfold?
My friend's sister, who suffered from a lifelong illness, quit eating. She told everyone that this was her wish, and it took her about a week to die. That's an option for your mom. If you live in a state where mom has the right to assisted suicide, you could help her get the paperwork in place now so that when she needs it, everything is ready. There are some excellent books and organizations to help.
I am in favor of being able to choose when we die, so my advice is meant to be helpful. I wish your mom good luck, and you too as you navigate this unfamiliar territory.
I did mention the “stop eating” thing and her response was she thought it would be a painful way to go. My dad ate about 300 calories per day for many months and was barely 100 lbs at the end. But I don’t think that was the direct cause of his death.
I have almost the same advanced medical directives, with the exception that I only want palliative care with prescribed pain killers as needed (not from "the street" for god's sake). DNR. No elective surgery, and no anesthesia if a local is possible for any surgeries that I consent to. Also MAID (if legal) or other methods if not legal.
I have empathy for your situation while waiting for the other shoe to drop with your mother. As long as she's competent mentally what she says goes. If she's incapacitated I hope you will honor her wishes and feel no guilt.
I have made my mother well aware that if she requires 24/7 care or can’t live a lone as she is now, with me only doing as I am now, then Medicaid nursing home it is. That I will NOT be her hospice caregiver.
I'd check in on your Mom when the high school girl is not there. So you have more points of contact.
Your Mom sounds like she knows what she wants.
The rough part for you is that she’s still living in her home . We are in the “ waiting phase “ too. The difference is our elder will not assign any POA. We are going to visit her again in a few weeks and ask her what her plans are when she can’t live at home anymore which is coming soon. We live too far away to help . I suggest you ask Mom what are her plans when she needs more help and remind her that you can not be her hands on caregiver .
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.
Mission creep is tough! I do try to have a clear line on what I will and will not do, but things do crop up and I have to make a decision each time, do I rush over there or what. That was much more intense when my dad was still alive. But it still happens. Like she drops her iPhone in the car and can’t reach down under the seat. Or the washing machine is make a funny noise. Or the recycling cans got knocked over and stuff is all over the front yard and street.
2 issues you may be able to make progress on are glasses and her feet.
For glasses, try pointing out how nice different peoples glasses are on TV or in ads. Then start asking her what she things of other peoples glasses and what kind she would like to have. Basically, plant seeds for her to want to get new glasses. I use a place called Eyemart Express, prescription exams are only $65 and the local Dr. there is great. My wife and I love interacting with him. My point is it should be relatively easy to get it to be her idea. Easy yes, but not quick.
For her feet, explain that Stainless Steel Scalpels are non-toxic with no side effects and that a podiatrist may be able to really help with her bunions without medicines. After the foot Dr. she may buy into letting a Chiropractor take an x-ray of that leg and possibly get it straightened out without surgery. When one structural element gets out of alignment it throws everything up the skeleton out of alignment. That foot issue can affect the knee, hips and back. The poor dear's back probably feels like it's going to break most days. If you can get her feet straightened out, the rest of her may be able to be straightened out too.
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..
The #1 best thing that your mother should do is strength training. Building muscle and working on stability will go miles and miles in preventing falls and injuries.
I'm not diagnosing anything, but your mother most likely has very weak glutes, quads and hamstrings. That in itself will cause hip and knee problems. Your glutes are the largest muscles in the body and they are what facilitate squatting (standing up) and lunging (walking).
One session each week would be a fantastic start.
I do let her live as she wants.
we had an elderly neighbour last house who had a few nasty falls yet would not agree to wear glasses
pride
her son was in despair
as an outsider I spoke to her pretending I needed glasses and didn’t want to wear them which hit her talking about her also but I said I will because I hurt myself and also it was preventing me from reading so I would and I could believe next time I saw her she was wearing glasses which I complimented on looking great on her. Sometimes maybe an outsider talking to her?
as for dentists etc
do they( healthcare) not do home visits
i dont think you should insist - it will just encourage her to fight back
magbe mention now and again the benefits of treatment and reduction in pain
some people will never agree medical treatment - my brother has a school friend who had a foot accident doing parachuting years ago- he had a plate put in which should have been removed but woukd he go back and get it removed ? Now it juts out of his foot? Horrendous
he can’t even put shoes on yet will he go to the hospital- no
Sometimes you just have to accept nothing you say will change a persons view and let them get on with their life
Maybe a word from someone else may persuade her
she seems to want to fight you - as a lot of parents do
Tell her you accept her choices and allow things to settle
then maybe try little things to help ease pain
foot soak or something introducing her to the benefits of treatment
failing that - if really worried speak to her doctor Altho he will prob say her choice
good luck
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.
My only hesitance would be with your mum suffering something that would cause her discomfort and pain, but not lead to her death, if she lacks capacity.
If your mum were to have significant cognitive decline, she wouldn't be able to take steps to end her own life, nor would she have capacity to take such steps. That would cause anyone helping her to be liable for murder, which I am sure would not be her intention.
Also, if your mum suffered a deterioration of her mental capacity, she might not understand or be able to cope with pain.
In these circumstances, I think that, as DPOA, you would have to make decisions for the new situation you would find yourself in. There is no need to discuss this with your mum, as thinking about losing herself would only be distressing, and it sounds as if your mum is unhappy enough.
Nevertheless, I would honour your mum's wishes about not taking any extraordinary measures to lengthen her life. Quality is more important than quantity.
So, in those circumstances, I would do something about broken bones and I would ask for strong painkillers from her doctor. However, these types of treatment won't keep your mum alive, just comfortable.
I was cross that a locum GP had sent my mum to hospital with a chest infection. Knowing how much discomfort she was in and how little enjoyment she derived from life, I would have made the decision to let the infection run its course. However, I was told that antibiotics were administered, not to keep Mum alive, but to ease her symptoms. That wasn't something I was aware of.
The hospital sent Mum home on palliative care, and she died 4 weeks later, at 76 years of age.
In her last weeks, I made sure Mum was comfortable. I argued against pressuring Mum to drink her meal replacement shakes or to swallow her usual meds. I believed that Mum's wishes should be honoured.
But, by God, I made sure Mum had as much prescription pain relief as legally possible!
Each time Mum was admitted to hospital, this year, I was asked if she had a DNR order. I don't know if everyone has this experience in the UK, but I found that doctors and nurses were much more understanding about the importance of quality of life and comfort over cure.
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.
My daughter, a former nurse, said that's not feasible: "what would happen if you were knocked down when crossing the road and resuscitation could have saved your life?"
I wouldn't want to be brought back, just to suffer the pain of broken bones and possibly further problems in my spine. If I had a heart attack tomorrow, then what a quick and easy way to go!
However, I don't want to put up with discomfort from health issues that won't shorten my life, at least not immediately. So, I will do what I can to relieve the arthritis in my knees and hips, I will go regularly (sort of - I'm already late) to the GP's surgery for B12 injections, and I'll attend screening appointments at the hospital.
I'll do these for myself, as well as for my daughter. I don't want to be a burden to her.
I have had a DNR in place since my early 30s. My family knows it is not to be invoked unless the prognosis is grim and I would never recover.
If you want to choose you should get the DNR in place before it is to late.
Just a heads up, my friend had a heart attack and his wife told them no resuscitation, however, because she didn't have the document readily available, the resuscitated him and kept him alive on life support for a week while she had to fight to get the hospital to honor his wishes. And she got the giant bill to add insult to injury.
it is not your right to force your desires on someone else.
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.
My mom was similar and had made some, not all, of the same decisions. She passed away at age 89 this past January. I'm not sure how to make this short while making sense, but in terms of "wait for the crisis" (yes, I understand that completely!) - she ended up having severe spinal stenosis and aortic heart valve stenosis, and she didn't want (or qualify for) surgery, which would have been the only treatment. She literally couldn't do anything for herself because the spinal stenosis affected her arms and hands, and she had used a walker for years due to diabetes/neuropathy so her legs were very weak and her feet had no feeling.
Mom would not consider moving closer to us (I'm an only child) prior to the stenosis - but after the spinal stenosis began to affect her, her doctor told her, you can't live by yourself anymore, and not only that but you need 24 hr skilled nursing care. My mom had no other choices at that point, and said she just wanted to be near me and my husband and be taken care of until the end of her life.
I wasn't fully educated about what we might have been able to do with Hospice, but I have to say, all the hospital folks we dealt with, were adamant that she didn't need and "wouldn't qualify" for Hospice; I think in hindsight they were incorrect. I think it had something to do with whether or not she would even be admitted into a skilled nursing facility.
We ended up having to find one of those facilities near us for her, with the help of the hospital social worker, who was an angel. It was pretty good, not great, but probably better than many. We visited her 3 times a week minimum, for several hours each time. She had TV and could chat with friends on her phone. She consented to continue taking her insulin when needed and other diabetes meds; she would take a painkiller now and then. She would not take meds for her cholesterol despite the aortic valve issue. She had issues with constipation and she consented to take meds for that. The nursing home continued to tell us she had no reason to be enrolled in Hospice - I think it's my biggest regret, that I didn't insist, because I believe she would have been more comfortable at the end if she had had their services.
She ended up getting pneumonia - because once a person of her age is bedridden and can't move much, that's a huge risk - and she passed away within a week of that. I was with her, which I'm grateful for.
I guess I'm telling you this to say, my mom always thought she would just keel over and die of a heart attack at home one day, but she didn't, and the crisis was, she became completely unable to care for herself or do any activities of daily living. We dealt with it. It was hard, but there were no other choices. She only lasted 6 months in the nursing home, which I'm positive was her wish, if she had to be there at all. I wish I had gotten Hospice for her. Maybe that's something that will be helpful for you. Hang in there and I hope for a better outcome for you and your mom so she can stay exactly as she wants to be.
What you can change is your role in it. Let her get more paid help and you back off. She shouldn't be calling you for minor things. I would not run right over for anything but an emergency (not saying you're doing that, just in general).
It's too bad she's not taking care of painful things like bunions. I would do that but would not do chemo. But that's me!
I don't want my kids having to run over to help me with little things I should do myself or pay to have done. We all have busy lives and should freely choose how we spend our own time.
Best of luck.