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.
You ask how should you cope?
Love your mother, be there for her. And be thankful that she has let you know in advance what her wishes are. And let nature take its course.
She ( as all of us) will not live forever.
Focus on the good times you and she have now. Make the most of the time you have now. That is what she is asking you to do.
If she has not already, talk with her about preparing for after death. That is one area where many of us are unprepared. Make sure she clarifies, in writing, her wishes for funeral, disposition of her body, and how to manage her material belongings, including all accounts to be paid, closed, and assets to be distributed.
Then, let her be. She will be comforted by the fact that she is prepared for anything. And hopefully, so will you.
My mother ended up in long term swing bed, which is basically hospitalization even though she could use a wheelchair 4 of those years.
Thank God I was able to "grandfather" her monthly charge or payments or I would have been paying $8,200 at her passing, instead of $5,800.
The care was good, sometimes too good. And this is my only addition to the excellent responses you've received. Be very cautious when she requires antibiotics, as there are some which are considered live extending. Sure wish I could remember which one they called asking my permission to administer. You can get caught emotionally disadvantaged with urgent calls. Later mothers doctor called and apologized for them overlooking her last wishes giving her that antibiotic. Truthfully, it was the pharmacist who first alerted me!
Mom's response was to have an even more strict Living Will drawn up and kept at the nurses station, which named the life altering antibiotics.
The mistake caused another 4 years fairly bedridden, certainly totally dependent.
This last year, entering my 70's, I have updated my Living Will and prepared all documents so my Healthcare Representative has an easier experience which also respects my wishes.
Good luck & God Bless@
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.
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.
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.
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.
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.
it is not your right to force your desires on someone else.
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.
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 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.
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.
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 do let her live as she wants.
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.