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I've seen this mentioned in a few posts and wonder how many others are in this position. I’m not sure this makes any sense but need to get it out cause it’s making me so sad and guilty.


My mom is 85 and has been in assisted living for almost 6 years. She has lots of health issues but all are slow degenerative ones- end stage copd, chf, high bp etc She is on 3L on O2 and has progressed to the point where she can only move around her apartment with her roller but has a maximum of 10 steps before she needs to sit. She hates technology and is dependent on the aides and me for everything.


She has had many health scares over the past 10 years and I’m constantly told this is ‘it’ -I jump through endless hoops with her doctors and care team keeping her comfortable and happy and prepare myself for the worst but then - every time - she miraculously recovers. Sometimes it is a few weeks - others it is 6 months in rehab. She never bounces back to the point she was but to date enough to get her back to assisted living.


She had a fever last week and her dr was certain she had coronavirus- which for her is likely deadly. I talked to her drs and team at her assisted living and then to her about her advanced directives and while we had updated them last year to DNR and no ventilator, no IV feeding she started to say she wanted all life saving treatments If she got sick. Her doctor explained to her again that cpr would break all her ribs and her chances of coming off a vent was less than 5% and she would likely be totally bedridden but she didn’t care. She said if there is any way to save her to do so.


I love my mom dearly. I do not want her to die but her body is so tired and it’s only by the grace of god, the fact that she is waited on hand and foot in her alf, and the 50+ medications she takes that she is still here. I have been managing her care for 6+ years and am tired and worn out and while I want her to enjoy her life as she lives it now the last thing I want to see is her Alive but barely existing. SHE is totally fine with that but I’m the one that has to manage and care for her and it’s killing me to think this could go on for another 6 years.


The wonderful memories I have of her are fading and being replaced with her endless demands and resentfulness for being responsible. I have 3 children and my younger 2 have no memory of her being a ‘grandma’ or being independent - their entire relationship has been one where their mom has to care for her.


But how can I not abide by her wishes? Even if I think they are short sited and selfish, I need to do what she would want right? Even if the doctors disagree too? I feel so guilty for feeling this way but I really believe the human body is not meant to live forever and just because there is something that can keep you alive doesn’t mean it is the best choice.


I feel like people are in the opposite position- their lo wants to pass and they don’t want that. And I WAS like that until I watched my sil die of cancer and my mil die an awful slow death from Alzheimer’s and the thought of doing it yet again is terrifying:(

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FullCircle, does your mom have dementia? If so, I would temper what she says through the filter of a broken mind. If she is "all there" mentally, I would honor her wishes, as hard as that may be. If you don't want to carry out her wishes you can consider resigning your PoA. With COPD, and all her other underlying conditions, it is highly unlikely she would survive C19, no matter what treatment she received or measures they would take. I wish you peace in your heart as you care for your mom.
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Yes. She does have the choice of whether or not she wishes to be given life saving treatment. She can't force doctors to carry out specific actions, but she can consent in advance to any they believe are in their patient's best interests (clinical decisions are the doctors' ball, neither of you can bind them).

What I suggest is:

* read "Being Mortal, Medicine and What Matters In The End" by Atul Gawande. Consider passing it on to your mother after you've read it.

* really try to put yourself in your mother's shoes. Accepting death is a great deal easier when you aren't being brought face to face with it. Is she in any way a religious or philosophical person? When it comes to the real reality, what do you think might help her to prepare?

* have a look at your local hospice providers' websites, and see what they have to offer in the way of guidance and support.

* be comforted that you are so very far from alone in your mixture of feelings. Nobody wants their parent to die. But a great many people do want the experience of their loved ones' last years to be over, and even more wonder how much more they can take.
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Seems your mom is scared of death. Time to talk what she still wants to accomplish with her life. Talk with her about what would be her desired "optimal death experience". Then, together try to accomplish her life bucket list and help her get to a place of mind where she is comfortable about "letting go".

As a Christian, I consider that having a pastor visit her may be comforting and may help her prepare to "be ready to let go".
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FullCircle May 2020
Yes. She is terrified to die. She is catholic and feels that God will take her when he’s ready for her.. and he’s simply not ready:)

She’s content just to sit on the couch and watch tv 14 hours a day and even less if she things she’s getting sick. She doesn’t enjoy anything or really do anything other than watch tv and sleep. She has no real interests or things she likes to do other than talk on the phone to me and see me and my brother. She’s always been a simple person and is mostly pleased to just exist.
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My dad has had many of these close calls with death like you describe. His advance directive states that he wants no life saving measures. He often tells us that he’s ready to leave this world as his days are so hard with CHF. Yet.....when it gets to a certain level of hard, and he really can’t catch a breath, he calls for an ambulance to take him to the hospital. He gets treatment that is a bandaid to make him feel better temporarily. I’ve come to understand that there is something inbred in most all humans making us fight for life, even a life with poor quality. I also feel the torn feelings, don’t wish my father dead, but don’t wish him the life he’s living.
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If she is not on hospice, talk to her PCP about whether she would qualify; my guess is that she would. Call it palliative care, as elders think hospice means she is actively dying. That will allow you to get a break in running around to multiple doctor appointments as a nurse will come once or twice a week, consult with the attending doc regarding care, and mom will feel attended to. Also, hospice provides showers and our experience is that the caregivers who provide them are far better than AL caregivers because they get 30 minutes per shower, not 10.
Also, explain to mom that she will end up in a nursing home if she goes through all those lifesaving measures and not return to AL. That is most elders worst nightmare.
You will likely have to do some therapeutic fibbing, but well worth it.
When it comes right down to it, if she ends up needing surgery, she will likely be denied as a poor candidate once the surgeon consults with her pulmonary doc. That's what happened to my mom. Be sure to have a list of those doctors and their contact info available at all times.
Good luck, and i hope that helps.
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FullCircle May 2020
Nope. She would be 100% fine in a nursing home. The ONLY concern she has with moving to one is that she can afford to privately pay for a ‘nice’ private room and doesn’t have to go on Medicaid. She can afford a nursing home for a long stretch and expects yo go that route.

my far died in a freak accident 17 years ago and while devastating he went in a split second, fully dressed and loving life. Mom is the opposite. She is happy to just decline every so slowly.
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If you are listed as the surrogate on her advanced directives and she is unable to make decisions, it's your call. At that point, I would decide based on the current medical information at hand as well as her past medical history. Even though my mother had executed advanced directives stating she wanted nothing done, the E.R. physician still wanted review the document and asked me what to do. It could be that your mother is afraid of dying. My mother and I had that discussion and I promised her that I would make sure it was pain and anxiety free. Most people are not aware of what resuscitation entails. They also are not aware that in the frail elderly, the likelihood or survival is about 50 percent. As a geriatric social worker, I have seen families honor a full code only to have to make the decision to remove life support. In my opinion, I think this decision boils down to quality of life versus quantity of life. Perhaps she would be open to a discussion along those lines or perhaps involving the physician would be a good idea. Since she resides in a facility, a code status should be on the chart.
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Unfortunately unless she has dementia, it is her decision. All you can do is your best.
Stop running so much, she is at a facility, let them care for her. Be a visitor not a caretaker and pray. Either she does not understand or she scared but either way she has decided so you have to work with what u have.
Praying for u to have peace
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MaryKathleen May 2020
I agree with Savage4147, maybe all you can do for your sanity is let go. There is an old Alcoholics Anonymous saying. "Let Go, Let God", and remember the serenity prayer. If she is of sound mind, she has control. Just step back and be her daughter not her caretaker. Backing off may be the hardest thing you have had to do in your life. A lot of us have been there and we know. Like they say on airplanes. Save yourself first.
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Imho, I did a lot of "running" whenever my late mother fell ill, thinking that was it. However, my "running" was not easy and required a plane ticket to fly 7 states away. A lot of unnecessary anxiety. Prayers sent to you.
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It is very rare to be brought back to life from a full code if it happens outside of the hospital. The success rate is very low. 26 years with EMS, I saw 5 patients discharged that I had brought to the ER doing CPR. Just more food for thought.
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I would advise you hand over care of your mother to another person. Do you have siblings or other available, trusted individual? I'm sorry but you sound burned out and that can endanger a loved one. It is HER decisions that matter, not yours. If you are not up to the task, you should not be in charge of fulfilling her wishes. I am rather appalled by your comments, you are pushing your life/death opinions on another. Please, hand over the duties to someone else. Thank you
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