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:(
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
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.
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.
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".
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.
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.