She is 82 with diabetes, hbp, congestive heart failure, diverticulitis, severe anemia, and renal failure. She takes 28 prescriptions and is about to start dialysis. She has been hospitalized 10 times in the past two years (TIA, CHF, and anemia from kidney disease and/or diverticulitis) I feel like we are on a trajectory of more and more medical care for someone who is not going to get better. Right now, she lives independently right down the street from me. My schedule is consumed by her dr appts and the household management that she can't do for herself (she cooks meals, grocery shops, and 'straightens up' - the rest is my responsibility). I am her only family member in the same state. I have had to quit my job to be available for her care.
I guess my question is two-fold. 1) I'm watching her on this slow decline with medical treatments that leave her anxious, depressed, and financially stressed. We can't treat one symptom without another one popping up, and every time we add a new treatment, that one issue may get better, but her general health declines. I don't think it was God's intention that we live (or die) this way. It's like we are trying to value a person by keeping them alive for as long as possible, but in the process, we strip away all human dignity. 2) I don't know how much longer I can keep this up. I'm anxious, frustrated, and discouraged, and I feel SO GUILTY for having these thoughts. A good daughter would do anything for her mother without complaint, right? I am fortunate that I could quit my job, live near her, and care for her etc, etc. and I don't have children at home to care for as well. Many people don't have that freedom.
This is hard. I feel really sad, really angry, and a little overwhelmed by it. Anyone else?
All caregivers have their limits , and that’s ok .
Time for a talk with Mom , she needs to go into long term care . She is only going to keep declining .
My mother is 100% of sound mind and able to make her own choices. Her only issues are the anxiety and depression from illness/end-of-life. We have all of the POA, Living Will, etc in place and she does have long-term care insurance as well as a modest savings. She doesn't want to go into a long-term care facility of any kind. I would not make the same choices as she has. I frankly resent her choices and that's one place the guilt comes in. I see that she is dying and honestly, it's the natural end to a good life. Her body is done even though her mind is not. Maybe that is a gift.
I have been a home-maker and went back to work as a part-time yoga instructor after my son went to college, so my earnings loss is not really affecting our retirement. My work was just personally important to me.
This dialysis thing has been sold by the nephrologist clinic as this wonderful magic bullet - "People can live for 10+ years on dialysis and still enjoy all the the things they did before," meanwhile showing the smiling faces of 60 year old "seniors" hiking and sailing and playing ball with their grandchildren. That is not her reality. She is not going to get better. I have so many trepidations about this. Research does not paint a pretty picture of an 82 year old dialysis patient.
My conversations with my mother about her healthcare are basically that I try to make sure she's informed and then empower her to make the right choice for herself. I tell her that I will do what I can to support that choice. I think she is afraid to die (she is a very emotional and sentimental person) and her choices are made in fear of dying. Now this is a runaway train. But in the end, we are all responsible for our choices, right?!? She is responsible for her choice to adopt extreme healthcare measures which might mean assisted living or a long painful death even though that's not what she wants. I am responsible for my choice in how to support her which might mean telling her no.
I do think I am feeling a lot of grief, but right now I am so angry about the situation that I refuse to admit grief. Eating my sh*tburger out of spite, I guess.....
It has been very helpful to talk this out with people who have been there. Thank you all so much.
Stick with us and will help you through the path you decide to take, no matter what that path is.
Those things get confused in ones brain. You think it's not guilt because you moms still here, but your grieving her decline, your grieving the mom, you use to have, your grieving the pain she is in, and you can't take it away from her.
Do your grieving and forget anything you think my brother guilt, you did not cause any of this, and you have done your best to take care of mom.
As far as dialysis, I would never subject any of my loved ones to that, or myself. Unless I was 100 percent sure there was going to be a magic cure very very soon.
1) now you aren’t putting into your 401k for your retirement and golden years. I hope you are independently wealthy.
2) if she is living independently, why did you quit your job? She is very clearly NOT living independently if you quit your job to manage her care.
3) why is she staring dialysis?
She now needs several shifts of people several times a day to care for her. Any attempt by a family member to do this care is a very poor decision, and may mentally break the person attempting said care.
Secondly, WHY is your mother starting dialysis?
Was it fully described to her? Did she choose to do it? Does she understand that she can decline it at any time?
This choice to do dialysis will keep what is basically TORTURE ongoing for the rest of her life. She is now actively dying; her organs are shutting down.
Yes, if I made this choice for her I would feel very guilty for doing so; I hope that you didn't encourage that this happen against her wishes at all. Guilt is about causation; and if I caused this crucible of a "life" to go on in this manner I would feel deserving of guilt.
In the end, the question here, the ONLY question, is does your mother still have capacity to make her own decisions. Does she understand she is dying? Does she wish to avail herself of these things for a few more months of illness and pain?
You have known her all her life. If she cannot make her own decisions are you her POA and do you know what she would want for an end of life care? If she wishes to go through this, then that is her own decision and she has a right to make it. If she does not, she should not be required to do so.
Your mother is dying. Her heart and her kidneys cannot long survive this onslaught. Meanwhile is this what she wants?
I am a retired RN. I so fear dialysis, and someone attempting to keep me alive with tubes and feedings, that I have decades ago written and kept up to date an advanced directive that absolutely FORBIDS what is happening here.
Whatever happens now, you will soon be free, and so will your mother. She will finally be at peace after all of this. I hope when she passes you will feel relief and happiness for her freedom from this torment.
I am very sorry. This isn't a life that anyone could or would enjoy. We would never allow a beloved animal to suffer in this manner. If you mother wishes to avail herself of Hospice or MAiD (medical aid in dying) if available in your state I hope you will assist her in her final days. If not, understand that these ARE her final days. Ask for Hospice when mom can no longer make her own decisions, and allow her to be medicated fully until she can be delivered from this.
I am an atheist, and I am a retired RN, and I have no idea of questioning any God's intentions in all this. But it is certainly not MY intention that anyone or anything should suffer in this manner if I were able to help prevent it in any LEGAL and humane manner.
Children are NOT responsible to care for their aging parents, however you made the choice to and now you're regretting that decision.
Why can't your mother instead move into an assisted living facility, where she will receive the care she requires and you can get back to just being her daughter and advocate? That would be a win win for all involved.
I think that it's actually very selfish of your mother to allow you to quit your job to look after her. I'm a mother and grandmother and I would NEVER allow any of my family members to disrupt their lives to care for me. Period, end of sentence.
So it may now be time to put your big girl panties on and say "enough is enough" and I want my life back to live as I see fit. There is nothing wrong with that and I would think that if your mother truly loves you that she would want what's best for you as well. I'm sure that you would never want your children to have to care for you as you age right?
So use the voice that the Good Lord gave you and speak up before it's you that will need being cared for from all the stress related issues you will have.
You are not wrong to be feeling as you do. No one person, or daughter, should be expected to care for the myriad and endless needs of a very ill 82 year old senior all by herself. It's not reasonable at all.
Best of luck to you.