About making a promise to "Let me die at home"

I want to write this story as advice to well meaning family members out there who so desperately want to make promises.

Please consider your family in your decisions!! They love you. I have several friends who have been down this same road and it leaves scars.

Her situation was complicated. Her husband was 83 - married 60 plus years. She was nearly 80 and had a lung disease. She suffered so much, for so many years. She was a gentle and sweet person and never touched a cigarette but her brutal illness made her ability to breathe a constant struggle. She had many fears. The end for her was a nightmare. I had the mixed blessing and curse of taking care of her in in-home hospice for 3 weeks at the end and I had some lovely time with her - talking, sharing, just being together. But I also witnessed some things so horrible that I will never get them out of my mind. Had she been in the professional Hospice Facility recommended, i would still have had the wonderful time with her - BUT i would not have had the guilt, fear, and even horror that I now carry.

I have advice for others. My Dad promised my Mom he would let her stay at home - until the end -because she was afraid to go to a "nursing home or hospice" because of irrational fears based on past things she perceived -which we tried to talk to her about. She would not hear of the truth. The Doctor told her one year ago to go to facilities and find one for herself!!! She did not. She stayed in denial about care and death although she was a Christian. My Dad was adamant to keep this promise but he was unable to care for her at his age. They did not have the money to pay for sitters and Hospice nurses are angels but they are not 24/7 care in the home.

SO---that leaves family. None of us (2 sisters, 2 daughters) are Nurses and we have the emotional aspect as well. We have the fear of not giving the meds as well as they could be given or not giving care as well as it could be given and then feeling that guilt. The FACILITY would be covered under insurance. We could have visited as much as we wanted and we could have let the staff take care of her as she needed.

Instead, after 3 weeks of caring for her, I fell apart - completely - after watching her gasp for breath, panic several times a day, nearly died twice, sit dirty (hair) because we could not risk moving her at all, and then have the horror of having her scream at me that I was killing her by giving her the meds to calm her (irrational fear of meds too) as instructed by the nurses, and that she was terrified of dying. "Please don't let me die".

All because a promise was made. A promise, not for the best of care possible, or for what would work for the entire family, but what was a promise of two old, scared people. Because of this she did not get the best care - I know because I did my best..... but I am not a nurse!! And I now have images in my mind which should not be there. ( I will spare you all the details).

I WILL NOT DO THIS TO MY CHILDREN. I will ask that my family do what is best for me. I trust that they will make judgments which will be best for all. If I am in a Hospice Facility, it really is the BEST place I can be! I have seen them and it is true that they are the finest places on Earth. They care for everyone concerned - including the family.
With the best intentions, family can put each other in the worst situations.

Conversely, my Mother-In-Law, who must have seen this happen, saw to it years in advance that her Will was complete, and that all of her Advance Directives were made, and she even spelled out details concerning her care at the end. She had Leukemia. She knew what would happen. She left nothing for the family to do but see to it that her decisions were carried out. She made them when well and rational. She even had the means to put aside money so that "she would never have to put out her kids" Now I know what she meant. She knew we would visit and see over her. But she did not have us filled with family meetings, fights, people quitting jobs and moving to care for her, all of that. She planned ahead.

The truth is, we are all going to die!! We do not know when or how. If it is an extended illness, there are better and worse ways to deal with it. When the old person is fulfilling a promise to the beloved spouse - but that person cannot possibly carry it out, it that right? You just made a promise that your FAMILY then has to keep! Not you.

So do not ask your spouse to make promises!!! Just ask that your family treat you with Love and Respect!!!!!! They probably will. And facilities today are not like the old days. Yes, there are good ones and bad. Go check them out yourself while you can. Ask you family to make sure wherever you go is clean and good. You can stay home as long as is possible!!! Of course. But there does come a time...... Visit a Hospice. Visit Assisted Living. They may just shatter your images of the past.
I love my Mom.

Comments for About making a promise to "Let me die at home"

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Jun 26, 2011
I hope you know
by: Tina in Chicago

A promise is a promise. Those made from deep unwavering love are even more honorable. I too cared for my Mom at home. I too suffered the accusations of not doing right by her when she was suffering or when those meds made her irrational. I have no regrets. The terrible things you describe, though hard on you, surely made her last days more bearable. Truth is, when they are in facilities "we visit." But when they are home "we are there" with them 24/7 sharing their pain, their anguish, their desperation, their fears, their suffering, their ups and downs, their anger, their hope, their disappointment, their ending. What could be more loving? Their death not only happens to them, it happens to us. You have every right to make sure your kids don't have to go through that with you and I applaud you for it. She was scared and you should feel honored that she believed you would be her protector. You were her protector!!!! You are a wonderful daughter. You suffered the unthinkable for the love of your Mom. God Bless you. I hope you know there will come a time that you will be proud of what you did and have no anger about it.

With understanding of your journey

Oct 18, 2009
I know how you feel!
by: Pam

Reading your post was really a comfort to my heart! I was in the same awful situation, having to make medical decisions for my mother when I was in an emotional roller coaster when she got sick and had to go in the hospital. The hospital did three different minor procedures on her, mainly to diagnose what kind of cancer she had. We brought her home and my sister and nephew took care of her while I worked, and I would take over on the weekends. Both of them have addictions to pain meds, but it never occurred to me that they would take mom's pain medicine--but they did!

She got sicker from an infection--the hospital didn't give her any antibiotics to bring home--and she ended up back in the hospital. I decided she would be better cared for by professionals, so I had her put in a skilled nursing facility. She was semi-comatose and didn't communicate with us, but my sister and nephew argued with me constantly about bringing her home, argued with the staff, and basically made a horrible situation worse!

My mom always feared being in a nursing home, but she didn't know where she was, and we would visit as much as we could. At one point she had told me I needed to "put her somewhere." That really broke my heart. My sister and nephew are still angry about this, but I know I did the right thing for my Mom. They don't even feel guilty about taking her pills!

Mom knows I did what I could under the circumstances. My only regret is that she slipped away when none of us were there. But knowing the strong, independent woman she was, that's probably how she wanted it.

Jan 03, 2009
so sorry
by: Anonymous

I just lost my dad who spent his last week unconscious in hospice. It is indeed a godsend.
I am so sorry you and your mama had to go through that together.

she wasn't herself then, you know, and neither were you. Try to focus on the good old days instead, and forgiveness for yourself and her.

You're 100% right about everything. I know that doesn't make you feel any better. Your mama will always love you and be proud of you for the effort you made in her behalf and posting here will help someone too.

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