My beloved mother, aged 86 years and 6 months, passed away in Dec '17 after living with me at home for 15 years. I am her second son, fifth and last child. After my Dad passed away in 1987, my only (elder) brother harassed her, even threatening her with physical violence, to part with her property. From that day Mom got paranoid about him and begged me to "rescue" her and so we sold the house in our home country and I brought her to live with me in a Middle Eastern country starting in 2002. She was 71 years old when she joined me.
I am single, never married and loved my Mom with all my heart and made sure she had no unmet wishes and showered her with all the love I could...took her out for daily walks with her clutching my hand (she refused to use a walking cane for a long time), gave oil massage for her legs, spent as much quality time as I could every day and helped her out in the kitchen, took her out for dinner, brought home all the varieties food dishes she wanted etc. Through her 70s I did a wonderful job of her getting cataract surgery done in both her eyes and the smoothest ever uterus removal surgery when she was 75. Health was never a topic of concern through her 70s and she was delighted to live her "second youth" with me . During this time, I made sure she had medical check-ups once every 2 months and addressed changes in medication and any new health issues. All through these years, she completely severed contact with my siblings, the larger community back home and chose to spend her time only with me.
When I had to switch jobs from one country to another in 2009, it became clear she was maladjusted to living with anyone else other than me because she was responsible for so many issues and friction created in my dear friend's house where I had kept her for a few months while I was getting her visa etc. ready. In the new country, I made shuttle flight trips with her every 6 months to meet her visa requirements.
Then in 2014 she was forced to stay under the care of my friend in my home country where I had rented a flat exclusively for her with all facilities, a maid to cook, a caregiver and doctor doing home visits. After about 6 months she started complaining of "poor quality care" and her energy levels were coming down due to reduced appetite. So I brought her back to the country where I worked but now she was getting gradually weaker and started requiring more and more assistance for daily activities. When she was around 85 she started having to sit in bed for 15 minutes after waking up before she could rise up. Eventually this started getting longer and meanwhile she had trouble walking even a few steps in the flat. By now I had employed a daytime nurse and caregiver to make sure she is assisted when I am away at work. She never complained of any pain or display an specific symptoms except becoming more and more frail gradually. In November '17 she complained of severe headache, but refused to come to hospital fearing the strain given she was immobile. So I arranged for a doctor to visit her home, we did all the tests and could not detect any specific problem except a known issue of hyper para thryoidism. She started complaining of low appetite again and we were trying to figure it out. Meanwhile, within a space of one week, I was shocked to see her neck muscles become totally useless and her chin falling on her chest.
I got her a neck collar and along with the nurse carried her to hospital where the ER doctors said they suspect she has a cardiac problem. About 4 hours after admitting her to the ward, and after I fed her dinner and wished her good night, she became unconscious for the first time in her life !!!! I was DEVASTATED. Now, the doctors got ready for CPR and were gettng ready to get her to the ICU. I don't know why I said it, what subconscious reasoning made me say it, maybe because I just couldn't bear to see the malnutriotined, frail, unconscious body of my beloved mother, I told the CPR team and docs to keep away from her and not do anything invasive that will make her suffer more. They warned me this is life threatening and she should be intubated. I asked them what will be the quality of her life even if she survives , and are they sure needs an angioplasty as they were suggesting, and how confident were they she could survive the ICU procedures given that 2 surgeons refused to operate on her just 3 days before citing frailty and advanced age as a huger risk. The docs gave evasive answers.
In that moment, it seemed another force had entered me, and I clearly told them NOT TO TAKE HER TO THE ICU and DNR.
Next day she took her last breath with me by her side all through the night, holding both her hands.
It's been a month and now I am being hit by a storm of GUILT. Did I do the right thing ? Could I have forced her to go to hospital much earlier? I feel if I don't feel guilty then I'm not loving her. I feel responsible for her death now. I wish I could get closure,
Please put yourself in her shoes and I think you will be assured in time, it was truly amazing all that you provided for your Mom and no doubt she knew how much she was loved. Missing our loved one's just becomes part of our life, but we have to accept what is really within out control. Be patient with yourself.
Thank you, I really do hope my Mom recognized my love and dedication for her, although in our culture it is very rare to say it openly.
How I wish I had spoken to her about ICU risks and DNR so I could have got to know her wishes directly. I do recall she always said she wanted to pass away when she was functional. I do think in a way I made her wish come true.
She also said she feared a death that is long and painful. Actually, she was unconscious / semi-conscious only for one day in a medical ward before passing away at 6am after having 100% oxygen saturation through the night except for the last 2 hours preceding the final moment. I would like to imagine that was a relatively peaceful passing away, and also I am proud I held both her hands till the very end.
Thank you pnut for your valuable suggestion to put myself in my Mom's shoes and see how she would have appreciated my care for her.
Regarding the book recommendation "Being Mortal", I will surely get the Audio version and listen carefully. Have already seen the notes at goodreads...seems this will help A LOT. Thank you.
The decision you made seems to me not only morally right and compassionate, but rational as well. I don't know if your subconscious might have been reminding you of scenes you have witnessed or experiences you've read about; but I feel sure that if more people were shown the reality of CPR and of ITU procedures, weighed against the mortality and morbidity rates of patients undergoing them, they would make the choice you did.
I could wish that Fate had been kinder to you by arranging for your mother's heart to fail and for her to slip into unconsciousness and pass away one night at home. But beyond that, your decision gave her the gentlest end possible.
And, by the way, ethically speaking no, you could not have made your mother seek hospital treatment earlier. You asked a competent adult what she wanted, and reached a compromise by bringing medical attention to her at home. Bullying, frightening or otherwise coercing her into changing her mind would have been wrong.
Do give yourself time to recover, but then again don't hesitate to seek bereavement support if you feel you're not making proportionate progress.
All decisions we make regarding their care are made out of love, so much love that we want the best for them, even if on the surface it seems like a hard choice. Having known my Mom for 15 years, and having lived with her every day almost, and after reading the responses I've got here I am beginning to see with confidence that I made the right decision for her. Doctors see a new patient every few minutes and cannot make a holistic, customized judgment for each patient about what is good for them. In my mother's case I know she would have hated being in the ICU and would have got absolutely depressed with the after effects of ICU....she was fussy and prided in being healthy....I made sure all her life she felt that way !
Countrymouse, call it Fate or Providence, just a week before my mother's condition started worsening I opened a book on English essays ("Patterns in Action" edited by Robert A Schwegler) and the page that opened was a heartfelt essay titled "A Crime of Compassion" by Barbara Huttman who worked as a nurse and then nursing coordinator in the 1980s. And this essay was about the need to change the way we treat the sick and dying and need to reconsider "practical consequences of abstract moral positions".
I think the graphic detail in the essay consolidated my earlier knowledge about the wishes of the dying : to die at home, to die with near and dear ones around, to die without the pain of medical procedures.
Thank you so much. I am just crying (happily I guess) after reading your line, "But beyond that, your decision gave her the gentlest end possible. ".
After she passed away, I have read hundreds of medical studies on ICU mortality rates in the old (above 80yo) and very old (above 85yo) and consistently it is shown that patients like my Mom who are already frail have discouragingly low survival rates (frailty as measured by number of deficits in independent daily living activities like changing clothes, rising from toilet seat, walking speed) . On top of it, a good share of the frail and very old who do survive up to hospital discharge do not regain their functional status prior to admission and many get discharged to a nursing home than home.
Although on an intellectual level that gives me some comfort that I may have done the right thing, it is here in this forum when I see fellow caregivers TALKING to me and giving me their direct experience based feedback that I am getting all the emotional support I so much need now.
Countrymouse, I am so glad to read your assessment of my situation and am so thankful for your thoughtful response that DOES VALIDATE what I did out of love for my Mother.
Thank you. Thank you.