Hello. I have just registered on FR after lurking for a long time. The subject of this thread is something that has been troubling me for months now.
Last Christmas, my mother had her third and most serious stroke. She was 85. Her throat muscles were paralyzed as was her left arm, and she was a little hazy in her thinking, but her heart rate and blood pressure were both good.
She stopped eating, and refused a tube, taking only sips of water. She refused all forms of therapy (rehab,etc.) despite the most urgent pleas of her family and health care professionals. She just told us that her whole body was failing, the thought of eating made her sick and it was time to go.
By April, she had died, peacefully and in her own bed. But my brothers and sisters and I are still torn up from the experience. We keep thinking, she could have gone a couple of more years, but that’s pretty selfish, right?
What do you guys think?
I think your Mom beat the odds by about 7 or 8 years. She let go of the pole on the merry-go-round when she realized the ride was no longer fun. My Mom did the exact same thing. I’m glad she didn’t continue to suffer and I’m glad I didn’t have to watch her suffer.
First, welcome to FR! It sounds like it was a quality of life issue for her, something that we probably won’t appreciate until we get to be that age.
Your mom was blessed with a peaceful quiet and dignified death. She chose her own path, after already having struggled through those strokes which severely lessened her capability of enjoying life. You should NOT feel guilty for going along with her wishes.
Within a year and a half’s time I had to make end of life decisions for my mother then my father.
On New Years Eve 1995, my mother was suddenly hospitalized with what the doctors at first thought was a mild heart attack. In less than 24 hours after her admittance, I got a call that she had stopped breathing and had to be put on a ventilator. I had been with her only a few hours earlier and she was alert and conscience but before I left for the evening, she took my hand and asked me to pray for her. I think she knew something was terribly wrong. It was. She had acute pancreatitis. The doctors and nurses and care givers at Johns Hopkins were amazing and would not give up hope and continued to give us, her family hope. They did everything humanly and medically possible and I give them great credit for their perseverance and the great compassion they showed to her and to us, her family.
After 2 weeks on full life support including dialysis, the doctors had a meeting with us. They told us that for reasons unknown to them, her pancreas had literally exploded and was pumping poison into her entire body, literally dissolving her internal organs and destroying her brain. She was now in a coma and all her organs had completely shut down. Despite all medical efforts, nothing was going to save her and we had to make a decision; continue futile life support or let her go. One doctor in particular impressed us so much; he held our hands and cried with us. I know he really didn’t want to give up but knew that there was no good outcome.
My father, my brother and I knew from discussion we had with my mother and knowing her and her great believe in God and her faith in Catholicism, that she would not want to be kept alive by artificial means and we told the doctors to disconnect the ventilator. She died very peacefully and mercifully within minutes and according to her wishes, she was buried with a High Catholic Mass.
My father soon filled out a Living Will and Advanced Directives and made me his medical power of attorney seeing how important it was. He was also a devout Catholic but also had strong beliefs about when to end life support and did not find that contrary to his very conservative religious beliefs.
A year and a half later, my father was admitted to the hospital with pneumonia. But it was no ordinary pneumonia. Several years earlier he survived a bout with bacterial meningitis. It was a medical miracle that he lived though it but it took a great toll on him physically. He was also a diabetic and very susceptible to infection. He had an antibiotic resistant strain of bacterial pneumonia. Before he lost consciousness, he tried several times to pull his own ventilator out and had to be restrained. Again the doctors at Johns Hopkins were not willing to give up. But he was on a ventilator and in a coma in ICU for eight weeks before the doctors would even discuss his wishes or Advance Directives with me.
I was at my father’s bedside every single day of those eight weeks. The doctors finally came to me and told me frankly that there was no more hope and I told them to disconnect his ventilator as I knew this was what he would want. It was hard but I stayed with him the entire time, holding his hand and stroking his head. In the end it was very peaceful and I believe it was as he wanted it to be – he was finally free of his pain and suffering and free to join my mother. While painful it was actually one of the most beautiful and meaningful experiences I’ve ever had, giving him my unconditional love and having the opportunity to say how much I loved him and seeing him off to the next realm. That was July 2nd, 1997.
I am at complete peace with both my parent’s passing and the decisions made on their behalf. I know that all reasonable medical and compassionate means were taken on their behalf but in the end, reason and most of all compassion told us all, medical professionals and family, that it was time to let go. Sometimes letting go goes against our selfish nature but sometimes it is the right and compassionate thing to do.
My ex-husband’s mother was not so compassionately cared for and languished for years, catatonic and on a feeding tube in a nursing home, several in fact because Medicare kept moving her from one abysmal nursing home to another. It was horrible and the conditions were indescribably bleak. She lied in a rigid fetal position for many years kept alive only by artificial means and a feeding tube with no sign of responsiveness or recognition. My ex and his sister constantly argued about what to do, but neither of them ever bothered to visit her. I was the only one who did. I was the one who cared for her before she went to the nursing home, changed her soiled clothes, bed sheets and tried in vain to get her to eat while all she told me about was how much she wanted was “to go home”.
She finally was allowed to go home but my ex and his sister are some 20 years later still arguing about whose responsibility it is to provide her a tombstone but neither of them has ever visited her grave or shown her any remembrance.
This is why it is so very important for everyone to put down in writing their express wishes for end of life care and file a Living Will and Advanced Directives and choose a Power of Attorney for Health Care. Do it now while you are healthy and can make rational decisions and not just leave it for your family to argue about and tear each other apart over later.
I think you and your siblings did exactly the right thing. Why force your mother to live any longer when she was clearly ready to go? She made the decision on her own; she did not want any of you to be put into a position to make a difficult medical decision for her, later on.
Losing a parent is never easy. But you have to look at it from the perspective of an ill, 85 year old person. At that point, most spouses, siblings, friends have died or are close. Most people that age have made peace with death. When they do that, death is not a horrible thing but a peace. It is us, the ones left behind, for whom it is sad.
When my grandmother died, I was glad she lived on her own until just a couple of months before. And I was glad she didn’t go on and on the way she was.
I lost my Dad 2 years ago, at the age of 73. He was hospitalized upstate on a Tues, my sis went to see him Wed and I went Thurs. On the way home, I told my husband “I don’t think he’s going to be with us very much longer and if that’s the case, I want it to be quick. I don’t want him to linger for a year, weak and in pain.” He was gone the next day before noon. Conversely, I watched my mother in law for a couple of years. She was off and on a ventilator, in and out of the hospital and nursing homes (she was only in her 60s), having to be fed and changed and bathed.
I realized then that there are worse things than death. Like being totally dependent on others to even wipe your tush. Urinating in bed in adult diapers when you are aware of it. Being unable to roll over in bed or scratch your nose when it itches. Being helpless and knowing it. Not being able to enjoy sitting on a front porch or take a walk or even sit at a dinner table with your family. My father would have hated -absolutely HATED-not being able to drive or visit or do what he wanted to do when he wanted to do it. To be dependent and have to have us drive him somewhere or change his diapers or be put in a nursing home if needed. And as much as I would have done whatever needed to be done, I would have hated to see him like that. I am so glad he went quickly, the way he did, that he didn’t go the way my mother in law did, lingeringly and in pain.
To lose independence, to be in pain, is hard. Your mother knew it was time. She had 85 years, a goodly amount of time and she was ready. It’s the ones left behind that want to say “I wanted more time!” But that’s just the selfish part of us. Part of loving is knowing when to let go.
Death from natural causes frequently, at the end, takes away all desire for any food or water. Not starvation, just imminent death.
Vegetative state is not the same; you did a wonderful thing for your mom, letting her die naturally at home, the way she wanted. I commend you...
our mother quit eating. i don’t know whether it was physical illness or depression. her albumin levels got so low that the doctor said she would be dead in a couple of weeks or we could put a feeding tube in her stomach and she might last a few months. she didn’t want the feeding tube but we talked her into it. we put her in an assisted living center. she had been in a retirment village which didn’t have a lot of assistance available. i went over two/three times per day to pour the nutrient into the tube. she pulled it out herself after a few weeks and insisted on moving “back home.” by that time her retirement village had people who would bring her food and check on her. we got her set up with a visiting nurse and eventually with a couple of visiting hospice volunteers. she was on a lot of meds including anti depressents. all total, she lived about another year and from my own selfish point of view, it was a good year and i think she was okay with it too. at the end, the organ which failed was her skin and we had to keep her on a lot of morphine to ease her passage. i have wondered whether the morphine eased her passage too much but probably not. death is messy. that last year is something i feel she gave me but it also caused a rift between me and my brother and his wife who is s nurse. the sister in law wanted to be in charge but didn’t want to do any of the heavy lifting. she even at the end wanted to arrange the funeral. odd.
Your mom was 85 which is above the national average. She was not simply a young person with disabilities like Terri Schiavo. If your mom decided not to eat, she made that decision not to cause harm but because she was so ill.
And, of course you all miss her very much. My mom on the other hand, kept eating and drinking but she refused to read magazines at all and it took a lot of coaxing so she would listen to cds.
All seniors are different but it seems they want to make their own decisions whatever those are.
She drank water. Good for her. Your family can visit www.terrisfight.org. It is a great resource.
I think you and your siblings respected your mother’s wishes and thus absolutely did the right thing. It’s not selfish to want to spend more years with your mom, but it would have been selfish to force her to do it!
God bless you and yours! GG