Did Medical Science really think this one out?

My husband, a once virile and active man is now in a nursing home suffering from dementia etc. etc. He is 87 and suffering terribly, not eating, being combative, biting and kicking. We were locked out from seeing him for 6 months due to the virus so we hadn't seen him for a long long time and I am sure he felt that we had deserted him. I am 85 myself, and no longer able to take care of him, sadly. I am happy that the doctors have been able to prolong life, and if that is your wish to live longer so be it, but personally I myself do not wish to live beyond my normal predictable years. I THINK THE QUALITY OF LIFE IS MORE IMPORTANT THAN LENGTH .

Lockett- I don't know that "euthanasia" needs to be practiced so much as just humanely declining to treat some conditions. We have come to think that any condition apart from "normal" needs to be "treated". What if we failed to treat hypertension (high blood pressure) in some people of very advanced age? When the effects of aging make everyday life difficult and unpleasant, do we still need to go all out to prevent death at all cost? If a severely disabled stroke patient gets an infection, does he really need a course of antibiotics? I know the idea of withholding treatment sounds unpalatable, even unthinkable and cruel. Yet it has been wisely said that "pneumonia is the old peoples friend".

The Hippocratic oath, sworn to by all physicians, requires that they "do no harm". Thus they are conditioned to jump in when any abnormal medical condition exists. But, as I see it, death (in the elderly) is a natural process...just as natural as birth.

This discussion highlights the importance of creating an Advance Directive when you are young and healthy, and then reviewing and updating it at least once a decade. Medical Science has come a very long way since the days when people mostly died at home surrounded by loved ones. If that is your wish, state it in your AD. If you would not want to be kept alive if you should reach a point where you cannot speak for yourself and are unlikely to recover your ability to do so, put that in your AD also. You can say that if you ever reach that time you would not want CPR or to be put on a ventilator, although you may want them in your current state of health and as long as your are likely to recover. Say what recovery means to you. Does it mean being fully independent, both mentally and physically? Is dependence on others ok, and to what extent?

You can also say that in the future, if you are not able to make decisions for yourself, you would not want to treat any life-limiting illness like cancer, or to be hospitalized for a surgery, or even to treat infections with IV antibiotics (which require hospitalization). You can say that you wouldn't want to be tube fed indefinitely, or to start dialysis. If you do not want CPR/Ventilation or any other "extreme" measures, you should have a POLST/MOLST form (Provider/Medical Order for Life Sustaining Treatment). This is an out-of-hospital DNR form that first responders will follow. Most states have this type of form; in California it is the POLST, https://capolst.org/. You will always get care, but with a POLST the care will be focused on comfort and quality of life, not using every medical treatment available.

Talk to your family and friends about what you want. Also your physician. Make sure everyone has copies of your Advance Directive document. Give them an opportunity to ask questions. This will allow them to support you when the time comes and you are much more likely to get the care that you want.

Deardarla, I'm sorry you are going through this with your mother. If she is no longer able to create an Advance Directive, at least talk with your son about what both of you think your mom would want. It helps if family and loved ones are all on the same page. Engage her physician in the conversation, and continue to advocate for what you think is in her best interest. And, be sure you have an AD for yourself!

I am 65 and my husband is 70. We are very healthy, and currently take no life-prolonging drugs (no blood pressure meds, cholesterol meds, etc.). We have this discussion all the time: What will we say when our doctors recommend this or that drug, for our "health." We want to live as long and in as good health as we can, but at what point do you say "No more drugs, no more tests, no more anything." My mother is 94 years old, her body is amazingly healthy (due to surgeries and drugs) and she is slowly losing more and more of her mental health---particularly now. These are the hard questions all of us in the wealthier societies must ask ourselves, particularly as we get old along with our parents.

I have the same feelings. I am sad that my decades of good memories of my in-laws are culminating in what I am seeing the last couple of years. And I wish my children could retain only the "good" memories. But I suppose this is giving us good fodder for discussions about when and if my husband and I are so dependent. It's heartbreaking. My mother died very easily (in retrospect) of A-fib, and I am so relieved for her that she did.

"mukilteomolly,"

I think you're new to the forum. I sent you a private message last night which you can find by clicking on your "M" avatar and either click on your "news feed" or by clicking on your "profile" page.

I have often thought about what you put into words. Good topic for discussion

I struggle with this as well. My dad is 88 and for the last few years he has said many times that he wished he would just pass and that he is the oldest person he has ever know. He has arthritis in his back, prostate cancer that the doctors said his age would kill him before the cancer would and is living in the veteran's home with my mom and is taking care of her. He is ready to go but I doubt it will happen anytime soon. My mom's mind has been kidnapped by dementia for the last 2 years and her life is miserable because of the hallucinations and delusions. She has not had a happy day for a long time. My mom got so bad that we had to come to the realization that we were incapable of caring for her. Now she is becoming violent toward the staff and is always mad at my dad. I hate that their last few years are like this.

There are so many stipulations these days.

I have a friend that tired of being a prosecuting attorney so he switched over to doing malpractice suits. He is making a fortune!

I think this is just another of the problems of our modern society . OK, not helpful, I know... but maybe worth providing some perspective.

When the extended family lived in close proximity, mom and dad could live with grown children when they had trouble cooking for themselves or doing home maintenance. They were built-in babysitters and odd job performers, but still viable (if sometimes difficult) members of the family and even the community. Children learned to tolerate and perhaps even enjoy, the ways of "old people". When needed, siblings or cousins, older children or neighbors could pitch in if mom and dad needed more care/supervision. The infirmities of age were familiar and expected. The burden may have been quite weary-some at times, but elders did not linger indefinitely in poor health. They did not take life- prolonging drugs. And the family physician did not take heroic measures to preserve their lives. It never occurred to anyone that they had "choices" about dying. They just "went" when it was "their time". That's what I want.

I agree 100%. The question of why we have to endure all the down sides of aging
--being un able to care for oneself, being a burden to love ones, and tolerating so much discomfort--is hard for me to understand.

We come into the world requiring assistance and we leave this world requiring assistance. I don't think that modern medicine is trying to prevent death at all but more that they are trying to improve quality of life for as long as possible. There's a difference. The decision to accept intervention/treatment is a personal one, and I really don't even like the basic thread of this discussion because it is ethically disturbing. Since most people don't die a quick death like a sudden fatal heart attack, the reality is whether we are 50 or 90, that treatments must be considered along the way. We do not have a crystal ball to know when a treatment won't work because it comes up against the aging factor. That factor is very elastic. There are many younger people who can't hold a candle intellectually to older folks. I believe that socialized medicine will take people's choices away. We are already to some degree in that space. I fought unsuccessfully for my dad to have a test (it was expensive) believing that having a proper diagnosis would provide insight to better palliative care if nothing else. (He had a lesion on his brain that due to other conditions prevented a biopsy and no known cancer) How in the world does a patient at any age move forward to either choose treatment or come to terms with a terminal condition when they can't even be tested and therefore diagnosed? My point is there are pencil-pushers who are happy to oblige you and take your choices away and it is happening now. My dad served in WWII, raised a family, and dedicated 47 years of service in public health (elected and unpaid) finishing that stint at the age of 86. He deserved the test, and he deserved any treatment he might choose. On the other hand, we do need to prepare and revise our decisions regarding care. One could argue that we in our culture don't pay enough attention to understanding the last part of life and that we need to do better with that. There needs to be better counseling regarding the effects and trajectory of any illness with options for palliative care and hospice. But the sanctity of life must always be honored even when the going gets tough.

Many years ago my MIL’s doctor said she had the heart of a 20 year old I immediately felt dread as she was in her late 80’s and already starting to fail in other ways. It’s been a hard road and now she’s 91 and waiting for placement in a nursing home. Right now she’s in rehab and needs help doing everything. Many fractures and UTI’s later I’m still haunted by the thought of her 20 year old heart. Definitely unfair when everything else breaks down but the heart keeps on pumping.

Imho, it is true that sometimes elders are now taking care of elders, i.e. because the parent has lived to a "ripe old age" and therefore the adult child of same are up there in age themselves. It was in my case. In regard to medical science, they are trained to extend life UNLESS the elder has a DNR in place. Scientists don't say something akin to I'd best not do a good job on extending life measures, else the child OR parent complains. They are in the business of modern medicine.

I agree. My mother had a heart valve replacement at age 91. I asked the drs if it SHOULD be done, they all assured me that yes, it was possible. Without it they estimate mom might live another 2 years. She wanted to do it in spite of my misgivings. Yes, it COULD be done but SHOULD it?

Well 2 years later her heart is beating fine but her mental state is awful. She is in Memory Care and rarely recognizes her own children but by golly her heart is fine! So we sit and watch for her money run out while the doctors chalk up her surgery as a success because she survived it.

I love my mother but I know this is not what she expected her old age to be like.

I clearly understand what you are saying and used to think the same way. Now I am more conflicted. My 95 year-old friend with dementia (recently deceased) went through a period of frequent unhappiness. But intermixed with the unhappiness were periods of contentment and joy. The last few months of life were especially good. That experience has caused me to rethink my conclusion that life with dementia is not worth living.

Please don't say "tormenting your loved ones." There are other ways, even when our elderly loved ones are incapable of caring for themselves. My 97-year old mother was kind to me and chose to live in a continuous care senior residence when my father passed and she was 89 years old and still capable of taking care of herself. She never wanted to be a burden on me, and she wanted me to have a life. She began in the independent living section of her senior residence, and they helped her move to assisted living (memory care) when she needed it. At that point the transition was difficult because she was not aware how much she was declining. Now, the decline is so great that she is hardly aware of anything. She needs assistance with everything from going to the bathroom, to taking a shower, to eating and she cannot walk any longer. At this point it "takes a village" to care for her. I also am a senior citizen and my husband is too. The senior residence is excellent, so while I cannot visit as often as I would like to due to covid restrictions, at least I don't worry about her safety and care. Physically she is quite healthy for her age, and thankfully she is not in pain, but she has very little of her mind left. Seeing what she is going through, I think this is the best option for those who can afford it and who want to be independent. Medical directives in a living will are the best way to let people know what your wishes are. The usual directives are whether you want heroic measures to be taken or not (feeding tubes, ventilators, resusitation, etc.) You have the option of not having them. I was speaking with one aide at my mother's place who said that she changed her medical directives to include "no hand feeding" if she was not able to feed herself. I was speaking with a doctor who said that if he ever is not capable of caring for himself, if he gets sick not to treat him. These are extreme positions, and I think the instructions would be difficult for the loved ones to follow, but I understand them. The other option is home care, but that places more of a burden on loved ones, in my opionion, because you have to watch over the caregiver(s) more carefully.

They were not thinking of anything but prolonging life. That is what they trained for. And that, in itself, is a big enough task.
They may come up, incidentally, with some ways to make health care easier or less uncomfortable. And some doctors are more sensitive than others to inevitable challenges of aging. But doctors are not God (although some might consider themselves His equal). Generally, improving the QUALITY of life is something medical experts leave to others.

Dragonflower paraphrased Psalm 90:10 "the lifespan of a man is 70 years, 80 years if he is strong". But in the book of Genesis God caps it at 120 years.

"My spirit shall not abide in man for ever, for he is flesh; his days shall be a hundred and twenty years." (Gen. 6:3)

Wow, just read all of your responses, and I have to say I have mixed feelings in regards to my loved ones seeking to end their lives before God takes them naturally. But, at the same time I find myself not wanting to be that burden or subjected to life without quality; I know, hypocritical. My mother, not one hour ago, was exhausted and exasperated trying to do things for herself and stated that she wished she’d just die. She is 85 and survived a stroke in May 2017. The stroke did not affect her physically but definitely cognitively. She can barely get a sentence out because she can’t find her words, and her short and long-term memory is terrible. She has COPD, Asthma, macular degeneration, has had surgery twice to repair her ears, but still wears hearings aids, scoliosis and numerous other issues. But, she can still care for herself in most ways. I’ve lived with her for 3 years now, I’m 62 and took care of my husband at home for 13 years before putting him in a nursing home because it was just more than I could manage physically and mentally (he had two major strokes in 2004). I’m healthcare surrogate for both as well as POA. My husband has a DNR and mom’s legal documents state that she doesn’t want to be kept alive by artificial breathing or a feeding tube. The biggest issue is that most of us that would wish to end our lives, will not be in a mental state to competently realize we are at that point by then. So, we must make our wishes known ahead of time in our legal documents. I too agree that in many cases people are kept alive past the time of any quality of life.

I wonder at the isolation rules in long term care facilities because of covid. The dear old people would rather die holding a loved ones hand than being kept alive in total isolation! It’s insanity in my view.

As a retired RN, I completely agree with you. After caring for 5 of my loved ones and they had been informed of the possible outcome, the ones that chose to not to DNR, was the most painful experience to endure.

I believe in my heart and soul that old people, with all of their endless physical and mental problems, from which there is no cure or getting better, don't have the option (if that is/was their choice from when they were able to think and act normally) to be allowed to die in peace - now - vs. being kept alive with caretakers and drugs and such. Humane euthanasia should be allowed if all aspects have been considered. It is diabolically sadistic to keep people alive if they don't want to live or are extreme burdens to themselves and to others. It is time the laws permit this

My own mother is on hospice for over a year and a half now. She was put on hospice for end stage chf. But in the meantime, her pace maker battery has reached the 10 yr limit (it’s almost 11 yrs old), She doesn’t want a replacement. She also has invasive squamous cell carcinoma which still requires multiple MOH’s surgery every 3 -6 months, and she now has inflammatory breast cancer in her left breast. It has invaded her lymph system. She is out-living her skin. But she is still managing in her own home. Her chf has gotten worse, but she started off in stage 3 - 4 over a year and a half ago. I am not involved with her care every day, but I do see her a few times a week. She is still of sound mind. Because she is declining, hospice remains involved. My mother is still very involved in life. One has to wonder how she does it. I was diagnosed with non-Hodgkin’s lymphoma 4 yrs ago. I had to step back my caretaking with her, but she stepped up all her own self-care because of this. She is exhausted with it all some days, but she keeps on trucking. I always wonder if she will be the longest patient on hospice they’ve had. She is 94 yrs old.

My 98 yr old mom has said many times in the past several years, “I don’t know why I’m still around.” My sister (a retired nurse) came up with a great response. She said, “You are keeping people employed.” The other day, when I told Mom that, she said, “That’s right!” I think it made her feel good to be helping all the people in the AL that help her!

My mother, who had many times expressed to me and my 5 siblings that in the event of her imminent death, she be allowed to go. When, at age 76, she became comatose and went into respiratory distress, my baby sister and I were the only ones at the hospital. When the nurse approached us, seeking permission to place Mama on a respirator, I turned to my sister -- who had medical POA -- and reminded her of Mama's feelings on the subject; nonetheless, my sister gave in to the very insistent nurse and allowed medical science to "save" our mother. But Mama herself reiterated her wishes when she emerged from her coma. It seems she had a "near death" experience where she saw her deceased loved ones, was ecstatic to be with them, but knew when no one would speak to her that she had to come back. She lived 7 more years in diapers, a wheelchair, and a hospital bed, with constant diarrhea induced by the medication she needed to stay alive. I've never been able to completely reconcile the poor quality of life she endured, and have made certain I have all the necessary legal documentation in place so that my husband and I don't face the same thing when our time comes.

Interesting conversation. My late father felt guilty at the expense of triple bypass surgery at 78 - he’d lived his life and felt the cost to our healthcare system in order to prevent a natural death was questionable from a moral standpoint. He was 100% behind the right-to-die-with-dignity movement. He survived the surgery, but never recovered his stamina. At his death twenty years later, he was legally blind (macular degeneration), hearing impaired, suffered with diabetes and congestive heart failure, was incontinent and bedbound with his daughter tasked with changing his diapers. He was depressed, but remained a gentleman to the end. For most of his remaining two decades, he found purpose for being there for my mom, as she had dementia. He learned to use the computer and wrote volumes, recording his lifetime of memories. He was quite the storyteller and we treasure his written stories! Still, he took me aside one day - a couple years before his long, bed-bound decline and warned me to expect grim news some day: revealing his plan to end it all with a murder-suicide. Guns were never in the home, so he never carried out his plan. I did not affirm his plan, of course - saying something on the order of, “who knows - you could keel over with a heart attack in an hour and so much for this plan”, ie, let nature take its course. But I understood. When my mother died and he was 87, he entered a deep depression from which he never recovered. He had no purpose in living on..he died eighteen months later, a gracious man, though depressed, till the end. Very sad.

It truly depends on your perspective. 30 years ago, I was working as an RN and had people dying of strokes and heart attacks in their fifty's and older with very poor outcomes. Now, we can reverse a lot of the damage to brains and hearts if treated in in the first couple of hours. Back then we called all dementia "senile dementia" and really had no clues about what caused it. Now we know there are 3 basic types of dementia: vascular (result of strokes), Lewy Body (result of Parkinson's disease) and Alzheimer's disease (the most common associated with Tau tangles and Beta amyloid plaques in the brain). Medical science can treat most early dementia with medications and therapy to prolong good mental health in the early stages. Unfortunately, there is not a "cure" - yet - but there are folks doing research that may unlock the keys in the next few years. Look at the fact that there is a vaccine for COVID that is 90% effective - better than all our former vaccines - and will be available soon.

We are facing more cases of dementia in seniors because they are living longer - which seems like an advance in health care, to me.

I have thought many times about how, if an animal is very elderly and is suffering and untreatable, unable to enjoy its life, we end its life and consider it the humane thing to do. But when a human is in the same position, we allow the suffering to continue, or even prolong it. One of these things we are doing wrong.
It breaks my heart to see what my mother’s life is like with her mind gone, and I will not live like that myself. I fully agree with other commenters who have said that they plan to end their lives if they enter dementia. That is not living, it is only existing, and I refuse to put myself or any other family members through that.
A neighbor I am close to is in her 60s and is taking care of both elderly parents, one in her home and the other living alone, while also battling stage 4 cancer herself. I don’t know how she does it.

disgustedtoo - Well said. My mother passed at age 95 this past June. She lived independently and drove until 90. After a fall (my guess several) her PCP recommended home health. Mom tried that and didn't like it, so the next advice was a move to assisted living. Mom lived there for 4.5 years and then because she needed more care than AL offered (or was allowed to do in MA), she went to a nursing home. Even though she had asked for years to go to a nursing home, she had a hard time adjusting. For the last 5 years of her life she lamented about why was she still here. It was not way to live (having to have help with her everyday living).
It was hard on me as the primary caregiver. I just turned 70 and had my own health issues while caring form mom.