I've been reading many of these stories and it's really sad that medical science has progressed and found so many ways to prolong life beyond the normal expectancy without considering the quality of that life.
My Son knows what I have been going through with my Mother and he says to me "My God , I hope you are not like that when you get old. "
It seems cruel to be still living when you are not able to care for yourself. And for some that are not even able to enjoy doing little crafts and leisurely things, how boring that must be, day after day. Just waiting and waiting and knowing you are tormenting your loved ones.
What were they thinking?
Are we seeing many cases where Children become too old to take care of their Parents?
"Medical science" is a combination of many disciplines. They are not colluding with each other to create a dilemma. The human body is very complex...the brain especially. We are living longer because of the blessings of cured diseases, better diets, fewer wars, more knowledge and yes, the help of medical sciences.
Anyone concerned about outliving their desired qualify of life needs today and fill out a Living Will and give copies to your doctors and loved ones. This way, if your mouth or mind can no longer speak for you, the Living Will gives instructions on how much or little medical intervention you wish to have and your doctor, LOs and legal representatives are legally bound to follow it. That's as much as you can do short of planning and carrying out your own exit.
Do caregivers get too old to care for their parents? Yes and often the stress of trying to do it themselves takes a terrible toll on their own bodies and they die before their charges. This is partly what facilities are for -- to prevent this from happening. Those wishing to care for parents hands-on and in their homes until the end often can't imagine how intense it will eventually be on their own bodies, minds, wallets and psyche. So the available solution is to accept the role of facilities until medical science can fix broken minds as well as bodies. Never make your children promise to never transition you into a facility. Be very careful about planting your flag to "never" transition your LO into a facility. Also, I hope your son understands that HE may be the one who "is like that" as he ages but medical science might have a solution by then. One can only hope.
I think that is one of many problems in this country, and that is we just don't value human life. Who are we to say that just because a person at any age, who can't care or do for themselves, is not worth being here? Shame on anyone who feels that way.
My husband was completely bedridden in the last 22 months of his life, and was totally dependent on me to do everything for him. He was under hospice care, so I did get some help there, and I also had to hire an aide to come every morning to put him on the toilet for me, but other than that it was me there 24/7. Would he have rather been able to go and do things himself? Of course he would have, but he made the best of his situation, and we had a lot of sweet moments while he was in his hospital bed in our living room, that I wouldn't trade for the world. He was only 72 years young when he died on Sept.14th.
Another story that comes to my mind, is when I was volunteering for hospice years ago, and one of my patients Mary, who had alzheimer's and lived in a nursing home, and didn't even know she was in the world, loved to smile and say hello to everyone. One day when I was outside with her in the front of the facility(as I often took her outside in her wheelchair for a walk), she was saying hello to everyone walking by, a lady came up to me and asked if she was my mother. I told her no, but wished she were, and she proceeded to tell me how much Mary's sweet smile and friendly hello meant to her, as she came to visit her father every day who had had a stroke and wasn't doing very well. She said that she came to look forward to seeing Mary, as it made her feel better and lifted her spirits. Who knew that even though Mary had no clue what she was doing, God was still using her to brighten the days of those around her. That day changed my perspective on those who suffer with any type of mental decline profoundly.
So while the world might look at these folks as if they are no longer "useful", God can still and does use them in mighty ways. You just have to open your eyes and look for it.
You make sure that you do not have to depend on your children to care for you.
You willingly enter Assisted Living if necessary.
You willingly hire or let people come in to care for you if you remain at home.
You SPEND the money that you have saved for YOUR care, don't worry about leaving a legacy while the family grumbles about changing you, cleaning you.
You make decisions NOW about what measures you want taken if and when a situation arises.
YOU make the decision that you will not pursue treatment that will extend your life but not extend the quality of your life. Why have quantity and not quality?
These are decisions you make now when you're healthy and able to make them and you make sure the family knows what your wishes are.
Science is great but as my daughter says "we are living passed our expiration date". Our bodies and minds wear out.
We need to change our way of thinking. I think early TV romanticized caring for a parent. You saw a happy family enjoying having grands living with them. Yes Dad may need some help getting out of a chair. If there is some senility that was shown grandmom/dad sitting in their rocker quietly watching TV or looking at a wall. Never showing that this person gets paranoid and agitated. That they need to be cared for like a child. What the stress does to the family as a whole.
We can plan all we want but then there is something called life. You can lose that money you invested. Stocks can plummet. A spouse dies leaving the remaining spouse in debt. Illness can eat thru savings. And all you have is family. And you hope that they love you enough to find some solution for you. Doesn't mean they need to physically care for you but make sure you are safe, fed and cared for.
Many people never question the medications prescribed by their doctors. People with diabetes type 2 would be far better off losing weight than becoming dependent on insulin; their knees and hips would also thank them. The movement surrounding "fat shaming" is drowning out taking personal responsibility for one's health. Hypertension is another disease that is usually self inflicted. Rather than cut back on the salt shaker, doctors write a script for blood pressure medication. Same goes for high cholesterol, gout, etc.
Most chronic diseases are lifestyle diseases. The medications enable people to continue on with their lifestyle by popping a pill. And we are starting to see the longterm side effects of many of these medications and they aren't pretty. And I think that's one of the things your question is getting at and, in my opinion, too often no, it was not thought out.
Palliative care is becoming more prominent, and I have great hope in that. People in America are going to have to be more willing to talk about death, about their wishes, and get them written out. I myself have made clear there will be no dialysis, and nutrition once I cannot swallow, and etc.
But palliative care remains RARE. When my bro was in Desert Regional, a huge teaching hospital in Palm Springs, I was shocked to learn palliative care is non existant, and THAT when the resident calling me was taking that as her specialty.
Sadly when there is money to be made, THAT also figures into the equation. A senior I know in FL is currently being treated as something of a "cash cow" in my mind. Everyone trying to get a piece of her on her way out. It can happen when there is no one who can advocate for you, or when the advocate doesn't know your wishes.
This woman is in end stage renal failure and goes to dialysis 3xs a week for 6 hours per.
She has COPD from years of smoking. Her liver is shot from years of abusing alcohol. She's mean and awful to be with, and I was shocked to find she is only 70!! I would have pegged her at 85, minimally. She hates me, so if by chance I am at mother's when Wanda shows up I leave, immediately, b/c she hates all us kids--as we do not appreciate our 'angel mother'.
WHY this person is still alive is a testament to the tenacity of one person wanting to keep on living. She still drives, but YB won't allow mother out of the house, so that's a non starter.
Mother is 90--and looks 100. She is in OK health, all things considered. But, she has outlived her 'sell by date' many times over. She's not happy, but she's content enough. The women in my family live for-freaking-ever. Most are in good shape and lived independently, mother needs 24/7 care...has for years and years.
My SIL is a dr and his take is that far too many people take the invasive, expensive and ultimately NOT quality life treatments. Yet, as a Dr. if a patient wants to undergo surgery for something that may buy them 6 months, he says most people go for the procedure. Even knowing they will be 'sick' for that whole 6 months.
Mom has burned us all out. esp YB, with whom she lives. Going on 23 years now. He regrets it tremendously, yet it was the decision mom and dad and YB made and he thought it would be 10 years, at the most, mother's health is pretty fragile.
One thing about having cancer last year: I will NOT treat it again, so when it comes back, and it will, I am going to go gently into that goodnight and not put myself and my family through all that yuck again. There's something very freeing about knowing I will not likely live to 90, probably only 80 or so...and that's FINE.
It is the Doctors. It is Medical School.
Doctors do not want to "admit failure"
To tell a patient that there really is not much more that they can do, they forge ahead. The quest for the Unicorn, a cure for whatever is not curable. (this is different than researchers that are the ones that search, and I suppose they need patients willing to be the pioneers)
Telling a patient that "There is nothing more we can do" is probably the last thing taught in Medical School.
There are rotations for almost all aspects of medicine BUT is there a Hospice rotation? I think if doctors were aware of the dedication of Hospice staff and what is done while a patient is on Hospice there might be more doctors willing to suggest Hospice BEFORE they have pushed for "just another round of chemo, just one more trial". Some medical schools may be introducing Hospice but also teaching doctors to discuss with patients End of Life Decisions is important. Several years ago Medicare added this and doctors can bill for the discussion but how many of them actually have a CONVERSATION with a patient before it comes time to make such decisions.
The only conversation I got about EOL decisions was when I signed admitting my Husband to Hospice.
I did have a POLST for him prior to Hospice but when he had to have surgery they told me that the POLST is "suspended" while he is having surgery.
I am going to step down from my soapbox now and make a cup of tea.
I know where I stand. I think it is cruel and ghoulish to keep a failing body alive as long as possible. Let me tell you what can happen: constant excrutiating pain, deteriorating skin that tears at the slightest bump and develops sores that don't heal, bones breaking just from standing up, loss of motor function, difficulty eating and drinking, with the constant risk of aspiration, lack of bladder and bowel control, chronic bladder and other infections requiring strong antbiotis that have terrible side effects .....on an emotional level it can be even more horrible, Debilitating fear, desperation and anxiety that permeates every waking day. Not to mention the confusion they have around why they are not getting better. After all they are undergoing constant medical attention.
I say these things because every one of them is what my Mom has been experiencing for far too long. I just thank God, the decision to put her on hospice was just made and the focus will be on her comfort.
I'm sure even for the doctors who don't consider death the "worst harm", it's a constant tightrope walk. I'm sure it's an unusual occurrence to have all family members on the "same page" so to speak; add in the constant barrage of T.V. commercials advertising lawsuits against the medical profession, it probably often feels like a "damned if you do, damned if you don't" situation.
Even here, every so often, you see a post talking about how hospice "killed" their loved one. I'm not diminishing anyone's feelings about hospice, but imagine you're the doctor who recommended hospice, and now you are faced with an accusation like that hurled at you. I can understand their reluctance.
As we advise so often - it is on you, as the potential patient, to make it clear to your loved ones what your wishes are. And have the conversation every so often - as people grow older, often we change our minds about what sort of care we would/wouldn't want. If you make your living will/EOL instructions in your fifties, revisit them again in your sixties, seventies, etc. This way, hopefully we mitigate the guilt your LO's might feel when these decisions have to be made, especially if we're in no condition to be able to verbalize them.
I have also run into doctors that I seriously cannot believe didn't get expelled from med school.
You know what they call the person who graduated last in their Med School class?
Doctor.
Think about that.
We had a PCP whom we absolutely LOVED. I mean, my kids would fake sick so they could go see him. He was in practice with a Dr that absolutely nobody liked, a man so angry and cruel--he actually told me to shoot myself in the head before I thought about calling him AGAIN about my struggles with finding an antidepressant that would work. Of course, it was the BELOVED Dr. who developed a glioblastoma and was dead in 6 months. I have never had a doctor who has even come close to this amazing man.
We need to remember that doctors work for US and we can fire them if needs be. I have done so. I have also ripped into a few lousy doctors in my day. And baked cookies and thanked the ones who CARED and for whom medicine was a calling, not just a way to make money.
As I watch my SIL begin to navigate the waters of 'real medicine' (he just barely finished 14 years of training!) I see the compassion and extra care he gives each and every patient. He also takes time to ask about DH and me--he doesn't need to, he just does.
And he DID have a 'rotation' of sorts about Hospice care, since many of his patients are terminal, he had to learn how to handle that. He is the one who will be there for me when the time comes.
Just as there are bad mechanics or grocery clerks or house painters, there are bad Drs. You FIRE them if they aren't your advocate. I realize not everyone has the ability to be super choosy about Drs., but I tell you, when my Dh had his liver transplant 14 years ago--we were darn sure we had the BEST surgeon in the valley. He was not 'in plan' and we didn't care. Cost us a lot more--but what he did for my DH was nothing short of a miracle.
As far as EOL--do as much as you can to pre-plan. Let your family know what you want and pray that they'll do what you ask for--drs will continue life saving care as long as the patient wants it. Their hands are tied. This is OUR decision, so let's make it before it's needed and spare everyone the drama.
Yes, people in their 60's and 70's, sometimes even their 80's, are taking care of elderly parents, and for some it's a terrible hardship physically as well as emotionally. This further reduces the number of adult children available, as the children become disabled or die themselves. My mother had her children quite young, and my oldest sister died two years before my mother did. My other older sister was a caregiver to her disabled husband, and he also died several years before my mother. In other families, adult children who themselves can hardly walk due to arthritis or other ailments are tasked with lifting an elderly parent up, maneuvering them in and out of vehicles, pushing wheelchairs up ramps and over doorsills, etc.
No, no thought was given. And no thought is ever given to the plight of caregivers except by those of us who are there or have been there.
Many elderly people do want to die with dignity. Their best days are long behind them. The caregivers want them to be at peace with no more pain, depression and anxiety.
It seems like it’s a never ending nightmare at times.
Personally, I think every state should be in favor of assisted suicide. It seems very sensible and humane to me. I know that it’s controversial and has to be properly analyzed for every individual circumstance. It seems to work in areas that it is appropriate and approved.
I think that I would choose this route if there was absolutely no hope. Why continue to suffer and burden others with grief of the inevitable?
Just my thoughts. You don’t have to agree with me.
I think it's so important that children have clear instructions from their elders and that they explain to their parents how important that they be realistic about their expectations of how their lives might end up if they allow debilitating conditions to be continuously treated with no end in sight. I don't think anyone wants to just exist.
I was able to help my mom cause I was in my early fifties during her last years but I could not imagine still taking care of someone if I were in my late sixties, early seventies or even older.
My mother's Medicare insurance agent, whom I know personally, said when we met a year ago that when you relinquish your loved one to institutional care, they will not allow your loved one to die under their watch. Too much litigation. The DNR exists to make the family feel good, but the institution will ALWAYS opt for resuscitation or death.
At the same time, I suggest your comments also describe newborn babies to early toddlerhood, yet rarely would we consider them a burden.
I care for my elderly father who has dementia. I wouldn’t choose this unpleasant life. My Dad is difficult, stubborn, angry, etc. As much as I hate the task, it’s what God has called me too.
Anyway, this article is worth a read:
In the UK’s health system, rationing isn’t a dirty word
https://www.vox.com/2020/1/28/21074386/health-care-rationing-britain-nhs-nice-medicare-for-all
From the article:
"What sets NICE (National Institute for Care Excellence) apart is that it makes its judgments explicit. The organization uses a measure called quality-adjusted life years, or QALYs, to make its recommendations. One year in excellent health equals one QALY. As health declines, so does the QALY measurement. The difference between being alive and dead is, on this measure, easy to express: Death represents the end of QALYs, a zero stretching out into infinitude. But ill health is trickier to measure. NICE uses questionnaires measuring people’s pain levels, mood, daily activity, limitations, and so on to arrive at rough estimates."
I often think keeping people alive longer no matter what is not what is best, but who is to know what their future will be? And the medical establishment (and other people who should mind their business) is geared to treat everything aggressively.
The thing is, we can all sign a paper to not be resuscitated or kept alive by artificial machines.
So, it's really a choice, if you want to live longer or not.
It should always be the person's individual choice.
A hysterectomy in her 90’s! Wow! Interesting.
You’re right about no quality of life left. It’s so sad.
There is talk about extending the life expectancy to at least 100 through new medical advances. What's the point? Our telomere shortening rate would say that most humans were never meant to live beyond age 80. Should we really be tinkering with this process?
Not to wane philosophical, but there is Psalm 90, verse 10, that states that the lifespan of a man is 70 years, 80 years if he is strong. (paraphrased) The Psalms were written at least 3000 years ago. Even way back then, the author recognized that the human lifespan was, roughly, 70-80 years. Unless a person has exceptional genetics, it is only medical science that has pushed that number higher.
As a result, we have many "adult children" in their 70s taking care of parents in their 90s. This seems so unfair to those children who are now elderly themselves.
Quality of life, or lack thereof, it a huge issue. It is for this reason that suicide among seniors is a growing trend.
I noticed on the birthday section of The Today Show yesterday, all but one person was 100! One person was 104!
One old lady said the key to living a long life was to be classy and sassy! LOL Kind of describes my mom!
My mother hasn't had a whole lot of medical issues during her lifetime. She has taken BP meds for a long time, could have had her hearing problem fixed surgically long ago, but chose hearing aids instead (the condition eventually leads to total hearing loss.) Despite dementia, I kept her Mac Deg treatments going until last month, stopped only because she had a stroke. With the hearing loss, the goal was to preserve her eyesight, as she likes to read (doesn't retain a lot, but likes it!)
My mother was okay until her early 90's when she developed dementia. We had done all the legal stuff years before, when dad wasn't well. The paperwork included many pages of what to do scenarios for medical intervention. I don't know why, but these were not included in the "package" we got. I DO know neither wanted extraordinary medical treatment, i.e. feeding tubes, ventilators, etc, and so we have a DNR in place. The ONLY medical treatment I opted for is for keeping her comfortable and pain free. Otherwise, nature takes it own course.
She's just finishing year 4 in MC. I am one of those "seniors" who needs to see to mom's care. I knew I couldn't do it myself, and she has plenty of funds to pay for a nice place. My bros would NOT be a good choice to provide for her care, so I found the best place for her and oversee her finances and care.
My point is it isn't always medical intervention that leads to longer life. Sure, some treatment may have helped one "over the hump" many years ago and now they have little or no QOL, but should we not even try? Again, we have NO way to know who is going to develop cognitive issues or other medical nightmares, so how can we deny treatment to prevent early death or disability? There are plenty of people in their 90s and even 100s that are still active and aware. It isn't always medical intervention, but rather having a safer and healthier way of life and possibly very good genes! The one thing I would dread myself is ending up like my mother, losing memories and living life years ago. I've already told my kids to find a nice place and ensure I am cared for, but as for extensive life saving methods? No. Same as for my mother. She had that stroke recently, so likely it's a matter of time now, but she had a full long life and I wouldn't want to put her through extreme measures to continue her existence. As said in Jurassic park, life finds a way. If we can treat something and improve quality and length of life, go for it. My dad had heart valve issues and an aortic aneurysm, both fixed when he was in his 50s. They were able to fix that (without treatment he would likely just drop dead!) and went on to enjoy a full life! His valve lasted 20 YEARS (usual is 10) and he had that redone. It gave him many more years of QUALITY life. They had a GREAT retirement together. Why would we not want treatment then? Eventually he did develop cognitive issues, but no extensive treatment at that point. He still lasted a few more years.
I can only hope for a meteor to hit my house before I go down that dementia path... Otherwise, to infinity and beyond!!! BTW, I am one of those relatively healthy people, haven't been sick in decades, have never been out "sick" for more than a day, take no medications (Vit D3 OTC) and as far as we know have no medical issues. Potential for even longer life than mom!