We feel every ache and pain, see to every infection, bout of pneumonia, nutrition needs, bathrooming needs, etc., with people who can, sometimes, only be described as extremely difficult to get along with. Every daily need is seen to in an effort to prolong lives that would have already been over without us. So we stretch out the years for them...years spent doing nothing, sometimes in some trance-like state.
I think this may be far too existential a forum for such a question but what is the value of all of this?
"Greater love hath no man than this, that a man lay down his life for his friends." (and loved ones)
I have cared for 4 parents, through 25 plus years of difficult and painful diagnosis and decline, along with my 5 siblings and my husband until their unfortunate deaths, 2 of them on Hospice, One of which was in my home til he passed away (he lived with us his last 13 years as well, through multiple illnesses including Lymphoma) this passed September of Advanced Lung Cancer, and without Hospice, we would have been up a creek, and unable to manage him at home, which was his dying wish. I also worked in direct Health care for over 35 years.
Poll the AC crowds, check out my Profile statistics, I am well respected amongst my friends and peers here on this forum, having participated on here for Many years, garnering incredible amounts of help and community support along the way, You?
Sadly our Caregiving days (for our Parents anyways) are behind us, and if I've learned Anything, it's that God takes people in his own time. Hospice does not set out to euthanize their patients, or else they would be out of business, but are there a few bad apples, probably, as in Every organization, though I've Never come across one, and You Cannot convince me any differently. I'm sure there are other forums you can find like minded people to bat around your theories with, but this is a Caregivers Blog, we are here to help our LO's live a safe and happy life, a Comfortable, and as Pain Free as possible death, with as much dignity as possible, as much as we possible can deliver. Beyond that, it is up to our Maker.
https://www.nytimes.com/1997/06/28/us/passive-euthanasia-in-hospitals-is-the-norm-doctors-say.html
Great article btw, and how would you have it? It is Agonizing to watch someonewho is dying, there are no great answers to seeing it through when your LO is in severe pain. Treat them to the point that they are sleeping most of the time, or allow them to rythe in agony, you decide, or better yet, let them. I for one would rather they be sleeping comfortably.
They are not ready to go and don't want to.
Spiritually, I believe their mission in life is not complete.
Stacey B:
And, I feel equally sorry for you. Obviously you have NOT been following my posts. Yet you post a rude presumptuous comment.
Do you not realize that you come across as very self righteous and egocentric. I will give you the benefit of the doubt though and conclude that perhaps you are just naive and cloistered in your own world.
You apparently read one post in which I asserted, for family members, that there is a point where continuing to treat a patient is more painful than helpful, but mainly my stance is that most hospice facilities simply OVER SEDATE and this may hasten death.
I have written numerous posts on my opposition to this type of behavior.
Also, my point was that some surgeries for very elderly people may actually hasten death. If you read the post you would have noticed that point.
Perhaps you are a good person, but I see the larger world, daily. Obviously you do not.
( Staceyb wrote: "God. I'm sorry for you that you find the elderly so disposable, they are not, it's not up to you or us, it's that simple." )
Stacey obviously you have not been reading very many of my posts. If you have you would know that I do not consider elders disposable...but the opposite. I feel hospice and hospitals consider the elders disposable.
That is why I feel some elders are being doctored to death and over-medicated into a stupor. By doctored to death, I mean, pointless painful surgeries and being given too many medications that have no benefit and sometimes work in opposition to each other causing severe health issues.
Also, if you actually have read all my posts, which you obviously have not, then you would know that my posts state that many hospice facilities do not properly take care of patients. And do nothing to help prolong their life. They simply sedate them and this often hasten death.
That is the antithesis to your posting regarding my thought process.
Please do not falsely claim you have read many of my comments, when obviously you have not, based on your post.
Here are some links for you to ponder and they all advocate keeping a patient alive and comfortable but not in a stupor.
https://www.thedailybeast.com/fbi-texas-hospice-boss-texted-nurses-execution-orders-for-patients
------Here is an excerpt from that link: "On at least four occasions, the affidavit says, Harris instructed nurses to administer overdoses to patients who had “been on the hospice service for too long.” ...
"In one instance, Harris allegedly texted a nurse to dispatch a lingerer “by increasing the patient’s medication dosage to approximately four times the maximum allowed.” -----
Here is another link:
https://www.agingcare.com/discussions/hospice-euthanasia-214230.htm
http://www.hospicepatients.org/euth-acct-three.html
And here is a link to what is being dubbed "managed death" or passive Euthanasia
https://www.nytimes.com/1997/06/28/us/passive-euthanasia-in-hospitals-is-the-norm-doctors-say.html
Yes, Why Do We Try So Hard? Because we Love them, it is that simple. We are tired, we would Love a break or to know All the answers, but Life and Living is not up to us, it is up to God. I'm sorry for you that you find the elderly so disposable, they are not, it's not up to you or us, it's that simple.
With that said, there are many people in there 90s and early 100s, who are still sharp as a tack and may be weak but not ill. Nothing wrong helping those type of people.
Still, I do think that there are too many surgeries for very elderly and ill people that should be refrained from. Not only are they dangerous in that any surgery can introduce infection, internal injury, blood clots, etc, but unless they are known to have a good benefit in general, it probably does little to extend their lives. It may only make them weaker or more disabled.
I once had a vet try to talk me into doing a kidney transplant on an 19 year old cat.
It was difficult to do, but I decided it was not in my cat's best interest to go through the ordeal of a kidney transplant with anti-rejection drugs, etc, at 19 years of age.
Still, the veterinary hospital actually tried to lay a guilt trip on me about refusing.
Just thought I would share that story about over doctoring a pet because, IMO, the same applies to humans.
A woman in mom's MC place turned 100 in December 2017 and has way more on the ball that my mother and many of the other residents much younger than her!
There sometimes comes a time when going the extra mile medically does not make sense. Although my parent's had medical directives, etc, the hospital, without mom's agreement, put a feeding tube on dad. When she found out she had them remove it. It really was not going to help him at that point, except to keep his body going.
Major surgery for someone who has a terminal illness and very little time left? Probably not. I had to make that decision for my 19+ yo cat - they recommended against attempting a biopsy of lung masses due to their position, yet suggested surgically obtaining the sample. Huh? You would put her through major surgery just to sample this but cannot do the same with a needle and all your expensive imaging machines? She is still able to take care of herself, eats, drinks, uses the litter box and enjoys lying in my lap, lounging around, sitting in the sun or high up on a cat tree. Given previous weight loss due to her thyroid, slowly encroaching CKD and the masses, I will be lucky to see her reach 20 (she's been with us 19+ years!) I went to the "experts" hoping for some palliative care I could provide. For almost $700 I got a repeat of tests my vet had just done the month before AND a report that virtually is no different than what my vet provided. NO palliative care suggested, because they don't know what kind of masses they are. Jerks!
Anyway, for those who have the possibility of longer good quality life if they get medical treatment needed? Absolutely. We don't know if dementia is in our future and it would be foolish to throw away a medical gift to make life better, even if it is only a few years before dementia comes knocking. For many those first few years can still be enjoyable and not too much is "missed". All of mom's medical interventions were YEARS ago, most, really all, were not life-threatening. She only takes meds for HBP, is 95 now and still going... backwards, but going...
I certainly would not turn down life-saving treatment. There is no way to determine if we will get this dementia (I believe it is vascular, due probably to her HBP, which I do not have.) What if dementia is not in my future? I die now out of fear that I will get it, and don't want to live out my remaining years living in some alternate reality in the past? Nope. I am in favor of current medical treatment, continuing to improve treatment and possibly finding cures for all the nastiest stuff that afflicts us.
imagine if dementia could be prevented, reversed or even healed. No doubt
many would feel differently about their parents quality of life.
It's the chronic illnesses and the lack of mobility that plagues so many. And
even some of these may well be reversible or preventable given the latest
research. Alas, too late for our parents and likely many of us.
What is often the gnawing question on our minds, especially with a relatively
healthy senior who is either narcissistic or abusive, or both, is do family caregivers deserve quality of life as much as their parents? Some of our
parents enjoyed our childhood as unpaid servants, and fully expect to enjoy
the most productive years of our adulthood as well. Some of us may face
our own old age penniless and physically broken from dealing with constant
care and/or narcissistically driven chaos and drama.
We try because we care and wish to ease suffering. It is one of life's most painful experiences that our care either prolongs our parents suffering due
to pain or dementia, or causes our own suffering by invigorating a narcissistic
parent to create suffering for us and our loved ones.
This is why you should get you news from several sources so you actually know what is going on in the world - I try for 1 or 2 Canadian sources, 1 American source, 1 European source 2 to 3 times a week - otherwise you are too influenced by 1 editor's views
I also think that lifestyle choices can waylay physical and mental deterioration. But there is not enough emphasis in the USA for preventive care and nutritional guidance in the medical profession.
Typically the doctors offer the bandaid and quickfix of a drug, which often has side effects and creates additional problems.
In Okinawa for example, people are far healthier into old age, both mentally and physically.
The reason appears to be that they eat a far healthier wholesome diet, rarely take medications and continue working their entire lives.
I see a lot of people slide cognitively when they retire.
Mom denied that she was the needy, deteriorating mess that she really was. And I chose to believe Mom’s sh*t, even though I always had a knot in my stomach about “why is she so damm weird?”
After every phone conversation.... after every visit...... I’d shake my head and ruminate about Mom’s odd priorities.
In hindsight, I misread years of Mom’s diminishing executive function.
For as long as I could remember, Mom HAD to do things her crackpot way — and went ballistic (or shut down) when anyone challenged her alternate universe. This was Mom in her 20s, 30s, 40s and 50s.
This trait of Mom’s really escalated in her 60s and beyond. I thought she was just being stubborn and selfish and intractable. Ya know, all the “pat” things people say about old folks.
When Mom lost her smokescreen (her husband died), she was in a pickle. She had enough $ to pay for home help or put herself in a supportive residential environment. But Mom had her stubborn, made-sense-to-her reasons why she would not touch that nest egg.
And OF COURSE Mom was legally competent. (Are we all cringing yet?)
I am Mom’s only biological child. Mom’s only other relative was her 70-something sister. My aunt lives near Mom and had plenty of free time to help. But seven decades of personality clashes loomed large. There was only so much time they could spend together.
Another big part of Mom’s “act” during her decade-long slide was freezing out her friends and adult stepkids. Mom wanted as few witnesses as possible. Wanted no one to ask her the hard questions.
Again, I just thought Mom was being a major-league azz. And yeah, it bugged the sh*t out of me. But I was at that age (middle age) when my peers were feeding me the classic “oh, our parents get so stubborn and goofy as they get older, don’t they?”
I found the whole syndrome rather disappointing. But I didn’t question it too much.
After the curtain dropped — and it was obvious that Mom needed real help — I fell into that maddening blend of hands-on and logistical caregiving.
I gave personally when it made the most sense and had the most impact. I delegated certain things to Aunt, whether either of those 2 old biddies liked it or not. I fielded phone calls from concerned and helpful neighbors.
A biggie: I perfected my script for the (many) people who came out of the woodwork to tell me — explicitly or implicitly — that as The Daughter, I “needed to” (in so many words) take out a 2nd mortgage to turn MY house (full of steps, hardwood floors, sharp corners and narrow bathrooms) into an ad-hoc nursing home. While Mom sat on 3 paid-off homes and a long-term care policy with generous coverage. SIGH. Hello, high blood pressure.
While (barely) keeping all the plates in the air with my career and my home life. Did I mention that??
I spent a lot of time trying to tell myself, “It’s not all about me.” Then I took a good, hard look at the cast of characters.
•Rickety, blank old Mom, sliding down a chute of 2 forms of dementia and a rare neurological disorder (all undiagnosed while Mom was alive; ain’t autopsies grand?)
•70-something Aunt who meant well, but does not possess one iota of common sense or self-awareness
•Fully-functioning me
Of the 3 of us, I was the only one who finished high school, let alone college. Only one who was computer-literate. Only one who could make a grocery list in less than 1 hour. Only one who could drive on a highway without being a danger to myself and others. Only one who could follow directions to someplace new — and successfully reverse the directions to find my way home.
Which brought on my epiphany: It really was all about me.
I did not have to do everything (and I didn’t). But I had to be the brain for 3 people. No way around it.
And that’s why I tried so hard.
In her situation, she is in a facility now where she gets really good care and the staff really do look out for her. I know if the state were to take over, she would run out of money a lot faster and have to move, because a state guardian is going to want to be paid, and I don't know what they charge, but I imagine it isn't cheap. Because I'm not a paid guardian, her money is able to stretch longer so she can continue staying there.
Some days, I get so mad I feel like saying, "Oh well, that's not my problem." Have even said that to myself and on here several times. She's probably not going to be happy no matter where she is, honestly. But after I really think about it, I'm still there because like it or not, I do care and want her to have a good quality of life. Now that may change tomorrow or next week, given the drama that I've dealt with as of late with mom and our other dysfunctional family members, but that's where I'm at with it at the moment. Just mixed emotions about it all.
I completely understand where you are coming from -- are we just prolonging the inevitable? I am sure we are. Is it for the better? I don't think so.
We have been married for 52 years. It was not always a bed of roses. There were bad and hard times. I cannot/will not have him go through this alone. I am not lonely as my DH has been checked out re decisions and conversations for several years and I am used to handling everything by myself. I have wonderful understanding friends. But I am sad and feel so bad for him -- I cry a lot, I find myself unable to make silly decisions (not the big ones - they must get done), I am angry at the way things are now.
The end is inevitable but how long and how much suffering until it comes.
Before my DH had his last incident and went into care, I asked a friend who's wife is in care if it was easier now. He said no. I thought that was odd. Now I know what he meant -- it is physically a bit easier and I can sleep all night but psychologically so much more difficult.
My new life goal is to get myself to a place where my kids don't have to do all this for me.. not sure how doable that will be but will try.
For now - I must concentrate on making my DH's life the best it can be under the circumstances .. whatever that means.
Thanks for your question and the posts that followed. This is very hard stuff.
Treeartist had LLama had good words to say on the matter.
We never know the purpose of a person, we can only see through these human eyes. But everyone has a purpose and it is not for us to question what ones purpose may or may not be.
But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.
Isaiah 64:8
Nay but, O man, who art thou that repliest against God? Shall the thing formed say to him that formed it, Why hast thou made me thus?
Romans 9:20
When I visit the nursing home, I try to speak to all the residents, I asked Mary today how she was doing and she replied “Just existing”. It was so sad. I asked if I could pray for her and she said yes, so I did out loud, right then and there. Why do some people live to a great age, vibrant, and full of life, only to die after a short illness, and why do some painfully and interminably live out their lives with little quality?
So many people have given such wonderful, thought-provoking responses to the original poster. All so valid and true to their situations. I surely don’t know why we try so hard, but having been created in God’s image, it is very important that we do try, to the best of our abilities.
So, given the relative tsunami of dementia we are currently dealing with (yes, modern science has contributed greatly to longer life spans, so that plays into this as well) I was curious to know if anyone was exploring this idea that perhaps life-long exposure to lower levels are contributing to this current tsunami.
Consider that before lead was banned from gas, paint, emissions from power/mfg plants, etc it was VERY prevalent in the environment (phase out began around 1970). Those emissions also end up deposited in the soil and water too, which can eventually end up in us! A great deal of lead inhaled, ingested, or due to other exposure is stored in the bones, but according to some studies, "...in times of higher bone turnover such as during pregnancy, lactation, and osteoporosis..." that lead gets into the bloodstream and can wreak havoc on multiple organs, including the brain!! Osteoporosis is generally age related...
From http://www.sciencemag.org/news/2013/12/bolstering-link-between-alzheimer-s-disease-and-lead-exposure:
"... Though neuroscientists say more work is needed to confirm the connection, the research suggests that people exposed to lead as children—as many in America used to be before it was eliminated from paint, car emissions, water, and soil—could have an increased risk of the common, late-onset form of Alzheimer’s disease." I consider mom a VERY late onset - she was over 90. None of her siblings showed signs of this - yes they died younger than her, from other conditions, but none were young and none showed signs of dementia.
Now, there is no proof as yet, and studying this is difficult because of the time spans involved, while also trying to rule out any other factors, including genetics, but it is interesting nonetheless. I am no conspiracy theorist, just looking into what others might be finding, if anything. We who are dealing with this tsunami are mostly in that age group of early exposure... It is bad enough having to take care of someone with these afflictions, but to also have to concern oneself with 'will I get this too?' is nerve-wracking! We cannot change what will be, but that fear is still there, lurking in the back of the mind....
Perhaps in the near future there will be much less of this going on, as we who were overexposed to lead pass on and those who were not as heavily impacted age....
#1 Because of love.
#2 Because we would go to the moon and back 100x over for our LO.
#3 Because we may be perfectionists.
#4 Because wouldn't we want the same for our aging selves?
We were brought up in a world where most parents died young and any caring for their own parents had usually been short. Many diseases of ageing were fatal, and care options were not available. Families were larger, many were local, and anyone who moved away was usually ‘gone for ever’. It was more workable to arrange care at home, even though at least one carer usually bore the burden. My own grandmother was the last daughter who was left with the care of her parents until they died when she was aged 40, and then married just in time to get pregnant. It was a different world. In families where there was money, it was usually controlled by the parents who had real power to call the shots about inheritance, which was yet one more buttress to the idea that adult children were obliged to care.
The world of the Bible and the other books of religion was often comparable in morals, but very very different from today in the details of living. A recent post said that ‘there is nothing in the Bible to support putting your parents into a home’ – a startling reaction to the obvious fact that there weren’t any homes! Morals and the way of life can be difficult to disentangle. Jesus’ comments on divorce in the Sermon on the Mount were made at a time when a husband who divorced his wife usually condemned her to destitution or prostitution. You can more easily see the remainder of the Sermon as an unchanged basis for an ethical life.
Many of us on this site have strong ‘religious’ beliefs about how to act, irrespective of their actual religion. Perhaps it would help us to focus on the ‘love’ morals to work out the best thing for us to do. This includes the ability to use our own ‘talents’ for ourselves, our partners and children, and our wider lives. There is nothing in the Bible to support the idea that parents’ ‘wants’ come first, even if the Commandment to ‘honour’ suggests that we should try to meet their ‘needs’
These reasons we take on the care of our elders or simply loved ones in need are also the reasons we tend to take on too much and let it engulf our lives, that's the rub of course and the impossible balance to find sometimes. But I can say my mom has always been there for me, when I had surgery, when I couldn't get pout of bed with Lyme disease and no one here new how to treat and she threw a mattress in the back of her car, drove to VT and took me back to CT to see as many specialists as I needed to until I found one I was comfortable with. I can go on of course but she was there for me, dropped everything to care for and help me well after her responsibility for me as a child under 18 was done, why wouldn't I do the same for her? We do it because it's the right thing to do. Not that any of that makes it easy, in fact in many ways for me anyway it makes it harder because she is shrinking away in front of my eyes and I know that she isn't capable of caring for me the same way now.
I'm certainly not religious, did not have a mom quite like yours (she sounds like the dream mom we all wish we had!), but I do what I can to see that our mother is cared for and safe. The care-giving had to be handed off to MC as I could not do this physically and there's no way she would be able to get in/out of my house (full stairs everywhere), my younger brother is still working so would not be home to "watch her" and has two girls in college to pay for, and neither brother, although both said 'gee for the amount they are charging I will do it', haven't a clue as to what that care entails! Older brother could not even handle visiting her recently in MC - did not know what to do with her or how to relate!
I manage EVERYTHING else because they would probably mess things up (and older brother does not have POA, so many things he wouldn't be allowed to do.) I get nothing but a headache and lost time for it, but would rather see it done right than give it up...
Anyway, I read that statement in your post and said hey, there is someone like me out there!! I've always enjoyed helping others and for the most part my kids learned this from me. However there are people who take advantage of those of us who are "generous" too - the kids (and I did too, although not as bad) learned the hard way and I feel bad because they got this from me... But, so long as they learned from it and don't just toss that desire out completely, all should be good, just be wary of some people. A hand up is good, hand outs are not so good!
I do hope you have more good times with mom, although we know those times will diminish, cherish them while you can!
For those who have no medical issues other than dementia, there would be no medical treatments to stop or to forego. Yet you would still have the issue of the person needing care. So eliminating any medical treatment to prevent prolonging life would not apply... Skipping any major interventions for conditions that might pop up (cancer, heart failure, etc) would be on the decision table, but certainly I would not opt for any major surgery or chemo for mom (95) should anything pop up. She is actually the last holdout on both sides of the family, and did not really develop dementia until she was 90+.
Along with my other comments about whether we should provide interventions or not, my dad could have died when he was in his early 40s due to a bad heart valve and aneurysm on the aorta, both fixed at the same time. He lived to be 83, mostly declined due to bad back and dementia in the last few years. He had a second valve replacement, same valve, many years later, but he got a good 20 years out of the first, when they say more like 10. So, is medical intervention worth it? I vote yes for most situations. He had a very good outcome with this surgery and lived to enjoy MANY more years! Would I put mom, at 95 with dementia through that now? No way! If he needed another, in his sad condition near the end? No, but that would have been mom's decision (if she asked us our opinion, we could respond, but she was still competent and would have to make the final decision.)
So, this really is not a cut and dry situation. For mom, other than BP meds, she is relatively healthy, so the beat goes on....
"I have issues with a worldwide medical community that has given and continues to give so much time, money and research efforts to healing heart disease, cancer and other illnesses that we now have a growing population of people who are surviving multiple chronic illnesses only to be left with dementia for a decade or even two not even knowing who they are or who their family is. I doubt anyone in their right mind would consider this to be "quality of life" or would choose to live out their last years this way. If I were diagnosed with dementia, I would not engage in treatment or would stop all treatments for other chronic illnesses. The government funnels funds into research, maybe they can funnel more funds into helping healthy people survive caretaking!"
The dilemma here is yes, medical intervention has helped to contain or cure many diseases and illnesses, but where would you draw the line ? Many who have been "cured", like yourself, can go on to enjoy MANY years, and not all end up with dementia. There are others who have had NO medical issues or interventions, yet are now on this path. We have no crystal ball to see who will or will not develop one of these horrible life-sucking conditions! Should we forgo all medical progress? While pursuing treatments and cures, they just might finally figure this one out and stop or prevent dementias.
Ones "quality of life" is all we can use to determine whether to continue treatments or switch to palliative care. Would the person choose to live out the remainder of their life, knowing they are being robbed of memory, even if they can still function on some level? Probably not, however they are not in a state to make that decision, so we have to make the choices. Although you indicate that you would opt out of treatments were you diagnosed with dementia, by the time you get this Dx, you might not be able to make that decision or may be in favor of whatever other treatments you do need/want! If that is what your wish, you need to document it legally, via medical directives. Despite documenting your wishes, family members can and probably will continue treatments decisions for you - this could be out of love, wanting to preserve what time one has left with the LO or considering that if they eliminate treatment, it would be like euthanasia, which many would not opt for.
Why do we do what we do? Everyone's reason is personal, just like every dementia case is unique (despite similarities, not every one follows the exact same path.) Our mother cannot function safely alone, but can still get around (with a walker now), feed, dress, toilet and bathe, still gets some enjoyment out of reading (although she is probably reading the same things over and over.) Her hearing is almost non-existent, and we are still getting treatments for macular degeneration to preserve her eyesight. Does she wish to die? No. Is she firmly rooted in the here and now? Sort of. She may not know what day it is or where she is, but she still has some enjoyment (they just the other day told me she kicked butt playing UNO!!!) She has forgotten the condo she lived in for 20+ years and is focused on their previous home. She is focused on her mother, wanting to call and/or visit, wondering what she is doing on the major holidays, etc. Her mother has been gone about 40 years, so we just fudge the answers for now. Would I stop her BP meds? No. If she were to have a major incident, her wishes were stated in medical directives, so we have a DNR in place. If she has infection or some treatable condition, we will treat it.
I do feel for those of you who are doing this in your home or the LOs. I could not do this. I knew it would be very difficult/impossible for me to physically care for her myself, brothers are clueless about what it really takes! Even worse are those who never had a real loving relationship, are accused of various deeds, are jeopardizing their health or own financial futures to provide this care