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?
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.
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.
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.
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
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.
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.
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.
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.
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
They are not ready to go and don't want to.
Spiritually, I believe their mission in life is not complete.
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.
"Greater love hath no man than this, that a man lay down his life for his friends." (and loved ones)