Elderly care & when to say enough

11 years ago

Heart breaking story of one man's mom with dementia & how things happened so fast to save her life; even though she did not want to end up like this & had the proper paperwork. Heart breaking when the mom was pleading not to do the initial surgery.

A Life Worth Ending Click on print at the bottom of page 1 to read the whole thing on one page.

Here are a few parts-

When my mother’s diaper is changed she makes noises of harrowing despair�"for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”

Everybody would manage his or her parent’s decline differently. Nobody is proud of himself. We all mess it up. This is partly because there is no good outcome. And it is partly because modern medicine is a random process without a real point of view and without anyone ultimately being in charge. The buck is relentlessly passed. Down this rabbit hole, we all become ineffective and pitiful.

My mother’s cardiologist, Dr. Barbara Lipton, a peppy younger woman who, annoyingly, called my mom “Mom,” had been for many years monitoring her for a condition called aortic stenosis�"a narrowing of the aortic valve. The advice was do nothing until something had to be done. If it ever had to be done.

This was good advice insofar as she had lived with this condition uneventfully for fifteen years. But now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What’s to lose? That was the sudden reasoning and scenario.

My siblings and I must take the blame here. It did not once occur to us to say: “You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?”

This is not quite true: My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist�"sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen�"but of course who listens to a woman who scribbles such notes?

The truth is you’re so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: that the choice is between life as it was before the operation and death, instead of between life after the operation and death.

Here’s what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother’s “quality-of-life baseline”: “I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia.”

You fully informed my demented mom?

The operation absolutely repaired my mother’s heart�"“She can live for years,” according to the surgeon (who we were never to see again)�"but left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in free fall.

She was reduced to a terrified creature�"losing language skills by the minute. “She certainly appears agitated,” the psychiatrist sent to administer anti-psychotic drugs told me, “and so do you.”

Six weeks and something like $250,000 in hospital bills later (paid by Medicare�"or, that is, by you), she was returned, a shadow being, to 86th Street and her assisted-living apartment.

Unmoored in time, she began to wander the halls and was returned on regular occasions to the emergency room: Each return, each ambulance, each set of restraints, each catheter, dealt her another psychic blow.

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Comments (42)

theroselvr
Original Author
11 years ago
last modified: 9 years ago
No clue why it pasted in like that. I previewed a few times; it was fine.

What's sad is that we had to have a DNR on the front door; both sides of my dads bedroom door plus over his bed to make sure crews saw it if I wasn't there. My dads biggest fear was his wife making the decisions.

We were lucky/unlucky that his Drs would not do anything to save his life. They did once with draining his lungs & said no more. His next Dr refused to admit him when he begged for a swollen arm which I feel killed him. My dad knew he was going but he still had a few loose ends to tie up & would have liked another few more weeks.

I have to say that the best advanced directive we've seen is 5 Wishes You can preview at the link; can even save it. If you have a non-adobe PDF program; you can print it. My dad had one; hub has one & I will make one. I also had my 89 year old neighbor do one the last time he was here
natal
11 years ago
last modified: 9 years ago
No clue why it pasted in like that. I previewed a few times; it was fine.

Unfortunately, the only way to avoid that is to post it on the Test forum first. There you can see what needs to be edited.

..........................................................

It's too bad we don't have more like Jack Kevorkian. The man was a saint.

from your article:

I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother's end.

The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they're going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.

And it seems all the more savage because there is such a simple fix: Give us the right to make provisions for when we want to go. Give families the ability to make a fair case of enough being enough, of the ends, de facto, having come.

Not long after visiting my insurance man those few weeks ago, I sent an "eyes wide open" e-mail to my children, all in their twenties, saying this was a decision, to buy long-term-care insurance or not, they should be in on: When push came to shove, my care would be their logistical and financial problem; they needed to think about what they wanted me to do and, too, what I wanted them to do. But none of them responded. I suppose it was that kind of e-mail.

Anyway, after due consideration, I decided on my own that I plainly would never want what LTC insurance buys, and, too, that this would be a bad deal. My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents' long and agonizing deaths won't do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.

Meanwhile, since, like my mother, I can't count on someone putting a pillow over my head, I'll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.
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Oh, your last post raised HUGE red flags. The drug situation is very serious. In several ways. Unfortunately, this is another area where I've had very unfortunate experience. My SIL was demanding drs prescribe specific medications (mood elevators, narcotics, etc) to my in-laws. We don't have absolute proof, but there is circumstantial evidence that SIL was stealing those meds and subbing things like aspirin. At other times, she was doping MIL (who has Alzheimer's) up with other people's prescription sleeping pills to make caring for her easier. Then things got really hairy--SIL started stealing from MIL to support her drug habit. I'm sorry to say, we didn't believe a relative could do that--so by the time we got involved and got the courts to do something, SIL had misappropriated over a QUARTER OF A MILLION $$$$ that had been earmarked for MIL's end care. Sadly, your last post is the one that concerns me the most. You have to sit down with your husband and the far-off brother, and discuss what you're going to do to protect your MIL and her assets. Drug users have no conscience--it's the first thing drugs seem to destroy. But they're very, very, very good about scamming their relatives. And it will happen--sooner or later, for more or less $$$. You have a very serious problem on your hands. I'd strongly advise that you engage an eldercare attorney to properly set up your MIL's assets, and I'd further suggest that you and your husband need to sit down with an attorney, lay out the situation you've described here, and find out what you need to do to protect yourselves in this matter. Unfortunately, in our case, we're up over $20,000 in legal and forensic accounting fees, out of our own pockets. That doesn't include the fees that have had to be paid to the court-appointed guardian for managing MIL's affairs properly. While we've managed to stop the stealing, the situation is a long way from being resolved. I truly hope your SIL doesn't go the way mine has--but sadly, it sounds as if she's got no scruples when it comes to feeding her habit. Stop worrying about making her angry--she's USING your guilt to get over on the family. Best to face this now and get the appropriate protection in place, than to wait until you've got an expensive mess to clean up. We're 7 years into our battle, with no real end in sight. Wish someone had opened my eyes in 2002! I'm truly sitting here with my heart in my throat, thnking of the terrible time your family is likely to face. I wouldn't want to put my own worst enemy through the stress and strain we've had dealing with a thieving 'out-law' (I refuse to call her an 'inlaw' any more). My heart really goes out to you.
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blfenton
11 years ago
last modified: 9 years ago
My mother, who is 83, has made it very clear to her children, her lawyer, and her doctor that if something happens to her (eg heart attack) that she is not to be resuscitated. She is still very active, lives on her own, does a lot of volunteer work and has no desire to live out her life in a wheel-chair in assisted-living being spoon fed jello.
golddust
11 years ago
last modified: 9 years ago
Interesting and thought provoking. 'Mom' subscribes to Time. The current issue has another provoking cover. It is all red with black letters: "How To Die". My MIL took one look at the front cover and turned it over with a look of total shock. "I don't want to die." She won't be picking up that issue again. She seriously does not want to discuss these things.

I have been here before with my own parents and it isn't easy. The best I can do is make sure MIL's sons are on the same page and advocate for sanity when the time comes. I talked to all her boys before I moved her in since I am now the family representative and I wanted to make sure they understood the kind of care I had in mind was what they wanted for her. Luckily we are on the same page. Maintain her mobility as best we can, make sure she feels valued and valuable, provide her with all current medication and keep her comfortable.

MIL is almost 89 and to quote her, "I'm losing it." She *is* losing it. She doesn't remember what day it is, repeats herself constantly. Can't remember some family members, does not initiate conversation nor contribute to present day discussions. It always goes to way back when. She always thinks she took a shower yesterday and hoards used Kleenex that can double as a sponge to wipe off the table. She has yet to master the chair stair lift, frequently pushing the lever the wrong way and wondering why the thing won't move. She carries her cane like a purse and pushes her rollator way out in front of her, making it dangerous. I tell her I am going to have to put a 'student driver' sign on it as I must hold on to it so it won't get away from her. Oh. She can't get out of chairs without arms and we wonder how she survived alone. Can't imagine her driving as she can't even seatbelt herself.

For the record, I just want to be made comfortable. DNR signs will be plastered around my bed too.
deeinohio
11 years ago
last modified: 9 years ago
Thank you, roselvr, for posting this thought-provoking, heartfelt article, and one very timely for me.

As one whose family was immediately thrown into crisis a month ago when the medics forced entry into my parents' home after my father had been on the floor for 3 days and my mother was in a urine-covered bed (mother 86, Alzheimers and father, 92, her caretaker, now with a broken hip), I find every day brings with it something new to deal with.

My brother and I feel tremendous guilt that we hadn't checked in with them for those 3 days. And now, with my mother's imminent departure to a nursing facility from the rehab center she's currently in, I feel guilt wishing she would go quietly in her sleep, choosing that over this hell she is currently in, bringing everyone along. She's not my mother anymore; she looks like her but she knows none of us and has little memory of any life she ever had.

The expense of it all is another issue. And, the fact that my very independent father is saying he wants to move back to his 4-story split 30 miles away, even though he can't walk very far and the staff is saying they'll never sign off on it. And, what if he does? He won't let anyone else help him and I can't drive there every day to care for him. He won't move in with me.

It's all so impossibly hard....
golddust
11 years ago
last modified: 9 years ago
Gosh, Dee. What an impossible situation. If your father does insist on returning to independent living, get him a life alert button. My MIL had one and she used it several times. He has some big decisions to make. Print out Roselvr's '5 wishes' and have a heart to heart (frank) talk with the family present and the hospital social worker.

It is strange to me that our society shows more compassion for animals than humans.

(((hugs!!))) As far as guilt, you need to remember that your parents have chosen this due to lack of planning. I don't know how you can make up for that.
natal
11 years ago
last modified: 9 years ago
Dee, I can't imagine dealing with both parents at the same time. My brother also had to come to terms with the guilt he felt after finding my mom on the floor of her bedroom where she had lain for up to 36 hours. Her life alert button was useless, because of the paralysis from the stroke. Although she had a living will it didn't specify no feeding tube, so we had no choice. She lingered for 3.5 months with zero quality of life.
theroselvr
Original Author
11 years ago
last modified: 9 years ago
Natal; I'm so sorry. Why I love the 5 wishes because things like that can be written in. My hub wants none of it. I know of an elderly lady that stopped eating for 3 weeks & instead of letting her body shut down naturally; they put a feeding tube in which ended up prolonging her life another 3-4 weeks. I can tell similar stories where quality of life would not be good yet feeding tubes were used & prolonged death.

Dee; I'm so sorry. My ex-neighbor from my old house broke 4 ribs 2 years ago. I had him at my house for 3 weeks after rehab; tried to get him to get his life in order. Thankfully we did the 5 wishes but that was it. He returned to his bilevel & still drives. My biggest concern while he was with me; was he was starting to suffer some form of dementia. Things were ok as long as the conversation was kept simple; if not; you could see him start to shake & get confused; he would then lash out. He's also changing stories to benefit him; & no matter how many times I tell him the real version; he forgets. I can be neutral here because I'm not family. My other concern was how he kept falling asleep while talking; since he still drives; I'm sure you know where I'm going with this... Well; He's on his 3rd car since leaving here; recently had a minor fender bender with the newest car & DMV sent him a letter saying he needed an eye test as well as to be cleared by his GP. Why his cardiologist isn't involved; I do not know. He has a few more days to send everything in & is $hitting his pants that he'll be brought in & tested & made to give his license up. He should not be driving & I'm thankful someone wrote to DMV; or that's what I was told.

He is like your dad; refuses to get rid of his bilevel; yet he's been talking about selling since I moved. When he got injured; I told him that as soon as he felt better; we'd go up & help him clean up & get the house ready for sale. He wanted hub & I to help get a few things out of his house before he calls his family in to also help. He does not have a wife; his only son is also gone; he lost his lady friend 3 weeks before breaking his ribs & puncturing his lung & feels like his closest niece doesn't have his best interests in mind. He also has 3 step daughters. The neighbor directly next to him is harassing him. I told him that we really should get moving with getting his house ready & to start looking at either smaller homes in the same area or closer to his family & his reply is that he's staying because he doesn't want the neighbor thinking he's moving because of them. I fear he will die alone in the house because of being stubborn.
deeinohio
11 years ago
last modified: 9 years ago
Thank you for your kind thoughts, gold, natal and roselvr. It's one day at a time.
Dee
tinam61
11 years ago
last modified: 9 years ago
The most important thing is to appoint someone as medical power of attorney and make your wishes known. We dealt with this with my grandfather, who had a living will. My grandmother was living, he did not have a medical POA. He wanted a DNR, he also did not want unnecessary treatment, but when it came down to it, my grandmother could not make that decision and the hospital would not honor the living will. After his death, our family all discussed what they would want and appointed POAs. With my mother's illness and death, she had told us specifically what she did/did not want. It makes it so much easier for the family, knowing you are doing what your loved one wanted.

Dee, I am so sorry for what you are going through. When my mother was first diagnosed, we were facing my father's hip replacement and dealing with my grandmother (as my mom's illness progressed, my sister and I had to place our grandmother in assisted living). That was such a hard time in my life. I certainly sympathasize with what you are going through. It's hard not to feel guilty, but all you can do is the best you can do. Try to take care of you too. My thoughts and prayers are with you and your family. I hope you know you can share here if you feel the need.

tina
graywings123
11 years ago
last modified: 9 years ago
Getting back to the article, I am definitely in the camp with those who want control over how their life ends. But there are so many people who don't want to face it and talk about it. And there are those who are vehemently opposed to anything but a "natural" death, and I use the quotation marks purposefully.

There was nothing natural, IMO, in the way Terri Schiavo was left to live, but her family didn't see it that way and neither did our then President, some members of Congress, and many ordinary citizens. You have to believe that the people who wanted her to stay alive also would want that for themselves.
chispa
11 years ago
last modified: 9 years ago
I think a younger person in a coma is different from a 80+ year old who is close to death. The family of the young coma patient hopes that future medical advances might fix the problem or the patient will miraculously wake up and be the same person they were before.

That said, I don't believe the courts should have been involved. Again, this shows how important it is to make your wishes known and tell all your family what you want.
theroselvr
Original Author
11 years ago
last modified: 9 years ago
Terri Schiavo's case was a nightmare. If it was me; I would not want to live like that; even if there are medical advances. After being in a coma & brain dead that long; I doubt her body would ever return to any sort of normal if they were able to do a brain transplant; which would never happen because a person has to be brain dead to harvest.

Her case was going on during my dads cancer; it started a lot of animosity in the family when my "mother" said to keep her alive no matter what. We were all bothered by it because of financial responsibility. One sibling that wasn't speaking to my parents said something; then turned around & said that I said it which is part of why my "mother" has made my life miserable.

When hub was diagnosed with cancer; he was very specific in his 5 wishes. We made a lot of copies but had the sig page signed by him & notarized; then gave it to 2 people that were neutral. I had a feeling his mom & family would fight me like Terri's family so we tried to cover our butts as much as we could. Had enough drama with my dad; didn't need more.
Bumblebeez SC Zone 7
11 years ago
last modified: 9 years ago
I have nothing good to say about most doctors unfortunately. I have seen plenty with my mothers illness (and subsequent death) and taking care of my father for the past 13 years that I truly believe the vast majority are so removed from the lives of real people and are only (at the core) concerned about making money.
Expensive tests are scheduled for...what purpose? If surgery is involved if the tests are bad ..why?

My Dad has a 5,000 deductible, medicare and a $270 a month premium. His retirement is gone and all he has is SS, which is too high to qualify for medicaid- but not by much.

Thankfully, he is wonderful about trusting others to make good decisions for him, I have POA in health and regular and he has a living will.
lynninnewmexico
11 years ago
last modified: 9 years ago
Oh my gosh, I want to hug every one of you who's gone through such terrible ordeals with your parents like that! It breaks my heart to hear their stories . . . and yours.

Last week my parents flew from their Winter home in Florida up to their Summer place in Michigan. The nearest family member, my sis, lives outside Atlanta. At 85 & 82, my parents are both very alert and with it mentally but physically they are not in good condition. A chauffeured limo is now needed to pick them up and take them to the Tampa airport, so the driver can take care of getting them and their luggage situated! Wheelchairs had to be arranged by my one BIL for them at the curb to get them to their plane and as they disembarked in Detroit. Dad has major heart problems with 2 surgeries already for it. If he falls he can't get up by himself anymore and needs to crawl to a piece of furniture or a tree if it's outside in order to get up! He(thankfully) doesn't feel confident driving anymore. Mom, 82, has 2 bad shoulders, one bad knee and now Parkinson's in her right hand. Just recently she told me that she needs Dad to get her shoes on for her, that it's become really hard to push a shopping cart anymore, and she can't do her own hair or write anything anymore because of the Parkinson's (OMG!!!). We are so blessed that they're financially well off enough to have help outside the house oce a week, but absolutely refused to have a housekeeper inside to help them. When Dad had his last heart surgery 3 years ago, one sis in Michigan and then a brother in Colorado had to consecutively take off a week of work and fly down to take care of him and Mom. We've all talked to them until we're blue in the face, encouraging them to move back to a condo in Michigan full time near most of my sibs, to no avail. It's been a nightmare of worrying about what might happen next and who will have to fly down and take care of them! But finally this morning, as another sis (I have four) drove them from her house to pick up their Michigan minivan at another sib's home, they agreed to move back! Of course, this is just before Mom drove herself & Dad up to their Summer house on Lake Huron . . . a two hour drive from any of their Michigan family!!! (Sigh) I hope and pray that I'm not that darn stubborn when I get to their age!

So, now my Michigan sibs need to quickly, before Mom & Dad change their minds, find a condo near one of them that our parents like; talk them into selling their Summer home, which is too far away and being on a lake, has many opportunities to fall and hurt themselves; buy all new furniture for the condo (they want to do this) and then sell the Summer place and minivan. And then, sometime this Summer, before I need to take DD to college in Oklahoma,a few of us "kids" need to fly down to Florida and pack up everything in their home there, sell the house and furniture, rent a U-Haul and drive it and their Florida car up to Michigan. I hate Florida in the Summer!

This morning's momentous decision has been the subject of multiple phone calls back and forth all morning long, as we know we need to move fast! We all love our parents and really enjoy their company, but sometimes we just want to throttle them both!

Thanks for letting me fret and whine here. I know I'm in good company.
Lynn
lynninnewmexico
11 years ago
last modified: 9 years ago
I rearranged a couple of sentences in my (above) post and somehow erased the one sentence that made my entire "rant" make sense . . . at least, sort of (LOL):
"And now, thanks to this thread, you've made me realize that we very much need to talk to our parents ~ and soon ~ to make sure they have their own end of life wishes and requests in writing and where they can easily be accessed . . . thank you!"
golddust
11 years ago
last modified: 9 years ago
I love these conversations. I did not think for a moment you were ranting. With my own parents, I realized how much we loved denial when it came to recognizing each stage of increased need. It seemed like it had to hit us in the face before we acted.
patty_cakes
11 years ago
last modified: 9 years ago
The '5 wishes' are automatically included in any trust. I have everything 'set in place' and am rationally able to discuss these issues w/my children. Needless to say, A trust needs to be written when the person is of sound mind and able to make these decisions his/her self. It's never TOO early, as is planning for retirement. Time has a way of sneaking up on us.

Incidentially, this isn't the same as 'parents having enough money to be taken care', it's about *decisions* that in all likehood, will be left to our children or other menbers of the family. I recently read on line it can be as much as *$83,000 PER MONTH* for a parent to be take care of~~it IS not cheap. PLEASE take the time to set up a trust for you and your loved one. ;o)
patty_cakes
11 years ago
last modified: 9 years ago
Here'a a list of what is the aveage for senior care alone, not including medical charges. It's mind boggling. ;o)

Here is a link that might be useful: healthcare
palimpsest
11 years ago
last modified: 9 years ago
My mother lived for almost 25 years with a debilitating illness. For the last several years of her life a single one of her medications was almost $100K a year. (She was enrolled in a study, luckily). One day, she called me to say that one of her good friends had been killed in a car accident on the way back from a shopping trip.

She was shocked of course, but a day later she called me back, and she said "you know it's terrible for her children, but she was lucky. I can't say this to your father, but she asked me to go on that trip, and part of me wishes I had: she was gone in a minute doing something she enjoyed, and before long I may not be able to feed myself".

Ironically, years later a car accident is what finally led to my mother's death, but it took ten months, during which she never really recovered--and she couldn't feed herself. I think this period helped my family deal with it slowly, but I can't speak for her own quality of life.
tinam61
11 years ago
last modified: 9 years ago
That is so sad Pal. A lingering illness is hard on everyone, the person, family, etc.

tina
theroselvr
Original Author
11 years ago
last modified: 9 years ago
Reading the posts rips my heart out. While we never expected my dad's life to end the way it did; I'm thankful that his doctors did not believe in "more medicine".

My dad picked me to speak for him if he could not because we shared the same beliefs; he knew that if anyone could say no; it would be me. Deep down; even though he begged the last local doctor he had to admit him for his swollen arm; I think that in his heart he knew it was over because I offered to take him back to his cancer center doctors who probably would have admitted him for the swollen arm; but my dad said no & I respected those wishes. I hate to think about how he really felt about the DNR signs; but we both knew at that point that it was needed. He was an EMT; did not want to suffer cracked ribs from lifesaving measures.

Reading everyone's heart breaking posts; I'm thankful my dad ended up with terminal cancer because I can't imagine being in any of your shoes. He was humiliated having to wear diapers the last few days of his life but in my eyes he still had some dignity. I hope that my hub & kids can know when to say enough & I'm going to have to make sure that I fill out a 5 wishes for myself
gsciencechick
11 years ago
last modified: 9 years ago
I really feel for you and all your stories. My siblings and I were "fortunate" our parents had very short illnesses before they passed away. Dad had multiple heart attacks and was gone in two weeks, and Mom had small cell lung cancer and was gone in a couple of months once we found out. It was bad for her near the end with her physical decline, but at least it was a short period, and she was fully mentally alert the very end. Had we known she had so little time left, we would have just brought her home.

What was difficult was dealing with some of the medical staff where we insisted they talk to HER vs. us. She didn't hear all that well so they may have to speak up, but we told them she is very smart and cognitive and fully understands her diagnosis and treatment.
Jamie
11 years ago
last modified: 9 years ago
I can't get over the sense? - it's not a thought, really, or a feeling, but like a hunch - that some people really can manage their own physical death better than others. Maybe it's a process similar to childbirth, and you can get through it quickly by knowing when to push.

I feel that my mother willed her death to come quickly. It still took a while, of course. But I sat hospice many times with people who had had no food or drink and were completely gone on meds and lasted 3 and 4 weeks. These people were laying in bed fighting. I prayed for them, touched them a little, and wondered A LOT about what they were working out, what was going on. My own mother was able to go very quickly once she became completely bedridden. I'm amazed at how she seemed to know when to stop eating, when to stop getting out of bed, when to refuse to open her mouth for medication. She seemed to be cooperating with death.

They say that this happens TO you, but in her case I felt she was working WITH it. Similarly my father, I think he knew on some level that he was going to die of a broken heart, because he was done living. It happened abruptly and he had gotten a clean bill of heart health a few weeks before.

I think my parents had a creativity that they expressed when they "made" their endings.

I'm not sure at this point that I'm artist enough, and I'll feel much better once I have a writing, a contract.
Bumblebeez SC Zone 7
11 years ago
last modified: 9 years ago
What was difficult was dealing with some of the medical staff where we insisted they talk to HER vs. us. She didn't hear all that well so they may have to speak up,

I have the exact opposite...my Dad smiles, looks likes he's comprehending everything and I get ignored. He would much prefer that I handle everything, that they talk to me, but often the doctors won't believe me when I pull them aside and tell them about the dementia. Well, they do now, but for years they didn't.

All he wants to know is "will it hurt?" and has no idea what's going on, can't understand anymore.
theroselvr
Original Author
11 years ago
last modified: 9 years ago
I agree that they can will it. Look at Farrah Fawcett who lasted 3 weeks; my guess is that she was waiting for her son & a few other loved ones that never came because they were cut off from her. How I hate to think about what her last month was like.

I know others that wait for everyone to leave the room; or others that wait for certain people to be there.

I know that my dad hung on as long as he could; he seemed to know the right amount of morphine he wanted that would not prolong it but would allow him to hold on for one thing & when that one thing happened; he was gone within 2 hours & I knew it would happen because I told the person that came that he would go soon after. I ran home to shower & left my son to sit with him & my son no sooner got up; my daughter said good night pop-pop; that I started checking vitals & his breathing changed; everyone came back in & he went. 2 hours. How I wish he would have held on a few more days but that was enough to give him peace to go. He thought he tied up loose ends but didn't.
User
11 years ago
last modified: 9 years ago
I agree, I agree, I agree, I agree...

The vast majority of our healthcare dollars are spent on the elderly in the last two weeks of their lives. It's awful for them, it's a waste of money, and it's actually a sin IMO in many cases where the family (who isn't paying) insists on keeping the elderly relative alive because THEY are getting the social security and/or pension checks.

Yes, there are hundreds of thousands of cases in which the elderly patient is merely a source of income to the relatives and s/he is kept alive for ONLY that reason. Don't ask me how I know, my job brings me into frequent contact with these families.
dedtired
11 years ago
last modified: 9 years ago
Last week's issue of Time magazine had a cover story on how to die. It seems that the elderly are kept alive, even in the worst indignity and against their wishes, because of the way our (US) health system works. Doctors make money when procedures are performed.

I think this video by the author of the cover story is incredibly eye-opening.

Here is a link that might be useful: video
golddust
11 years ago
last modified: 9 years ago
'Mom' subscribes to Time and I've been enjoying her subscription. This week, a letter about the article ded is referring to resonated with me. The author said something like "We need to learn how to live well and how to die well."

Learning how to talk about death is a start. 'Mom' can't even talk about her age. At almost 89, she insists she is only 29, in a bad joke kind of way. But she has told her kids that for their entire lives. They don't know how old she really is.

When she was crushed in the JC Penney explosion, her son read the newspaper article that stated her real age (42). He cried because he felt she had lied to him. "You said you were 29." She doesn't like to discuss the tough stuff. Our generation has to do better.
natal
11 years ago
last modified: 9 years ago
Dedtired, thanks for sharing the video. Someone mentioned last week's issue on another forum and I meant to pick it up, but forgot.
dedtired
11 years ago
last modified: 9 years ago
I don't understand the hesitancy to discuss end-of-life issues. None of us is getting out of here alive and we sure can make our passing easier and more gentle for ourselves and our loved ones. My mom is 94 and frankly I get tired of hearing about "what to do when I die" -- over and over again! I'm so glad we can talk about it though. I hope to have as much in place as possible so the decision making for my sons is easier. I have an Advanced Medical Directive and my son has Power of Attorney for me. Here's hoping I have a lot of good years left. I just don't want to spend my last days with a feeding tube stuck down my throat.
natal
11 years ago
last modified: 9 years ago
Feeding tubes are placed in the stomach.
southern_vesta
11 years ago
last modified: 9 years ago
As a retired RD, I can confirm that indeed tube feedings are administered
nasogastrically, as well in the jejunum in addition to the stomach.

Here is a link that might be useful: Enteral Nutrition
natal
11 years ago
last modified: 9 years ago
If I remember correctly, the one placed in the nose carries higher risks ... or maybe that was particular to my mom's case because she had lost her swallow reflex.
dedtired
11 years ago
last modified: 9 years ago
I thought the tube went up the nose and then down the throat to the stomach. Unless it's going to save my life and return me to a life worth living, I don't want one.
theroselvr
Original Author
11 years ago
last modified: 9 years ago
Want to bump this with new info-

sis3 mentioned in another post that she read an article by Dr. Ken Murray titled "How Doctors Die" about the limitations of medication and the end of life choices choices that doctors make for themselves.

Graywings found the article & left the link-

Interesting article, check out the stats about CPR:

A study by Susan Diem and others of how CPR is portrayed on TV found that it was successful in 75% of the cases and that 67% of the TV patients went home. In reality, a 2010 study of more than 95,000 cases of CPR found that only 8% of patients survived for more than one month. Of these, only about 3% could lead a mostly normal life.

Here is a link that might be useful: Why Doctors Die Differently
cyn427 (z. 7, N. VA)
11 years ago
last modified: 9 years ago
That is a terrific article, roselvr. Thanks for posting. DH and I have advanced directives and have had one since we were in our 50s. Even though everything is in writing, I have discussed my thoughts on this with my doctor and family, too, so DS understands how I feel. I want him to feel as at ease as possible if I can't express my wishes when the time comes.
mary_lu_gw
11 years ago
last modified: 9 years ago
Just came across this. I was health care PO as well as legal for my mother. I knew what her wishes were. She had a brain stem stroke and could not swallow. She refuse to go to the hospital. Long story short, what the doctor originally said would be fatal in 2-3 weeks ended up being 2 years. She eventually was able to take in enough calories to sustain life. However she dropped from 160 lbs to 78 lbs. She was in hospice for almost 1 year, but had to be moved as she did not die. Ended up in a nursing home-private pay. They wanted to do all sorts of tests and I refused. Now it just so happened that my SIL worked at that nursing home. I found out that at a board meeting they discussed having me declared "unfit" to be her health care POA. When I found this out, I attempted to move her to a private care home, and the nursing home called the private care home and threatened to have them shut down if they took my mother as a patient. I called my mom's doctor and got him involved in the matter and he defended my actions and I was able to have her moved. So be aware that even though you have health care POA set up, the person must also be on their toes to be sure their directives are followed!!

As my SIL said after the moved was made, "they barked up the wrong tree" when the went against me! So glad it worked out as it did and my mother's wishes were followed.
Lyban zone 4
11 years ago
last modified: 9 years ago
Roselrv.
I just read the article you posted called A life worth Living. I was very touched by it and then decided to google to see if the mother died and coincidentially she just died 5 days ago.
Here is the obit:

WOLFF
Marguerite "Van" Wolff, 86, whose long battle with dementia was the subject of a cover story in New York Magazine in May, died on September 18.
She was a resident of Ridgewood for more than 25 years; before that she and her husband, Lewis A. Wolff, who died in 1984, lived variously in Guttenberg, Franklin Lakes, North Haledon, and Fair Lawn for more than 35 years.
The oldest child of Albert and Lena Vanderwerf, she was born in 1925 in Paterson and grew up in Prospect Park, where she attended Eastern Christian Academy. She became a reporter for the Paterson Evening News in 1943, and worked there, as a military reporter during the war and after as a general assignment reporter, until the birth of her first child in 1953.
In North Haledon, she was elected to the school board and served as president of the North Haledon Free Public Library. She also served on the session of the First Presbyterian Church of North Haledon. She ran a public relations consulting business, specializing in corporate newsletters. She was a noted cook and for many years gave a series of popular cooking classes. In Franklin Lakes, she and her husband, the President of Force, Inc., an advertising agency in Paterson, opened the Wolff Gallery, specializing in fine art.
After the death of her husband, she became a marketing executive at two pharmaceutical companies, Ivers-Lee and Olin Hunt, and then at an online gaming company, Cyber Warrior. She retired in 2004.
The New York Magazine article, by her oldest son Michael, recounts her and her family's three-year struggle to deal with her increasing dementia and what her son characterized as a "life worth ending." In addition to Michael, who lives in Manhattan, she is survived by a daughter Nancy, also of Manhattan, a son David, of Maui, Hawaii, a brother, Peter, of Connecticut, and three grandchildren, Elizabeth, Susanna, and Steven, all of New York City. Her brother, Sidney, died in 1988.
A memorial service will be held at the Franklin Lakes Presbyterian Church, where she was a long-time member, at 2:00 on Saturday, September, 22.
.
yayagal
11 years ago
last modified: 9 years ago
This week, in the mail, I got the voters issues that the town sends out. One of the articles is to vote on whether you agree to assisted dying for the terminally ill. I was surprised since they imprisoned Kavorkian for that.
theroselvr
Original Author
10 years ago
last modified: 9 years ago
Our aging crisis: the need for a dignified death - September 14, 2013 : 6:14pm

In his final published work, “Mortality,” written while succumbing to esophageal cancer, Christopher Hitchens captures in one sentence the unavoidable truth of the dying process: “I don’t have a body, I am a body.”

No one understands this truism quite as well as journalist Katy Butler, who witnessed the prolonged process of dying that her once-formidable, war-veteran father underwent after suffering a stroke in 2001, devolving into dementia and then finally dying from pneumonia seven years later.

As doctors pushed life-support surgeries, new medications and cutting-edge interventions, Butler and her mother didn’t pray for a cure.

Instead, they wished for his death, all of which is chronicled in her troubling investigative memoir “Knocking on Heaven’s Door.”

The “end-of-life crisis,” or as Butler calls it “the caregiver crisis,” has hit epidemic levels as the number of Americans over 85 doubled to 6 million since 1990.

Baby boomers, like Butler, must now wrangle with what to do with sick elderly parents, asking questions of themselves they probably thought would never be fathomable: What can be done when a person lives too long? And has science gone too far in its mission to ward off death?

Through her experiences with her father, Butler is unwavering in her answers.

“Our optimistic science-worshiping culture wants to medicalize aging and make it nothing more than a collection of specific diseases that medicine can prevent or fix,” she writes. “But no matter what deal we make with the devil, nature outwits us. Dying can be postponed, but aging cannot be cured.”

These are bitter pills to swallow and many might fall in the trap of citing Dr. Kevorkian, death panels, and agism in health care as reasons why these end-of-life conversations should never start. But Butler argues that this very fear, our culture’s unwillingness “to engage with death until it is in our faces,” is what has gotten us so deep in trouble in the first place.

For example, 75 percent of elderly patients would rather die in their homes, yet 44 percent of them will die in hospitals, she writes. Last-ditch defibrillators, surgeries for incurable cancers and chemotherapy that only buys a few days continue to be the norm; while what she calls “Slow Medicine” �" home and palliative care �" remains on the fringes and is rarely covered by Medicare.

Meanwhile, about a third of Medicare patients will have surgery in the last year of their life and a tenth will have a surgery done in the last month of life, she writes �" costing us an estimated $158 billion to $226 billion in medical overtreatment costs.

But what is perhaps worse is the emotional and traumatic toll continual care for a dying relative takes on the survivors, which is the true core of her book.

When Jeffrey, Butler’s hyper-intelligent Wesleyan history-professor dad, who lost his left arm while fighting in Italy during World War II, suffered a stroke at the age of 79, he was reduced to something much, much less: “With the memories, mind and reading comprehension of a highly educated 80-year-old; the spoken speech of a 4-or 5-year-old; and the physical dependence of a boy of 6.”

He could comprehend his shortcomings, and it made him “miserable,” she writes. At one point, he even commented that he had “lived too long.”

The stroke devastated not one, but two lives. “The day before [the stroke], my mother was a talented amateur artist and photographer, a woman of intimidating energy, and a spectacular housewife . . . After the stroke, she cared for my father the way she cared for my brothers and me when we were 3 or 4.”

At 77, her mother had become one of the 29 million “unpaid, politically powerless, and culturally invisible family caregivers,” while Butler herself joined the 24 million baby boomers now tending to sick parents.

When it became necessary for Jeffrey to undergo hernia surgery, his cardiologist suggested that they implant a pacemaker.

The family agreed, unaware of the downsides of what was such an (they would only later find) unnecessary preventative treatment.

Now, Jeffrey’s heart would tick on, long past his time should have been up.

“Not having a pacemaker would not have guaranteed my father a quick or easy death,” she writes. “But having a pacemaker deprived him of his best chance for one.”

Despite the surgery �" or perhaps because of it �" Jeffrey quickly got worse. Like about one third of those over 80, he suffered from dementia. His eyesight went, then his mobility. He began misspelling words. Then he began to see things that weren’t there. He became bladder and bowel incontinent.

“I woke up some morning in a fury. Why had his doctors not let nature take its course? If the pacemaker had never been implanted, I thought, my father might well have been out of his misery, and so would my mother and me,” Butler writes.

The family begged his cardiologist to turn off the pacemaker, but he refused. Other cardiologists refused, as well.

In 2008, Butler’s father contracted pneumonia.

Knowing that sending him to the hospital would only prolong his suffering with “life-saving” procedures, they avoided calling 911. He eventually became sick enough to be accepted into hospice care, where he finally died.

Here is a link that might be useful: Our aging crisis: the need for a dignified death
deniseandspike
10 years ago
last modified: 9 years ago
I read a book quite a few years ago that touched on this subject. It was very thought provoking and it has stayed with me to this day. It's purely fiction but it really makes you think about what you would do if it were you. It's in the Alan Gregory series, but can definitely be read as a stand alone book.

Here is a link that might be useful: Kill Me by Stephen White

Elderly care & when to say enough

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