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My Sister and I just had a long conversation...another long conversation, concerning our father who has Alzheimers.  It wasn't pleasant.  He started down this path about 12 years ago, maybe more.  He currently is capable of dressing himself, and knowing when he needs to go to the restroom, he knows he enjoys a bourbon and soda on a Sunday afternoon when we pick him up and bring him home for a few hours from the hell, AKA Memory Care Facility, that he spends most of his time in.  He usually doesn't recognize us, and when we think he does, he probably doesn't.  He's a real good faker.

I love the man, don't get me wrong...but he knows how to fake it when he's unsure.  He had that skill when he was 40, and it's one of the few skills he has retained at the age of 85 yrs.  He can still laugh at a joke, but he can't tell one.  He can barely string 4 words together.  For all intents and purposes, he's unable to communicate.  Unless you are driving him to a doctor's appointment, at which time he waxes lucid for the duration of the trip, warning you of every red light, every tail light, every lane change, all of the traffic...and basically admonishing you every minute of the trip to slow down and be more carefull.

There have been times, trust me, when 10 minutes of this makes me want to press the petal to metal and swerve into the oncoming lane, swerving through the cars like some Hollywood movie chase scene.

Anyway, back to the conversation between my Sister and I.  I told her, after haggling about how much medicare care my Dad requires, that if I ever slip into this disease, I strictly forbid her, my wife, or abyone else who is around and cares about me, from lifting a finger to slow the disease down.  I told her that we both know damned well where the disease takes you, and it's not a trip a care to take at 45 MPH if I can take it at 85 MPH instead.  The scenery isn't that much different.  I said I don't want Excelon, Aracept, Namenda...none of that.  Nor do I want to be taken to a doctor for any reason.  If I'm on Death Row, I'd rather the wait be shorter than longer...cause I don't think being alive is the same as Life.  

We failed to come to an understanding.

I sucks having a parent with Alzheimers.  I can't imagine what it would be like if our Mom also had it.  How does one double unbearable?

My Dad is, other than his advanced stage of dementia, in pretty good health.  He had bladder cancer about 15 years ago, and prostrate cancer as well.  Both were treated.  A left over from his prostate cancer treatment is a sort of dribble, dribble incontinence, that he has been dealing with for almost as long as the first symptoms of his Alzheimers were noticed by my Sister and I.  That, of course, is still a constant.  He must wear Depends, and change them at least three times a day.

When he had his bladder cancer, and subsequent surgery, he was sent home with a catheter, and convalesced in a largely sedentary manner in rural South Carolina, just hanging out in a Lazyboy recliner most of the day watching TV and reading the paper.  My Sister and I were both living on the West Coast at the time, and were not involved in his care during this convalescence.  His lack of moving around contributed to a blood clot, which lodged in his lung...a pulmonary embolism.  That's a serious medical condition, and I'm no doctor, but it was caused by pretty specific conditions:  post surgery, lack of movement, sedentary convalasence.  He was prescribed a blood thinner in the aftermath of that episode...warfarin.

That was 15 years ago.

Part of the warfarin regimen requires periodic trips to the doctor for a blood test to see were his blood registers.  For most of the past 4 years, after we moved my Dad out to Oregon, that was every 4 weeks.  He was so stable that the doc stretched it out to every 5 weeks.  I could have kissed his feet.  Cause that was just one doctor trip.  Then there was the urologist, who insisted upon seeing him every 3 months, and who ran on schedule with the same regularity as Haley's comet.  For 3 years I took my Dad to the Urologist every 3 months so he could take out his instruments that surely must date back to the Spanish Inquisition and literally ream his urethra...just to "keep it open and unconstricted."  The last time I took him there the urologist suggested I give my Dad a Vicadin an hour prior to the appointment next time, "because he seems to expreience anxiety during the procedure."

Fucking A, I told him....it causes me anxiety just thinking about it.  Mind if I take one too?  How about a script?

When we first decided my Dad was losing it, and sliding into Alzheimers, it was 1999.  He was living in Ohio, and we both flew back there to talk to him about it, and we scheduled an appointment with a neurologist.  It was he who prescribed the Aracept, atfirst, and later the Namenda and Excelon regimen.  It remember as if it were yesterday the conversation we had with him, because the drugs weren't cheap:  Do they work???

Ehhh...he shrugged...we really don't know for sure, but they seem to slow it down with some people, and in any case they don't hurt.  That sort of throws the ball, so to speak, in your own moral court, doesn't it?  So we got him on the drugs.  And at that time, while his short term memory was definitely impaired, he was self aware, and knew who everyone was.  He just couldn't remember things that had happened two weeks ago, or how to drive to the airport any longer.

Now....flash forward 13 years.

My Dad is a hollow shell of the person he was a decade ago.  He has lost almost every memory that was once deeply ingrained in his consciousness.  He can't recognize photos of his parents.  He doesn't even really recognize my sister and I.  Even though they were divorced long ago, our mother lives close by and she's almost always part of our get togethers with Dad.  Married 25 years, two kids together...he doesn't know her from Jack.  Or would that be Jill?

To me, that isn't living.  And if it were me, and I knew what was in store, I'd put a gun to my head.  That's not melodrama.  I can't imagine that my Dad had any more desire to end up this way than I do.  He was always so independent, and always so reluctant to ask anyone for help...proud.  

That was the crux of the conversation I had with my sister, and while it never became a heated conversation, there was undeniably a chasm between the two of us with respect to how best to deal with our Father's medical "needs."

My position was that "medical needs" were defined by medical emergencies.  Her position is that "medical needs" are defined by prudent intervention and upkeep.  So...she subscribed to a regimen of repeated, frequent medical appointments with doctors with whom our Father cannot communicate about complaints that he does not have, but for which they are only too glad to see him and bill his insurance company, and him for whatever portion they don't cover.  He walks away the same as he was before entering.

It ended with us getting a little tense, but not angry or judgemental, at which point I told her...Linda...if this ever happens to me I want you to promise me right now that you won't string this purgatory out.  I don't want any drugs, and I don't want any care.  I just want it to run it's course as quickly as possible...because you can't tell me that the life our Dad is living is anything remotely similar to what you or I would want to spend the rest of our lives enduring.

What do you Want From Life?

Originally posted to Keith930 on Wed Aug 08, 2012 at 05:18 PM PDT.

Also republished by KosAbility.

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Comment Preferences

  •  Keith, I am so sorry. My mom had dementia (non- (28+ / 0-)

    Alzheimer's) and a variety of other terrible ailments in the final years of her life. She survived a year and a half on hospice when she received only palliative care. I never want to live like that. It is not living. I will jump off a cliff rather than end up as my mom did.

    I know what you are going through.

  •  I'm a child of Alzheimer's; I vote with you. (28+ / 0-)

    If I get it, put me in the 85 MPH lane.

    I hope you and your sister come to some agreement. There will come a point when you have to make medical decisions for your dad, and that's not the time to be fighting about it. Who's got Durable Power of Attorney for Healthcare?

    My mother's cause of death was listed as pneumonia. She was in the late stages of Alzheimer's, living on a locked ward, and hadn't been herself for years. When she was transferred to the ER by ambulance because of a urinary tract infection, my family came together and said, "No antibiotics." The UTI progressed to pneumonia within a couple of days. We stayed with her at the hospital around the clock, the nurses bathed her and changed her linens three times a day, and they kept doctors out who wanted to "do some tests". Her death was peaceful and painless.

    May we be spared.

    "Do your little bit of good where you are; it is those little bits of good put together that overwhelm the world." ~ Desmond Tutu

    by KelleyRN2 on Wed Aug 08, 2012 at 05:33:08 PM PDT

  •  Hey I am with you, Keith (18+ / 0-)

    don't string it out, if that is the way you have to go.

    My grandmother lasted years and years, and every so often you'd see signs that inside that semi-functional body was a real person - in torment.  No thanks.

    Thou shalt not kill, yes - but needst not strive officiously to keep alive.

  •  We Relocated My Mom After Cognitive Problems (21+ / 0-)

    began to appear. In her case it's not Alzheimer's, it's micro circulatory damage concentrated in several areas of the brain, confirmed by neurological testing. We're fairly sure she retains most of her memories, and she remembers some ongoing events at least for weeks after, but she too is almost unable to put sentences together.

    Fortunately we were in WA state at the time which has a very extensive advanced directive with questions about every conceivable situation. She filled that out easily --consistently with what she'd always told us in her earlier life-- so we don't have any questions.

    Basically from here on it's palliative care. She's seen by a visiting physician every few weeks in her assisted living facility but they're not doing testing or screening for almost anything. That advanced directive was a real anguish saver.

    In her case she's cheerful and cooperative any time anyone's around, but spends almost all her time either asleep at night or asleep in chairs. Nobody can find any sign that she's in pain or frightened. So there are some forms of dementia that aren't the kind of tragedy of Alzheimer's.

    We are called to speak for the weak, for the voiceless, for victims of our nation and for those it calls enemy.... --ML King "Beyond Vietnam"

    by Gooserock on Wed Aug 08, 2012 at 05:49:45 PM PDT

  •  My Sister has PAT, and she asked the current (12+ / 0-)

    neurologist about 7 months ago about taking him off of the Namenda and Excelon...he demurred.  He didn't refuse, he just said I wouldn't do it if it was my father.  The same docotor who, just 4 years ago, also demurred when asked if the was any clear clinical efficacy results that showed that these drugs actually treated the symptoms of Alzheimers, stated almost forcefully that if you take him off these drugs now, you can expect a preciptitous decline in his condition.

    I don't understand that.

    I smell CYA...and it smells like A.

    Oregon: Sure...it's cold. But it's a damp cold.

    by Keith930 on Wed Aug 08, 2012 at 05:52:31 PM PDT

  •  That's rough, Keith (7+ / 0-)

    I'm glad that you and your sister are not antagonistic, at least that's something.  I hope you can keep that up and come to a good compromise.

    I side with you, 100%.  Why put your poor father through all that misery?  His quality of life is so low, what's the point of trying to keep him "healthy"?

    I blog about my daughter with autism at her website

    by coquiero on Wed Aug 08, 2012 at 05:53:33 PM PDT

  •  Hmmm tough choice (18+ / 0-)

    But great diary.  

    My dad died this past April, in a matter of hours.  Went to the doctor with stomach pains, had surgery for a bleeding ulcer, but he had colon, lung, and brain cancer, all combining to kill him hours after surgery.  He also had a stroke during surgery so he tried, but couldn't, say goodbye. That was the toughest part and it was only a moment.

    My mom died over 20 years ago of cancer, but she had radiation and chemo, so we watched her waste away for almost a year.  That was hell.  

    I'll take the way my dad went any day.  Of course he didn't suffer from dementia, but I think I'd still feel the same way.  

    I feel for you.  

    ‎"Find out just what any people will quietly submit to and you have the exact measure of the injustice and wrong which will be imposed on them." --Frederick Douglass

    by Nada Lemming on Wed Aug 08, 2012 at 05:55:45 PM PDT

  •  If your dad got the disease when he was 70, it (7+ / 0-)

    is likely not hereditary (although you may have some risk factors). So you may not be at a particularly high risk to get it.

    •  I don't know about that. (5+ / 0-)
      Recommended by:
      JeffW, coquiero, ladybug53, Ahianne, weck

      My aunt got it at 70, another at 72 and my now my mther at 77. My third aunt had als.

      My dad had cancer. I am pretty sure that I am fucked.

      Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

      by Mike S on Wed Aug 08, 2012 at 06:22:10 PM PDT

      [ Parent ]

      •  whattaya gonno do aboutit? (2+ / 0-)
        Recommended by:
        ladybug53, weck

        Seriously...have you given it any thought?

        Oregon: Sure...it's cold. But it's a damp cold.

        by Keith930 on Wed Aug 08, 2012 at 06:41:36 PM PDT

        [ Parent ]

        •  I wil not put my family (5+ / 0-)

          through this hell. Hopefully if/when this stuff happens to me we will be enlightened enough that I can do to myself what we have been compassionate enough to do for our cats when their time came.

          If not I will find a way to end it with the least amount of pain for myself and my family.

          Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

          by Mike S on Wed Aug 08, 2012 at 06:46:15 PM PDT

          [ Parent ]

        •  So yes, I have given (2+ / 0-)
          Recommended by:
          coquiero, weck

          it a lot of thought.

          Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

          by Mike S on Wed Aug 08, 2012 at 06:46:54 PM PDT

          [ Parent ]

  •  I asked my life partner if she knew anything about (8+ / 0-)

    Oregon's death with dignity law, to which she replied, "I don't know a lot about it, but if they have drive-thru, I'm interested."  

    I must have picked the wrong time to try and make conversation.

  •  My step father is in the same (16+ / 0-)

    place as your father, essentially. He doesn't know any of us, he can ocasionally dress himself. It is the most heart breaking thing ever.

    Except it isn't. The most heart breaking thing ever is that now my mother is on that path. The constant repeating of stories. The constant forgetting things that she has done just 5 minutes before. She is undergoing chemo right now and in the span of 5 days took twice as many pills as she was supposed to. Yet according to her she doesn't have a problem.

    Tuesday is neurologist day. I think I may have to have her declared incompatent. That will be the worst day of my life, topping the day that I told the doctors to stop treating my father for cancer.

    I have had the same conversation with my wife as you had with your sister. We both agree with you except we don't want to go down that path at 85MPH, we want  to end it before we get that far. Of course now that I have watched it happen I can see that when you are on that path you don't know it, won't believe it and are happy the way you are.

    I have seen people die of cancer, aids, accidents and natural causes. Those are all horrible ways to go. But in the end there is a sort of relief for the families. This is far worse because whie that person is essentially dead their body goes on with someone else in it.

    There is nothing worse than that when that person is a personal hero that you love more than yourself.

    Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

    by Mike S on Wed Aug 08, 2012 at 06:19:55 PM PDT

    •  ((hug)) (7+ / 0-)

      be strong, and don't think you're not showing your love for your parents what ever your choice.  Remember, it's not your fault what ever happens.

      •  Thanks. (8+ / 0-)

        The one thing I do know is that I am helping her thorugh this. But it is my brother and his kids who have it the hardest. She is staying with them because he has the room for her.  I spoke with one of my nephews about it last night and can see that it is taking a toll on him. He is only 13 but has the heart of gold you always hope your kids will have.

        He told me that when he disagrees with her and tries to protect her she accuses him of being against her. It's an accusation I know well but I am 47 and understand all of this far better than he does. It broke my heart when he told me but the love I have for him increased exponentially. He din't say it with anger and hardly any saddness. It was more acceptance for the way it is and the knowledge that he was doing the right thing,

        He is only 13 but sees the world through 40 year old eyes.

        Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

        by Mike S on Wed Aug 08, 2012 at 06:38:04 PM PDT

        [ Parent ]

        •  Mike there are very classic stages of (10+ / 0-)

          Alzeimers that caregivers and family can be trained to recognize. It is often not that difficult to learn how not to trigger some of those reactions. The main thing is to understand the progressive stages and change accordingly.

          There should also be some support groups and other psych help for adults and children. This can be a long grief process which adds to all the other stress. With emotional support, your nephews will learn a lot about the tough sections in life's road.

          "People, even more than things, have to be restored, renewed, revived, reclaimed and redeemed; never throw out anyone. " Audrey Hepburn "A Beautiful Woman"

          by Ginny in CO on Wed Aug 08, 2012 at 07:05:45 PM PDT

          [ Parent ]

        •  the nuclear family misses some of this inter- (1+ / 0-)
          Recommended by:
          weck

          generational stuff. Those eyes will be on the road ahead when he has a family too. God bless all.

    •  I guess for me, after seeing my Dad's (9+ / 0-)

      precipitous decline over the past years while on Meds that, intitially, doctors were unwilling to say at the outset, unequivocably, that they were effective, they have uniformly proved to be hesitant to take him off of because of "potentional" downsides....I'm a little skeptical.

      My dad has been on these meds for 14 years now, and he wasn't the first.  So that means that these drugs have been used for, probably, 20 years.  You can't tell me that over the course of 20 years there isn't very definitive clinical trial data that says, without words like "may"...or "might"....what these drugs do or do not do.

      Don't tell me up front that it "might help", but 12 years later when I approach you to take him off the meds that it "will probably escalate" his decline.

      Which is it?  Don't show me the money, show me the data.

      And if their is no conclusive data, don't lay a guilt trip on me.

      Oregon: Sure...it's cold. But it's a damp cold.

      by Keith930 on Wed Aug 08, 2012 at 06:57:53 PM PDT

      [ Parent ]

      •  It took about 6 years for my (0+ / 0-)

        step father to reach this point. We've noticed problems with my mother for the last 2 1/2 years so it is possible that the meds did slow it down.

        Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

        by Mike S on Thu Aug 09, 2012 at 10:18:04 AM PDT

        [ Parent ]

  •  KEITH (0+ / 0-)

    I have cerebral palsey,i hope you don't think the disabled are of no use.

  •  When my f-i-l was in Alzheimer's unit, we asked (11+ / 0-)

    head nurse (and she was really good) when to discontinue other medications.  When he didn't recognize his wife, we discontinued Aricept. When he didn't recognize his son (who had become the brother rather than the sun some years earlier) we stopped all medications except blood pressure. We kept this one because if he stroked out he could continue to live an unlimited amount of time bedridden after a stroke. We allowed him to die peacefully and comfortably of congestive heart failure.  We didn't do anything to speed it up and nothing to slow it down.  It was the right decision for us.

    Please have the conversation with your sister again with a nurse to make informed, calmly thought-out decisions.  Peace to you.

    You have rights in Iowa!

    by deweysmom on Wed Aug 08, 2012 at 06:39:08 PM PDT

  •  The hardest part for me ... (7+ / 0-)

    about making the decision for myself, is that as awful as it looks from the outside looking in, is it that bad to live it? It's hard to get a handle on that, from the outside, and I say that as someone who was dealing with an aging parent, myself, for years.

    I mean, I know my own immediate instinctive reaction is ... yeah, check me out as soon as possible once the decline hits. But then, if you'd asked me at 18 if life was living at all once you're past 60, I would have said, no, it's not.

    Now that I'm in my 50s, of course, I've changed my take on that. And maybe if dementia sets in it would be awful to live it. But ... maybe not, despite appearances. Maybe you still can enjoy the feel of sunshine, for example, even if you can't express that enjoyment.

    I do believe I tend to overthink this.

    One thing's for sure, it's hell on the familial caretakers, and that's definitely a consideration.

    •  Sun-downing (14+ / 0-)

      That's all I have to say. Sun-downing.

       

      is that as awful as it looks from the outside looking in, is it that bad to live it?
      Sun-downing is what Alzheimer's patients experience in the evening. It's extreme anxiety because it's time for them to go home and take care of their kids, cook dinner, balance the checkbook, grocery shop, whatever.

      Anyone who has worked in elderly care knows about this time of day, the time the patient is supposed to go home, but people are stopping them from doing it.

      Yes, having seen hundreds of people experience this extreme anxiety of wanting to go home to be with their family and having all the doors locked behind them, yes, I think it's as awful from the inside. In fact, I'd wager it's much, much worse.

      P.S. I am not a crackpot.

      by BoiseBlue on Wed Aug 08, 2012 at 07:03:43 PM PDT

      [ Parent ]

      •  I can't even fathom the humanity and patience (10+ / 0-)

        and respect  for the elderly that is required to work in this field.  My Sister and shopped around for a good 4 months before selecting the facility that we placed our father in.  

        Here's our experience...and I suspect it mirrors many other peoples':

        The manager of the facility has either left or been replaced twice in the past 3 years.  The day to day staff changes much more frequently.  It is a burn out profession.  And it is a business model that demands profits.  Local managers come in...get to know the patients and their family, and are sometimes reluctant to jack up the fees as the corporate business model requires.  (And they are all corporate).  Regional managers come in and scold them for not jacking fees up...and the ones who budge are fired, and the ones who don't get promoted.  

        It is a business... and for familiy members who have to depend upon this business model, it it something you have to manage and stay on top of continuously....because if you don't, they will just keep jacking the rates up on you every 3 months...

        And yet, there's a fine line to be tread...how much of a Nazi, excuse the expression, should you be?  Sometimes the squeaky wheel gets the grease, but might the wheel that is too squeaky get no grease at all?  Might there be retribution built into the system, that you aren't there to detect?

        Oh yeah....believe me, my Sister and I have had all these conversations.

        All I can say is that I hope none of you go through this.

        Oregon: Sure...it's cold. But it's a damp cold.

        by Keith930 on Wed Aug 08, 2012 at 07:27:23 PM PDT

        [ Parent ]

        •  I worked in the profession for a number of years (7+ / 0-)

          What I found was that, yes, the head honcho at any given facility is probably more concerned with profits than anything else.

          But the lowest level employees, they care A LOT. The dishwasher, the CNA, the housekeeper, 80% of them care a great deal about the welfare of the residents.

          I haven't worked in the field in a long time, but gf still does and it stresses her out. Her concern is for the patients and those concerns aren't heard by the people who can actually force change in a facility. So she vents to others who feel the same way while they're on break.

          A break that is usually cut short.

          The people who work day to day with these people care a great deal. But you get a couple rungs up the ladder above them, and it's all smoke and mirrors. They are their for the profit. As long as it appears that Elderly Person X is being taken care of, there is no problem.

          P.S. I am not a crackpot.

          by BoiseBlue on Wed Aug 08, 2012 at 07:38:34 PM PDT

          [ Parent ]

    •  we watched a co-worker slide into Alzheimer's (3+ / 0-)
      Recommended by:
      chimene, blueoasis, weck

      and it was terrible for her. She was either angry at us for 'lying about her,' or when lucid, angry at herself for the way she couldn't help screwing things up. Eventually she was just angry.

  •  Watching them decline is the hardest part. (4+ / 0-)
    Recommended by:
    ladybug53, coquiero, chimene, weck

    I wouldn't worry about getting it.  However, if you are concerned make certain that you have in addition to your will and power of attorney (POA) a living will or advanced medical directive.  With a physician's guidance you can state very clearly what types of treatment you would like to refuse.  As treatment protocols change frequently I would revisit your living will yearly to make any updates.

  •  Mom and I are both nurses. (11+ / 0-)

    We have supported voluntary euthanasia like the Dutch have for decades. Both her parents had Alzheimer's and both of us had many patients in various settings whose families faced the difficult care and choices watching loved ones deteriorate slowly.

    I know from experience how difficult it is to resolve the differences between children. The possibility you may not have tried is to find a medical social worker to discuss the issues with. Seems to me your Mom might be included, she knew him quite a long time and might be able to relate anything they talked about on this.

    Your comment to your sister about not wanting to be kept alive any longer than is inescapable needs legal backup. Advanced Directives allow you to speak for yourself at any time you have lost the capacity. It allows someone who knows your wishes well to make decisions that may be more complicated than the directives cover. Your doctors office should have materials to start with and may be able to tell you what services are available to you to fill out the forms.

    The medical power of attorney is a very important choice. There should be more than one, especially if your primary is a spouse who might be in an accident with you. You should discuss what you want with your doctor, finalize the forms and get originals to the physician's office. Have originals yourself and copies that can be provided to paramedics and facilities you get care from.

    Really tough experience Keith. My parents are both doing well at 87. I only hope my kids will not have to go through anything like it with me, even with explicit advance directives and complete agreement on the basic concepts among us and their Dad.

    Thanks for the diary, it helps others understand the experience and think about what they want from life. I want to be functional, able to at least write LTE and comments at the GOS, and visit with family. Or give me a big IV shot of fast acting insulin. Painless.

    "People, even more than things, have to be restored, renewed, revived, reclaimed and redeemed; never throw out anyone. " Audrey Hepburn "A Beautiful Woman"

    by Ginny in CO on Wed Aug 08, 2012 at 06:51:11 PM PDT

  •  ((((Keith))))) (5+ / 0-)
    Recommended by:
    Ginny in CO, ladybug53, coquiero, chimene, weck

    Alzheimer's really is a long goodbye.  Having been through it with my grandfather and father in law I understand where you are coming from
      Hugs and peace to you and your sister.

  •  And a definite rec for The Tubes reference (4+ / 0-)
    Recommended by:
    Keith930, ladybug53, G2geek, weck

    I'll take a whole herd of Winnebagos please.

  •  At the risk of sounding like a heartless wench (16+ / 0-)

    I've already told my parents that if I am the child that they put in charge of such things, the very first time they fail to recognize me I'm giving them a lethal dose of something.

    They still say I'm the one who's going to be in charge of such things.

    I don't mean the first time they forget my name or anything like that.

    Here's this:

    My paternal grandfather had dementia. For a long time he would see me and know that he knew me, but he didn't know how. He still had emotional memory, so to speak, so when he saw me he knew I was important and that he missed me, but he'd get confused on how we knew each other or why we loved each other.

    Then one day he didn't know who I was. That was okay, it was expected. But when the day came that he didn't know who my grandmother was (the woman he'd been married to for over five decades) to the extent that when she was trying to get him to go to sleep, he told her through tears that he couldn't do it; "I've never been unfaithful to my wife," he said. "I just need to get home to her."

    That was the day that I knew he was gone, his healthy body notwithstanding.

    At the same time, my maternal grandfather was dying of cancer. My grandmother, his wife of four decades, told him "Sometimes I think I have it really rough, but at least you'll die knowing who I am, and if I had to trade places with her I would NEVER."

    My grandfather with cancer, who would die within weeks, agreed with her.

    That's no way to live. So I've promised my parents that they won't.

    My father is terrified of getting Alzheimer's because his father had it. My mother can't imagine anything worse that seeing her children's faces and not knowing who they are.

    So, yeah. I'm on your side. We're on the same page. I will do anything to spare my parents that. And I hope to FSM that someone spares me the same fate.

    P.S. I am not a crackpot.

    by BoiseBlue on Wed Aug 08, 2012 at 07:16:20 PM PDT

    •  as long as you know what you want, and (7+ / 0-)

      everyone else knows what they want, and they've all sort of had a discussion about it...it makes everything so much easier.

      I really don't understand the whole not talking about it part.

      My Dad always claimed he'd live to be one hundred...but he always, not to be too blunt about it, assumed he'd be fucking a woman half his age until he was one hundred.  Not peeing his pants every 3 hours.  My Dad thought he would be immortal.

      The irony is, with modern medical technology he may just prove to be immortal...but not in any way...any way whatsoever, that he imagined.

      Oregon: Sure...it's cold. But it's a damp cold.

      by Keith930 on Wed Aug 08, 2012 at 07:38:54 PM PDT

      [ Parent ]

  •  More unsolicited advice: Please contact your (5+ / 0-)
    Recommended by:
    coquiero, G2geek, chimene, WakeUpNeo, weck

    local chapter of the Alzheimer's Association.  They have caregiver support, caregiver and healthcare education and a large variety of resources to offer you, no matter where you live. Alzheimer's Association  They are there to help both the patient and the family.  

    You have rights in Iowa!

    by deweysmom on Wed Aug 08, 2012 at 07:56:39 PM PDT

  •  Very sorry for your sorrow. NT (1+ / 0-)
    Recommended by:
    weck

    "The true strength of our nation comes not from the might of our arms or the scale of our wealth, but from the enduring power of our ideals." - Barack Obama

    by HeyMikey on Wed Aug 08, 2012 at 08:49:57 PM PDT

  •  thank you so much, Keith and all who commented (2+ / 0-)
    Recommended by:
    Ahianne, weck

    here. Alzheimers is the fear of my life at the moment.

    I'm almost 65 and my DH (7 yrs younger) and I are both "orphans" now. His mother had some complicated sort of dementia(s?) and lingered in residential care for a number of years. My mother had depression, pancreatic issues, maybe was having TIAs and mini-heart attacks, and MAY have had the beginnings of dementia (both of our fathers went very suddenly, except 50 years apart!)

    so, neither my husband nor I have any real idea what might be coming, but I know we NEED to talk this out, with each other & with our one-and-only! I know we NEED to do the paperwork, etc. I really agree with Keith's idea of what makes life worth continuing to struggle for, and what doesn't.

    Teh DH keeps saying we'll do the paperwork when we get settled in the retirement location... well, we're still young and have all of our marbles, so we have a few years...

    "real" work : a job where you wash your hands BEFORE you use the bathroom...

    by chimene on Thu Aug 09, 2012 at 01:47:20 AM PDT

  •  I never looked at dementia and life decisions (1+ / 0-)
    Recommended by:
    Mike S

    quite this way before.  Thanks, Keith, for your interesting point of view and for bringing out commenters with such mixed experiences.  I learned a lot from this diary and have to do some thinking about having those kinds of directives in force.  I doubt that my group of loved ones would do anything together; I would hate for them to fight as much as I would hate to linger without thoughts.

    Please donate to Okiciyap food pantry. . If love could have saved you, you would have lived forever.

    by weck on Thu Aug 09, 2012 at 07:21:18 AM PDT

  •  I know this is a dead (0+ / 0-)

    thread now but I wanted to say one more thing.

    From cancer diagnosis to death my father lasted 6 years. The first 5 were mostly good but the last one was spent in and out of the hospital, mostly in. My father had always wanted to drive route 66 but couldn't find a retired friend who was able to do it. I had a week off coming so I decided to take the trip with him. 2 things happened that had a profound effect n me.

    In Oatman AZ we were sitting at a bar. My father was in the end stages so he had that skelatal look to him. People got up to move away from him and that royally pissed me off. He told me to calm down because for him that was far more preferrable than having them look at him in pity. It opened my eyes.

    The other was when we were in Winslow. Dr Kevorkian was arrested that day. My father was livid!

    The end of that week was when he really started to fail. We got back and he was back in the hospital within days. It would be his last month of life. Toward the end he was so weak and miserable that he asked the dr to end his life. Obviously the dr couldn't do that so I offered to take him up to his mountain house and help him do it myself.

    He couldn't allow me to do that because he was afraid I would be arrested like Kevorkian. It is the rules of our society that you must die in horrid pain with no dignity rather than helping yourself drift off in your own way.

    That trip with my father was the best thing I ever did. I was able to talk with him like never before. Things that he said he regretted were put on the table and one of those was something that I felt was the best thing he did while I was growing up. The peace that he got from that alone made it worth it. Questions I had were answered, except for one glaring one that he couldn't tell me because it was still classified top secret, and I was able to tell him how much I admired, respected and loved him.

    There lies a huge difference between what I went through and what I am going through now. No matter how many times I tell my mother those things now they slip away.

    Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

    by Mike S on Thu Aug 09, 2012 at 11:11:23 AM PDT

  •  Advance Directives (0+ / 0-)

    Different states have different laws on this, and some have even produced their own forms.

    Advance Directive - Maine

    Advance Directive - Massachusetts

    An AD specifies how you want your medical care handled if you are unable to make decisions of speak for yourself.  you get to say exactly what you want under specific circumstances in an AD.

    Part of filling out an advance directive is assigned the responsibility of who will be responsible for carrying out your directive.  That is your Health Care Proxy.

    Be sure to discuss your wishes with your family members and especially the person you assign the proxy to.  Be sure to give copies of your documentation to everyone involved.

    A doctor must Invoke a Health Care Proxy before that person can make decisions on behalf of a patient.  Only a doctor can Revoke a Health Care Proxy (in those situations when the illness is reversible).

    And one last thing; when you are incapacitated, you should also have a POA so that someone can take care of your personal/financial affairs.  A copy of a POA is not a valid document.  You must give the person you assign as your POA the original document.  I found that one out the hard way.

    I fall down, I get up, I keep dancing.

    by DamselleFly on Thu Aug 09, 2012 at 07:43:15 PM PDT

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