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Please, please, be really specific about end-of-life care!

  1. Jul 28, 2011 #1

    turbo

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    It can save your family a lot of suffering and strife. Today my mother-in-law strode out of the house and headed down the street. She got almost to the very busy route 201 before the respite-care worker managed to slow her down until my brother-in-law's girlfriend helped corral her and get help to get her into the car and take her home. The respite-care people are not trained or allowed to use physical restraint.

    My mother-in-law is ~95 and physically healthy, but badly demented. Two-three of the siblings insist on keeping her at home, but it is increasingly evident that she needs to be in a nursing home. 4-5 siblings are now willing to get her into a nursing home, but the conflict is tearing the family apart. We have people in their 50s and 60s at each others' throats. People who used to love to get together at the family camp for holidays, and who would do about anything for each other.

    If you don't have a living will, make one. If your parent doesn't have a living will, please encourage them to make one. Some aspects of my life are a hell because I'm watching this family getting torn up over a lack of planning and clear intent. This spring/summer has been especially stressful, because my wife has been under undue strain, and there is nothing that I can do to help.
     
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  3. Jul 28, 2011 #2

    dlgoff

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    My dad didn't have a living will when I took him to the hospital to find out why his confusion was getting worse. It turned out to be cancer that had spread everywhere, including his brain. Thank god the hospital personal was able to get him hospice care and into his home town nursing home (where mom could be there) based on my signature. So you don't always have to have a living will. Maybe I was just lucky though.
     
  4. Jul 28, 2011 #3

    turbo

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    I'm glad that you lucked out that way. With large families (lots of children) and lots of differing opinions, it can get very nasty. It's so sad to see siblings that have been bonded for 50-60 years turn on each other.
     
  5. Jul 28, 2011 #4

    dlgoff

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    In my situation, it happened very fast. Your situation is much different turbo and I feel for you. Wish I could help.
     
  6. Jul 28, 2011 #5
    I'm sorry to hear all of this. My father was already in a nursing home when he died and my mother went from living independently to dead in 5 days. There wasn't much family strife during those sad times and even so we found little things to fuss about. I wish your family the best.
     
  7. Jul 28, 2011 #6

    turbo

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    Thank you, dlg. It is so depressing to deal with this. An extended family that I have loved and worked with with for 30+ years is tearing itself apart due to lack of planning and lack of specific intent.
     
  8. Jul 28, 2011 #7

    dlgoff

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    You and your wife need to look out for yourselves. I know that dealing with my mother can really get me down and I've decided to put myself first; else I'll be no use to her. Too much stress here.
     
  9. Jul 28, 2011 #8

    rhody

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    Don, Turbo,

    I have been where you have been or are as well. Situation was slightly different in that there are no siblings on my side and only one sister on wife's side. We have weathered the storm and still are friends, it is much harder when the are lots of siblings at varying distances from your loved one(s). We created a living trust (for wife's parents), and got my wife and sister assigned as trustee's, we had physical power of attorney, medical power of attorney, and advanced medical directives for do not resuscitate, etc... The time period this took was about 3 years, and I am sad to say both of our parents have passed on both sides.

    Don offers good advice Turbo, and scientific studies prove it to be true. People who spend extensive amounts of time caring for a loved one, suffer health consequences within a year or two of them passing. My wife's Dad passed late in 06, and she was diagnosed with breast cancer 4 months later. I am happy to say she is cancer free 5 years this December. She even admitted of "caring too much" if that is possible (after having to deal with cancer as well). You do the best you can to get through it.

    I constantly have to remind myself there is a beginning, middle and end to everything. That thought helped at times. I am sure you have probably heard of it, but I will mention it for those who may not know about it, "https://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-Illnesses/dp/0446610410"", by Mace, and Rabbins. It is a good read, and worth the effort. It gave me insight as to what to expect and how to best handle each situation as things progress at the end of life.

    At a bare minimum, I would recommend a http://www.google.com/aclk?sa=l&ai=...=g12livingwillsz&rct=j&q=living will&cad=rja", I got one for my Mom (online, see link), customized it, she read it and agreed to everything, and it was witnessed, notarized and stored in a safe place. It help speed the probate process and knock on wood everything went smoothly. Make sure the person as the main executor has a copy, and if you have a lawyer that he or she keeps the original. You will need it when after the loved one's passing, someone needs to be appointed a personal representative for the loved one's estate. This does NOT apply if you have a trust, that is a whole different ball of wax, you need a financial adviser for that, and an tax attorney to file the correct paper work.

    I hope you make it through this difficult period unscathed my friend. There is no handbook for it, and for it to work cooler heads need to prevail.

    Rhody...
     
    Last edited by a moderator: May 5, 2017
  10. Jul 28, 2011 #9

    turbo

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    Thanks, Rhody. One of my schoolfriends from 40+ years ago and one of my closest buddies to go 4-wheel-driving and fishing back then is my brother-in-law. His wife is one of the adamant "keep mom home" sisters, and today she was less than honest about what happened with my mother-in-law today. He and I get along well, but his wife is so dead-set against a nursing home for our mother-in-law that she is willing to hate and bad-mouth any of her siblings who think that option might be best.

    This crap, and uninformed persons and unrealistic expectations (including fantasies about how their mother would be better off at home with care-takers with NO health-care experience) are killing us. There is an older sister that is bad-mouthing most of her siblings publicly because "they want to throw our mother away" because some think a local nursing home (highly regarded) might be best instead of home health-care by untrained amateurs.
     
  11. Jul 29, 2011 #10

    Danger

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    I have been seeing the term "living will" for half a dozen years now, and I still have no idea of what the hell that means.
    I have a will, and it was obviously made while I'm living. Unless ouji boards come with a printer interface, all wills are made by the living. I also never understood that crap about "being of sound mind and body..."; if I were of sound body, I wouldn't be making a damned will.
    Anyhow, your mother-in-law obviously needs to be in some sort of care facility, be it a nursing home or a full-blown hospital. Hell, I'm younger than you, let alone her, and I'm going to have to move into one soon. I could tell you bloody nightmares about my mother, but leave it suffice to be said that I blew off checking on her at home one weekend because the wife was in one of her very rare romantic moods. My cousin, who has keys to the place and is essentially my guardian as well as Lumpy's, happened to stop by (she doesn't live in the same town). There was no answer at the door, so she let herself in and found the old thing sitting on the floor beside her bed. She slid (not fell) out of bed (if was 6" off of the floor), and then couldn't stand up. She had been there something like 40 hours when Gail found her. A couple of weeks in the hospital, and then into a nursing home. That wasn't exactly a treat either, because I don't know whether or not there were any real nurses around and the doctor was an idiot. Also, she was in a room with another woman, separated by only a curtain. She was in there for 2 years, then died 2 1/2 years ago a couple of weeks short of 97.
    Having recently been dead, and gotten over it, I stand by my original opinion that only "brain death" counts. My will, and my instructions to everyone who matters, is that I want "heroic measures" to be taken as long as I am not in a vegetative state. As an Atheist, I know that this is my only time around and that my life has no meaning whatsoever to the universe. I therefore desire to hang around for as long as possible... as long as I can think. If the EEG goes flat, rip out anything that still works, give it to someone who needs it, and throw the rest of my *** on a fire somewhere.
     
  12. Jul 29, 2011 #11
    Its specifically for what happens when you are still alive yet unable to make your own legal decisions due to mental or physical incapacity. It specifies who will make decisions for you and probably guidelines for those decisions as well.
    http://en.wikipedia.org/wiki/Living_will
     
  13. Jul 29, 2011 #12

    Danger

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    Ahhh...
    Thanks, Stats. I never needed that, nor did my mother, because we both appointed Gail power of attorney (me after Lumpy bought the biscuit and left everything to me). She knew what Lumpy wanted, and she knows what I want. She is also my sole heir, with the exception of my Roadrunner which is going to one fellow, my 4x4 El Camino which is going back to the guy who built it, and a couple of things that I won't specify because they aren't entirely legal which go to someone who I will also not specify for the same reason. (Actually, I've already signed half of my house over to her to remove any guesswork. That wasn't a stupid move on my part; she put a few grand of her own money into the financing needed for me to keep the place for a couple of years. I owned the place free and clear, because my grandfather built it, but I had to borrow $65,000 to make it habitable enough for me to move in. :frown:)
     
  14. Jul 29, 2011 #13

    rhody

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    Turbo,

    If the person who is the squeaky wheel and has angst were to read the book, the 36 hour day, would it help ? She may be firmly entrenched, but if not after doing so, may change her mind. You say that 4 out of 5 are now in agreement she needs to be in assisted living alzeheimer's unit or nursing home, what if the four take a vote and then act on their own ?

    Rhody...
     
  15. Jul 29, 2011 #14

    turbo

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    I was not really specific. There are seven siblings and at least 2, possibly 3 are insistent that their mother needs to stay home. They also happen to be the most vocal family members, and the ones who hold grudges forever. This family will never recover, I fear.
     
  16. Jul 29, 2011 #15

    turbo

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    My wife and another sister are about to bail out of the home-care brigade. It's really sick how much brow-beating that they are subjected to and it's very destructive to our own families, since the abused siblings have to come home and deal with the abuse. Even talking it out is tough.
     
  17. Jul 30, 2011 #16

    Danger

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    Turbo, I hope that you know how fond I am of you. I consider you a friend, so I'm going to tell you something that you might not appreciate. It's what I would tell you if you were sitting across a table from me sharing a jug of beer. The basis is that the ex (W; formerly and once again NW) has the same damned type of family. It's as if the whole f'in' bunch of them popped out of a Jerry Springer wet dream.
    My advice is—bail. Ignore it. Don't take sides, even your wife's. If you do, someone at some point will use it against you to make your life miserable. Get as far away from it as you possibly can. Retreat to the garage and build yourself a BD5J, or a boat, or a neutron bomb. Go to a beach and recreate Mount Rushmore at 1/4 scale out of damp sand. Start collecting stray turtles (although if you find one tatooed "Roger", send it back to Evo). Do anything that you can to stay out of the line of fire. If worst comes to worst, slip across the border and I'll put you up until it blows over.
     
  18. Aug 1, 2011 #17

    dlgoff

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    I've been thinking about this and just wanted to note that when I was dealing with my fathers impending death, that I had support from a member here. I want to keep this members name anonymous, but it was very important to know that I had someone to turn to. Thank you anonymous member.
     
  19. Aug 1, 2011 #18

    turbo

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    I have some personal support from a couple of sources (not here) that I treasure. One is a long-time friend who is going through something similar with his mother (who I love right to death!) and he goes to visit her at the nursing home every day. She was getting up at all hours of the night and firing up the stove to "cook stuff" or "make coffee" etc, and it was getting dangerous to live in that house without 24/7 care. I love that woman, and I love her sons. The two of them could not reasonably have been expected to provided good medical care for her on their own, but that is the only viable option for many people, since the US doesn't has a reliable system under which she could have been covered. One of her sons is a professional musician (though he's not exactly rolling in cash) and the other has a small earth-moving/excavating company. How can these guys manage to provide 24/7 coverage for their mother and still manage to make a living?
     
  20. Aug 2, 2011 #19

    rhody

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    Turbo,

    The truth is they can't, at least not in the long term, no one can provide the care she needs other than in a well run alzeheimer's unit, what you said in an earlier post:

    The hold out relatives are not dealing with the "real" world that the impaired loved one finds themselves in. Everyone has to deal with their own conscience on important health decisions for their elderly loved ones. You have made your wishes known and should not feel guilty that you could have done more. I had to make a tough call a few years ago for my Dad (being an only child, there was no drama). Looking back, I am glad I did, and have no regrets. I am sure it extended the quality of life for my Mom substantially, and being so far away from them, was the best course of action considering the circumstance.

    Rhody...

    P.S. There are tests that social workers and or Doctors perform to determine if it is "safe" to have someone living alone, even with a loved one who is struggling to care for them. They have the power authorized by the state to assume care for someone who needs to be cared for in a nursing home that has facilities to handle alzeheimer's patients. That is a course of action of last resort, however.
     
  21. Aug 2, 2011 #20

    turbo

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    New development. Three of the most vocal hold-outs apparently got together sometime last week, and decided that it's time for their mother to be in a nursing home. They never called my wife, the sister that she's close to, or their brother. The "good" sister is taking care of their mother today, and found all this out tangentially. She's abdicating all responsibility since she was cut out of the discussions, and my wife is abdicating after her shift Fri-Sat of this week.

    Does anybody want to buy a nice camp on a very beautiful clear-water lake in Maine? I know of one that is going to be on the market very soon. There is no point in us continuing to pay taxes and upkeep on a camp that we can't use because the family's attitude is so poisonous that we don't want to go there. My wife and I and the "good" sister and her husband bought a nice Shoremaster dock and a float a few years back that the kids can swim to and play on. Nobody else was willing to chip in, but we thought it was nice to make the place more usable. Now, we are unwilling to go to camp because of the nastiness.

    BTW, my wife and I have no kids, and the decent sister's daughter is long grown and gone. We did it for the sake of the children and grandchildren of the other siblings - the ones who have been so nasty.
     
    Last edited: Aug 2, 2011
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