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

[turbo]

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.

 

[dlgoff]

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.

 

[turbo]

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.

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.

 

[dlgoff]

In my situation, it happened very fast. Your situation is much different turbo and I feel for you. Wish I could help.

 

[Jimmy Snyder]

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.

 

[turbo]

In my situation, it happened very fast. Your situation is much different turbo and I feel for you. Wish I could help.

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.

 

[dlgoff]

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.

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.

 

[rhody]

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.

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/dp/0446610410/?tag=pfamazon01-20", 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...

 

[turbo]

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.

 

[Danger]

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.

 

[TheStatutoryApe]

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.

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

 

[Danger]

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. )

 

[rhody]

Thanks, Rhody.

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.

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...

 

[turbo]

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...

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.

 

[turbo]

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.

 

[Danger]

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.

 

[dlgoff]

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.

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.

 

[turbo]

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.

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?

 

[rhody]

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?

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:

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.

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.

 

[turbo]

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.

 

[rhody]

Well, that is good news, they may feel guilty that you were right and don't want to face you, having said that knowing how concerned you were for her, that is a bit selfish and cruel. Hopefully your strained relations are not to the point of never speaking to each other again. With your 30+ year history of mostly good memories, that would be a shame. It is funny how extreme situations bring out, for some, the best in us, and for others, the worst. They say time heals all wounds, I tend to think of it as not heal, but at least dull the bad ones. For you family's sake I hope there will be healing someday, maybe not now, but in a year or two, when fond memories of holidays and vacations that are now empty without your family's presence take hold.

Rhody...

 

[turbo]

Thanks, Rhody. A couple of the hold-outs are extreme in their views and hold grudges forever, so there is probably no hope of reconciliation with them. This all could have been avoided if their mother had been quite specific about end-of-life care, including nursing-home care should she become mentally incapacitated. I'm sure that she would have wanted to avoid tearing the family apart if she had considered the possibility of dementia back when she had her mental capacities.

 

[Greg Bernhardt]

I volunteer at a Hospice center (I'm actually there now) and see family quarrels almost on a daily basis. I sympathize with you Turbo and also strongly urge family members to discuss end of life care and get it documented!

 

[turbo]

Thanks, Greg. My wife and I both have living wills, in addition to our last wills. We encouraged her mother to do the same, but she never wanted to confront it and get it done. The result is a family that is badly torn apart. It's really sad to watch - and VERY stressful for me because I have to stay on the sidelines and can't do anything to avert the damage. The best I can do is concentrate on making sure that my elderly father is doing OK, so my own family doesn't have to go through this.

 

[turbo]

Members with parents should make certain that their parents' wishes for end-of-life care are documented, notarized, with copies filed with a lawyer, in case you are incapacitated or otherwise unavailable to make their wishes known. You should also make sure that YOUR wishes are known in case that you are badly injured or comatose.

My wife and I both want to decline extraordinary measures to keep ourselves alive, and we are both organ donors. These considerations are important to us, and we are both pledged to honor each other's choices. I'm so old and broken-down now that most of my parts are probably not worth passing on, but maybe my corneas can save someone's sight and maybe my kidneys could get a couple of people off dialysis...

 

[turbo]

Some of the most radical women in my wife's family are exploring the local nursing homes to see what is available. They had the opportunity a couple of years ago to get her into a home that is really close and well-regarded (with a long waiting list), but blew that off. I am beginning to hate some of my in-laws.

 

[GeorginaS]

Danger, just as an FYI, where we live it's called a Personal Directive. The courts found that the term "Living Will" didn't make any sense either.

 

[turbo]

Yesterday, my wife finally cut the cord and left her more poison siblings to take care of their mother. One sister quit after not being informed that their mother had gotten down the street to the very busy Route 201 before the caretaker could stop her and enlist help to get her back home.

The straw that broke the camel's back for my wife was a very significant change in her mother's medications that nobody felt that it was necessary to inform her about. Finally! Maybe I can live a less-stressful life without all the bull. I hate to see my wife torn and stressed, and that was a constant strain.

 

[KingNothing]

Hi guys. I am wondering if anyone can give me some tips on how to talk to my parents about whether or not they have living wills. My dad is 72 (with terrible genetics) and I don't know how to bring it up politely.

 

[turbo]

Hi guys. I am wondering if anyone can give me some tips on how to talk to my parents about whether or not they have living wills. My dad is 72 (with terrible genetics) and I don't know how to bring it up politely.

Maybe you could suggest a bit of estate-planning. Any decent lawyer will offer to draw up Living Will documents as part of that package.

 

[rhody]

Hi guys. I am wondering if anyone can give me some tips on how to talk to my parents about whether or not they have living wills. My dad is 72 (with terrible genetics) and I don't know how to bring it up politely.

Maybe you could suggest a bit of estate-planning. Any decent lawyer will offer to draw up Living Will documents as part of that package.

King,

I have seen this play itself out more than once now, I consider myself by NO MEANS an expert in this area, but, my experience is that until your loved ones are faced with some hard choices (and being still of sound mind, mind you) they will be hesitant to draw up a will or as turbo has suggested go for legal guidance on estate planning. In our situation, all family loved ones were present, and there was plenty of heated dialog over this as you can imagine. A united front (if one can be established) before going into the meeting is important too, to let your parents know you (the siblings) are all on the same page. I hope this helps, even a little in your situation.

Rhody...

 

[turbo]

Things are not better on the family front because the haters in my wife's family are dedicated to their vendetta. Now that they have come around to the realization that their mother really needs skilled nursing care for her dementia, they are entirely unwilling to forgive my wife and her next-older sister for pressing the issue. We have a bunch of women in their late 50's to mid 60's that are willing to crap all over a couple of sisters who realized early-on that the family-members didn't have the training or skills to take adequate care of their mother. It's really sad. PLEASE make your last wishes crystal-clear, and make your living will inviolable!

Edit: At least my wife and I are tight, and we treasure our lives with our dog. We can ignore the hate and stay close. We have neighbors that understand, and that's nice.

 

[dlgoff]

Edit: At least my wife and I are tight, and we treasure our lives with our dog. We can ignore the hate and stay close. We have neighbors that understand, and that's nice.

And you have us here. Virtually i.e.

 

[turbo]

And you have us here. Virtually i.e.

Thanks, dlg. It really hurts to see so many once-close family ties cut. Two of the sisters and their husbands and children used to get together a lot, including every single Thanksgiving and Christmas. Now one of the sisters is so enraged and spiteful that she won't even speak when they meet - she'll just turn away.

My wife and her closest sister spend time together and we share berries, produce from our gardens, etc, and her husband comes over to lend a hand whenever there is an electrical mystery afoot - great troubleshooter. Still, that's about all we've got left of a family of 7 siblings and their spouses.

 

[Borek]

I think they don't like your wife and her sister because they are guilty of predicting what have happened. Nobody likes messenger with a bad news, and that can be the way they see it. You know - they were telling it is necessary and finally it happened, so it is their fault.