sistersunnie

"what do we really owe our parents...and for how long?"

Sister Sunnie
December 3, 2019
last modified: December 3, 2019

Someone mentioned this should be a seperate post. So I'm throwing the ball out there......

Comments (143)

  • Lars

    I think that people are born with certain inherent personality traits and that environment may play some small part in changing it, but that it is difficult. One example is my nephew, who was diagnosed as a psychopath. He has been to many psychiatrists/psychologists, and they have all told my sister that there is no amount of therapy that can change his behavior. There are some medications that have been prescribed for him, but he won't take them. Prescribed medications indicate that the problem is physical in origin rather than environmental. My nephew's father had some of the traits, although not as severely, and everyone tried to talk my sister out of marrying him. Now she is suffering because of her choice.

    I also feel that I was born with my own personality, but my father believed in the environmental approach to personality and tried to mold me into a replica of himself, but that absolutely did not work. I've always had a strong sense of my personality and who I was from at least from the time I was four. Nothing in my environment was going to change that, and I had to change my environment in order to feel comfortable. I do think that a supportive environment can be helpful to some people, but not everyone. I think it is helpful for me, but not my nephew. A negative environment (such as what I grew up with) can have negative effects such as causing resentment, but I do not think it will change the personality.

    The "Nature vs Nurture" debate has been going on for some time. I think both influences are in effect, but I think the "nature" influence is the stronger one and more difficult to overcome. I know of one pair of gay white parents who adopted a child of color that attacked the parents once the child had become a teenager, even though the parents had given the child a loving home and all the support the child could have wanted. Still, the child had biological differences that were difficult to overcome. This is a rare case, I think, but I do think it illustrates that biology can easily trump environment. It depends on how strong the biological factor is, and that varies greatly. Animals (including humans) are born with instincts, but these can change or be manipulated through selective breeding, which is biological and not environmental. In the case of dogs, I do believe that they can be trained, but I also think that it is dangerous to believe that certain dogs can be trained never to be violent, which is why people say that their dogs are friendly - until they are not.

    In my own case, I know that I am descended from a long line of cruel and violent men. However, I do not feel that I have inherited those traits, as I consider myself to be completely non-violent, even to the extreme of refusing to defend myself against violence. I would defend loved ones against a violent attack, but not so much myself. When the draft board tried to draft me for the Vietnam War, I told my psychologist/therapist at the time that I would refuse to pick up a gun and that I would never shoot a gun or try to kill anyone in any circumstance. He wrote a note for the draft board, and I was certified 4F. My father was a WWII veteran, and he did not want me to be drafted either.

    I think that what we owe our parents might be tied to what we inherited from them either from environment or from nature. It is a difficult call.

  • texanjana

    Well said, Runninginplace. You articulated many of my thoughts.

  • jmck_nc

    Runninginplace, you must be so frustrated. You are right... the only thing to do is to let it go. I'm glad you have siblings who are close and supportive.

  • aprilneverends

    Runninigplace articulated many. many of my thoughts too. Only I have a feeling I interpreted them differently:)

    Yes, my husband knows what to do with my remains. Might be a complicated deal too. But I rely on his promise.

    (he gave me his promise long before he became my husband. But I'll try to make things easier on him. In terms of my remains)

    If in a month or two or three somebody writes here that I'm dead, and I took my own life-what do you think your reaction will be?

    You think you'll understand? You'll root for my decision?

    Uh-huh. 'fcourse.

    And you don't even know me.

    And then when I'm in a wheelchair and with a feeding tube and I somehow swing it still, while already being a complete burden-you'll understand?

    'fcourse! You'd think so.

    But in reality, no. No, you'd say "so, there are so many people in wheelchairs and feeding tube, and they sit there with utmost dignity, and still don't do that" You say "Gosh her kids are still so young". (which they are. So no way I don't do everything in my power to NOT burden them with my persona. Which, to a degree, means leaving them. Far behind..

    It's very hard to do. I'm in the midst of it. Of deciding. So I tell you-it's hard to do )

    You think many things, and very few of them are "Oh I'd do exactly the same in her place"

    Only when I'm in that wheelchair and feeding tube and mind fleeting away-then you, like"hmmm"

    So I need my mind to be fleeting away first.

    Then it becomes very hard to do that. Because I don't know how exactly and in what direction my mind will be fleeting. And there will be people there who don't want any problems and they'll be watching over me.

    (I mean in a good case..somebody will be there, right? In that facility I'm supposed to welcome? Oh I'd be a great hit there, I'm sure.. Great fit. Great hit. Lol)

    So there's a very fine line here.

    I'm already a burden. And my family doesn't happen to think so. They happen to think I'm all that.

    Also, I can still be useful, and hopeful, and all. I myself want to wait around, see what happens, you know?

    So now-it's too early.

    And when I'm already not, and my family finally gets the drill-it's too late, I can do zilch about it.

    It's not like I'll have that special day X , clock strickes midnight, Cinderella runs and looses her shoe, what an interesting fairy-tale.

    That btw doesn't end with me. To me, it's like everything ends with me. To others, the Earth is still spinning.


  • blfenton

    That's a problem for Alzheimer/Dementia patients. Some of them, my mother included, would prefer to no longer be here but because they are no longer of sound mind, they can no longer make that decision. They can't even dictate when they are still with it that " if I no longer know my family then I choose assisted death", or "if I can no longer feed myself then I choose assisted death".

    Assisted death is legal here but you have to be aware enough to understand the choice you are making a week before, the day before and the day of the scheduled date. The 90 year old MIL of a friend of mine made that choice 2 months ago.

    She had been diagnosed with a brain tumor that had been slow growing until it started to grow faster. The doctor was very honest with her about what the next few weeks was going to be like and how difficult her death was going to be and so she chose a different route. Her family supported her.

    What was interesting was that a friend of hers had chosen that same route several months ago for a similar reason and she was shocked at how mean her friend was to her family and how dare she take her own life. Until she was in the same situation and then she understood. She regretted her reaction and how vocal she was about it.

    We just never know and for me, it isn't up to me to judge.

    aprilneverends - Whatever you choose I wish you peace and comfort and smiles for however long you are with us.

  • Olychick

    April, whatever you choose is your choice, of course. Not knowing your circumstances, none of us can say what we'd do in your place. I can say, if I hear you died, I would feel sad because I enjoy your contributions here and imagine you'll leave an unfillable void for your loved ones.

    But one thing I've always wondered about for people who decide it's "time" is what if a cure/work around/life improving medicine/contraption, whatever, is just around the corner? Maybe that's too Pollyanna-ish, but would your loved ones wish you'd made it just a year longer to take advantage of that new technology?

  • aprilneverends

    Thank you guys, you're very kind, and I feel bad.

    I feel particularly bad, because it sounds like when I wrote whatever I wrote I was very sad..which is not exactly true, well not today-I'm actually in a pretty good. just a bit too animated mood. For no good reason either)).

    My points still stand of course, and they are..well whatever, maybe when I'm back to my usual self. But what I meant, it's already almost easier to live eternally than to die in a way that'd be I don't know..good for everyone involved

    on your terms? people won't be happy. on their terms? they won't be happy either. On some third party's terms? (war, murder, act of terror?) Well that's definitely not.

    So what's one to do, really? It's really hard to appease everyone, under these circumstances..))

    And no one lives eternally either

    I looked into assisted death, blfenton . I agree with everything, and yes..Many minuses indeed

    (told you, I'm capricious. But really..it has to be ceratin time before, and all that..and only here..tons of limitations)


    Olychik it''s not too Pollyanna-ish. It's a very human thing.

    .I had lately this great enlightment..it was about hope..about whether it dies last..

    (or maybe the enlightment seems great only to me, I don't know))

    Maybe I'll share it one day.

    Well I'm sure you'll all agree with me that I need to stop writing, and go watch "Friends" or something.

    Can I hug you?

    Let's pretend I can.

    And yes, I still stand by another point of mine-it's a great thread. I learned a lot from it.



  • gsciencechick

    DH is traveling with MIL to help move his aunt from one assisted living to another. She has children, but they have nothing to do with her. IDK if the assisted living even knows she has children. She obviously has mental challenges but who knows what type of mental illness she has. She's had difficulties her whole life and has never really had a job. So, MIL has ended up the caretaker for her from distance along with her sister who lives about 90 min away from the one in assisted living. But this other aunt has also flaked out and only does things affiliated with her church. So, I feel for MIL because grandma died about two years ago, and now she feels she's lost all her siblings, too. They have one brother who really became estranged after grandma's final days, so he has no involvement with any of it.

  • IdaClaire

    April... you are a special soul. (((((Hugs)))))

  • tinam61

    Another thing to remember on that checklist for the future is a Medical POA. Years ago, my grandfather had a living will, and DNR prepared. When the time came, the hospital did not recognize either because my grandmother, his spouse, could not bring herself to say no to more treatment (which the doctor had told us was pretty much useless). Had he had a medical POA, we could have avoided the situation.

  • allison0704

    I would also miss you, April.

  • gsciencechick

    April, I've always valued your contributions. Sending virtual hug. I do not judge anyone in respect to their own situation.

  • aprilneverends

    Guys you're very sweet and I feel like (here comes a rhyme)

    You know, when I was little and would say something stupid and/or inappropriate, and then for example hit my elbow or bite my tongue or something like that-my Mom would always tell me" "Here, G d punished you!"

    (we were completely secular family, it's just that my Mom was agnostic enough I guess))

    So yesterday G d's punsishment came in a form of me spilling very very hot tea over my erm..upper body...good that I was wearing thick sweater..

    Btw it's left side, where heart's supposed to be.

    I thought to myself immediately:"here, that's what you deserve for all the stupid things you wrote here"

    In short, I've a feeling I'll have many more opportunities to say here other things that'd be stupid and inappropriate...)) I'll try not to, of course..

    Hugs..

    And back to the caregiving topic-I realized that out of all my dread of next year situation, that is going to be indeed very logistically and all kinds of hard, I'm somehow dreading my SIL the most..Like she's a magical dragon or something..

    Even though other things I hope to be able to do and see through will be really really important, and what might my SIL say this day or that day-actually wouldn't affect anything of substance, except my nerves.

    It's interesting how brain works sometimes, isn't it?

  • OutsidePlaying

    April, sending you many hugs. I would also miss you and the things you write and your reflections on life. I daresay none of knows what we would do in such a situation until it actually happened to us personally. We think we do.

  • yeonassky

    April since you are there not I or others you are in the best position to know what to do. But it is so hard to be the ones left behind as you acknowledge up thread. Would miss you terribly.

  • IdaClaire

    April, I don't believe that God punishes (although I know what you were saying about the adage your mom used), but I have come to feel that sometimes the universal powers that be have a way of aligning circumstances so that we receive an unmistakable message! It can be pretty powerful when you recognize it, and yes, it might even come in the form of spilled tea. ;)

  • Arapaho-Rd

    I apologize first because I have not read this thread in it's entirety. I'm currently in caregiving mode, not the most challenging situation but one that has me in it's grips emotionally, physically and mentally. What I think about constantly is, "what would I want someone to do for me"? If I live on to the point of needing help someday, where will it come from? In what form and from whom? Children, no. But then they're no guarantee - I've heard many stories of kids not showing up. None of us know how any of our lives will play out. But I do know what is presented in front of me now and I find it more of a learning experience about what I'm made of and what I'm capable of both good and not so good. Maybe the plan is for me to examine myself as I provide caregiving to see what kind of a difference I can make in a life and what kind of difference I can make in my own. After all, I shall not pass this way again. I wish each and every one of you the gift of peace in your mind, heart and soul. And thank you for the gifts you give each time I come here.

  • Bestyears

    We are in the midst of this situation. We had to put my mom in a nursing home after she was hospitalized for many weeks because she wasn't able to recoup her strength. We worked really hard to find a place that is wonderfully clean, has some beautiful outdoor areas, book groups, current event hours, outings, etc. But my mother is determined to be miserable there, and she refuses to participate in anything. She complains bitterly, nearly constantly, that we need to get her out of there. She's mean to the staff, and to my local sister when she visits. But she needs assistance dressing, toileting, etc., and she has begun to show signs of dementia, and she just wouldn't be safe at home without 24/7 supervision, which none of us are able to offer. The full truth is that she is, and always has been, a difficult, unhappy woman, and of course, that isn't going to change now. She was living with my sister for the four years prior to this, and complained to everyone and anyone constantly about that, even though my sister took her in at her request when she was fully capable in every way of caring for herself, still working f/t, etc. So even though we all know in our heads that this is all we can do, it really wears on you. I keep coming back to two things:

    The first, as Arapaho-Rd writes, is to ask myself, "What would I want someone to do for me?" I try to stay true to that even though at times there are no great choices.

    The second is to remind myself to show grace both NOW and when I am someday in this position. My mother, as I said, has, unfortunately, always been intolerant and self-serving, and this adds now to the overall difficulty in this situation. So I am determined to show grace when I'm in a similar situation. My environment someday may not be to my 100% liking, but there is always something to like. The person being care for cannot help that they are a burden on others for their care -it is not their fault that things don't work, that they can't do things, etc. But I hope to God I can remember to be and act grateful when people are caring for me. To realize that this is hard for them too, and to try to make the best of it.

    Like others mentioned, I read On Being Mortal after this all transpired, and believe it's a fabulous book that we should all read.

  • robo (z6a)

    Thanks to all for a really interesting, respectful and thought provoking discussion.

    4/5 of my grandparents lived to be in their 90s (my grandfather was widowed fairly young and remarried). They were all kind, intelligent people who were determined to be independent. I've learned a lot watching their trajectories. The first is that I should downsize when I can. The second that I should welcome institutional living at a certain point - for example, my grandmother lived in an assisted living apartment and that allowed her to remain more independent and less of a burden than those that adamantly stayed home. The third is that professional caregivers, even in very loving family relationships, allow the family relationships to be more comfortable. For example when my grandfather went into dementia care, his wife communicated to us that she was able to transfer back into a wife instead of the nurse and the nag.


    I also watched my parents transition into parenting their own parents and it's definitely not an easy transition for anyone.


    Finally I watched my grandparents become less flexible and more dependent on routine as they aged and that's something I want to support with my parents when the time comes. And try to understand. Their needs changed to need greater security, I guess.



  • Michele

    When the time comes hopefully I’ll die in my sleep. Quickly. I don’t ever want any of my kids to have to do what I’m doing. I feel bad for my mom. She was a hard worker her whole life. It’s hard for her, but she does nothing but lament. Every time I have to do another thing for her, like the time I told her I had to start doing her laundry, it’s a big dramatic scene. First it’s the lying. “I wash my own clothes!” Except she wasn’t. So we had to go through the soap opera scene. “Time for the nursing home!“ or “time for me to go join your father!”

    I can’t begin to explain how I dreaded having the “poise pad for incontinence“ talk. My sister took care of that. She has my mom come down a couple of times a year For a week. My mom had an accident sitting on my sister’s kitchen chair. She brought my mother home with a huge box and strict instructions. My sister would not put up with theatrics. She talks, you listen.


    My mother has always been a worrier. She’s reached new heights with that.

    My brother will go for weeks without calling or even picking up when she calls him.

    I‘ve begged him to call her. It helps. He just goes into these funks. He needs help himself. I need help too. My sister is in her own perfect world 5 hours away from here.

    Trying to keep it together.



  • bpath reads banned books too

    This has been making the rounds on Facebook. I shared it, too. All of a sudden, with this thread, I’m thinking of it as though my parents posted it.


    (jepeers, it sure is hard to read. I think I’ll see if I can find a new image of it that isn’t white, uppercase, sans-serif, centered, on red lol)

  • Michele

    ^ I read it. It was very clear to me. In more ways than one. Thanks for posting that

  • nini804

    Awww, bpath, that literally made me cry! And it is so true...that is all our parents want. Now that we have lost dh’s dad and my mom...it makes us even more determined to cherish my dad and his mom while we still have them.

  • allison0704

    Just ran across this Martha Stewart article on Swedish Death Cleaning. Couldn't they have come up with another name?!

  • bpath reads banned books too

    Allison, it’s a shocking name, but it’s accurate! Btw, I listened to the audiobook and it is wonderfully, gently but firmly, read.

  • Michele

    I think the Swedish Death Cleaning is a great idea. Sometimes these “things” are just another burden.

    It wasn’t a death cleaning, but 3 years ago my husband and I went through our stuff and gave tons of things away. We needed more space, living in the city, and we can’t move so that’s how we did it.

    Anything usable we gave to a local charity that we’ve always donated to, and we gave loads of books to the library.

    It reminded me of the five loaves and two fish story from the Bible. I couldn’t believe how many trips we made to give stuff away.

    It was a great feeling!

  • IdaClaire

    Thanks to those who suggested reading Being Mortal. I started reading it yesterday, and am finding it fascinating. So far, it's depressing as hell, but it's causing me to really think about inevitabilities I've turned a blind eye to for many years.

  • blfenton

    It doesn't stay depressing, or at least for me it didn't. It made me think about how I want my end of life to be.

    bpath - I saw that a couple of days ago and sent it to my kids. I really don't want them buying me things. (especially after last night when my son and his fiance, who just bought a house and have no money, had to have their puppies stomach pumped after he swallowed a toothpick, a $300 bill that they didn't need)

  • Bestyears

    I agree, On Being Mortal doesn't stay depressing. I thought the chapters on the beginning of the assisted living industry were fascinating.

  • IdaClaire

    I'm reading about the history of assisted living centers right now, and it IS very interesting. I think what's depressing about it so far are the stories about how the elderly have such a hard time finding the right fit when it comes to facilities. Well, that, and just the overall recognition of how the body breaks down and what we all have to look forward to, in one form or another, should we live long enough.

  • Bestyears

    Regarding the creation of the assisted-living and independent-living industries: After I read On Being Mortal, one of my takeaways was that the guiding principle has always been safety, which seems well-intentioned, but comes at a great cost to the dignity of the residents. So, for example, residents must agree to take their medications under the guidance of staff. It doesn't take boatloads of empathy to realize how that and similar policies lead to an overall loss of dignity. So there has been a movement to allow for some risk by loosening up restrictions. The payoff is that people live more happily in these places. It really made me stop and think -specifically about preschool selection when my children were small. You could make the argument there too that safety had to come first, but if that was the case, there would be no playground equipment, etc. And of course, none of us would select such a preschool. We innately look for balance. When it comes to our elders, I can see now how we have too willingly accepted the notion that they must simply be kept safe.

    Another takeway was the author's explanation that we shouldn't worry too much about death. We're all going to die, some of us more nicely than others, blah, blah, blah, but bottom line, we're all going to die, and there isn't a lot we can do about it, so we shouldn't spend too much time worrying about it. Our demise, on the other hand, bears a lot more thinking about than most of us give it. Our years of demise may last thirty years or more. Certainly, on a macro level, they are growing longer and longer. So where and how will we spend those years? Immediately after we got my mother settled, I remember feeling absolutely committed to the idea that everyone needs an exit plan, so that if you get to a point where your life can be sustained but it just isn't enough for you, you can do something about it. I'm not talking about not getting a feeding tube, but well before that time. If I were immobilized, for example, and not really able to visit with family for birthdays, to get out to see a movie, etc. etc., I think I'd feel like, you know what, I've had a good run, see ya! And I would want the opportunity to make that decision. I'm sure this might be controversial to some, but in my view, it should be completely the domain of the person who finds him- or herself facing a life they just can't abide.


  • jill302

    Ida, The information is so right. We got lucky with the Assisted Living we found for my mom., but she has had friends that have had a bad fit. That said although her Assisted Living was a great fit when she moved 5 months later it was not. She had several health issues hit at the same time, it totally changed everything both physically and mentally. She now has been moved to a small 6 resident care facility, she has only been there 10 days so I am not sure how the fit is at this point although the caregivers seem competent and nice. Mom is happy with the care, she just is not crazy about the food and one of the residents. She has mentioned she wants to go back where she was living before, but she needs more individual attention now and while you can get that care at the Assisted Living facility the cost is very high. I still work and can not take on all the care she would need to keep here there - basically someone with her most of the time. So it is what it is and we just do the best we can with what we have. Look forward to reading

    Being Mortal.


  • l pinkmountain

    It's so hard because when you speak of loss of dignity, sure, having someone supervise you taking your medications is somewhat of a loss of dignity, but no where NEAR the loss of dignity you are going to have if you don't take your medications and suffer a stroke, have a panic attack, go into kidney failure, etc., etc., etc. This is the tough part for me, we want to ensure our parents dignity but sometimes we are going at cross purposes. My dad constantly says he doesn't want to "burden" me and then if I offer to drive him somewhere he says no and uses that as an excuse. And then he ends up having an accident or getting dehydrated or falling or whatever, and THAT is the burden. If it hadn't been a "no sweat" kind of thing to offer to drive I wouldn't have offered. That's the kicker for me, turning down offers of help which are not burdens, saying they are burdens which they are not, and then ending up with a problem because of the refusal of help, that IS a burden!

    Edited to add that if right now, someone offered to run an errand for me or drive me somewhere, or whatever, I would be on it like white on rice. I wish I had help and I am not infirm yet by any means!

    Plus, there are things my dad could still do to stay busy and help out, and yet he refuses to do them. He's too busy not being a burden . . . And I know this sounds snarky and I will be in his shoes some day and get my just deserts. And I get it, old age sucks!!

    I'm going to at least try to do something to prepare myself for this. I already have a pact with my best friend to give me a good talking to if I start to emulate my parents. But we both know better, we will have a whole different perspective on it when we get to be their age . . .

    The ironic thing is, my Dad is not a burden, I treasure him. The sad, sad, sad thing is he doesn't care that much, he doesn't see that, can't appreciate it, he's so caught up in his own depression and misery.

  • Michele

    ^ pink mountain. I hear you ! Ugh!

  • dedtired

    I didn’t know there are so many caretakers among us. I take care of my ancient mother. She’s 102. She pretty much drives me crazy on a regular basis. Thankfully I don’t live with her. She really should be in a retirement home but she absolutely refuses. Every time I see her, which is every day, she goes on and on about never wanting to be a burden but she never did anything to avoid that and won’t make any changes now. She can well afford the best care and there is a lovely home in our community. So my answer to what do we owe our parents and for how long seems to be everything, forever, like it or not.


    caretakers, I hope you are doing okay. Has anyone asked you that lately? I bet everyone asks about your mother or father, but how often does anyone ask about you? I hope you are well.

  • mtnrdredux_gw

    I guess Being Mortal would be an odd thing to put on my xmas list. I am def. going to read it. I think our parents were the first generation to have this "problem" of living "too" long. Our generation has to figure out new solutions and new approaches.

  • bpath reads banned books too

    Medical advances, more consistent nutrition from early childhood on, better health, safer “tools”, dental care, allows people to just live better, and that translates to longer. But my BIL, a physician, said that even with all that, the human body just wasn’t designed to live into the 100th decade, which DH’s and my parents all did. That 100th decade is really, really hard. My mom used to talk about her cousins who lived to 99, 100, and clearly wants to reach that. One difficult day when she said that, my aunt and I looked at each other and whispered “God help us.” She’s 95, and I’m not sure she’d want to be living like she is. But I do know that I am not nearly the daughter that she was. She invited her own mother to live with us instead of going to a retirement home, and she visited her homebound MIL much more often than I visit mom now.

    I was at a “Book Night” last night, where the guests and the bookstore’s managers talk about their book recommendations from the year. My nonfiction offering was Being Mortal, and the almost-two-dozen women in the room all nodded and audibly agreed. It may have been one of the few books last night that almost everyone had read.

  • Michele

    Neither my mom nor MIL had to take care of aging parents. Or defer to their plans or decisions. Of course it was out of their control, as they both immigrated here from overseas.

    However, while my mom has a more victimized demeanor about her, my MIL has only become more and more demanding and frankly b****y. Neither one are pleasant to be around. The grandkids are older now and don’t visit as much. I understand.

    This is something I hope to remember if I live that long and have grandchildren. I will remember (hopefully) to allow myself to enjoy my time with them and not complain or criticize

  • blfenton

    Along with Mtnrd's point I would add that because our parents are living so much longer many of us are taking care of them in our retirement years and often have our own health issues..

    We're retired but still healthy and this is not what we had planned for our retirement years.

  • dedtired

    Blfenton, exactly. Whoever imagined a retirement that was all about caring for the elderly? I thought I’d be lying on a beach with a Margarita, not doling out Ensure and managing every aspect of my mother’s life. My neighbors mother is in an assisted living arrangement and my neighbor is still bogged down with all the decisions and management.

  • blfenton

    The money that we're saving by not traipsing around Europe, which was our plan, will just go to our kids. Lucky them, then they can go and hike around Europe.

  • NewEnglandgal

    I have been following this thread reading everyone's thoughts and more importantly their experiences.
    My parents live a 3 hour plane ride away. My mom has been in a nursing home for 18 months with late stage Alzheimers. she still knows her family and friends.
    My dad lives 5 minutes away, visits almost every night to try and get her to eat which is usually very little. She is on hospice due to her declining weight and inability to walk or do much except sleep.
    My dad shows sings of dementia but tries to hide it and refuses to move out of the home. He still drives and says he dreads having to give up driving someday.
    He is extremely stubborn.
    Both my parents are incredibly selfish and I had deep rooted anger and resentment for my mother though Ive never told her and always have been kind and tespectful. I no longer havecany ill feelings only sadness to watch an intelligent woman be reduced to very few words.

    It is very hard being so far away but we travel frequently to check on them and cook meals for my dad.
    I have a sister who visits once ir twice a year only when I am there and does nothing for them. Yes I am resentful that she does nothing but visit for a few nights to "check off the box" and look good.
    My husband and I do everything. I dread the day we have to make a decision on my dad. I keep praying he will die peacefully in his sleep. He is 85 and had pretty bad COPD but is very active and so far has done ok on his own. For this I am very thankful. Things could be so much worse.

    All this has certainly given my husband and I food for thought.
    We have to put things in place and most importantly, write a list of policies with telephone numbers to call,, have an envelope with our social security cards and birth certificates and write a list of all bills and bank accounts, stocks, properties owned, etc.
    I think that is something all of us can do so our children do not have to try and figure it all out and wade through tons of paperwork.

    I too had no idea my 50's would be filled with parental care and issues.
    We have my MIL in assisted living. She is very negative and complains about everything. She is a real downer but we have her over everyvweek for dinner or take her out. she has 4 daughters, two who are good at visiting, one who takes her to doctor visits and that one who does very little. So I think we all have family who refuse to pull their weight and do their part.
    lLastly I will say I know in my head my parents will pass away but "later on" is never supposed to come.

  • 3katz4me

    When I was a kid it bothered me that my parents were so "old". Back then it was unusual to have children when you were 40 & 46. I guess when you get to be in your 60s it's an advantage that you had "old" parents as you are highly unlikely to be caring for them during your retirement years. Both DH and I had older parents and they all passed in their mid-80s (except my father who died at 62). We won't be a burden on kids since we don't have any but who the hell knows what will happen to us if we live to be old and decrepit. I fully expect to end up in assisted living some day if I live long enough and that sounds fine to me. If the last one of us left ends up with dementia that will be interesting. At least whoever it is will be out of their mind and won't know what's going on. Hopefully we'll find a trustworthy professional to manage the funds to pay for the care. In the meantime we have way too much stuff (two homes full) that I look forward to getting rid of at some point before I really start to decline.

  • jmck_nc

    blfenton, the money you are saving by not traipsing around Europe will go to YOUR care eventually.

    My mom is a bit of an "older" mom...she was 36 when she adopted me. Which for the time was pretty old for a first child. She told me the other day she doesn't ever want me to "put her in assisted living". So this is an issue even for someone who lives in a beautiful CCRC and the assisted living is in the same building as her current apartment. She will not even visit any friends who have moved there from the independent living apartments.

    Just received my copy of Being Mortal but I'm afraid to read it during the holidays. I think it will wait for January.

    Thanks to everyone who has participated in this conversation.

  • justerrilynn

    My sister and I had it very easy with my moms illness and passing as she planned everything out. Mom died of ALS a few years ago. I think it was two years (?) before she became diagnosed she found a one bedroom in an assisted living place. She sold her home and all her furniture and most all of any ”stuff”. Mom even designed and paid for her tombstone. Everything was carefully logged, updated and paid for. There were lists with account numbers and phone numbers. Most were balance free and just needed cancelling. She did buy a minimal amount of small furniture for her new little place but that was it. All my sister and I had to do was plan a small gathering with a minister which was her wish, and my sister cleared out the little minimalist one bedroom place. I think moms inspiration was saving the nightmare of going through a zillion years of stuff like her and siblings had to do with their parents.

    My mom really did a good thing by making all those plans and being so organized.

  • NewEnglandgal

    justerrilynn I hope to do the same for my children.

    Assisted living is over 5k a month here in the northeast. Many cannot afford it and what happens when their money runs out?
    These issues are very tough for those with very little savings. Medicaid pays for a nursing home to those who qualify but I do not think they cover assisted living facilities. Correct me if I am wrong.
    I feel for each of you dealing with aging parents and these issues.

  • patriceny

    You are correct New Englandgal - at least in New York, Medicaid will cover a nursing home but not assisted living. When my dad was alive for the last year or so of his life, he was in a fabulous small home with 5 other residents. They always had at least 2 staff on at all times. They got fabulous care, lots of attention, fabulous food - it really felt like a nice bed and breakfast to me.

    It was also about $100/month cheaper than the absolutely lousy Medicaid-paid nursing home just down the road. The Medicaid paid nursing home was the most stark, smelly, depressing place one could imagine.

    I lived in fear that my dad's money would run out and there was no way I could afford to pay for his monthly costs - in which case he would have ended up in the nursing home.

    He got sick and died relatively quickly at the end, all things considered. I had been researching what we needed to do if his money ran out and had started talking to Medicaid and I realized the options just sucked. :( His only choice would have been to go into a way worse facility, which would have cost the government more than if they reimbursed the place he was already in. Craziness.

  • Feathers11

    I had lunch over the weekend with friends, and we discussed this topic. One is a nurse at a local hospital and is increasingly frustrated with the model of care for the elderly. She made a great statement: "Doctors don't treat death." Our healthcare system is based on keeping people alive as long as possible and profiting from that.

    But to go along with this, the system sure is failing at the assisted living and nursing home options, IMO. I was fortunate in that my father could afford any facility, but even the "good ones" were dismal at best. My sister and I did unannounced walk-thru's of about 6 or 8, and I left each one with a heavy heart. They were depressing places... of course, I was emotional to begin with, but I couldn't believe this is all we can offer our elderly.

    The primary hands-on care of elderly residents in many of these places falls on CNAs and LPNs, who I believe are grossly underpaid. But that's another issue.

    Patriceny, your dad's place sounds ideal to me. I'm also hearing more about alternatives where people pool their money to stay in a converted home of sorts, hire help, and rely on one another for their day-to-day needs. I love this idea... I hope it spreads. A lot of logistics would need to be covered in terms of contractual agreements and levels of care needed. But I can't imagine paying long-term care insurance for years and ending up in one of the facilities I toured for my dad.

    I know many of our parents who claim they "don't want to be a burden" are, in fact, great burdens. I hope each of you who are there for them are rewarded when your time comes with better options. We desperately need better options.

  • bpath reads banned books too

    The last friend my father made on this earth just passed away. They met on the skilled nursing floor a year ago, but didn’t become friends until the last few weeks before Dad died this summer. His death is upsetting me more than I expected. It’s like losing another piece of my dad, as the parts of his life slip away from us. It’s hard to make friends at that stage, I think. Earlier in your life, it is easy to find common ground through work, involvement, sports, kids, and so on, and friendships can build from there. Once you are in a skilled nursing or assisted living situation, where your activities and abilities to communicate might be curtailed, it is harder to make those initial connections based on anything other than “what’re ya in for?” Turns out, this fellow and my dad would have had a lot to talk about. He was an architecture critic, Dad was a builder whose own father was an architect.

    I‘m so glad Dad’s life was enriched by this friendship in his final weeks. I so wish it had started sooner.

  • Bonnie

    I understand and can relate to your feelings Bpath. It was hard for me to say goodbye to my dad‘s friends at his assisted living place. You are so right about how special those late-in-life friendships are. I’m thinking of you and hoping you can find some peace.

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