Do you expect your children to care for you and never put you in a nursing home? (eldercare discussion)

[HS Mom in NC]

I just remembered something a friend at work told me.  His mother is caring for his grandmother who is elderly.   The elderly grandmother fell and broke something.   She been doing pretty well before that, and there hadn't been any other problems like that before.   She hadn't needed much care, just someone to be there, take care of the grocery shopping, bill paying, laundry, driving etc.  My friend's mother was told that she had to get her mother into assisted living or a home of some sort because if his grandmother fell again in the mother's home, his mother would be charged with elderly neglect.  

 

I think it's possible she misunderstood or got bad advice. In states like mine with elder abuse laws, an elderly person falling and being admitted into a hospital means the medical staff is required to look into the possibility of elder abuse, not that there will be automatic charges.   When Grandmother had her stroke and fell requiring an ambulance and admittance to the hospital, they had to include documentation in the medical files that had fallen due to the stroke and she showed no signs of elder abuse.  No bedsores, no malnutrition, no bruising outside of her long documented medical condition that made her blood vessels break easily, etc.  They do this for every elderly person as a matter of course.  That doesn't mean people in these states are refusing to care for their elderly relatives because they're going to be automatically blamed.  Doctors know old people fall for perfectly innocent reasons.

 

[fairfarmhand]

.  I don't think people should ignore their responsibilities to parents and automatically put them in a home because elder care is a lot of work, but neither should they ignore the fact that there are times being in a facility is the best thing for the patient.

 

 

 

I really do agree with this.

 

There are many people who don't want the inconvenience of eldercare. And there are others who are in the midst of life circumstances that make it impossible.

 

And in this country it's so hard to find good part time help in many areas. You know, so you can go to work.

 

I think many families would be much more open to doing more at home, rather than choosing a nursing home, if there were more options for part time and respite care. It is quite a mess.

 

I think what makes it so difficult in so many cases is that there's no way of knowing how long your life may be turned upside down. Could be weeks, could be months. And if the person is taking life-extending treatments and medical care, they can decline for such a long time.

 

Aging is so difficult.

[Seasider]

Living far away from parents and understanding the anxiety of being too far away to help long term if anything major happens (or the need to help majorly disrupting my home and job responsibilities, plus travel expenses), I hope that as I age, I will be willing to move to be near at least one of them. I don't want them to have full responsibility to care for me, but I want to be sure it's not a hardship for them to be involved in directing my care.

 

But at least one of them better live where it's really warm!

[HS Mom in NC]

If it's better for me to move to my kids, then that's what needs to happen.  I think we've had elderly generations that usually didn't move much and spent decades in the same place so they have very distorted views that moving is the end of the world.  Younger generations don't usually spend most or all of their adult lives in one house, so the idea of moving isn't earth shattering. Those older generations didn't see most of their elders living to such old ages or have available the kinds of medical treatments we do today, so most don't have the experience dealing with long term end of life issues.  This makes them more unreasonable when things come up. Younger generations today have to deal with all that AND the fact that many families are broken so instead of caring for mom and dad in one place, they have to provide care at TWO facilities or at one facility and at home because mom and dad haven't been able to live together for decades.

If you haven't looked into long term nursing care insurance for yourself, now's the time.

[Bluegoat]

Dh and I were just talking about this yesterday. His dad called him and said he's considering selling off some of his assets. He has several Highwaymen paintings he bought when they were cheap roadside paintings, and are worth quite a bit now. He also has some coin collections and antique guns worth a fair amount. He's planning to use some of the money to enjoy his final years and put some aside to be left in his will. He also plans to rewrite his will and is trying to decide what to do with his house. Dh told him it's his money, his house, and he'll support him in whatever he decides. I think he knew dh (sort of middle child, if there can be a middle child with 4 kids) was the one of his offspring who would support him and not try to talk him into or out of anything. There will likely be fallout from his oldest brother and from his sister, the youngest. He and his other brother (2 years older than dh) will be more easygoing and support whatever FIL decides to do.

 

Anyway, after he hung up with FIL we were talking about the house and how we don't expect it to be left to any of us, nor do we feel entitled to any money from the sale of it. We got on the subject of how different things once were, and that a family house or homestead was usually one with several generations living in it. This isn't even the house dh and his siblings grew up in, since MIL and FIL downsized after all the kids left. 

 

I don't think adult children should be expected to provide for their parents, but I also don't think parents are required to leave anything to their adult children in a will. If they want to that's one thing, but it shouldn't be expected. <---- I mean that last sentence to apply to both situations.

 

THis is a funny thing though - I suspect that it is one reason people are so often finding it difficult to "get ahead."  It's as if every generation has to start from scratch, other than possibly for some education help. 

[FloridaLisa]

What a great question. I cannot imagine putting that expectation on them b/c I have no idea what the future holds...for them or me. BUT, I had a great aunt who never let anyone *put her* in a nursing home She hired a young lady who was so very loyal and she was independent well into her 90s. That would be ideal.  

 

I do have 7 kiddos so if I end up in a nursing home, I'll suggest they each take a day to visit. :) 

[Bluegoat]

If it's better for me to move to my kids, then that's what needs to happen.  I think we've had elderly generations that usually didn't move much and spent decades in the same place so they have very distorted views that moving is the end of the world.  Younger generations don't usually spend most or all of their adult lives in one house, so the idea of moving isn't earth shattering. Those older generations didn't see most of their elders living to such old ages or have available the kinds of medical treatments we do today, so most don't have the experience dealing with long term end of life issues.  This makes them more unreasonable when things come up. Younger generations today have to deal with all that AND the fact that many families are broken so instead of caring for mom and dad in one place, they have to provide care at TWO facilities or at one facility and at home because mom and dad haven't been able to live together for decades.

 

If you haven't looked into long term nursing care insurance for yourself, now's the time.

 

The wanting to move thing is largely learned too though, and while we have to deal with it, I have to wonder if it is really better for people.  It's good for those who want a highly mobile workforce, but it complicates a lot of life processes - eldercare obviously but child-rearing is significantly impacted as well. 

[Laura Corin]

Living far away from parents and understanding the anxiety of being too far away to help long term if anything major happens (or the need to help majorly disrupting my home and job responsibilities, plus travel expenses), I hope that as I age, I will be willing to move to be near at least one of them. I don't want them to have full responsibility to care for me, but I want to be sure it's not a hardship for them to be involved in directing my care.

 

But at least one of them better live where it's really warm!

 

I was talking to some older friends, and they were all ambivalent about this.  They are in their late sixties, I would say, so likely to live into their mid-eighties (by current statistics).  They didn't want to move to be close to their children because their children were still setting up their lives and might well be moving around: they didn't want to spend their old age shuttling from one place to another.  I think they were envisioning hanging on where they were until they really needed help, and only then moving: by that time, their children might have settled down.  Sensible in one way, but a real wrench when the time comes.

 

Another friend decided to move to the centre of England to a town on a good train line when she retired.  She didn't know where her children would end up, but at least she had a decent chance of being accessible.

[Donna]

No.

 

I do not expect it.

 

If it ends up being something I need and something they want to do and it works for their family situations, I will be grateful. There are too many reasons why it might not work best for any of my kids...lifestyle choices, family situations, any factors affecting my health requiring different levels of care (dementia, stroke, who knows??).

 

Hopefully, dh and I will have planned well for our retirements and, if necessary, my kids will chose a nice place for us close enough to at least one of them for a visit now and then.

 

 

[Stellalarella]

What I found out is that the parents can live a whole life without making good plans for the end and the children who love them become the back up plan by default, they end up sick and unable to care for themselves, they do not want to go into a nursing home, but hate living in your house while you help them.

 

In a culture that cherishes independence above all else, we make gigantic messes of dealing with our lives at the end when, at some point, we will have to be dependent on others.

 

Please read "Being Mortal" by Atul Gawande.

 

And proceed very carefully if you think you can homeschool kids with high standards classical style education, somehow maintain income from a free lance business and take care of stroke/dementia patients in your home. And still manage to have any kind of healthy family relationships.

 

 

 

 

 

 

 

 

 

[marbel]

I was talking to some older friends, and they were all ambivalent about this.  They are in their late sixties, I would say, so likely to live into their mid-eighties (by current statistics).  They didn't want to move to be close to their children because their children were still setting up their lives and might well be moving around: they didn't want to spend their old age shuttling from one place to another.  I think they were envisioning hanging on where they were until they really needed help, and only then moving: by that time, their children might have settled down.  Sensible in one way, but a real wrench when the time comes.

 

Another friend decided to move to the centre of England to a town on a good train line when she retired.  She didn't know where her children would end up, but at least she had a decent chance of being accessible.

 

This is something my husband and I have talked about.

 

His parents live in a place with terrible access - a small mountain town.  Major hub airport is 4 hours drive away. There are closer airports, but $$$ to fly there. I said upthread that they don't want to move from there.  I understand not wanting to be uprooted (though this was not my husband's childhood home, but a vacation home and now primary residence).   But, elderly people have to be realistic. 

 

I accept that my kids may not always live in the same town or even the same state as I do.  Hey, they  may move to another country altogether. I wouldn't hold them back, and it may not be practical for me/my husband to move whereever they are.  But I don't want to live in a place that is a huge pain for them to get to.  Right now we are in a large metropolitan area with a train station within 1/2 mile walk.  It takes a while to take the train from Philadelphia airport to that station, but it can be done without a great deal of fuss.  Driving to the airport takes less than an hour on a good day without rush hour traffic.  

 

We don't want to stay here forever, but if turns out that we do, at least our kids will be able to get to us without a great deal of trouble. 

 

So important, if parents want their kids and grandkids to visit. 

 

[FaithManor]

I was talking to some older friends, and they were all ambivalent about this.  They are in their late sixties, I would say, so likely to live into their mid-eighties (by current statistics).  They didn't want to move to be close to their children because their children were still setting up their lives and might well be moving around: they didn't want to spend their old age shuttling from one place to another.  I think they were envisioning hanging on where they were until they really needed help, and only then moving: by that time, their children might have settled down.  Sensible in one way, but a real wrench when the time comes.

 

Another friend decided to move to the centre of England to a town on a good train line when she retired.  She didn't know where her children would end up, but at least she had a decent chance of being accessible.

This is an excellent point.

 

Though dh has worked in the IT industry for the past 28 years and has managed to remain in one place for the last 10, we anticipate one more move before he retires. We thought when we bought this place that it might be our forever home, but alas that will not be so. I know that I know that I know that my mom does not want to move and neither does my MIL. MIL bought her home here seven years ago just to be near us, so it is a really wretched thing. However, dh can't retire now, and with boys going off to college, must remain employed. We are simply too young to retire despite my parents pleading to do so in order that they don't have to face the fact we might move away.  We should be around here until dad dies since he likely has less than 18 months left and more likely about 9 months. But for mom, she can't afford to move as their property has lost value badly so she won't get much for it unless she moves in with us which we are open to yet she is not. That leaves her here alone. As for MIL, she is going to have a hard time emotionally. Her place is wonderful. Five wooded acres, log house in the woods, lots of amenities. She adores her place and is very, very comfortable there. She would not be able to afford anything like it at all where we are likely to land.

 

Gone are the days when young twenty somethings went to work for company A and stayed until retirement. I've read several economists that all agree that my children's generation will move 5-10 times prior to a retirement age of 70. Given that one needs to own a home on average seven years in order for it to be a good investment, that means more and more renting, and with that, comes the occupancy issues, landlord issues, etc. which means another consideration in how easy it would be to take in an elder.

[SharonM]

No. I don't. I would hope that if we need help they wouldn't leave us alone (either of us)but I have no way of knowing what the future holds for them and certainly not how they will be living then.

We (dh and I) are in the process of moving mil to live with us. She has been declining the past couple of years and I just could not let her go to a "home". I worked in a bunch of them, would not do that to my worst enemy. At least not as long as I could provide help.

[HS Mom in NC]

The wanting to move thing is largely learned too though, and while we have to deal with it, I have to wonder if it is really better for people.  It's good for those who want a highly mobile workforce, but it complicates a lot of life processes - eldercare obviously but child-rearing is significantly impacted as well. 

 

Yes, that's why people should seriously consider these things when moving is an option.  There are people who cannot afford the cost of living and have no choice but to move.  There are times when people can't care for themselves and the person who can care for them has to stay where they are for employment reasons, so the person needing care needs to suck it up and move without being belligerent about it. 

 

What I find troubling is the mindset of moving for reasons that aren't so earth shaking without a single thought about how childcare and elder care will be impacted.  What are you going to do if you're confined to bed with an extremely complicated pregnancy and you have a toddler and a preschooler? What if you have a child with significant enough special needs that you can't take them with you every time you run an errand? What are you going to do if your parent or grandparent has a stroke that requires regular help but not full time medical care?  What are you going to do if your spouse is incapacitated for a prolonged period of time? Who will help with the baby if unwed teen niece gets pregnant during high school or college or skills training? What if you're divorced because your spouse left you and you have elementary aged kids? These things happen all the time to people we all know.

 

Considering it doesn't mean deciding to never move, but it is worth considering when a job offer out of town comes up.  Yes, it may help a career, but career isn't the only consideration in a family's life.  Sometimes (not always) it really is a better quality of life option to decline the job offer and stay put for the sake of extended family. Each situation is different and each family dynamic is different, but thinking it through beyond what's happening right now is never a bad idea. Plan for the worst, hope for the best.  

 

[Jane in NC]

My father expected this.  And then he needed help with toileting.  The indignity of having one of his daughters assist him with bathroom functions was more than he could bear.  He spent the last ten months of his life in a nursing home. 

 

This issue is not only one of family culture but of individual health situations as well as one of housing.  Some houses are more easily adaptable for ramps and elevators. I live in a such a home whereas a family member who insists she is dying in her own home has a house that I see as problematic.  One cannot wait to make adaptations until a hospitalization occurs. I truly wonder what her future holds but I figure that she and her kids will be sorting that one out!

 

I remember reading a book about a multi-generational family that figured out a way to make things work.  The grandparents helped a younger couple buy a farm.  Grandpa died suddenly and grandma went into decline, but the young farmer wrote that grandmas can rock babies like nobody's business.  I might want to try to be that grandma. But I know that my father's situation taught us all a lesson about future expectations.

[HS Mom in NC]

 

And proceed very carefully if you think you can homeschool kids with high standards classical style education, somehow maintain income from a free lance business and take care of stroke/dementia patients in your home. And still manage to have any kind of healthy family relationships.

 

We've done that successfully because we have extended family on both sides within a half an hour drive.  On my side we had our adult kids plus my mother (who is an only child) and my step-dad to take care of my maternal grandparents in my mother's farmhouse on the edge of the city for 2 years and my grandmother with Alzheimer's at a local hospital then hospice facility for a month.  That means living and working locally.  In a metro area of 4+ million like PHX, it's a possibility.  People outside reasonable commute distances to economically diverse areas, not so much.  Yet something else to consider.

 

It also means not going back to work after the kids move out. Having relatives who don't have work schedules is essential. That means lifestyle choices have to be made early on to support it. If people here haven't read any Dave Ramsey, now's the time.  No 30 year mortgages. No debt. No living beyond your means and within your means looks like housing costs that don't exceed 25% of your take home pay.  Those kinds of things.  Most people set themselves up for trouble without being aware of it because they accept social norms and conventional wisdom.

[Hilltopmom]

Please read "Being Mortal" by Atul Gawande.

 

And proceed very carefully if you think you can homeschool kids with high standards classical style education, somehow maintain income from a free lance business and take care of stroke/dementia patients in your home. And still manage to have any kind of healthy family relationships.

This.

 

My other children love their sibling. And although, yes, they've learned great lessons about human life & disabilities, etc- we cannot go away together as a family, ever. Right. So no family camping trips- mom can go or dad can go, but never mom & dad.

 

Day trips, ok, mom or dad-, but dads at work. So, I can't take the kids to the beach for the day, or hiking, or skiing, or anywhere for the day without careful planning & hiring a nurse. Then half the time, the nurse cancels & we can't go anyways.

 

Heck, forget about fun outings, I have to arrange things perfect just to get groceries. And all homeschooling & kid activities must be planned around dr appointments & therapies, of which there are many. And sleep, forget about it. Caring for someone who needs medical care is a full time job, even overnight.

 

I sound bitter, but I'm just being honest. This is what life is like here.

 

Now, having granny move in just because she doesn't want to take care of her big house anymore.. That's a different story.

[Seasider]

If you haven't looked into long term nursing care insurance for yourself, now's the time.

I keep telling dh that if he really wants to buy me a gift that will please me, a long term care policy is it. Weird but true.

[Laura Corin]

If people here haven't read any Dave Ramsey, now's the time. No 30 year mortgages. No debt. No living beyond your means and within your means looks like housing costs that don't exceed 25% of your take home pay. Those kinds of things. Most people set themselves up for trouble without being aware of it because they accept social norms and conventional wisdom.

Well yes, but stuff does happen, and frequently. Husband was planning on working to age 70. In fact he was laid off in his mid-fifties and now makes 30% of his previous salary. And that's without the medical bills that often crush people in the US.

 

As it is, we did save during the good years, I went back to work, we have a rental property, we'll be fine. But I am not taking too much of the credit for the good luck we had, nor blaming myself for the bad.

[MotherGoose]

.

Edited March 29, 2016 by MotherGoose

[kewb]

I think if you have the resources then a nursing home or assistedf living facility is a great option.  I don't want my children to have to be tethered to me for years.  However, many nursing homes are terrible places and I would not want to be in one of those.

[marbel]

Well yes, but stuff does happen, and frequently. Husband was planning on working to age 70. In fact he was laid off in his mid-fifties and now makes 30% of his previous salary. And that's without the medical bills that often crush people in the US.

 

As it is, we did save during the good years, I went back to work, we have a rental property, we'll be fine. But I am not taking too much of the credit for the good luck we had, nor blaming myself for the bad.

 

Yes, people can't plan ahead for every possible thing that might happen.  Ask anyone who lost a big chunk of retirement portfolio in 2007/2008.  There were people on the brink of retiring then, lost a lot, and had no time to recover.  Despite great planning, their lives aren't working out the way they'd expected.

 

Not everyone has a large family where the care of an elderly parent can be shared.  Etc.  There are a lot of factors out of anyone's control.  I believe in people doing the best they can - not spending money foolishly, etc.  But, people also have to face it that they can't always manage everything with the happy ending they would like. 

 

 

[TranquilMind]

No, I don't.

 

However, I also think old people have the right to live in their house as long as they are somewhat able, if that is their desire.  I believe they have that right as an adult to live in a house that might not be super clean, where they might not have the necessities and care that social services or family deems is necessary.  As long as they are not a danger to anyone else, only themselves, they have the right to die in their own house if that is what they want, even if a nursing home might prolong their lives. 

 

More than fear of a nursing home, I fear that somebody will someday haul me out of my house and put me in a home because of some artificial level of care that they think I need, and then that I will be put away for my own "good".  I should be able to decide what my own good is, even if I'm old and not maybe perfectly mentally stable.  As long as I'm not harming anyone else, that should be my right.

Absolutely.  I can't even believe it is a question.

 

My mom and her friends used to have a joke, based sadly on what happened to some of their friends.  Someone would forget a word, or repeat herself, or do something silly, and then say, "Don't tell the kids!"  They were joking, because they knew we would take care of them, but they also were reflecting a fear of the elderly, that one slip-up means someone else will try to take over, "for your own good".

 

People who have lived many years know what is best for them almost all of the time (absent great mental impairment).  If you don't like it, suck it up and deal with it, unless they are literally a serious danger to others or themselves (and not just if they can't do everything perfectly like they used to do).   If they die because they fall or something, and you did all you could, that's ok.  Better for them to be doing what they want in their own homes, than to be warehoused away, "safer" for a few more days, weeks, or even a year or two. 

 

I have seen it happen over and over that an older person who is doing okay, if not perfectly, is shuffled off to the home in great fear of what "could" happen.  Then they die shortly anyway. 

Edited February 16, 2016 by TranquilMind

[TranquilMind]

I just remembered something a friend at work told me.  His mother is caring for his grandmother who is elderly.   The elderly grandmother fell and broke something.   She been doing pretty well before that, and there hadn't been any other problems like that before.   She hadn't needed much care, just someone to be there, take care of the grocery shopping, bill paying, laundry, driving etc.  My friend's mother was told that she had to get her mother into assisted living or a home of some sort because if his grandmother fell again in the mother's home, his mother would be charged with elderly neglect.  

Well, that's not right, not without some evidence that Mom is actually neglecting her, rather than simply an accident occurring.  I would find that difficult to believe. 

[Joyofsixreboot]

Having been on the kid end of this equation twice I intend to check myself in the first hint that I'm going south. Waiting for a crisis and being at the mercy of where you can get in is nuts and if extensive medical interventions are needed home can't provide appropriate care. I couldn't lift my dad. How could I provide his care the last 6 weeks of his life. And while I'm on the subject I solemnly swear I will get rid of years of acquired " stuff".

Edited February 17, 2016 by joyofsix

[marbel]

Having been on the kid end of this equation twice I intend to check myself in the first hint that I'm going south. Waiting for a crisis and being at the mercy of where you can get in is nuts and if extensive medical interventions are needed home can't provide appropriate care. I couldn't lift my dad. How could I provide his care the last 6 weeks of his life. And while I'm on the subject I solemnly swear I will get rid of years of acquired " stuff".

 

That was another huge gift my mother gave me before she died. She had gotten rid of nearly all her possessions -  either by giving (wanted) items to my siblings and me, or donating it, or whatever.  Even her bookshelf contained only her very favorite books - the rest she'd given to the library at her retirement residence.  I had very little stuff to deal with when she was gone, and all of it mundane.  

 

One of the greatest desires of her heart was to cause no one any trouble. She would have preferred to just vanish in a puff of smoke one day, with no need for funeral home, casket/cremation, etc.  She didn't quite get what she wanted but darn close to it.

 

However, she also had not lost any of her mental capacity, and because of her congestive heart failure, knew she had not long to live.  Not exactly a plus, but it did give her perspective and the time/ability to prepare a bit.

[creekland]

And while I'm on the subject I solemnly swear I will get rid of years of acquired " stuff".

 

Our boys/survivors should be happier than they would have been before this year.  Hubby and I have been slowly tackling accumulation areas in our house lessening what anyone else would have to go through.

 

Since today ended up being an unexpected snow day here (meaning I wasn't at work and had nothing else planned to do) I got through two additional areas of mostly throw away things.

 

We're nowhere near done yet, so it's probably best if we still drive carefully and wear seat belts.  More reckless living can come later.   :lol:

[Catherine]

Everything that happens has an affect on others.  When one gets to where they can't care for themselves (age doesn't really matter), it will have a serious affect on others.  It doesn't matter what choice is made.  There are none that won't affect others.  Folks need to think through things and plan for what they want - even discussing these things with their loved ones (assuming loved ones are old enough to have this discussion, of course).

 

My ideal world would be similar to the pets and farm critters we have.  Once life gets beyond hope or the quality of life seriously suffers, we make the hard decisions and have them put down.  Sometimes that saves them a few hours of suffering.  Sometimes a few days, months, or maybe a year.  We contemplate every aspect we can think of when we make those decisions, but in the end, we always make the decision we think is correct for their situation.

 

BUT, modern society frowns upon that with humans.  Instead, we try to prolong life well beyond what it should be - generally due to our religious beliefs or selfishness of not wanting to lose them.  We've created great measures to buy more time, but at what cost (not just financial)?  We sometimes force people into living a life they do NOT WANT just because WE want it for them.  There really is no greater injustice.  They've committed no crimes, after all.  They shouldn't be put into any sort of prison (at home, nursing home, etc).

 

Adults are fully capable of looking at their situation and deciding for themselves what they want for the end of life.  No decision is easy and no decision should be made against what someone else wants IMO (even the decision to want to continue living regardless of what's going on).

 

If society frowns upon that - so be it.  Society is not always correct.

 

NOTE:  I'm not talking about a depression situation where life seems hopeless, but it's a mental health situation that can be corrected instead.  I'm talking about real health/mobility/mental thought issues that arise at the end of life.  Life will be ending.  It's when and after how much suffering that's at stake.

 

Ironically, because society (right now - I think it's changing for the better) is so insistent that people can't make their own decisions, if I were in that position now (I'm not), I'd have to decide more quickly than necessary - just to ensure my wishes happened.  Society's trying to save those last few horrid days/months/years would actually shorten what's still reasonably decent.

Creekland, I know where you are coming from.  

 

The problem is that one truly does not know what life as an elderly person is really like when one is young and healthy.  Another problem is that THE END is not carefully labeled for us to recognize.  I used to believe that I would make myself DNR right now so that no one would ever do CPR on me if I died.  

 

Since I made those statements, my own mother's life has been saved, twice, by CPR.  And she is living independently at home.  The reality is that the end of life is sometimes just not that clear.  And the majority of people who are placed on a ventilator (to name one life saving intervention) survive and leave the hospital.  Again and again, I have seen people whose quality of life, to me, looks not great, choose to continue to live. The will to live is very strong.  

 

I don't know what society wants people to do.  And I'm not sure I know what you mean by society insisting that people can't made their own decisions.  What I do see is that when faced with dying, or living on with a reduced quality of life, people very, very often choose to live on.  The older I get, the better I understand why they choose to live on.  

[Guest]

It is good to think ahead on these things, but I want you all to have in your mind a bumper sticker I saw at a crucial moment in my life.  

 

My karma ran over my dogma.  

 

It's a good idea to have a plan and it's even better if you fund it.  But one of the things that is missing altogether too often is that things don't always (or even often?) go the way you think they will.  And maybe it is better to have a funded, documented plan...and hold onto it loosely and be able to flex with what *actually* happens in life.

 

Case in point:  a relative of mine had always planned that his house would sell for more than he paid for it, and that difference would fund his funeral and be enough for his wife to live on because he loved his job and was going to work right up to the end.  Enter Alzheimers.  Not only could he not work, he required constant monitoring, day and night and his 83yo wife was rapidly declining in health in taking on this task.  But no one in the family was able to take it on, either.  For a lot of reasons that were beyond their control.

 

Case in point:  a relative of mine had a loving family who wanted and did everything they could to care for him until he died at home.  He fell, his wife tried to help him up and damaged her back insodoing and as it turned out, he got MUCH better care in a facility than he could at home, even if they had spent down the savings to pay for in-home care.  

 

I have taken a couple of days to respond to the OP because the wording of the question sort of bothered me...here's what I hope/expect.  I don't expect my (only) son to take us into his home and care for us.  Or me.  Or my dh.  I do expect him to be respectful of the wishes we have taken the time and expense to plan for, including financial planning and lawyer-written directives and wills.  I expect him to call and visit...or at least answer the phone when we call.  I expect him to honor our religious teachings in our funerals and burials.  And I expect him to be honest in any role he has as executor, which role he will not be assigned until he is 30.  

 

My point is this:  I hope that I have been realistic enough in my planning to know that I could get Alzheimers and I have therefore spelled out what I want and I expect my son to honor my requests, especially as I have funded them.  It might be that I don't get Alzheimers but am physically frail...and my written plans have stated what I want in that case.  So you see, it won't be a matter of his "sticking me in a nursing home" but it will be a matter of his doing what I asked and taking me to a nursing home where I can be cared for.  Do you see the difference?

 

My dad died last June.  He had written out his wishes and I'm telling you, it made all the difference, because when I was making hard decisions that went against my nature, my experience and my hopes, my dad had my back in written form, and it was written fairly recently--not 40 years ago when he wasn't facing the realities of aging.  I was able to be confident in what I directed because I was just doing what he told me to do, in written form, signed by witnesses, within the past few years.  THAT is what should happen.  

 

I don't mean to pick at the OP:  the phrase, "sticking them in a nursing home" is part of our common parlance.  But in a great many cases it is exactly what has been requested, and what is the best thing for all involved.  

[Tsuga]

This.

 

My other children love their sibling. And although, yes, they've learned great lessons about human life & disabilities, etc- we cannot go away together as a family, ever. Right. So no family camping trips- mom can go or dad can go, but never mom & dad.

 

Day trips, ok, mom or dad-, but dads at work. So, I can't take the kids to the beach for the day, or hiking, or skiing, or anywhere for the day without careful planning & hiring a nurse. Then half the time, the nurse cancels & we can't go anyways.

 

Heck, forget about fun outings, I have to arrange things perfect just to get groceries. And all homeschooling & kid activities must be planned around dr appointments & therapies, of which there are many. And sleep, forget about it. Caring for someone who needs medical care is a full time job, even overnight.

 

I sound bitter, but I'm just being honest. This is what life is like here.

 

Now, having granny move in just because she doesn't want to take care of her big house anymore.. That's a different story.

 

You don't sound bitter. You are telling it like it is. And it needs to be said because the age structure of our society is such that many more of us will know your reality in the near future whether we think you sound "bitter" or not.

 

(Also, personal pet peeve: when people want to live in their bubble of ignorant happiness, they tell people who have experienced real suffering, pain and loss that they are 'bitter' or 'resentful' because the listener's bubble is threatened. It sounds like you may have encountered that at some time... if so, I am sorry.)

Edited February 17, 2016 by Tsuga

[Pam in CT]

It is good to think ahead on these things, but I want you all to have in your mind a bumper sticker I saw at a crucial moment in my life.  

 

My karma ran over my dogma.  

 

It's a good idea to have a plan and it's even better if you fund it.  But one of the things that is missing altogether too often is that things don't always (or even often?) go the way you think they will.  And maybe it is better to have a funded, documented plan...and hold onto it loosely and be able to flex with what *actually* happens in life.

 

Case in point:  a relative of mine had always planned that his house would sell for more than he paid for it, and that difference would fund his funeral and be enough for his wife to live on because he loved his job and was going to work right up to the end.  Enter Alzheimers.  Not only could he not work, he required constant monitoring, day and night and his 83yo wife was rapidly declining in health in taking on this task.  But no one in the family was able to take it on, either.  For a lot of reasons that were beyond their control.

 

Case in point:  a relative of mine had a loving family who wanted and did everything they could to care for him until he died at home.  He fell, his wife tried to help him up and damaged her back insodoing and as it turned out, he got MUCH better care in a facility than he could at home, even if they had spent down the savings to pay for in-home care.  

 

I have taken a couple of days to respond to the OP because the wording of the question sort of bothered me...here's what I hope/expect.  I don't expect my (only) son to take us into his home and care for us.  Or me.  Or my dh.  I do expect him to be respectful of the wishes we have taken the time and expense to plan for, including financial planning and lawyer-written directives and wills.  I expect him to call and visit...or at least answer the phone when we call.  I expect him to honor our religious teachings in our funerals and burials.  And I expect him to be honest in any role he has as executor, which role he will not be assigned until he is 30.  

 

My point is this:  I hope that I have been realistic enough in my planning to know that I could get Alzheimers and I have therefore spelled out what I want and I expect my son to honor my requests, especially as I have funded them.  It might be that I don't get Alzheimers but am physically frail...and my written plans have stated what I want in that case.  So you see, it won't be a matter of his "sticking me in a nursing home" but it will be a matter of his doing what I asked and taking me to a nursing home where I can be cared for.  Do you see the difference?

 

My dad died last June.  He had written out his wishes and I'm telling you, it made all the difference, because when I was making hard decisions that went against my nature, my experience and my hopes, my dad had my back in written form, and it was written fairly recently--not 40 years ago when he wasn't facing the realities of aging.  I was able to be confident in what I directed because I was just doing what he told me to do, in written form, signed by witnesses, within the past few years.  THAT is what should happen.  

 

I don't mean to pick at the OP:  the phrase, "sticking them in a nursing home" is part of our common parlance.  But in a great many cases it is exactly what has been requested, and what is the best thing for all involved.  

The bolded is precisely where Atul Gawande advocates patients (who have ultimate standing on "meaning of life" trade-offs), their doctors (who have insight into the medical aspects of treatment tradeoffs, even if their US training currently urges them to prolong life at any/all costs) and their loved ones (who often are left in the position of executing decisionmaking on behalf of the patients) get to. 

 

It really is very, very good.

[goldberry]

My FIL took care of his mother, because he believed it was his duty to never put her in a nursing home.  She definitely, without a doubt, 100% would have gotten better care in a decent facility, with him visiting on a regular basis.  He tried, but she needed more than he could keep up with.  It was horribly sad.

 

There is no one size fits all answer.  I hope that my child will do what is best for me, and for both of us.

[Lady Florida.]

 

My dad died last June.  He had written out his wishes and I'm telling you, it made all the difference, because when I was making hard decisions that went against my nature, my experience and my hopes, my dad had my back in written form, and it was written fairly recently--not 40 years ago when he wasn't facing the realities of aging.  I was able to be confident in what I directed because I was just doing what he told me to do, in written form, signed by witnesses, within the past few years.  THAT is what should happen.  

 

 

 

MIL had a living will and I think everyone in dh's family is glad she did. Without one, she could have been on life support for who knows how long yet never improve at all (all of the doctors were in agreement on that part, though they didn't try to tell him what he should do). FIL had difficulty carrying it out because he said it felt like "I'm killing my wife", but fortunately he had the support of family (and 3 of the adult grandkids in a medical or medical related profession) to remind him it was her choice, not his. He knows now that he did the right thing, but it was very hard to, as you say, go against his nature and his own hopes and desires.

 

It's a difficult thing to decide what kind of end of life care you want, but for those who have to say yes, "pull the plug" it's most painful. 

 

:grouphug: I know from seeing what FIL went through that that was not an easy thing to do, but you're right. Your dad had your back, even if he was no longer able to speak up. 

 

I think a living will is something everyone, regardless of age, should have. For some, that living will might say do everything you can to keep me alive and try to make me better. For others it will be completely the opposite - don't do that to me, just let me go. Either way, it helps those who have to make tough medical decisions for you if you can't speak up. As you get older, you can always change it if you decide you don't want what you originally stated. But accidents and illnesses can happen to anyone at any age. A living will isn't something just for older people.

[QueenCat]

 

Also, there's nothing wrong with assisted living.  Some older people prefer assisted living and their wishes should be respected. My crazy Great Aunt Vivian enjoyed her assisted living experience. She was always the party girl and she enjoyed all the activities and entertainments her facility provided until the very end when she needed round the clock medical care. 

 

 

 

This is one of the reasons my parents don't want to live with us. They are getting ready to move into one of those places where you can start in independent living, move to assisted and then if needed, nursing. If only one of them needs assisted living, they get to stay in the independent unit and have the assistance for the one come to them. They want the social environment that they wouldn't have living with us. With kids stuff and our working, we wouldn't be able to provide that for them.

[shawthorne44]

My father expected this.  And then he needed help with toileting.  The indignity of having one of his daughters assist him with bathroom functions was more than he could bear.  He spent the last ten months of his life in a nursing home. 

...

 

I've observed that there seems to be certain things that are the beginning of the end for many people.   Broken hip is one example.  Not being able to wipe yourself is another.  My MIL is one of those people that provides non-nursing care to elderly people.  I've learned from her that the rate is X, but if the person needs their butt wiped the hourly rate is 1.5X to 2X. 

 

One of the things I've picked out for the future master bath is a bidet toilet seat.   You just sit there on the toilet and it washes you and then blow-drys you!   You just sit there and push some buttons.  I figure that is a major quality of life investment if you might get to that point.   If someone needs eldercare assistance in their home, that bidet seat would pay for itself quickly by keeping the hourly rate normal. 

 

[creekland]

What I do see is that when faced with dying, or living on with a reduced quality of life, people very, very often choose to live on.  The older I get, the better I understand why they choose to live on.  

 

I'm all for individual choice.  As others have said, that choice needs to be discussed ahead of time so loved ones are aware of what the individual wants.

 

My background includes my grandmother mentioned earlier in this thread, my MIL living with Alzheimers and not recognizing people, saying things (out loud) way out of line even in public, and not able to do much for herself, a far cry from the lady she used to be - I suspect she'd be appalled if her younger self saw her current self, and an uncle who slowly passed away from Parkinsons, diabetes, and related issues.

 

Not quite as close to the present are my grandfather who passed away in the '90s at home after a long drawn out health issue.  He was a farmer who loved the outdoors.  Having to be bedridden changed him into an angry old man.

 

Then our new neighbor was a personal nurse for this man (very talented quadriplegic artist):

 

http://www.ericmohn.com/about.htm

 

At the end, he could have been saved and was asked about it.  His answer?  Are you kidding?  Don't you think I've been living in this body long enough (accident in '63 left him paralyzed)?  Sure he had his art (developed after the accident) and a great guy as his personal nurse (at least in his later years), but even then, it wasn't something he wanted to continue given his options.

 

I have no plans/desire to reach the point where either my mind or body fail to allow me independent living.  It's not me.  It's never been me.  I don't care to try to make it me.  I'd have mental issues going on the whole time if I were of sound mind, and if not, I see no reason for others to have to take care of my body after my mind is gone.

 

I have no issues with those who choose otherwise.  It's just very helpful if loved ones know where everyone stands on the issue.

 

My other grandparents died from a heart attack and murder.  Murder isn't ideal (obviously), but neither of them had to worry about making a decision.  None of us know which category we're going to be in.

 

FWIW, folks can think about it and make decisions now.  If they change their minds later (before it becomes an issue, but later), they can always change.  It's not a written in stone deal until it happens.

[lynn]

I don't expect my children to take care of us.  I don't think I'll ask not to be put in a nursing home.  However,  that is a decision to be made 25/30 years from now.

 

That being said healthy longevity runs in my family.  both my Oma and Nana  were taken care of by my aunt and mom and passed at 83 and 95 in their homes.   Nursing homes were never an option talked about as far as I know. 

[Pam in CT]

re living wills and evolving candid conversations about meaning of life:

MIL had a living will and I think everyone in dh's family is glad she did. Without one, she could have been on life support for who knows how long yet never improve at all (all of the doctors were in agreement on that part, though they didn't try to tell him what he should do). FIL had difficulty carrying it out because he said it felt like "I'm killing my wife", but fortunately he had the support of family (and 3 of the adult grandkids in a medical or medical related profession) to remind him it was her choice, not his. He knows now that he did the right thing, but it was very hard to, as you say, go against his nature and his own hopes and desires.

 

It's a difficult thing to decide what kind of end of life care you want, but for those who have to say yes, "pull the plug" it's most painful. 

 

:grouphug: I know from seeing what FIL went through that that was not an easy thing to do, but you're right. Your dad had your back, even if he was no longer able to speak up. 

 

I think a living will is something everyone, regardless of age, should have. For some, that living will might say do everything you can to keep me alive and try to make me better. For others it will be completely the opposite - don't do that to me, just let me go. Either way, it helps those who have to make tough medical decisions for you if you can't speak up. As you get older, you can always change it if you decide you don't want what you originally stated. But accidents and illnesses can happen to anyone at any age. A living will isn't something just for older people.

 

Yes.

 

One of the parts of Being Mortal that has stayed with me is the importance, as we age and inevitably suffer loss of function, of thinking through and communicating the functions that each of us consider elemental to our well-being.  Not body parts, but function: ability to write, to speak, to paint, to share a glass of wine with a loved one, whatever.  For one patient Gawande interviewed, being able to watch a favorite TV show with his wife.  Whatever it is.  

 

The medical team will think in terms of body parts; it is up to the individual to think in terms of function and communicate which are essential to a life of meaning.  And as Kathy says, that can evolve and change.  These conversations aren't one-off and cast in stone.

[fairfarmhand]

It is good to think ahead on these things, but I want you all to have in your mind a bumper sticker I saw at a crucial moment in my life.  

 

My karma ran over my dogma.  

 

It's a good idea to have a plan and it's even better if you fund it.  But one of the things that is missing altogether too often is that things don't always (or even often?) go the way you think they will.  And maybe it is better to have a funded, documented plan...and hold onto it loosely and be able to flex with what *actually* happens in life.

 

Case in point:  a relative of mine had always planned that his house would sell for more than he paid for it, and that difference would fund his funeral and be enough for his wife to live on because he loved his job and was going to work right up to the end.  Enter Alzheimers.  Not only could he not work, he required constant monitoring, day and night and his 83yo wife was rapidly declining in health in taking on this task.  But no one in the family was able to take it on, either.  For a lot of reasons that were beyond their control.

 

Case in point:  a relative of mine had a loving family who wanted and did everything they could to care for him until he died at home.  He fell, his wife tried to help him up and damaged her back insodoing and as it turned out, he got MUCH better care in a facility than he could at home, even if they had spent down the savings to pay for in-home care.  

 

I have taken a couple of days to respond to the OP because the wording of the question sort of bothered me...here's what I hope/expect.  I don't expect my (only) son to take us into his home and care for us.  Or me.  Or my dh.  I do expect him to be respectful of the wishes we have taken the time and expense to plan for, including financial planning and lawyer-written directives and wills.  I expect him to call and visit...or at least answer the phone when we call.  I expect him to honor our religious teachings in our funerals and burials.  And I expect him to be honest in any role he has as executor, which role he will not be assigned until he is 30.  

 

My point is this:  I hope that I have been realistic enough in my planning to know that I could get Alzheimers and I have therefore spelled out what I want and I expect my son to honor my requests, especially as I have funded them.  It might be that I don't get Alzheimers but am physically frail...and my written plans have stated what I want in that case.  So you see, it won't be a matter of his "sticking me in a nursing home" but it will be a matter of his doing what I asked and taking me to a nursing home where I can be cared for.  Do you see the difference?

 

My dad died last June.  He had written out his wishes and I'm telling you, it made all the difference, because when I was making hard decisions that went against my nature, my experience and my hopes, my dad had my back in written form, and it was written fairly recently--not 40 years ago when he wasn't facing the realities of aging.  I was able to be confident in what I directed because I was just doing what he told me to do, in written form, signed by witnesses, within the past few years.  THAT is what should happen.  

 

I don't mean to pick at the OP:  the phrase, "sticking them in a nursing home" is part of our common parlance.  But in a great many cases it is exactly what has been requested, and what is the best thing for all involved.  

 

Ah...I know the wording was awkward and the conversation is tricky.  There are so many nuances to this discussion. Like are we talking about people living for years in bed or are we just talking living with family to keep Nana from lying on the floor for days after a fall?

 

It is so important to consider all the dynamics of the possibilities and then flex with life.

It's important to ponder these facts and write down your wishes while you still can make that decision with less emotion.

 

I think some parents EXPECT that their kids will always personally care for them. And they can't flex with the fact that sometimes the kids have lives that make that impossible.

 

And yes, seniors are adults and entitled to make less than stellar decisions and the kids need to try to accommodate those. And yet, if those decisions unfairly presume upon others, those kids are also entitled to say, "I wish it were different, but no,  I can't do that."

 

 

Aging is hard.

 

Watching parents age is hard.

 

But it will come to all of us, barring an early death. :) And it's wise to enter those years on your own terms with a plan in place than to have it suddenly thrust upon you without having thought things through.

 

I think about these things. I watched my mom live ten years as an invalid after brain cancer invaded her body. I probably consider these things earlier than my peers because  I watched that and saw the impact it had on my family. I know how difficult it is year after year. So when I hear friends go "I told my kids that they should never put me in a nursing home, that's why I had 3." I think "Do you really mean that? Do you know how bad it can get? "

 

When my mom was so sick, my dad made contingency plans for her in case something happened to him. None of them involved his kids personally providing care for her. He said, "y'all have marriages. Y'all have children. I'm not going to do that to you and I know that you'd want to, but this level of care would turn your life completely upside down and inside out and your mom and I don't want that for you."

[StaceyinLA]

Well, I'm not sure what I have ever expected, but I will tell you this; after having my mom in a nursing home facility for skilled care (which is probably turning into long-term care for many reasons), I just hope I never reach a point where I rely that much on anyone to care for me. I wouldn't want to be a burden to my children, but that nursing home business is kinda for the birds.

 

Best case scenario for me is to be active and mentally alert up until the moment my time on earth is done (but still hoping that is a few decades away). ;-P

[lynn]

MIL had a living will and I think everyone in dh's family is glad she did. Without one, she could have been on life support for who knows how long yet never improve at all (all of the doctors were in agreement on that part, though they didn't try to tell him what he should do). FIL had difficulty carrying it out because he said it felt like "I'm killing my wife", but fortunately he had the support of family (and 3 of the adult grandkids in a medical or medical related profession) to remind him it was her choice, not his. He knows now that he did the right thing, but it was very hard to, as you say, go against his nature and his own hopes and desires.

 

It's a difficult thing to decide what kind of end of life care you want, but for those who have to say yes, "pull the plug" it's most painful. 

 

:grouphug: I know from seeing what FIL went through that that was not an easy thing to do, but you're right. Your dad had your back, even if he was no longer able to speak up. 

 

I think a living will is something everyone, regardless of age, should have. For some, that living will might say do everything you can to keep me alive and try to make me better. For others it will be completely the opposite - don't do that to me, just let me go. Either way, it helps those who have to make tough medical decisions for you if you can't speak up. As you get older, you can always change it if you decide you don't want what you originally stated. But accidents and illnesses can happen to anyone at any age. A living will isn't something just for older people.

 

I agree with this.  We just signed ours.    It is not as simple as yes  or no on life support there is a lot more to consider.    I don't want to waste resources to be kept alive if I can't enjoy life.  So my wishes in my living will are very clear.  It's hard to see it in writing but the kids will have no second guessing what mom would have wanted.    

 

I hounded my mom to put hers and dads together before dad had surgery she said she did.  .    Will it be hard when the time comes for his final wishes, absolutely but we all know exactly what he and mom want.

 

[FO4UR]

I've seen some assisted living situations that are enviable.  A private room/suite is just down the hall from a community area with a kitchen (where food is cooked 3x a day for you to eat family style) and a large space for reading, puzzles, games, music, or just sitting...an outside area for walking.  I wouldn't mind a situation like that, especially if I had some friends there with me.

 

Then I've seen nursing homes that are deplorable.  I'd rather not be alive than have to live there.

 

 

What do I hope or expect? I think I'll have to work until I drop b/c I am homeschooling right now and not paying into any sort of retirement for me.  There is literally no plan at all for me when I reach retirement age.  I became a SAHM young, so I won't even have social security to speak of.  I hope I can support myself by tutoring until I'm 90.

[creekland]

Best case scenario for me is to be active and mentally alert up until the moment my time on earth is done (but still hoping that is a few decades away). ;-P

 

This is my plan too.  I just plan to adjust the end of life to see to it that it happens (barring an accident that messes things up, but not enough to end life).  It ought to still be a couple of decades away, but it's worth thinking about now IMO.  Actually, had I not been witness to my grandma and MIL I doubt I'd have thought seriously about it, but I was/am witness to both of those and I know what I don't want.  My boys, though younger, have seen it too and feel mostly similar.  It's amazing how the brain can wake up to first hand experiences.

[goldberry]

 

I have no plans/desire to reach the point where either my mind or body fail to allow me independent living.  It's not me.  It's never been me.  I don't care to try to make it me.  I'd have mental issues going on the whole time if I were of sound mind, and if not, I see no reason for others to have to take care of my body after my mind is gone.

 

I have no issues with those who choose otherwise.  It's just very helpful if loved ones know where everyone stands on the issue.

 

 

Just something to think about... my mom always said the same thing.  She has a hard past and experienced lots of grief.  She always said, I don't plan on clinging to life, I'm already tired anyway.

 

She has always had a weight issue (underweight) and always said, when I'm done I'll just stop eating.  Realistically, if she did that, it wouldn't take much.

 

Now she has dementia.  *but she doesn't realize it*.  That's the thing.  She thinks she can still be independent and we are just over-reacting at best, and at worst trying to control her.  So she isn't thinking I have now reached the point where I can't live independently so I would rather be dead.  She is thinking, what is wrong with these other people in my life? and fighting it every step of the way.

 

I'm just sharing a different perspective.  My mom always said, you'll never have to worry about making those choices for me.  That's not what has ended up happening.  If you are mentally compromised, your previous views and choices go out the window.

[HS Mom in NC]

Having been part of team B caretakers when team A caretakers needed a breather, I can tell you from the front lines that things are not nearly as cut and dry as we all want them to be.  You can't plan for everything so some flexibility is in order. As stated upthread, be prepared to change your views on things as you get older and more frail and be prepared for your caretakers to change their views on things too. 

Caretakers often have to choose between only unpleasant choices. For example, Grandmother was very anxious by nature and her Alzheimer's made it understandably worse because confusion and forgetfulness feed fretfulness.  The doctor said she could take some anti-anxiety meds BUT they caused dizziness.  Now the broken hip factor comes into play.  People with frail health who break a hip rarely get out of bed again and have little quality of life left.  Do you medicate or not? Mom chose not to medicate her for anxiety.

Grandmother could barely hear.  She also had cataracts that were getting very bad.  She knew she needed eye surgery and was very anxious about it and didn't want to do it. If they didn't do the surgery she would lose what little eye sight she had left and watching TV, the horses and the great grandkids kids which were what she enjoyed doing as she wasn't physically active.  No surgery meant losing those things.  Surgery meant pressuring an uncooperative patient into a procedure she didn't want but would preserve the things she most liked to do. Blindness would mean almost no quality of life. Do you insist on surgery or not?  Mom did insist so Grandmother could keep her vision with surgery but has since second guessed that decision.

 

All that was to point out that there were no easy, clear cut decisions there.  There were good reasons to go either way on both of those and while not every caretaker would decide the same way, we have to stop putting pressure on caretakers to make the "right" decisions as though there's a wrong one.  Not every person on the planet is a logical, rational person by nature and some people who were when they were younger lose their ability to think the way they did when they were younger.  At some point, someone else will have to decide for them and do the best they can.  It's important that the siblings and children of those caregivers give some support as they make hard decisions for their loved ones as long as they're not doing something crazy. 

[fairfarmhand]

Having been part of team B caretakers when team A caretakers needed a breather, I can tell you from the front lines that things are not nearly as cut and dry as we all want them to be.  You can't plan for everything so some flexibility is in order. As stated upthread, be prepared to change your views on things as you get older and more frail and be prepared for your caretakers to change their views on things too. 

 

Caretakers often have to choose between only unpleasant choices. For example, Grandmother was very anxious by nature and her Alzheimer's made it understandably worse because confusion and forgetfulness feed fretfulness.  The doctor said she could take some anti-anxiety meds BUT they caused dizziness.  Now the broken hip factor comes into play.  People with frail health who break a hip rarely get out of bed again and have little quality of life left.  Do you medicate or not? Mom chose not to medicate her for anxiety.

 

Grandmother could barely hear.  She also had cataracts that were getting very bad.  She knew she needed eye surgery and was very anxious about it and didn't want to do it. If they didn't do the surgery she would lose what little eye sight she had left and watching TV, the horses and the great grandkids kids which were what she enjoyed doing as she wasn't physically active.  No surgery meant losing those things.  Surgery meant pressuring an uncooperative patient into a procedure she didn't want but would preserve the things she most liked to do. Blindness would mean almost no quality of life. Do you insist on surgery or not?  Mom did insist so Grandmother could keep her vision with surgery but has since second guessed that decision.

 

All that was to point out that there were no easy, clear cut decisions there.  There were good reasons to go either way on both of those and while not every caretaker would decide the same way, we have to stop putting pressure on caretakers to make the "right" decisions as though there's a wrong one.  Not every person on the planet is a logical, rational person by nature and some people who were when they were younger lose their ability to think the way they did when they were younger.  At some point, someone else will have to decide for them and do the best they can.  It's important that the siblings and children of those caregivers give some support as they make hard decisions for their loved ones as long as they're not doing something crazy. 

 

Yes, yes, yes.

 

So important to allow the primary caregiver that latitude and support them in what they feel is best. AFter all, they are the ones who will have to deal with the consquences of the decision.

 

[livetoread]

I'm with Creekland. I feel strongly that I want the option to end my own life on my own terms, if that becomes desirable for me. I know circumstances might make that impossible, but I feel quite warmly about saying goodbye to those I love and choosing an easy death. I know there are problems with that option too, but I have no qualms about keeping it as an option if needed. I see it as more desirable than some of the alternatives.

[heartlikealion]

I don't think it's reasonable these days to have too many expectations -- in either direction I guess. I mean, things happen. Life happens. What if someone makes a promise and then when the time comes, they are single and unemployed trying to find another job? Or gone 12hrs at a time? Or absolutely do not have the caregiver personality? Would having someone move in with them really be a great idea?

 

Dh has much more of a caregiver personality. I would probably be terrible at it, snapping at the person at some point. My dad's mom is not living with him and my mom (don't think that would ever fly) but they do look out for her in other ways. She's 100 and has someone come to the house a few times a week. They see each other, but not as often now that they don't live in the same town. It's just too hard.

 

My dad is my mom's caregiver, but realistically we know that it's taking a toll on him and I don't think anyone's made any promises about how long he can act as primary caregiver. I don't like to think about it.

[Jane in NC]

There is something else that needs to be mentioned here which I think fits into the eldercare dynamic:  who in the family needs to be in control?

 

Adult children often act against their parents' wishes, particularly when they do not view their parents' wishes as realistic. For example, many of us have had friends whose parents moved from the chilly north to Florida.  All was well until the aging parent could no longer drive, needed help with doctors, etc.  Some adult children can orchestrate their lives to go to Florida for a week every month or two to accommodate the parent's needs.  Others cannot--particularly if the aging parent is not offering financial assistance for flights and rental cars.  Here is a case where families might intervene to move the aging parent closer to one of their adult children who can step into help more easily.

 

I have seen family dynamics where one sibling believes that he or she knows what is best for Mom or Dad and thus shoulders the responsibility.  On the one hand, this is great since someone is stepping to the plate.  In my own family though I have seen where the person on the ground does not want to discuss care for the parent with anyone else in the family, essentially ostracizing others for not participating in the day to day even if they have offered.  This may not be clear unless you know a control freak.  I have witnessed some ugly battles and was told to keep out since I was not involved in the day to day. 

 

My father in law declined over the course of a number of years and remained at home in part due to the graciousness of his church family.  I have a friend who utilizes a service where volunteers drive her to doctors and the groceries since she can no longer drive--and she wants time with her family to be pleasurable not filled with errands.  I have known families that did not want strangers  (like the aforementioned service) utilized because it appeared that the family was not doing its duty. 

 

There is no one answer here not only because of the variety of health situations and social service offerings but because of personalities and family dynamics.  I am grateful for this thread though because it led to a chat with my young adult son who says now that he'll have his aging parents move in with him.  But then he travels for a living so he sees how this can work to everyone's advantage.

[creekland]

If you are mentally compromised, your previous views and choices go out the window.

 

I agree totally, so it's also something I'll be watching for.  Alzheimers does not run in my family, so that's a good start - no guarantee, of course, but a good start.

 

Mental compromise due to an accident can throw everything out the window too.  Hubby and my guys know in that case to just do what they feel is best knowing my preferences, but I don't expect them to jeopardize their lives helping me at any point.  Hopefully the law will change before that would happen.

 

 I see it as more desirable than some of the alternatives.

 

This is definitely a good way to sum it up.  The end is rarely pretty - esp for those left behind - but it doesn't have to be ugly.  It's not a love affair with death or depression or anything like that.  It's avoiding descending into the pit.  There's nothing wrong with preferring life over death at that point for those who choose to do so, but that choice isn't the first preference of all of us.

 

There's no way I can envision being content with others taking care of me.  According to my mom, I wasn't happy as a youngster with that either.  I've been as independent as possible since my memories began and I'm sure as heck not giving that up at the end - not willfully anyway.

 

90 and still getting around and handling life ok with some assistance here and there?  Not a problem.  45 and unable to do so?  Not for me. 

 

(ps  I'm already past 45, so no worries about clairvoyance!)