s/o Lessons Learned From Elder Care

[HS Mom in NC]

This thread is a spin off ofAging chronically ill parent, palliative care, stuff I can’t sort out, siblings unevenly involved
For those of you have been through elder care, what have you learned from it that you apply to your own life?

How did your perspective on aging change?
What assumptions about aging were you getting wrong?
What surprised you?  What did your elder care experience reinforce?What changes did you make in your own life to avoid problems your elders faced? What do you think society and individuals need to know and do to improve elder care?
What are society and individuals getting right?

I'll post mine a little later, I'm trying to articulate some of the things swirling in my head right now as I remember caring for grandparents and dealing with my now elderly parents.

[wintermom]

My parents and mil are in their 80s, and they are still very independent. So I don't have any experience with serious hands-on elder care. I do notice a couple things, though.

What is surprising me about my aging parents is their determination to stay put and fear of change. They used to be up for a challenge and moved quite a bit in their early retirement years.

There is also a great deal of uncertainty in their lives, as far as personal and spouse health and finances that does a number on self-confidence. 

I don't know if any of this can be changed. It all seems completely understandable as it is the "nature of the beast" with aging. Even with careful retirement financial planning and good health care, there is so much uncertainty.  It's really nice to have family and friends in close proximity to help out.

[Katy]

I will take after the grandparents who picked out their own nursing home and moved themselves in vs the ones who refuse to go.

Other than that I have nothing.

I hope I'm one of the people who is nice to the nurses vs awful.  I know I won't have any control of that because dementia but that's what I hope.

[Carol in Cal.]

The fierce determination to stay in their own home was more dominant than I had foreseen.

Also, the difficulty in getting that theoretical 100 days of care from Medicare was an unwelcome surprise.

[fairfarmhand]

While my mom died at 52, she was an invalid for many years.

My dh's dad was only 62, but he was ill for about 2 years, bedfast for about 1 of those.

I have lots of thoughts, and I plan to write myself a letter to be read to myself when I am old. I definitely hope my kids don't have to care for me when they have young kids at home. I also am cultivating right now the characteristics that I want to have as an older person, since I've seen so many times that a person becomes "more of themselves" as they age. Someone who is a sweetheart as a young person becomes even more so as they age vs, the people who are stinkers when they're younger become horrible to deal with.

Here's a question for discussion: Is there a way to avoid becoming inflexible as one ages? I know with dementia, one has little control over that. But some people without dementia just struggle with this. 

[Carrie12345]

I have parents who won’t discuss future plans/options/desires while they’re still in a position to put things in order, or at least give us some hints.

I’m in my early 40s and working to take charge of my financial future. I intend to discuss all of my old lady plans/options/desires with my kids way before I get to that point.

[Carrie12345]

4 minutes ago, fairfarmhand said:

I also am cultivating right now the characteristics that I want to have as an older person, since I've seen so many times that a person becomes "more of themselves" as they age. Someone who is a sweetheart as a young person becomes even more so as they age vs, the people who are stinkers when they're younger become horrible to deal with.

This is truly lovely.
My grandmother isn’t really aware (outwardly, at least) of much.  She can’t see, she doesn’t remember people, she doesn’t know when or what she ate, etc.  But that woman will STILL answer anything you say with “Isn’t that nice?!” And “Oh, how wonderful!” With the same exact genuine sweetness that I’ve known for my entire life.

I am not that sweet. 😕 

[fairfarmhand]

35 minutes ago, Homeschool Mom in AZ said:

This thread is a spin off ofAging chronically ill parent, palliative care, stuff I can’t sort out, siblings unevenly involved
For those of you have been through elder care, what have you learned from it that you apply to your own life?

How did your perspective on aging change? Nobody pictures themselves being sick in the bed and unable to take care of themselves. O
What assumptions about aging were you getting wrong?
What surprised you?  What did your elder care experience reinforce?What changes did you make in your own life to avoid problems your elders faced? What do you think society and individuals need to know and do to improve elder care?
What are society and individuals getting right?

I'll post mine a little later, I'm trying to articulate some of the things swirling in my head right now as I remember caring for grandparents and dealing with my now elderly parents.

It seems that money is the biggest factor in being able to go through these years with dignity and without panicky "What are we going to do!!!!" moments. My dh and I live carefully, and plan to continue that, even when he starts getting a pension and we've paid off our house. We do not want our children to have to have their lives come to a total complete screeching halt because their parents have medical stuff. 

I've seen personally that it's EXTREMELY hard to be a good physical caregiver while maintaining a good relationship with the parent. Not that anyone is being ugly or anything, but physical caregiving takes so much out of people that finding time and energy to talk and enjoy the elder person can feel impossible. Could just be that when that time happened, all the kids had  young children of their own, but really, I want to make sure that financially things are taken care of so that my children can be my sons and daughters. I I can pay lots of people to wipe my butt and help me bathe but I only have four children.

When people do not plan for this financially, they can sometimes force their children to be the physical caregivers and will miss out on some of the relational stuff. And with paid caregivers, you definitely get what you pay for . The good ones do not come cheap.

Edited January 14, 2020 by fairfarmhand

[regentrude]

30 minutes ago, fairfarmhand said:

Here's a question for discussion: Is there a way to avoid becoming inflexible as one ages? I know with dementia, one has little control over that. But some people without dementia just struggle with this. 

I believe so. I think a constant exposure to new situations and ideas goes a long way towards building flexibility.  I would expect people who are challenging themselves physically and mentally, who are seeking new things to learn and who cultivate a mindset that one is never too old to start over to be having an easier time. It requires challenging our society's youth obsession and views on aging. Never tell yourself you are "too old" for something. Don't make self-deprecating jokes that turn into self-fulfilling prophecies. Don't  mentally retire. By all means, retire from a job - but only to pick up another meaningful pursuit.

Edited January 14, 2020 by regentrude

[Lang Syne Boardie]

1. I'm going to leave the care of my own parents to their children whom they have NOT criticized, alienated, and shunned. Whatever buttons were installed in me to feel warm or fuzzy about sacrificing my middle age to their care, have disassembled themselves. I would feel differently if they didn't have children who were ready, willing, and able to fill that role, whom they DO like. But since they cultivated those relationships while abusing me and my children, that'll be their end scenario. 

2. Because I love my children, I am working toward every possible plan to leave them free to live happy lives and provide for their own families without worrying about me, or being responsible for me. They'd all do it. But there's a literal document with the will that is a letter telling them all that if I am childish or dependent or talking as if I "demand" that they let me live with them, or that they give me money, or whatever -- that's not the "Real Mama." The real Mama always told you that if I ever talk like that, my mind is going and it's time to call the doctor. The real Mama would rather be in assisted living with age-peers, even if it's kind of rough, than to think of your family losing its best chance for health, happiness, security and safety because of me. I don't want your wife bathing me. I don't want your teens tiptoeing around the situation. This is all in the will, along with my no-extraordinary-measures directives and world's most frugal burial plans. Get me into the best situation that is possible without impoverishing your family, and check on me now and then. That's what I want. Not just because I don't want your family to "suffer" - I don't think it's suffering to take care of people, at least not by definition. But I also want the privacy and dignity of going through that stuff by myself. I'll meet you with my hair curled and makeup done, for breakfast in the nursing home's dining room. What I went through last night, health wise, is my business, if I'm 80.

The second half of this is a commitment to as much health and wealth and preparation as possible, for their Dad and me. We can't prevent all death, diseases, or disasters, but as long as we are able, we'll be as healthy and smart as possible. We won't be sloping into upper middle age, waiting for the inevitable, pretending we're not aging - we will actively pursue health and wealth for as long as we can. And we'll do the Swedish Death Cleaning ten years before we really think it might be necessary.

I actually feel quite energized about the whole thing. After an abusive and neglectful childhood, and a sacrificial (but highly rewarding) era of raising children, I am excited about having the time and energy to take charge of my own plans for my own future. I know it might not all work out exactly as I want, but there is a lot within my control, as far as how I leave the situation for my children. I'm very glad to know about those options.

[PrincessMommy]

15 minutes ago, fairfarmhand said:

While my mom died at 52, she was an invalid for many years.

My dh's dad was only 62, but he was ill for about 2 years, bedfast for about 1 of those.

I have lots of thoughts, and I plan to write myself a letter to be read to myself when I am old. I definitely hope my kids don't have to care for me when they have young kids at home. I also am cultivating right now the characteristics that I want to have as an older person, since I've seen so many times that a person becomes "more of themselves" as they age. Someone who is a sweetheart as a young person becomes even more so as they age vs, the people who are stinkers when they're younger become horrible to deal with.

Here's a question for discussion: Is there a way to avoid becoming inflexible as one ages? I know with dementia, one has little control over that. But some people without dementia just struggle with this. 

I also want to cultivate characteristics that age well and I would love to know what tricks can help my mind (and personality) stay flexible.   But, I have to add I was completely discouraged by the experience of an elderly friend who did not age well.

She was someone many of us looked up to.  She exercised regularly (tennis, ping-pong), she took the stairs to her 11th story apartment just about every time.  She ate very well and was always careful about her weight.   She led a woman's bible study once a week and was very involved with her church.   She was a steady calm type of person.  Then she fell playing tennis and broke both wrists, ended up in rehab for a long period, then her mind started going.  She became a cranky, combative patient.  It was one thing to see her memory go, but to watch someone who had never said a curse word in her life to become angry and verbally abusive was so devastating.   I know that putting her on anti-depressants helped calm her down - thankfully for the family.   I still think of her (she has since passed away) whenever I hear about all the things to do age well and avoid dementia.  She checked all the right boxes and it was still a very difficult struggle in a way no one would have expected.

 

[regentrude]

My parents are, at 76 and 83, still independent, but I can see several issues looming. Their home is not senior friendly, and impossible to live in with mobility impairment - a hill and 70+ steps until you reach the house. While my mother recognizes this and wants to start looking for alternatives, my dad is in firm denial. Same about the contents of the house. Packed to the gills with nice things, not hoarded junk, but still - we will have to clean it out. Dad said he is going to lock it and hand us the key. Gee, thanks.

For myself, my lessons are:

• take good care of my health with nutrition and exercise. My mom does, and is in great shape for her age. My dad has been sedentary forever, and some of his issues can be attributed to that.
• cultivate a good relationship to my adult children. Not because I want them to physically nurse me, heaven forbid. But if is likely that, as elders, we may need their help with some things.
• have my affairs in order. Minimize possessions, have paperwork organized and easy to find for next of kin. Have a will and medical POA drawn up. Make sure my kids know my wishes re end of life care. The greatest gift I can give my kids is to make logistics easy for them.
• consider moving to a state that allows physician assisted suicide. 

Honestly, if my health allows, old age will be the time to take up high risk sports. I prefer to die by falling off a mountain than in a hospital

Edited January 14, 2020 by regentrude

[regentrude]

3 minutes ago, Seasider too said:

Oh and a math sentence for you:

quality of life > quantity of life

Amen. 

[Lang Syne Boardie]

@regentrude, the "fall off a mountain at 90, if sick" is literally my DH's plan. He's an outdoorsman from way back and has joked grimly (but not actually joking) about all the ways he could shuffle off the mortal coil without having to move to physician assisted suicide state. The mountain idea, specifically, would be his favorite, because I'm supposed to scatter his ashes on his favorite Rocky Mountains trail. So he could just be geographically near, already.

Edited January 14, 2020 by Lang Syne Boardie

[PrincessMommy]

6 minutes ago, regentrude said:

My parents are, at 76 and 83, still independent, but I can see several issues looming. Their home is not senior friendly, and impossible to live in with mobility impairment - a hill and 70+ steps until you reach the house. While my mother recognizes this and wants to start looking for alternatives, my dad is in firm denial. Same about the contents of the house. Packed to the gills with nice things, not hoarded junk, but still - we will have to clean it out. Dad said he is going to lock it and hand us the key. Gee, thanks.

For myself, my lessons are:

• take good care of my health with nutrition and exercise. My mom does, and is in great shape for her age. My dad has been sedentary forever, and some of his issues can be attributed to that.
• cultivate a good relationship to my adult children. Not because I want them to physically nurse me, heaven forbid. But if is likely that, as elders, we may need their help with some things.
• have my affairs in order. Minimize possessions, have paperwork organized and easy to find for next of kin. Have a will and medical POA drawn up. Make sure my kids know my wishes re end of life care. The greatest gift I can give my kids is to make logistics easy for them.
• consider moving to a state that allows physician assisted suicide. 

Honestly, if my health allows, old age will be the time to take up high risk sports. I prefer to die by falling off a mountain than in a hospital

oh my goodness... this so much. 

[PrincessMommy]

10 minutes ago, Seasider too said:

Oh and a math sentence for you:

quality of life > quantity of life

I'm not a proponent of physician assisted suicide but I have read Being Mortal and will be satisfied to say enough is enough when it comes to medical treatment.

(debate as you wish)

Yes, I agree.  We have to be brave enough to stay it is time to stop treatments, etc and allow the natural process to take its course.

I'm not a big fan of living a 100+ yr old life either.  I don't want to live that long.

[prairiewindmomma]

I used to be firmly against physician assisted suicide, but after some experiences in my family (including an attempted suicide by gun by an elderly family member who saw themselves slipping into dementia and didn’t want to go to a nursing home) and watching how poor pain control can be with some deaths....I am now for letting people have the option. In fact, I live in a state that allows it. 

We don’t talk about healthy aging and death enough, as a society. We also don’t have a medical structure that allows for transitional care. I think these things add to the overall fear load. Good care comes at a price, but we also have a lot of people who don’t have funds available. And, realistically, at $9k/month for a dementia unit, could probably never save enough to pay for several years of care. My grandmother blew through $500k in the last several years of her life...just in medical care because the nursing home couldn’t keep her because of the severity of her dementia.

 

[HS Mom in NC]

My experience with elder/terminal illness care has been with increasingly bad dementia for almost 10 years, leukemia for 6 months, and had relatives from ages 47 with preteens in the home to relatives 75 years with adult children die of cancer, one after 11 years of fighting it.

One issue I've been chewing on is what health maintenance means in the context of quality over quantity.  Here's the kicker, if you have all the preventive testing and early intervention for some illnesses, you're actually setting yourself up to waste away slowly.  If you choose not to do the preventive care, you are more likely to have a catastrophic incident that kills you suddenly. 

Example: Dad had a "widow maker" blockage in his artery. In his early 70s a scan picked it up before he had any symptoms.  He had it treated.  The doctor said if it hadn't been, odds are extremely high that one day he would've been doing whatever (gardening or riding his bicycle probably, he loves those) and BAM!! He'd have a heart attack and be dead before he hit the ground. 

When most people talk about how they want to die, it usually involves a quick catastrophic death.  I'd prefer that too.  So would I want to have a doctor remove something that will likely do that for me?

Example: MIL's sister age 64 and mother's first cousin early 70s.  Both refused to have any preventive screening/care and neither was health conscious.  Both had some form of cancer that went undetected before symptoms showed up.  Both ignored symptoms until they couldn't-about 1 month before each of their deaths. Both went immediately into hospice situations at that point, when they would've been eligible for hospice sooner if they had been diagnosed.

Most people want to not have things go on and on.  I'm seeing the wisdom in not intervening, but having hospice on hand, I'd just want a diagnosis first, so that means diagnosis either at the point of early screening, or at the onset of symptoms.  (I get people who still have children at home buying every minute they can get-that's a different scenario.)

So I agree that quality of life >quantity of life, but I think there are situations where we could be mistaken about how to get there.

I do agree that people should be watching their diets, getting at least low impact exercise, and intentionally participating in activities that nourish mind, body, and soul, and I think we have to be much more explicit about the short, mid, long term consequences of medical intervention, including for treatable conditions.   I wasn't around for my dad's doctor visits, I just stayed with him a couple of days after recovery from surgery, but I doubt the doctor said, "Yes, we can treat this heart blockage and it's a valid choice. Understand that if we successfully treat a condition that will likely kill you quickly sooner, you're more at risk to die of a long term illness like cancer later. Choosing not to intervene is an equally valid choice.  Which is more in line with what you want the end of your life to look like?" 

[HS Mom in NC]

Life Lessons:

Read Being Mortal

Keep my house in order, both figuratively and literally.  Pay off the house ASAP (Interest drains long term savings potential) and keep it in good repair should we need to sell it suddenly. We got the estate planning documents completed ASAP and in a convenient binder.  Get rid of objects I'm not using when I no longer use them. Get into good habits/practices physically, emotionally, and spiritually. Don't put off maintenance in any of those areas.

Make peace with all possible future scenarios. When I need to move, I need to move.  If my kids care for me, great.  If I have in home care, great. If I share my house with other elders, great.  If I'm cared for in a facility, great.  They are all valid options and I'm not entitled to any particular one when I can no longer care for myself.

Assume my end will be particularly difficult, and accept it. If it doesn't end that way, Yay! If it does, I'm prepared.  Explain to the kid in charge of that she can only make the best decision she can at the time with the information she has at the time and resources she has at hand at the time, and that's more than good enough.  Tell her not to second guess herself after or beat herself up after with, "If I had only known...." or "If only X had been an option..." Remind her that predicting the future is hard-no one expects her to be able to do that. We have advanced care directives and she is given the ability to override them if she has a good reason too, because you can't anticipate every scenario. 

Think about and talk about my death on a at least a monthly basis. It's going to come at some point and I don't want to be upset about it.  Regularly work through what I believe about death and the afterlife and ask myself if I'm living accordingly. If not, adjust. 

Edited January 14, 2020 by Homeschool Mom in AZ

[regentrude]

1 hour ago, Lang Syne Boardie said:

@regentrude, the "fall off a mountain at 90, if sick" is literally my DH's plan. He's an outdoorsman from way back and has joked grimly (but not actually joking) about all the ways he could shuffle off the mortal coil without having to move to physician assisted suicide state. The mountain idea, specifically, would be his favorite, because I'm supposed to scatter his ashes on his favorite Rocky Mountains trail. So he could just be geographically near, already.

The problem comes in when you're not physically capable of engineering your own suicide. Sure, as long as I can climb on the mountain, I'm good in whatever state I live in. But if one were paralyzed and not capable of even shuffling down to the pawn shop to buy a gun?

Edited January 14, 2020 by regentrude

[ashfern]

9 minutes ago, Homeschool Mom in AZ said:

Make peace with all possible future scenarios. When I need to move, I need to move.  If my kids care for me, great.  If I have in home care, great. If I share my house with other elders, great.  If I'm cared for in a facility, great.  They are all valid options and I'm not entitled to any particular one when I can no longer care for myself.
 

I agree with this. I don't want to be a burden to my kids. My ILs were just here visiting. They are the same age as my parents who were visiting a couple of weeks ago. The difference in how they are aging is incredible! My parents have always been healthy eaters and fairly active. They see their doctors for yearly physicals and my step-father has a bit more care because of his colon cancer (19 years ago & clear). I know that my mom has all their funeral arrangements prepped and prepaid. My ILs don't eat as healthy and aren't as active. They are on tons of medications and always going to one doctor or another. MIL did something to her knee last summer and they now have a handicap tag & she's severely reduced her activity. They have aged 20 years in the past year! They decided to move several states away and there is no way that they can ever live with us. SIL was always closer to them than my DH is and I always said she would have to deal with them. SIL has a child with a chronic terminal illness and herself just had surgery for renal cancer. I sure hope that my ILs have their end of life stuff planned out.

[DesertBlossom]

1 hour ago, Seasider too said:

Oh and a math sentence for you:

quality of life > quantity of life

I'm not a proponent of physician assisted suicide but I have read Being Mortal and will be satisfied to say enough is enough when it comes to medical treatment.

(debate as you wish)

I agree. 

I am not going to make any decisions for anyone else, obviously. But I look at these elderly folks who take a handful of pharmaceuticals every day for age-related issues and wonder if it isn't just prolonging the inevitable. Six months ago we moved my dad in with a sibling. He wants to live at home but can't. He talks about wanting to pass on and be with my mom. He was recently diagnosed with Lewy Body dementia and he spends all day and all night fretting over things that don't need to be fretted over. He's paranoid and OCD about some things. It's hard. 

I know we have a moral obligation to take care of our elders and I value every day we have with them to learn from them and to serve them.  But I also think quality > quantity when it comes to time with them. 

For me, when I get to an age where my body starts to fail, I am going to refuse any pharmaceuticals meant to keep my body functioning so I can stick around longer. My kids will probably think I am crazy so I should probably get it in writing now. 😉

Edited January 14, 2020 by DesertBlossom

[PrincessMommy]

44 minutes ago, Homeschool Mom in AZ said:

My experience with elder/terminal illness care has been with increasingly bad dementia for almost 10 years, leukemia for 6 months, and had relatives from ages 47 with preteens in the home to relatives 75 years with adult children die of cancer, one after 11 years of fighting it.

One issue I've been chewing on is what health maintenance means in the context of quality over quantity.  Here's the kicker, if you have all the preventive testing and early intervention for some illnesses, you're actually setting yourself up to waste away slowly.  If you choose not to do the preventive care, you are more likely to have a catastrophic incident that kills you suddenly. 

Example: Dad had a "widow maker" blockage in his artery. In his early 70s a scan picked it up before he had any symptoms.  He had it treated.  The doctor said if it hadn't been, odds are extremely high that one day he would've been doing whatever (gardening or riding his bicycle probably, he loves those) and BAM!! He'd have a heart attack and be dead before he hit the ground. 

When most people talk about how they want to die, it usually involves a quick catastrophic death.  I'd prefer that too.  So would I want to have a doctor remove something that will likely do that for me?

Example: MIL's sister age 64 and mother's first cousin early 70s.  Both refused to have any preventive screening/care and neither was health conscious.  Both had some form of cancer that went undetected before symptoms showed up.  Both ignored symptoms until they couldn't-about 1 month before each of their deaths. Both went immediately into hospice situations at that point, when they would've been eligible for hospice sooner if they had been diagnosed.

Most people want to not have things go on and on.  I'm seeing the wisdom in not intervening, but having hospice on hand, I'd just want a diagnosis first, so that means diagnosis either at the point of early screening, or at the onset of symptoms.  (I get people who still have children at home buying every minute they can get-that's a different scenario.)

So I agree that quality of life >quantity of life, but I think there are situations where we could be mistaken about how to get there.

I do agree that people should be watching their diets, getting at least low impact exercise, and intentionally participating in activities that nourish mind, body, and soul, and I think we have to be much more explicit about the short, mid, long term consequences of medical intervention, including for treatable conditions.   I wasn't around for my dad's doctor visits, I just stayed with him a couple of days after recovery from surgery, but I doubt the doctor said, "Yes, we can treat this heart blockage and it's a valid choice. Understand that if we successfully treat a condition that will likely kill you quickly sooner, you're more at risk to die of a long term illness like cancer later. Choosing not to intervene is an equally valid choice.  Which is more in line with what you want the end of your life to look like?" 

How do you (we all) plan to deal with adult children who are not on board with your decision to fore-go preventative or invasive measures?  I've noticed I have  two kids who are very vocal and very much want to micro-manage my choices (already!!).   I'm just going through the process of getting my first colonoscopy at 55.   Two of my kids have been guilting me off and on about this since I had a stint in the hospital for diverticulitis.  4 yrs ago.   I know this is a foretaste of my future with these children - one of the in particular.  I know they care, but they look at it differently than I do (part of it is that all my children have told me they don't want to be left caring for their dad.... well, gee thanks...)

While I don't necessarily want to drop dead unexpectedly, I also don't want the years-long slow dying of a many cancer patients or the years-long care needed for catastrophic stroke. 

[HS Mom in NC]

7 minutes ago, ashfern said:

I agree with this. I don't want to be a burden to my kids. My ILs were just here visiting. They are the same age as my parents who were visiting a couple of weeks ago. The difference in how they are aging is incredible!

Me too.  It wasn't really obvious until their late 60s, since my ILs don't do much off of pavement or out of a chair anyway, but the 70s hit and the difference is dramatic in both their physical and psychological well beings.

[regentrude]

9 minutes ago, PrincessMommy said:

How do you (we all) plan to deal with adult children who are not on board with your decision to fore-go preventative or invasive measures? 

I would imagine having frequent conversations in which I make my wishes absolutely clear until they get used to the idea. Also, advance directive in writing, and medical POA to a person I know will respect my wishes.

While I have no indication that my kids would be pushy, I have started making my end of life wishes known to them several years ago, so that they won't have to guess. It needs to be an ongoing, regularly revisited, conversation. 

Edited January 14, 2020 by regentrude

[HS Mom in NC]

2 minutes ago, PrincessMommy said:

How do you (we all) plan to deal with adult children who are not on board with your decision to fore-go preventative or invasive measures? 

By choosing carefully which kid gets to legally handle it. Also, by talking about autonomy, individuality, and rights all along as they're growing up. Mine were raised by Libertarians who are very respectful of individual rights.  When one relative chooses differently than we would we talk about it to them like, "It's not what I would want for myself, but each person has a legal and moral right to choose for themselves and we're going to respect that because we want our choices respected." and "Well I explained to Grampa,'We want to do for you what you want, even if it's different than what we want for ourselves, but you have to write down what it is so we know, otherwise we'll have to make our best guess at what you want and hope we guessed correctly."

[lauraw4321]

2 hours ago, Homeschool Mom in AZ said:

This thread is a spin off ofAging chronically ill parent, palliative care, stuff I can’t sort out, siblings unevenly involved
For those of you have been through elder care, what have you learned from it that you apply to your own life?

Maintaining certain physical abilities as long as possible is very important. Flexibility, walking, getting up off of the floor. As is getting hearing aids as soon as they are required.

How did your perspective on aging change?

I had never thought about how hard it is for all of your friends to die. That's something that still haunts me. I probably think about it at least once a day.
What assumptions about aging were you getting wrong?

That grown kids would prioritize their parents.
What surprised you?  What did your elder care experience reinforce?What changes did you make in your own life to avoid problems your elders faced? What do you think society and individuals need to know and do to improve elder care?

I could write a book. Seriously. 1) Elders shouldn't be isolated, if at all possible. 2) Elders and children should interact as much as possible. 3) Maintaining elders' social connections is extremely important. 4) Having enough money is really important. 5) Many adults seem to not know that you can tell medical professionals "NO." 6) Many adults seem to not know that hospitals are very dangerous places for elders. 7) Many adults seem to not know that it's their job to advocate for elders, and what that means. 8. Many adults seem to think that doctors are going to solve problems that are far beyond their capacity / training / ability / interest to solve. 9) Independent living, assisted living and skilled nursing are extremely expensive. 10) Many adults seem to not realize that people are mortal and will in fact die one day, and that death should not be avoided at all costs - it is the inevitable end to life and instead should be planned for and welcomed when the time is right. 11) Minimizing stuff should be a priority for all aging Americans.

Improving elder care starts with people beginning to understanding these basics above.
What are society and individuals getting right?
Well... we still have Medicare, so I guess that's something, right?
 

 

[fairfarmhand]

More thoughts: certain types of care are not always necessarily “better” than others. All nursing homes are not worse than adult children caring for their parents. 

i have a friend who has extracted a promise from her kid’s to “never put me in a nursing home” I refuse to do that. I’ve told my kids to make the best decision for me and for them and their families. 

i hope I can remember that adult children need to factor in what’s best for THEIR families along with what’s best for me. I do not want them sacrificing their marriages and kids for my care. 

Edited January 14, 2020 by fairfarmhand

[PrincessMommy]

21 minutes ago, regentrude said:

I would imagine having frequent conversations in which I make my wishes absolutely clear until they get used to the idea. Also, advance directive in writing, and medical POA to a person I know will respect my wishes.

While I have no indication that my kids would be pushy, I have started making my end of life wishes known to them several years ago, so that they won't have to guess. It needs to be an ongoing, regularly revisited, conversation. 

oh, both my dh and I have done much of that.  Esp. as it pertains to end-of-life.  I talked about it a lot when I was a hospice volunteer.   It's just now I'm starting to see some push back...esp about personal choices I have made now.

[BeachGal]

HThe things my husband and I are doing already:

Preventive care using nutrition, exercise — aerobics/anaerobics/weights, fasting, sleep, all-body red and near-infrared light, regular saunas, creating and maintaining supportive social networks, having a purpose and taking certain supplements such as Niagen and a specific type of resveratrol as suggested by David Sinclair.

In the event dh or I need care, we already have our affairs in order and have made detailed plans. Our financial portfolios are healthy, our kids — all adults — understand what we want and how to go about it. I’m not too worried about that.

ETA I’m currently at a longevity conference where research and statistics on issues related to aging are being discussed. There are many interesting developments in treating health problems related to aging poorly that are already showing promise in humans. Fascinating stuff.

Edited January 14, 2020 by BeachGal

[mlktwins]

Well...this hit me hard a year and a half ago when I unexpectedly became pretty much the sole caretaker of my dad (he is 84).  My in-laws are 93 and refuse to leave their home.  I've got a fever and feel like $%&@ at the moment, but I will come back when I have more energy.  The whole experience with my dad has been so eye opening and I can relate to what many have already posted.  I also feel horrible for Quill because I'm still in the thick of things with my parent.  Life changing...

[Pawz4me]

What I've learned from elder care (my parents and grandparents, DH's father, and I guess DH, too, since he's been dealing with metastatic cancer two and a half years) is that all the planning in the world is theoretical, and often gets thrown out when you're in the trenches. And that's for the patient and the caretakers. Things that sound right or simple or clear cut in theory aren't always like that when it's really happening. And things that sound right at 40, 45 or 50 might sound all wrong when you're older. I guess my perspective has changed over the years from thinking I can control most factors to hoping I'll adequately control what I can and do the best I can to prepare (diet, exercise, financial, etc.), but also trying not to worry about the various scenarios of how all the careful planning can still not be enough, or not the right kind of plans. Life has a funny way of going in directions you never imagine.

[Carol in Cal.]

1 hour ago, PrincessMommy said:

oh, both my dh and I have done much of that.  Esp. as it pertains to end-of-life.  I talked about it a lot when I was a hospice volunteer.   It's just now I'm starting to see some push back...esp about personal choices I have made now.

I think it’s really important to recognize when your choice is going to be something that your kids cannot support, and make other arrangements if it produces a big ethical dilemma for them.  For instance, I would go to bat (and have done) for my parents to receive great medical and palliative care, including whatever pain meds they need for comfort, no matter what.  But, I will not assist them in suicide, for ethical reasons of my own.  If they wanted help with that they would have to arrange it with someone else.  I’ve been clear on that with them.  (To be clear—I’m not interpreting, as some do, large amounts of possibly life shortening pain meds as suicide.  I’m talking about clear, definitive, active, 1 final act type suicide.). 

It would bother me if I was getting a lot of pushback as you are, about my medical decisions.  I think in that circumstance I would express my expectation that my decisions on my own behalf be respected, and that if continued argumentation went on I would cut it short somehow.  (Ie ‘asked and answered’, or ‘we already discussed this, and I already told you what I decided.’). I would also think about putting a more detailed than usual medical POA in place so that dissension between my kids would be minimized by my clarity.

[PrincessMommy]

6 hours ago, BeachGal said:

HThe things my husband and I are doing already:

Preventive care using nutrition, exercise — aerobics/anaerobics/weights, fasting, sleep, all-body red and near-infrared light, regular saunas, creating and maintaining supportive social networks, having a purpose and taking certain supplements such as Niagen and a specific type of resveratrol as suggested by David Sinclair.

In the event dh or I need care, we already have our affairs in order and have made detailed plans. Our financial portfolios are healthy, our kids — all adults — understand what we want and how to go about it. I’m not too worried about that.

ETA I’m currently at a longevity conference where research and statistics on issues related to aging are being discussed. There are many interesting developments in treating health problems related to aging poorly that are already showing promise in humans. Fascinating stuff.

I happened upon some videos with Dr. (Prof??) David Sinclair.  Very exciting stuff.   

[TravelingChris]

19 hours ago, PrincessMommy said:

Yes, I agree.  We have to be brave enough to stay it is time to stop treatments, etc and allow the natural process to take its course.

I'm not a big fan of living a 100+ yr old life either.  I don't want to live that long.

Do you know people who are that old?  I do and there minds are sharp as ever.   Still able to enjoy life, still able to contribute.  I have many friends much older than me and they are going strong.

As to medications, lots of medications by themselves or large doses of medications  DO NOT, by themselves, mean anything.  I am Ms. Autoimmune and take 22 medicines regularly.  A few years ago, I was taking less but by adding a few medications to the pile, my life has a much higher quality-==less pain, more sleep, less autoimmune crap going on, being able to digest food and nutrients well, etc.  And I am in my mid 50's, not elderly.  Butt I know people in their 20;s and 30's with a long list of medications too.  It is what you get when you have complicated medical conditions. 

Now that does not mean that I think we need to be putting dementia patients through agonies of chemotherapy or surgery for their cancer.

[regentrude]

12 minutes ago, TravelingChris said:

Do you know people who are that old?  I do and there minds are sharp as ever.   Still able to enjoy life, still able to contribute. 

I do know people close to that age, and for some of them, it is a very lonely and sad life because they have outlived their children and their friends. If I learned one lesson from my grandmother's old age, it's to make sure to have some friends who are younger than me. For some people, of course, it's great and they are having full lives into old age. But the longer you live, the more moved ones you will likely lose.

Edited January 15, 2020 by regentrude

[PrincessMommy]

6 minutes ago, TravelingChris said:

Do you know people who are that old?  I do and there minds are sharp as ever.   Still able to enjoy life, still able to contribute.  I have many friends much older than me and they are going strong.

As to medications, lots of medications by themselves or large doses of medications  DO NOT, by themselves, mean anything.  I am Ms. Autoimmune and take 22 medicines regularly.  A few years ago, I was taking less but by adding a few medications to the pile, my life has a much higher quality-==less pain, more sleep, less autoimmune crap going on, being able to digest food and nutrients well, etc.  And I am in my mid 50's, not elderly.  Butt I know people in their 20;s and 30's with a long list of medications too.  It is what you get when you have complicated medical conditions. 

Now that does not mean that I think we need to be putting dementia patients through agonies of chemotherapy or surgery for their cancer.

My FIL lived to be 103.  He's the only one I've "known".  I did have 2 hospice patients who were over 100.  One was still using things like FB and such to keep up with family.  She was also sharp.   My FIL was mostly sharp up until about 95.  His wife began keeping him "safe", which meant no more laps at the pool (he was swimming laps 2-3x per week). no more trips, no more everything except sitting in a chair and staying safe.   His wife did get round the clock care for him which was lovely and did help his quality of life... but what life did he have?  He watched old football games.  Those decisions all seemed based on fear.  She is a sweet lady but very fearful and anxious.   BTW, his wife is still alive and very sharp into her late 90s.  She doesn't even need a walker.  She doesn't get out of her retirement home much because of some health issues (bathroom related), but she is still very engaged with those around her.   In many ways she is the picture of how to age well.  

However, My main issue with living into my 100s isn't what happened to my FIL because that can happen at any age.  I don't really want that to happen no matter how old I am.  My mom became house bound in her early 70s and died at 73.  It's more that I don't want to watch all my friends or children die.   There are other things I don't necessarily want to experience again and again.   Sure, I'm curious about how the future will be but I don't know if I need go through more and more rough spots just to see it.  Especially once I'm 80+yrs old.  I have  Christian faith in a far better place and I'd rather go there than eek out another 15-20yrs here.  

[BeachGal]

10 hours ago, PrincessMommy said:

I happened upon some videos with Dr. (Prof??) David Sinclair.  Very exciting stuff.   

 

I’m at a longevity conference right now listening to researchers and biostatisticians who are like Sinclair.

There is so much research going on that is showing tremendous promise in human studies. Some treatments are cheap or free and incredibly beneficial. Photobiomodulation, for example, is going to be huge. Unfortunately, it takes decades for changes to occur in the US health system but it’s not impossible to find someone who’s treating patients using these “weird” treatments. So much better than continuing to prescribe treatments that rarely work, have significant side effects or cause prolonged suffering.

[PrincessMommy]

I came across this 60 Minutes Australia show on aging and thought of this thread.  It is more about aging than dementia.

I found several of the finding very interesting.  The most interesting is that they are finding that the development of high blood pressure in old age protects people from dementia.  

 

[Sallie Mae]

My mother's health had always been precarious and as things progressed to the point that she couldn't live on her own, she wanted to move near my sister who is a nurse. My DS was willing, but only if: (1) DM would move into assisted living, not try to live independently. There were many viable options in that area, so that was not an unreasonable request. My DM would have preferred to 'live Independently" though she really couldn't and then have my sister come over everyday. Since my DS had 4 children under 15 yrs old and she worked part time, that would have never worked. (2) If DM made and paid for all her funeral arrangements before she moved. If she hadn't required this, most likely, we would have been left paying for DM funeral, etc. DM had money available to pay for arrangements, she just didn't want to think about it. She actually said after she moved that it was a relief to have that all settled. (3) DM would immediately get established with primary care and rheumatologist. DM had been with the same doctors for many years and was receiving poor and outdated care. She didn't like getting use to new doctor's but she was much healthier and had less pain with the change in care.

My sister was very wise to not budge on all these issues, and finally, after repeatedly trying to get my DS to give in on things, my mother got her affairs in order and moved. The last 3 years of her life were better than the 10 years before she moved. It was very redemptive to see her in better health, happy and enjoying life.