Some take it or leave it reflections on eldercare, 18 months in

[Anonymous]

Anonymous wrote:IMO, people should read your advice and then leave it. It's your experience and yours alone.

Everyone's experience is going to be different. There are as many different scenarios as there are people on the planet.

What I do find concerning is the underlying thread of intolerance and annoyance at caring for one's "loved" ones. I have done care for both parents and a sibling and would never think nor express the kind of vitriol I often see posted on elder care issues. But that's my experience and it's different than OPs.

Phrases like living "past their time" is an example. I am not a religious person but who are any of us to say when another person's "time" is? That they shouldn't be given standard medications for common health issues (statins, BP medications)? Aren't there people in their 30s who are on BP meds? So I guess you should not start on them, or is there a specific age the prescription should be stopped? Of course not, because it's not rational.

If there is some cosmic timeline or physical condition that determines someone needs to get put on the ice floe?

What about younger people who are paralyzed from an accident? Or have a debilitating disease? Not everyone in full-time care facilities are elderly. Should those people in their 30s or 40s fall under the same criteria? The burdens of caring for them are the same as the elderly.

FWIW, I've also known 2 people who have chosen euthanasia (living in a foreign country) and that has its trauma and effects on the family and loved ones, too.

Essentially, we as a county/culture need to revisit elder care and expand the options. Things like adult day care. But unless and until people start seeing the elderly as equal human beings, it won't happen.

The general attitude (at least here on DCUM) is to eliminate any resources, time or energy spent on people who supposedly no longer have any value.

I don’t know if this is really about people’s value versus their quality of life. We have a 16 year old daughter that requires total care. We will change diapers, feed her, bathe her, etc., until we find facility to place her in (if they even exist in 5-10 years with the cuts to Medicaid that will be coming). She could live for decades after we die with no ability to communicate or advocate for herself. There are people with her genetic disorder that live into their 70s. Over the decades we cannot protect her, I assume she will suffer some level of abuse with 99% certainty.

When I talk to parents in our situation, we don’t want our kids to outlive us. We would take 20-30 “good” years and then wish for a peaceful death.

In some cases, part of the challenge with dealing with intense caregiving is also seeing how much you have to put in for such little return as far as quality of life goes. I don’t know that we have done our daughter any great favors by bringing her into this world given her limited quality of life.

The truth is that caregiving is complicated even when you love someone very much. And we now live in world where parenting has intensified in a way that leaves little space for elder care. And many people are trying to do both childcare and elder care at the same time. I have a lot of empathy for people in this situation as someone who has done intense caregiving for 16 years with no end in sight.

[Anonymous]

Anonymous wrote:OP I appreciate your frankness. You were very clear that everyone's experiences and situations will be different, so I don't know why some people feel offended. (Except for the first reply - that person is the first reply on EVERY NEW THREAD and it is always negative and trashing the OP.)

.

Huh, I had the opposite reaction. If OP had framed things as “here is what I went thru” instead of “here is what you will go thru” I think I would have reacted more positively.

I have 3 close relatives in their 80s and recognized only some of what OP experienced but I’m not going to tell her that makes her wrong.

[Anonymous]

I found OPs advice very relatable. Also, one of my kids has special needs. Interesting to note, my mother who I finally had to outsource care for, was never accepting of DC's special needs and played favorites with my NT child and her NT niece which why we had to kids distance before I did. The other reason the grandkids stopped seeing her is they witnessed her abusive behavior toward me which was damaging and a mistake on my parent.

I think people who don't have experience with challenging caregiving situations can be quite judgmental and rigid if they don't have a well-developed sense of empathy. They can reflexively side with the person who needs care without thinking about what is going on with the caregiver. My mother really didn't take on much caregiving with her own parents-visited here and there and wasn't that into raising kids either. Yet, she was the first to judge others and gossip when they made caregiving decisions she didn't agree with-even with her own siblings who took on more.

OP thank you for your candor. Also, to the person who posted with a child with SN, I get it and thank you. My older child has far fewer issues, and yet I sometimes hope DC does not outlive us because we have created such a safe cocoon and nobody else will. We don't want to burden our other DC. It's all so challenging and people are so quick to expect caregivers to be superhuman and quick to judge.

[Anonymous]

A lot of this rang true for me. I moved mom
Close to me and was her primary “person” for 4 years as she declined from dementia.she was in assisted living and later memory care so I was not doing the hands on too often (although more than I had imagined plus all the medical, social, lol, logistical, financial etc)….but I was still spending a ton of time and energy caring for her. She was not the person she used to be and it was exhausting. I could not make up for all she lost and by the later stages, I could do very little for her but just be there. I also had to set boundaries around how much time I spent attending to her…. At the end I was there several times a day while trying to keep my job, life, parenting teens but for the long middle “, twice a week was what I could manage.

All that being said. I was devastated at her passing and do not regret taking on the burden. It was hard and kind of sucked but also the right thing for me. And because I had some boundaries it did not kill me (though at times it came close). I think each person has to figure it out, try to maintain your own life and sanity while not closing off your heart.!

[Anonymous]

Anonymous wrote:Hope you feel better trashing your elderly parent. I feel sorry for your dad.

NP who lives with same age elderly mom. OP is accurate, and also clearly loves their parent. Be real.

[Anonymous]

OP how old are you? Do you really want to suggest people in their 60s can’t manage?

[Anonymous]

Anonymous wrote:My parents moved to a nearby CCRC 18 months ago, and, I am the nearby family member. Spouses parents passed over a decade ago. My parents were, and are, terrific parents who raised me, and however many years I can help them, is a privilege. And, maybe I will feel differently in a few years, but I hope not.

They are not the same as when they raised me (anxiety and memory loss are real and sucks), but I am not the same toddler, school girl, teen, young adult, etc. either

I wonder if the difference is that I had a terrific childhood, we have always had a good relationship, they have the funds to pay for the CCRC, that they aren't nasty, or that it hasn't been very long yet? Whatever the reason, I consider myself lucky after reading all the horrid situations here, and hope the relationship we have with our now young adult children remains as strong as the one I have with my parents.

Be aware that you are in for a loooong journey and big surprise. Overseeing elders in CCRC community will eventually be a full time - time consuming job as time goes on and they move along to different levels of care. Who they are personality wise now will not be who they are near death (especially if they live a long time….90s). And if they develop “behaviors” (which they can the older they get) then look out! Also, CCRCs can change rapidly over time as they get bought out, partner with other companies, chance executive directors frequently and get bought up by private equity corps. Their focus is making $$$. Good luck to you!

[Anonymous]

Shame on those who are judging. Caring for an elder is hard work, emotionally draining, and not appreciated.
Try it for a week then get back to those of us who do it.
It’s perfectly normal to view some as “living past their time” - when their quality of life is so low due to pain, confusion, etc.

[Anonymous]

I think OP made a very thoughtful post. I don't have any eldercare responsibilities coming yet, but it's coming within the next few years, so I've been reading this forum. Unfortunately, the parent who will need help is simultaneously the most chaotic and most controlling person I know. Send help, and in the meantime, I am here for the unsolicited advice!

[Anonymous]

Anonymous wrote:Shame on those who are judging. Caring for an elder is hard work, emotionally draining, and not appreciated.
Try it for a week then get back to those of us who do it.
It’s perfectly normal to view some as “living past their time” - when their quality of life is so low due to pain, confusion, etc.

I agree there are circumstances where "living past their time" is 100% applicable and not cruel in the least. My dad has dementia and is in memory care and will very likely leave my mom on medicaid with little left over for her own medical care if/when she needs it. I can say without a single doubt he would not have wanted to live like this.

I think it's good when we are honest in this forum because there are very few places we can talk about the true ugly side of senior care.

[Anonymous]

Anonymous wrote:OP how old are you? Do you really want to suggest people in their 60s can’t manage?

DP. I think we need to be open to the idea that many (not all) people in their 60s don't actually manage that well. Our perception of people in their 60s is heavily influenced by the fact it's "normal" to work into your 60s in the U.S. and public benefits dont start until mid to late 60s. But that doesn't have anything to do with physical and mental ability.

Yes, some people are hiking the AT at 65. But many more are reaching that age with hearing loss, balance issues, rigid thinking, scary driving, etc. Pretending everyone's grand until 70 helps no one.

[Anonymous]

Anonymous wrote:OP how old are you? Do you really want to suggest people in their 60s can’t manage?

I am almost 50.
As I said my father was always a man child in some aspects - he didn’t expect to be catered to but he was always pretty helpless with practical things, even if he didn’t something he rarely did it well.
So yes in his 60s he ideally needed some guidance already.
Of course not everyone is like that, but if you notice how many people are resistant to getting their hearing aids…

[Anonymous]

Anonymous wrote:

Anonymous wrote:IMO, people should read your advice and then leave it. It's your experience and yours alone.

Everyone's experience is going to be different. There are as many different scenarios as there are people on the planet.

What I do find concerning is the underlying thread of intolerance and annoyance at caring for one's "loved" ones. I have done care for both parents and a sibling and would never think nor express the kind of vitriol I often see posted on elder care issues. But that's my experience and it's different than OPs.

Phrases like living "past their time" is an example. I am not a religious person but who are any of us to say when another person's "time" is? That they shouldn't be given standard medications for common health issues (statins, BP medications)? Aren't there people in their 30s who are on BP meds? So I guess you should not start on them, or is there a specific age the prescription should be stopped? Of course not, because it's not rational.

If there is some cosmic timeline or physical condition that determines someone needs to get put on the ice floe?

What about younger people who are paralyzed from an accident? Or have a debilitating disease? Not everyone in full-time care facilities are elderly. Should those people in their 30s or 40s fall under the same criteria? The burdens of caring for them are the same as the elderly.

FWIW, I've also known 2 people who have chosen euthanasia (living in a foreign country) and that has its trauma and effects on the family and loved ones, too.

Essentially, we as a county/culture need to revisit elder care and expand the options. Things like adult day care. But unless and until people start seeing the elderly as equal human beings, it won't happen.

The general attitude (at least here on DCUM) is to eliminate any resources, time or energy spent on people who supposedly no longer have any value.

I don’t know if this is really about people’s value versus their quality of life. We have a 16 year old daughter that requires total care. We will change diapers, feed her, bathe her, etc., until we find facility to place her in (if they even exist in 5-10 years with the cuts to Medicaid that will be coming). She could live for decades after we die with no ability to communicate or advocate for herself. There are people with her genetic disorder that live into their 70s. Over the decades we cannot protect her, I assume she will suffer some level of abuse with 99% certainty.

When I talk to parents in our situation, we don’t want our kids to outlive us. We would take 20-30 “good” years and then wish for a peaceful death.

In some cases, part of the challenge with dealing with intense caregiving is also seeing how much you have to put in for such little return as far as quality of life goes. I don’t know that we have done our daughter any great favors by bringing her into this world given her limited quality of life.

The truth is that caregiving is complicated even when you love someone very much. And we now live in world where parenting has intensified in a way that leaves little space for elder care. And many people are trying to do both childcare and elder care at the same time. I have a lot of empathy for people in this situation as someone who has done intense caregiving for 16 years with no end in sight.

Thank you for your thoughtful and beautiful post. And for your honesty. 🌹

[Anonymous]

Anonymous wrote:I think OP made a very thoughtful post. I don't have any eldercare responsibilities coming yet, but it's coming within the next few years, so I've been reading this forum. Unfortunately, the parent who will need help is simultaneously the most chaotic and most controlling person I know. Send help, and in the meantime, I am here for the unsolicited advice!

OP here. My unsolicited advice is that the moment you realize that your parent is difficult (an alcoholic, mentally ill, or just stubborn/controlling), you should ideally disengage. My late mother was a difficult person, mentally ill as I realized way too late, and I regret trying and trying. Everything I did for her turned out to be useless at best. Wasted so much money and emotion!

[Anonymous]

Anonymous wrote:

Anonymous wrote:Shame on those who are judging. Caring for an elder is hard work, emotionally draining, and not appreciated.
Try it for a week then get back to those of us who do it.
It’s perfectly normal to view some as “living past their time” - when their quality of life is so low due to pain, confusion, etc.

I agree there are circumstances where "living past their time" is 100% applicable and not cruel in the least. My dad has dementia and is in memory care and will very likely leave my mom on medicaid with little left over for her own medical care if/when she needs it. I can say without a single doubt he would not have wanted to live like this.

I think it's good when we are honest in this forum because there are very few places we can talk about the true ugly side of senior care.

OP here. I’ll go even further and say that “past one’s time” is when nobody cares if one lives or not, and definitely when the best thing one can do to those around them is die.