Peninsula Daily News Column 8-29-2013 "Caregiving often improvised, imperfect"

          Here’s something I said in a column a few weeks ago:

          “The people who know the MOST about ‘long-term care’ are caregivers – People who took care of people who needed to be taken care of, whether they liked it or not. Most of us have been, are or will be ‘caregivers’, or we’ve at least been close enough to it to see it…” The point being that we could learn a lot about this “long-term care thing” (most of which is provided at home) by just learning from that experience.

          While I still believe that to be absolutely true, I must also accept responsibility for the fact that I probably caused a lot of past and present caregivers to have a gastric event: “WHAT?! I didn’t have the remotest idea what I was doing, and I still don’t! I’m making it up as I go along! And it sure would’ve been nice if someone had come along and sent me to Caregiver Boot Camp, cuz I’ve screwed-up so much stuff, it’s scary! Did you hear me, Harvey? – I’m making it up as I go along!!!!!”

          Here’ something that one of you said back:

          “Dear Mark Harvey:

          I read your column regularly and for the first time feel that I have something to say.  I agree totally with long-term care being an imperfect art.  You can compare it to being a parent.  My mother-in-law, a very wise lady, once said it was a good thing god didn’t let us know what it was like to be a parent until it was too late. 

My daughter called me when her first child was about 2 years old and said she had figured out something that day. She had always thought I had all the answers and was always there with the solution to every problem and it was that day with her own child that she realized that I had been making it all up as I went along.  I told her of course…this is what every parent does.  No books or lectures or college courses can truly prepare us for parenting.  Same with taking care of our aged parents.  No two cases are the same and no two days are the same.  There are no rules (other than the law and morals) or timetables for us to follow.  Things happen as they happen.  You simply make it up as you go along. 

I care for my 87 year old mother who has an inoperable disintegrated hip.  She is in a lot of pain but still manages to live in an apartment in an assisted living facility.  It still gives her some semblance of independence and me a little freedom.  I am her legs and entertainment.  Still I sometimes feel like my life has been taken over but then I realize it is as it should be and it could be worse.  I can take a vacation when I need to and her mind is still very sharp.  But when I get frustrated with something I have to do or something she has done I immediately call my daughter and apologize for what she has coming.  We have a good laugh and it relieves the situation. 

Thank you for your wise words and all you do to help everyone.  I know you have done this for many years and have much education for your job but I am sure that there are times you ‘just make it up as you go along’.”

Oh, Dear Reader, you have NO idea! – And that’s probably just as well – But I thank you for jumping in.

There are, I suppose, some of us who will resent the comparison of raising kids to caring for Elders, seeing it as disrespectful, but I don’t think that was the writer’s point. I think her point was (and is) that in both of those rather tricky undertakings, we become whatever (and whoever) we need to be at that given moment in order to “handle” what needs to be handled, and then we worry – We worry that we didn’t get it right/do it right/say it right, and that we should have done better.

Maybe – Depending upon what “right” is…

So we think we should learn more, read more, listen more, ask more questions – And we should! – We can always get better and do better, and those of us who are doing this “long-term care” thing ought to be trying to do better ALL THE TIME!

But when that next thing comes up – In the next moment! – And we don’t have time to read something or call somebody or go to some web site, what do we do? Right: The best we can.

Here’s what I can tell you about doing the best we can: If it’s done with caring, respect and a modicum of common sense and intelligence, it will usually be just fine. I’m not talking about cruelty or abuse or raging irresponsibility – I’m talking about where most of us are, most of the time: Trying very hard to do the right thing while we beat ourselves up for not doing the “right” thing.

Try hard. Think. Do better. Learn.

Care.

And remember that imperfection is allowed.



Peninsula Daily News Column 8-22-2013 "Aging is not the problem; society’s opinion of it is"

          A few weeks back, I succumbed to my periodic need to clamor up on a soapbox and clamor; in this particular instance, I clamored about the fact that “we” are not a “problem;” more specifically, that “aging” isn’t a “problem” that needs to be “solved.”

          I managed to overstate the obvious by pointing out that aging is a natural part of this thing we call “life,” so why are we made to feel guilty or “less than,” simply because we haven’t died according to an outdated, actuarial schedule? – Then, feeling sated for the moment, I moved on.

          But some of you have actually considered my clamoring, so allow me to share parts of a letter I received, severely edited to avoid any possibility of identifying the writer, who isn’t a “problem:”

          “I just finished reading your article…I am so-o-o glad I am not a ‘problem’, no matter how many people seem to find older people just that…

          I am a 77-year-old widow (mother of one…who certainly does consider me a ‘problem’. I have worked since the age of 12 in business fields and hospitals…have no diseases, take no medications…

          I have never felt I was a ‘problem’ or ‘abnormal’, although periodically have been condemned for receiving civil service retirement…, on social security and receiving 2 survivor benefits from my late husband of 50 years and taking jobs away from unemployed locals, etc, etc, not to mention comments---‘At YOUR AGE you should get some hobbies and stay at home or travel, although volunteering is acceptable AT YOUR AGE…’

          Your article says it all, Mr. Harvey…especially if you aren’t dead, ‘aging’ is a universal experience, so why do we need to ‘solve’ a universal experience? WHAT AN ENLIGHTENED POINT OF VIEW – although marketing it to the public is a different matter entirely – good luck with that…

          The common view of the public seems to be OLD PEOPLE ARE PROBLEMS, CURSES AND SOCIETAL LIABILITIES – and we are stuffed into OLD PEOPLE categories, no matter if we are still productive and viable or not.

          I endorse the idea that old age is a ‘blessing’, an opportunity and an inherent phase of this funny thing called ’life’, and for one, plan to and do ‘run with it and learn from it’, and avoid and definitely not listen to those putting down older people.

          You’re the greatest, Mr. Harvey – keep up the good work and keep your lovely articles coming – I enjoy them immensely…”

          You’ll notice I didn’t edit out the “You’re the greatest, Mr. Harvey” part.

          I thank this good lady for taking the time to write and give us all a little something to think about – I’ve read her letter several times and am still thinking about it. Here’s one thing I think:

          “Aging” really is NOT the problem. The “problem” is that we’ve allowed our society and our culture to evolve into such a stupor that we can’t recognize an asset when we see one! In my humble, soapbox-inclined opinion, we (the collective “we”) need to back WAY up, until we can see this “aging thing” in some perspective, and realize that we’re not talking about “them” – We’re talking about “us.”

          Elders are an unmined resource on an increasingly over-mined planet, and we might want to figure that out pretty soon – Since when did society and humanity not need all the help it could get? Most folks want to contribute and can, if allowed to – If allowed to step out of a box that they never chose to step into and remain cogs in the wheel that they’ve been cogs in, all of their lives.

          That we’ve been cogs in, all of our lives.

          And those of us who choose to act like “old people,” probably deserve what we get.

         



Peninsula Daily News Column 8-15-2013 "Face 'Obamacare' with equanimity"

ObamaCare!

          Yes, I am trying to get your attention.

          Most of us see “ObamaCare” and we have a reaction. The reaction can range from, “Hallelujah! This is a good step in the right direction and will probably do me and/or mine some good,” to “This is terrible! BAD for America, BAD for me and it shouldn’t be happening!” As is almost always the case, most of us fall somewhere in-between.

          But whatever you think of it – Whatever I think of it! – It is going to happen; so, since I’m about the fine art of “What is” (as opposed to “What Isn’t” or “What Should Be” or What-Not), let’s talk about this for a minute.

          A few of us may actually be able to recall 6-7 years back, when Medicare Part D was about to roll-out (roll over us?), and there were similar, widely divergent reactions to it; actually, there still are and so be it – But the fact remains the fact: It is happening, so attempting to ignore it is rather like standing in the railroad tracks and saying, “I don’t like freight trains so, therefore, there’s no freight train coming at me.”

          Right: Doesn’t work; at least, not very well for very long.

          So, back to it, “ObamaCare:” What most of us mean when we say that word now is the implementation of the health insurance mandate – YOU HAVE TO GET HEALTH INSURANCE, OR ELSE! Well, yeah, OK.

          Others of us think in terms of the “Health Benefits Exchange,” which “goes live” on October 1^st of this very year; well, yeah, OK.

          Others of us just get a headache and try not to think about it at all, because it’s yet another thing we’ll be required to NOT understand, but have to do anyway – Well, yeah, OK!

          Let’s try this. Let’s all stop thinking whatever it is that we’ve been thinking and try thinking about this:

          Yes, there is a health insurance mandate (YOU HAVE TO GET HEALTH INSURANCE!) that kicks-in on January 1, 2014, more-or-less, mostly, depending…Basically, it says that if you don’t have health insurance, you have to get it. Stop here:

          If you are on Medicare, you have health insurance, so this has absolutely nothing to do with you.

          NOTE: The already-confusing will be made more-confusing by the unfortunate fact that “open enrollment” for “ObamaCare” will run from October 1, 2013, through March 31, 2014, while the usual Medicare Part D/Advantage Plan “open enrollment” will run (as usual) from October 15, 2013, through December 7, 2013, so we’ll be hearing about both at the same time and thinking, “WHAT?!” So, allow me to knowingly repeat myself:

          If you are on Medicare, you have health insurance, so this has absolutely nothing to do with you.

          OK? Now, if you have TriCare or VA or fair-to-decent health insurance through your employer (or whatever), then you have health insurance, so this has absolutely nothing to do with you; in other words, if you have health insurance, you don’t need to get health insurance.

Now, it’s true, that if you have “minimal” (meaning, “pretty crappy”) health insurance, you may have to get better health insurance, but for most of us, we will not be forced to go get something that we already have.

Comforting? I thought so.

Now, the “Health Benefits Exchange” is the “thing” (entity, agency, bureaucracy, etc) that ObamaCare invents in every state to be the “marketplace” for finding said health insurance; in Washington, the Health Benefits Exchange is called the “Washington Health Benefits Exchange” – Catchy, huh?

And the Washington Health Benefits Exchange is in the process of inventing the “Washington HealthPlanFinder,” which is a web site we can go to, put in some info about ourselves and find out what the best deals for health insurance for ourselves and our families might be, and whether we might be able to get some help paying for it; THEN, if so inclined, we could enroll in said health insurance plan right then, from right there – But we won’t have to. We will be allowed to think about it.

Occasionally, thinking-about-it is good.

You cannot do this now, because it doesn’t work yet, and YES: We’ll be talking a lot more about all of this, and YES: We will be glad to help you do this (for free) when it’s time to do it, if you want or need help.

If you are on Medicare, you have health insurance, so this has absolutely nothing to do with you. YES, I do know that I already said that – Twice! – But that doesn’t mean that you heard it.

So, what about the “OR ELSE” part? The “you-HAVE-to-get-health-insurance” part? Well, yeah, OK: This is a “mandate,” so if this applies to you and you don’t do it, you could get slammed with a tax penalty OR a penalty of up to about 1% of your income, whichever is greater. What is also true is that there are a whole lot of details that we just don’t have yet (after all, it’s only early August), so try to relax. If you can’t relax, call any of the numbers at the end of this column and we’ll try to help you relax and/or tell you what we know, but remember that there is a whole lot of stuff that nobody knows – Yet.

I personally know a number of folks who will be considerably better off because of all this. I can also imagine that there might be some folks who won’t be (or won’t feel like they are), but I also have to remember that I don’t know what I don’t know.

There’s nothing any of us need to do right now, except for those of us who are eager to do all kinds of research on the subject – And if that’s you, have at it! For the rest of us? Try to relax, and remember that if it looks like a freight train and sounds like a freight train, it’s probably a freight train.



Peninsula Daily News Column 8-8-2013 "Long-term caregiving an imperfect act"

          Long-term care; providing care, long-term – It makes a little more sense if you say it that way: Providing care, long-term.

          And since this has turned into quite the conversation, let’s converse! Last week, I said:

          “The people who know the MOST about ‘long-term care’ are caregivers – People who took care of people who needed to be taken care of, whether they liked it or not. Most of us have been, are or will be ‘caregivers’, or we’ve at least been close enough to it to see it…” The point being that we could learn a lot about this “long-term care thing” (most of which is provided at home) by just learning from that experience.

          While I still believe that to be absolutely true, I must also accept responsibility for the fact that I probably caused a lot of past and present caregivers to have a gastric event: “WHAT?! I didn’t have the remotest idea what I was doing, and I still don’t! I’m making it up as I go along! And it sure would’ve been nice if someone had come along and sent me to Caregiver Boot Camp, cuz I’ve screwed-up so much stuff, it’s scary! Did you hear me, Harvey? – I’m making it up as I go along!!!!!”

          I know. You’re replaying, in your heads, the times that you almost dropped him or you messed-up the meds or you knew what the doctor said, but not what he meant, or didn’t know that you couldn’t do that without this document or JUST WANTED TO KILL HER!!!!!!!!! Or, or or…

          And every day, there’s something new that you didn’t know, but feel like you should have known. Or you were just going so fast, that you didn’t realize that if you did this, then that would happen! And you beat yourself up about your hopeless stupidity and raging incompetence, then I come along and say, “Learn from these people” – WHAT?!

          I know, because here’s something I know: Caregiving is not a perfect science; well, unless you’re a “pro” and you do this for a living in a perfect institution and are trained to the hilt and supported by nurses and everything goes perfectly everyday and no other caregivers ever get sick and don’t show up and there are never any surprises and…You know what that sounds like? Yeah, so do I…

          …and that’s not where most long-term care “happens.”

          Most long-term care happens in imperfect homes, where imperfect people are trying to provide perfect care to imperfect people who need perfect care on an imperfect planet, so my prediction is that things will go perfectly imperfectly, and it’s scary-as-Hell if you’re the caregiver; yet, this is what most of us say we want?? Care at home?? Are we stupid??

          Maybe, but more likely, we’re just human – And imperfection is all we’ve ever known.

          Our lives, from Day 1, have been all about imperfection – That’s what gives it its color, its flavor – Its memories and its laughter – And the stories that end with “…THAT was close!”

          Yeah, it was.

          If we all held hands and toured 100 different homes (apartments, mobiles, yurts, whatever) to view and evaluate the “delivery of long-term care,” what we’d see is 100 different ways of doing it. If we were smart, we’d make some notes about some of the incredibly creative things we saw – And we’d probably be appalled by some of the things we saw! – And in some of those appalling yurts, we’d see care receivers who were perfectly happy…

          …well, OK: IMperfectly happy; because caregiving – LONG-TERM CARE – Is not a perfect science.

          And my point is…?

          Simply that, should you ever need long-term care, it isn’t going to be perfect; thus, our trying to prepare for long-term care isn’t going to be perfect, either – There is no “right way.”

          There never is.

          Look around, learn, think, read, ask questions, imagine strategies, play “what if” and prepare the best you can, but don’t spend your time wasting your time living in fear of tomorrow – What are you going to do? Be scared-to-death to get up and get cabbage for munchies for fear of falling? Rent a room at the hospital? Wall your daughter into her bedroom, so she’ll be there to take care of you? Rent an apartment over a pharmacy?

          Come on! No, you’re not! And neither am I. What we are going to do is the same thing that most of us have always done: The best we can.

          The best we can to learn, think and prepare, while understanding that tea leaves and tarot cards won’t show us what we think we want to know: Tomorrow. We think we want to know how the story is going to end.

          …but we really don’t; because if we did…?

          What would have been the point of the story?



Peninsula Daily News Column 8-1-2013 "Learn about dementia the easy way"

          If your life is touched, in any way, by Alzheimer’s (or any form of dementia, for that matter, but we’ll just say “Alzheimer’s”), here are two things I know to be true:

1.     You HATE that disease with a passion that you didn’t know you had in you! And…

2.     …you know a lot about it – You don’t think you do, but you do.

So, #1: Some of you are thinking, “…as opposed to all of the diseases what we like…??” No, but Alzheimer’s is slow, deceptive, cruel, unpredictable and robs us of the one thing that we valued the most: The person we love. The person we love slowly slips away and is replaced by…somebody else – Somebody else that we didn’t know, but now have to come to know, with little bursts of that other person who we did know, so sometimes we end up thinking, “Who are you?”

Then, we hate ourselves for thinking that.

#2? Well, the most common scenario for a lot of us is being the caregiver for the person with Alzheimer’s; we could be friends, extended family, professionals, or even the person themselves, but the one we see the most and know the best is the “caregiver” scenario.

Most caregivers for people with Alzheimer’s make it up as they go along. We do that because we don’t know what else to do. Most of us have read books and web sites and talked to pro’s and listened to others and read and read and read and…But, moment-to-moment, we make it up as we go along, because our “moment-to-moment” isn’t in anybody’s book.

Sometimes we screw it up, and we beat ourselves up: “I should have known better!” “I should have seen that coming!” “I should have known that!” “Why didn’t I think of that??”

But, we learn – Usually, the hard way.

We learn what works (today), and we learn what doesn’t. We learn (sometimes) about stuff that’s out there that can help us, and we learn about what we wish was out there, but isn’t.

But, we learn.

So, now, I want you to put yet another thing on your plate that can’t possibly hold another thing: I want you to show up at the Sequim Senior Activity Center (Yes, the “senior center”) at 1:30 next Tuesday (August 6). I want you to do that because the Western and Central Washington State Chapter of the Alzheimer’s Association is going to put on a “town hall meeting.”

The point of said town hall meeting that won’t be at the town hall is to hear from you about what ought to be in the “National Alzheimer’s Plan” (Yes, the Feds may actually be getting around to this) AND the Washington State Plan for same, because if you don’t tell them, then what will happen is that people who don’t know as much about it as you do will just make it up as they go along…

…and most of us know how that goes.

There will be a panel. The panel will get us up to speed about what’s happening on the topic, and provide some expertise to answer some questions, and talk a bit about an initiative in Washington to improve health care for folks who are on both Medicare and Medicaid (“dual-eligibles”), but the main thing is to hear from you.

I’m told that I will be there to “moderate;” interestingly, I’m not at all sure what “moderate” means, unless I’m to forestall us from breaking into spontaneous line-dancing (which might, actually, not be a bad idea), but I don’t really care, because it’s going to give me an opportunity to learn a lot from you.

You don’t have to walk-in with the Great-Solution-for-Alzheimer’s-in-the-Western-Hemisphere (unless you have one); you just need to be able to tell us what would help – What would have helped – Or, what didn’t help. Or what failed. Or what went wrong. Or what worked wonderfully!

Or what would help you to put one foot in front of the other, tomorrow.

I know that you don’t have time for this. And I know that you’re probably thinking that by the time anybody gets around to actually implementing an “Alzheimer’s Plan,” it could well be too late to do you any good – You may be right – I don’t know.

What I do know is that if we don’t share what we’ve learned the “hard way,” then everyone else who becomes forced to walk in our shoes will also be forced to learn it all, all over again – The hard way.

Please don’t do that.

Just sigh, roll your eyes, and mutter under your breath, “Oh, sure, why not? I’ve certainly got nothing better to do…” Then, show up at the Sequim Senior Center at 1:30 on August 6^th and learn something.

And SAY something!

And don’t fret, because I don’t know how to “line-dance,” either, so we’ll all just make it up as we go along!

The hard way.