Elder Care: The Hardest Job I Have Ever Had—And a Book RecommendationJuly 30, 2014
Above: Sketch of Phyl and CR made one evening when I needed to draw something before bed. This sketch was made using photos I’d taken at a holiday party. I wanted to capture Phyl’s smile. It’s a family joke that when you point a camera at Phyl this is the face she shows you. Even now that’s true. Just look through the family albums if you don’t believe me. The only photos I’ve ever seen of Phyl without this smile are the photos I’ve taken of her when she was busy dealing with someone else and didn’t know I was taking a photo. The paper is Gutenberg. I had prepainted it with some stenciling in bronze stamp ink. The pattern unfortunately competes with the sketch, but that’s the luck of the draw the way I prep my pages. The green gouache was added after I'd finished sketching so that I could uncomplicate things a bit more. And I used white on some of Phyl's teeth because the stenciling fell there and looked odd. Dick likes the sketch of his mom. “That’s her exactly,” he says. He doesn’t like his father’s portrait. It’s exactly like him—trust me. I think Dick still sees his father pictorially as he was drawn by a Honeywell artist at the age of 47. And he might see too much of his own future in his father’s face. (Really they look exactly alike with a slight difference in the finesse of the nose.) Like Dick, CR has those impossible light and bushy eyebrows I’m still struggling, after all these years, to find a visual vocabulary for. But as I said, this looks exactly like him. As for the sketches I make of them when they are in the hospital—I don’t think they ever realize I’m sketching. They’ve never asked to see them. Perhaps they are so used to me sketching that they don’t think I’m sketching them. Phyl is always supportive of my art so even if she didn’t like the sketches I know she would be pleased I was working on my craft. CR likes to be the focus of attention. He also doesn’t ask to see my sketches, but when he has awoken in the hospital and seen me sketching him, he has exhibited an unerring ability to retake the same pose and “slumber” a little longer while I finish; judging that I’m done when he hears me cap my pen.
This is the longest post I have ever written. Blog “rules” dictate that you never venture into this length (7000 words!).
But I had something I wanted to get off my chest, something that has become the center of my life for so long now, that it actually felt disingenuous for me to not write about it so that all my readers really knew what was going on in my life.
Many of you may not care about my life, but only about art instruction. (I totally understand that.) If so, just scroll, and scroll, down, down, down, to the book recommendation at the end. I’ve highlighted it. I also inserted one of my sketches of Phyl there to help you locate the review.
This book recommendation is for anyone with older relatives in his or her life. If you have parents or in-laws still living, even if you don’t read my post, please scroll, and scroll, down, down, down, to the book recommendation at the end. It’s a book everyone needs to read.
If someone you are close to has parents she or he is caring for read this book, just so that you're a little more knowledgeable about what they are going through.
If you are a brother or sister who has a sibling caring for your parents, read the recommended book—you really do not have a clue if you are not involved in the day-to-day care of your parents what responsibilties, tasks, trials, and joys your sibling is experiencing. My hope is that you will read that book and immediately call your sibling and ask when they want help, and what type of help they need—and then follow through. You can never understand what a full-time job this is, if you haven't taken it on.
Yes, elder care is the hardest job I’ve ever had, or am likely to have. I’ve worked in a factory sorting computer parts (my reorganization of the workflow for my group to up our productivity resulted in factory wide changes, just because I was a restless 19 year old); as a fry cook (damn I’m good on a flat-top with 20 plus orders going); for a crazy woman whose response to more work was to create taller piles (I got through those piles in 2 weeks and put the entire crew on a new print schedule that kept everyone busy for more than 9 months after I quit); in environments where sexual harassment was the norm (trust me, you don’t ever want to hear my “quiet” voice); and I’ve worked for frantic clients who just can’t make up their mind (so you profile their needs and give them what you know they have to have).
By comparison even with the "difficulties" all those jobs were simple, straightforward, and easy as breathing. None of them prepared me for elder care.
I’ve never had kids. I've had people tell me raising kids is the hardest job you can have. Judging from how they aren’t doing a great job of it I think they actually might be right.
Other friends really have had a hard time raising kids. One friend lived to see her adult daughter murdered. Another friend lost a toddler to cancer. Other friends have had to cope with a wide range of childhood illnesses and injuries. Those women had the hardest job I can imagine and I’m in awe with how they managed to constantly live in the now.
But the initial thrust of childrearing is a hopeful business: to bring new life into the world, to carry on, to create family. While that may be short-circuited by a million different experiences, most parents work everyday for the future, the promise of the future.
There is not even a hope of a happy ending in elder care. Someone you care very much for, with whom you have shared great chunks of your life’s history and experience, is failing, deteriorating, right before your eyes.
As Dick’s dad CR says frequently: “Aging is not for sissies.”
That statement used to be somewhat humorous, when he was in his late 60s and early 70s, when he’d had triple by-pass surgery and was trying to put his life together with a physical exercise program and some new dietary constraints (none of which lasted). But at 92, when he says that, you are reminded that he’s only here right now because he is tough and battling all the way.
Sometimes, because we always had a bit of an intellectually adversarial relationship (he likes to argue) it seems that it’s me he’s battling with the most.
I was the person who talked him into moving with his wife Phyllis (Phyl) to an assisted living facility.
Let’s just say I took one for the team.
Dick’s parents love him more than I have ever seen any parents love a child. They love him with a love so unconditional that had he been an insane and cruel person they would still have loved him. I know this because everyone who has come into Phyllis’ circle, from the ex-boyfriends and ex-girlfriends of her children to their children to the children in her neighborhood, are still loved by Phyl despite some of them having really messed up their lives with drugs and crime and just plain stupidity. She doesn’t accept the bad behavior. “Crap is crap,” she is heard to say when someone offers excuses instead of taking responsibility. But she loves the “sinner but not the sin” to use the language of her religious heritage. She's Lutheran. (That's one of the reasons you may sometimes hear me call Dick "Lutheran Boy." Why and when I might do that is a tale for another day.)
So anyway, as I said, I thought the push for moving into assisted living, since it wasn’t going to be welcome, would be better coming from their somewhat bitchy and certainly outspoken daughter-in-law.
I have absolutely no regrets. They were not safe in their home. Phyl slept 20 hours a day. When she did wake up CR heated food we brought over or made a concoction of something that defied understanding (because he’d never cooked anything during their married life and had no skills). But mostly he just gave in to their joint love of sweets and blamed it all on Phyl. So nutritionally they were at risk.
Additionally his sight was failing. His balance had failed.
Since we had over the past 25 years done more and more stuff for the folks, it was becoming incrementally impossible to keep taking care of them in their home. I was spending hours on the road running errands for them. They were weekly firing the cleaning service I had hired to clean their increasingly grime-filmed home.
So yes, I took one for the team and have no regrets.
Just as I have no regrets, when I was first on site at the hospital after CR collapsed in March 2013, over taking possession of his wallet and removing the credit cards and driver’s license, taking his car key and removing his car permanently.
We'd already had to cancel the credit cards twice because of "loss." And I had been arguing with him for 3 years, unsupported by anyone else in the family, that his vision and reflexes were not sufficient for driving. And he would argue that it was his right. And I would point out that driving is not a right but a privilege, and “What are you going to say to the 3 kids of the 30-year-old woman you kill while driving?” I can be pretty brutal when I argue a point.
I get that giving up the driver’s license was a loss of independence, either perceived or real. But I didn’t see why it had to be. It was the biggest hurdle for me to get over as we went forward—accepting that he saw independence differently, that he believed he had rights that transcended all rational thought and reasonable boundaries, and that I was no longer arguing with someone capable of rational thought.
Dick would visit his father and talk to him about their joint engineering plans and see that his dad could still carry his weight; I would visit and try to show him how to shop for organic groceries (he couldn't locate the aisles or read the product labels and pronounced it all “too expensive”) or cook rice (he never got the knack of turning off the flame for the last step). In a hundred different ways I daily saw he couldn’t cope with what was needed to get them through the day while Phyl slept.
I watched him strain with his one good eye to read the labels on their large lists of prescriptions. I had to fight with him to give this up. He would spend an entire day filling one week’s pill memory box—without any guarantee the containers had been filled correctly, and 2 days on the phone with drug companies making orders that never arrived in time because he'd forgotten to order. (Dick and I now do 3 weeks of pills in about 10 minutes.) I explained to CR that it wouldn’t take us any time, and that it would free up his time to work on his projects—something only he can do. (I am not above using flattery when it is linked to truth.)
I even took over writing his checks out for him (heck I even find it difficult to locate and read the account numbers on our bills and my eyesight is great in comparison), and then bringing them over to discuss, so he could sign and still feel in control.
Now he thanks me for my efforts with the pills and the bills (though now I write out the checks and Dick, with power of attorney, signs them). CR will never forgive me for taking the driver’s license. He and I both know that. I can live with that.
Once you start doing things for people, like taking them to appointments, involving yourself in their food preparation, and start hiring people to help them not only is there no going back, but you start to see more intimately on how many levels that person just isn’t coping.
They had at least 4 subscriptions to TV Guide. They would get a notice to renew and send it in. Some came from different companies. None will consolidate subscriptions. Now magnify this by over 40 individual magazines—surely someone is looking into this elder abuse scam?!
Once you see how clearly someone isn’t coping you can’t help but look for more ways to make life a bit easier for him or her; or at least healthier.
In March of last year it became evident, because of another health crisis that CR might be able to return to assisted living if all went well, but he would never be able to take care of Phyl who was wheelchair bound and demanded he do everything for her, from helping her in the bathroom (believe me you never want to see a circus of possible peril like that in your life—especially when you have two teetering 90-somethings, the cord from an oxygen tank, and an unstable étagère filled to the brim with toiletries stationed right in the wheelchair’s path) to rearranging the lamps on a twice daily basis, simply because it struck her they should be rearranged.
Because of CR’s hospitalization in 2013 Phyllis was moved to long-term care in Episcopal Homes, and CR was moved to an assisted living apartment that is in the same building, but different wing. They can see each other every day if he walks over. It’s not ideal, but they are both safe and healthy. And Phyl is now up and actively engaged in a range of activities (although still wheel-chair bound) from 7 a.m. to 7 p.m. which is better than CR’s daily activity.
Those moves necessitated the fixing, clearing, and cleaning of their house preparatory to its sale.
Here’s one of the points I want to really get across to all of you who have never dealt with elder care and see it coming up on the horizon. It takes a HUGE, HUGE amount of money to place someone in assisted living or long-term care. The folks are in a great place, with kind compassionate staff. It all comes at a cost.
I knew this was going to be huge. I knew they only had limited savings and their house price to make this happen. I knew we had to sell the house immediately, to stop the flow of money used to keep it running. At least Dick saw this was true.
His sister wrote from California and talked about having an estate sale. I would walk into Dick’s study and stand there exhausted from working all day to clear important papers out of the house and ask, “What does she think your parents still have of value?” The few items they had of value had already been given away to relatives and friends. Phyl has always been a generous person, and in her final years at her house if someone visited they went away with something whether it was a porcelain figure or a Target Halloween ornament. (Dick and I declined all such gifts because we are not sentimental in nature for “family stuff” and we have our own clutter issues to deal with.)
I was so puzzled by this constant insistence on the part of my sister-in-law that we hold an estate sale that I thought, “What am I missing?”
Look, my current looks-like-she’s-still-in-college lifestyle might not seem like I’d know an antique from a replica, but I spent my developmental years around people who collected lovely things and wanted me to understand what made those things lovely, and who were very anxious that I understand the difference between what was real and what was fake and how to tell it at 20 paces. In short, during my childhood and adolescence I was enrolled in an advanced, if impromptu, connoisseur-ship course. In graduate school I was recruited by an art history professor because of my fake detecting skills.
So what was I missing? There were boxes and boxes of seasonal decorations from Target et al. and some wonderful pieces of art made by young artists Phyl has sponsored and encouraged over the years, but there mostly was a lot of well-used and worn stuff deeply unimportant to anyone else.
My sister-in-law kept mentioning the estate sale and even found a woman who could come a couple hours a week and sort so that we could have one in the fall of 2013. I knew we couldn't wait that long. I finally asked a friend who is an interior designer and antiques collector who has organized many estate sales to come and have a look.
Kathy immediately walked up to a table where there were some crystal glasses with gold rims. “Well, these are worth something,” she began. I stopped her by saying we were sending them to my sister-in-law who entertains.
“Well this vase,” she started. I stopped her again saying it too was being shipped to the sister-in-law.
Less than 30 minutes later, and after several more similar exchanges Kathy looked at me and said, “Look, after you send all that to your sister-in-law there just isn’t anything of value left. A couple pieces of furniture that someone would pay bottom dollar for because he’ll have to reupholster or refinish them, that’s it. You’ll end up owing the estate sale organizer a couple thousand dollars for her time and effort, if you can find someone willing to take it on. And you’ll never find any library who’ll want CR’s books.” (CR had held on to 30 or more years of his engineering journals in the belief that when he needed money he could sell the complete sets to a library—he really didn’t count on digitization and the reduction of holdings now facing all libraries.)
Relieved that I had not totally lost it I made arrangements for someone to haul everything away once I’d gone through each room for photos, financial papers, and the remaining personal items (like clothing).
I cannot say enough good things about Empty The Nest.
The owner Sharon Fischman, is bright, enthusiastic, and energetic. She is concerned about proper disposal and makes it all very simple. The fact that the company then sells still usable items in their thrift shop is another plus—it means they can charge you less but it also means someone else is getting life out of something that otherwise would be in landfill.
Sharon also found the woman who then cleaned the empty house for us. I have never seen anyone work so hard. She cleaned the small rambler for 13 hours. (After 8 hours, I called her every few hours to see if she was ready for me to do the walk through as I didn’t want her stuck at the house waiting for me to drive over.) She cleaned areas that I warned her I thought would require a hazmat suit. Everything shined. There were only some places on the walls she couldn’t “clean” because CR had decided that duct tape, foam tape, and self-adhesive all-weather Velcro, were all great materials for hanging framed photos and documents.
When I did the walk through I actually started to cry. I asked the woman repeatedly if she needed MORE money than her quotation. I am still stunned by the memory.
Here is another of the key points I want to get across to you about the issues related to elder care. It is expensive in time, effort, sanity, and money to clear out and clean a house that has been lived in by one family for 60 years—especially if that family never throws anything away and the mom loves to buy new sheets as a form of “changing” the seasonal look of a room, and has an addiction to fabric napkins and candlesticks.
Find someone in your area who is capable of handling all these aspects of the move. You are still going to put in hours and hours of your time going through the house for personal materials and conferring to ensure that you get all the things your relatives need or want for going forward—I cataloged all CRs books with the help of a friend and then asked him to circle the books he wanted to keep. Once all of those were packed the rest, as Kathy had indicated, had to be pulped. But with the books he really wanted to retain safe, Dick and I were able to purchase and install shelving in his apartment so that those books are accessible for those days when he feels up to working. I think that’s the kind of independence you can best support.
The good news in this story is that because we acted quickly and got the house on the market just before an interest rate increase, and during May when the lilacs in the backyard were blooming showing everything to best effect, the folks got a phenomenal price for their home—a price that made their current living situation possible.
(We also had an excellent realtor—Susan Jacobsen of River Arts Realty. I now refer to her as “my” realtor and know that I will never want anyone else to help me sell or buy a house. If you live in Minneapolis and need a realtor you need to call Susan.)
What I’d like you to take away from this portion of today’s story is that you need to COORDINATE. Things have to be emptied, and furniture has to be moved and the house has to go on the market. Each thing has to happen before the next can happen.
If we had waited until last fall to sell the folk’s house it would probably still be on the market and there would be severe financial issues stressing us more than we are already stressed.
So find people to help you BEFORE you believe you need them. You’ll know that you’ve found a solid agent of change to help you if that person sits down and clearly explains a timeline for her part of the picture and helps you understand the overall process.
It has been over a year now since the folks moved into Episcopal Homes—Phyl in long-term care, CR in an assisted living apartment. There have been more hospital visits for CR, some planned, some unplanned. Phyl continues to thrive. Once she understood she could continue to live there she started making friends and involving herself in activities. In short she did what she has always done throughout her life—she dealt with exactly what was facing her, without nonsense or shying back from reality. She is in many ways much stronger than her husband, despite her wheelchair.
While she may have memory issues (on some days she can’t remember her second son is dead, on other days she doesn’t remember the circumstances of his death) she is aware of her brain’s changing functionality.
Every time I see her she asks me, “Are you still living with Dick?” (Since I've visited almost every other day since April 2013 until I was ill this year and couldn't go out, she has asked that question hundreds of times.)
She asks because decades ago Dick and I went through a really rough patch and I went to talk to both her and CR, to explain that I might be leaving the family.
Somewhere in the databanks of her mind she’s not sure that all that was resolved. And she’ll say what she said that day, decades ago, “Tell him to shape up. He needs a good kick in the ass, he’s a good guy, but he can be a pain in the butt.”
I think of this as just one more way her ability to give unconditional love to everyone manifests in the world, that she can take “my side” against her much loved son, even if there are no sides to take.
Often she’ll ask things that seem to come out of memory loss, but which when you talk to her daily or even only a few times a week, you realize represent her way of checking reality.
She has told me on several occasions that she knows her brain is going ("but I’m still more with it than anyone else here"—and you have to believe it). When she asks questions she’s looking for confirmation that what’s in her memory is real, and not a dream or a dementia-grown implant.
Recently the family lost a young cousin to a horribly tragic death. Dick and I explained all the circumstances to Phyl. She is one who can face facts. She is one who wants details. She was deeply saddened by the loss. Her thoughts were all on the mother. But the next day when I visited she asked where Dick was. I told her he had gone to Tim's funeral at Squaw Valley. Immediately it was evident she had no recollection of recent events and we relived the whole horror again. The request for details, the mulling over what could be done. The deep sadness for his mother (one of Phyl's favorites). For several days after that things were fine and the topic didn't come up. Then upon Dick's return with family photos Phyl needed it all explained to her again, as if it were a new event. Knowing and then not knowing. Fresh, and then forgotten. The intensity with which she feels the emotional pain is balanced with the inability to hold the hurt. There is some comfort in that.
CR on the other hand has battled his diminishing mental capabilities with his stubbornness and a failure to accept that what he knows from his brain is not real. He’s always lived by his brain so he refuses to doubt it now. He has lost many a dime (his self-determined limit) betting against me on what I know are sure things. I tell him I don’t want to take his money, but he keeps insisting on what he “knows.” For instance before an old family friend came to visit this summer he claimed she wouldn’t be coming because she and Phyl had fought. I explained that I’d just received an email from the friend with travel plans so he was mistaken. “Besides, what do they have to fight about?”
Sometimes when I ask him a follow up question like that I see him catch himself, and search in his brain, and consider for a moment how unlikely his statement really was, all before reasserting the same illogical statement.
There are several factors at work here—his hearing is bad. Sometimes he hears part of what you say, and then part of something else and patches them together. The result is a little bit as if someone went to a stand-up routine and heard the set up of one joke, went to get a drink, and came back to hear the punchline of another joke.
He doesn’t see it like that. He sees it as “TRUTH” from his brain.
Like I wrote, I’m racking up the dimes!
Another factor is that where once there was a clear boundary between dreams and real life, between dreams and the memories generated by real life, now there is only a slight membrane through which everything flows unimpeded.
This is the part of elder care that is hard, really, really hard for me; harder than the physical debilitation.
I have long ago accepted that arguing with CR about all the things we used to argue about is meaningless. I have stopped jumping at the bait when he tells me that he doesn’t like his eye doctor because the doctor isn’t helping him deal with his legally blind eye (there is no help for his condition; I love his eye doctor and used to defend him, now I just say, “hey, let’s ask when we visit next,” or “Talk with Dick and he’ll explain it,” because he still does value his son’s wisdom on all things medical).
(My friend Pat has helped me work up a strategy for easier communications with CR. It took someone who knew me and my mind but who wasn't involved in the exchange to do that; just as my friend Diane has gone ahead on her journey with her parents and reached back to help me along—you are really going to need the help of your friends, if only to just speak with someone "who gets it.")
Trying to talk “sense” to CR, or to make points in an argument with him is like shooting fish in a barrel, and he’s the fish, with no fighting chance. I’ve never been a bully. I may be the evil bitch who took away his driver’s license, but I am not a bully.
Dealing with the failing minds, for someone like me who has always feared just that—losing my mind—is hard. It’s bad. Actually it’s hell. Because now, sleep deprived from worry over getting their appointments in and making sure they have this and that, and 10,000 other things that we do for them, I find that I don’t remember what I used to remember. I might be talking about a film and instead of being able to tell you the year it was made as well as the main actors, director, screenwriter, editor, and casting agent (don’t ask me why, I used to keep track of casting agents and their careers) I’m lucky if I can start a sentence with, “That guy who was also in, you know that other film about WWII with oh, the blonde guy…” Then I just give up. I suppose that really is what the iPhone is for, but I’ll be damned if I’m going to whip it out at lunch and look something up.
I’ve forgotten more about Shakespeare and Dickens than I ever thought I would. I see glimmers sometimes. And I see the now vacant passageways where that knowledge once lived. It has left, leaving a memory scent behind, telling me only that I’m looking in the right “rooms.” In other words I still know that I used to know a lot of things, and I know what those things I knew a lot about were, but in many instances I really no longer can call up the actual facts I used to know.
So why am I writing at length about all this now, especially since I admitted early on we’ve been taking care of Dick’s folks for the past 25 years, letting that care set the tempo to our lives, keeping us here, available for that care.
I’m writing about it now because in the past 2 years we have crossed several critical phases. In many ways elder care defines my life now (not just why Dick and I haven't vacationed together for more than a night away in over 25 years). I wanted to share that reality (it’s why I’m not traveling as much to teach; why I’ve scaled back on my volunteer activities; and why I’m painting fewer paintings).
I see and meet many people every week who haven’t got a clue about elder care and the shit storm that is about to hit their lives. I thought that by writing about my experience some of the particulars might jar people into preparing. In many ways my hands were tied. I am not their child. No matter how many times I tell the nursing staff at the residence that I’m not Phyl’s daughter they don’t believe me because they see me all the time—in fact I am so familiar to the residents I have been asked repeatedly to call bingo for them. But the reality is as a non-child I have all the duties and expectations put upon children without any of the rights to go forward with action that a child does.
I want to urge you to have early talks with your elders (and your siblings if you have them). Get them to make wills, get them to make living wills, get them to sign treatment expectations forms like DNR (Do not resuscitate) forms if they want to be proactive in their care. They’ll need everything explained. And after a certain age explaining until you turn blue won’t help at all. Only you will know when that time will come.
Also you need to start spending daily time with your elders to get a realistic picture of how they are living and coping alone at home. Relatives come into town for a few days or a week, do things with the folks and leave, thinking all is well, “they’re not doing that badly.” Dick and I then spend the next month helping them recover from the exertions of dealing with visitors. (When they were at home this meant both of them took to their bed for 18 or more hours a day for weeks at a time.)
My only regret in this whole process is that I didn’t push Dick harder about things like the driver’s license (we were just lucky on that one folks) and the realities of maintaining life in their house and their options. You need to talk to your elders way before any of that is needed. You need to make plans, get on waiting lists, get sorted.
Your elders at 60 or 70 years of age might seem young and vital, not frail at all. It's still not too early. Plan ahead. One slight misstep can set in motion a cascade of health incidents that will have you scrambling.
Sometimes it takes someone like a “not-a-daughter” to see that the time has come and make everyone else understand it.
But if you’re that “not-a-child” who’s involved my sympathies are with you because it will cause more stress than you can imagine to your life and to your partnership. Be prepared.
And if you are aging, I urge you to act preemptively and get yourself in order—clear out your house, put your important papers in order—I spent three 8 hour days searching every folder in the folk’s house looking for necessary tax papers. I went from file cabinet to desk drawer to file cabinet to cupboard in another room, following a trail of folders labeled, “Important Tax Papers, Phyl and CR” only to find each one EMPTY, while the master folder into which their contents had all been combined remained elusive.
That’s just one example.
We’re all going to die. It’s best to have things in order so your death doesn’t become a major league headache in the life of someone who loves you.
Maybe I see this all so clear cut because I have never worried about dying. In fact when I was young I doubted I’d live past 35 for some reason I’ve never been able to pin down, unless it was the massive hours spent flying and living where plagues, disease, and parasites clustered down the street from us.
I still don’t worry about dying. I do on the other hand worry about Dick dying before he finishes organizing all the folk’s papers!
Here’s the advantage to having those serious talks before it’s too late. Everyone gets to be on the same page and work towards the same goals and results. Some people may even be able to opt out. To make it clear that they are opting out so that everyone else knows how much slack they'll have to take up.
When things were going badly with the folks declining at home and CR was still driving, I actually tried to opt out of it all. I had too many ethical and moral objections that reached the core of my body to be even a standby participant while he still drove. But in my case the reality was I couldn’t opt out because then it all fell on Dick; so the opting out thing doesn’t really apply to most people and you’ll lose your sanity if you think it does—so just start talking and planning about it NOW.
The other advantage to working through all this stuff early is that you get to the fun bit sooner.
Yep. Elder care is fun, just like all those other supposedly hard jobs that I have had in my life that turned out to be easy.
It’s fun because now that they are safe, and eating well, and there are extra people besides just Dick and me checking on them to see “if they are still breathing.” And it’s really fun to be with them.
Well, it is really fun to be with Phyl because that unconditional love just coats you, and because she is philosophical about the brain decay, and she has, as always, embraced gratitude. She has that down pat.
It’s fun to be with Phyl because she doesn’t have an agenda. She is just being in the now. I know that there will come a time when she won’t even remember who I am, but I know that I’ve already glimpsed that time and I’m OK with it because we’ve had so much good time together. All because she taught me about unconditional love.
(Though I’m quick to remind Dick that if he wants unconditional love he should go to Phyl—I’m not made that way.)
My relationship with CR is still very much a work in progress. We have certain conversational topics that are “no-fly zones” in our relationship. The list grows every day. Since he no longer has the memory to remember what’s on that list, I have had to let go and find a way to not care about the nonsense or even wrong-thinking way he argues. It has made me find havens of thought we can talk within. This has engaged my creativity and my heart.
The other fun bit of elder care is the memories—of course theirs are failing so sometimes I have to be the one to remind them of something. But it’s good to hear the stories, and to help them remember the stories that mattered to them.
And there are wonderful little moments in elder care that happen even in the direst circumstances (like the hospital) that make you happy you can be present for someone else, present to witness his life even as he is getting ready to leave it.
Growing up I had no role models to help me deal with how to care for others in old age. My family lived overseas away from my parents’ parents. I went for years without seeing another relative. When we did live in the U.S. we perhaps saw our relatives on major holidays, but typically not more than once a year. It wasn’t until I came up to Minneapolis to attend graduate school that I had any time with my paternal grandmother on my own. We were able to form a relationship based on where we both were in life, at that time, without any of the quibbles, complaints, or fondnesses others might have tried to cast upon us.
In Dick’s family I saw intergenerational relationships. We lived above his maternal grandparents for years, helping them with lawn care and grocery shopping, seeing them everyday. That’s the type of guy Dick is, and the type of family his mother ran.
So those are my experiences and recommendations. Take action now while minds and bodies still function.
Get on to the fun bits as soon as you can.
The fun bits make the more difficult bits bearable. We are after all working towards the inevitable.
This has been a somewhat sanitized recounting. I haven’t written about the details of physical decline. Such decline is normal and to be expected. I am less squeamish about deterioration of the body than of the mind. Helping someone clean up after an unfortunate toilet experience is something I can cope with—I had that experience with dogs whom I loved; I can and have provided the same care for aging adults whom I love much more—as long as my own physical capabilities allow it and don’t put them in jeopardy. You always need to be aware of when you yourself need help.
I haven't written about all the frustrating conversations I have with Dick when he doesn't act as quickly as I need him to act. We have to constantly negotiate a path to move forward on. We have to balance my need to plan with his need to let things go. My need to see what is and his need to see what he remembers. Since either reality can exist in a given day it is not a comfortable dynamic.
I haven’t written about times when frustrated, one of them bursts out in irrational anger. There's much to be frustrated about in their lives with the growing limitations. Caring about someone makes it easy to not worry about these outbursts, but they take their toll in added stress. I have friends for whom such events are their whole experience of their parents' aging and they continue on with compassion.
I know everyone’s experience is going to be different. I just wanted to take time today to give you a heads up.
It’s never too early to think about all this.
Tips For Easier Elder Care (Obvious, but they have to be mentioned…)
Find a secure way to always carry the following information or items (I keep some stuff on my iPhone like a prescription list but I also carry a hardcopy to leave with the doctor):
• a complete prescription list that includes dosage and reason for the prescription; also include any drug allergies and their pharmacy name, location, and phone number (so that doctor's staff can call in prescriptions)
• a medical history listing all operations, drug allergies, and any implanted medical devices (such as heart valves)
• consolidate all their insurance information and have it on hand, along with any account cards
• social security number and date of birth (if not memorized)
• doctors' names, addresses, phone numbers
• any passwords or number codes they may use (in their home alarms or on the computer)
• their address and phone number (since these were new in our case I haven't memorized them and you need them every time you go to an appointment)
• apply for a handicap parking sticker (in Minnesota these can be hung on your rearview mirror when in use)
• apply for a photo id card before the expiration date on his or her driver's license. You need a photo id in Minnesota for doctor's appointments.
• a laundry marking pen to label clothing; check clothing frequently to relabel as needed
Pitfalls to watch out for:
Avoid scheduling multiple appointments in one day. Transit times are always longer with slower moving elderly. And if you are wrangling 2 elderly individuals be alert to the time when both need so much attention (with wheelchairs, or to keep from wandering off) that it's no longer possible to manage both at once. In our case it made CR upset he couldn't go to all Phyl's appointments (because I couldn't help him too, and make sure he didn't wander off and get lost), but I give him a report when we return. He realizes that's better than the risk of injury to himself.
Be mindful of their assisted living eating schedule. In our case they really locked into the social aspects of dining and don't like to be out around meal times.
Don't neglect your own health. Learn from my bad example. I lapsed from my on-going physical therapy regimen (to protect my neck and back) while clearing their house, moving them, taking them to the doctors (lifting the wheelchair etc.) and injuried my dominant arm. Find a massage therapist for you and for them!
Set up their computers so that you are the administrator and they are a user—this prevents them from downloading random software from the internet which may gum up the works and necessitate re-install of the system. (Believe me, they won't remember what they installed or clicked on.)
If your elderly loved ones still like to use checks or a debit card, create a new account with a limited amount of cash in it so that if they lose the checks or card it's less of a headache.
Talk to a memory specialist for strategies on how to speak to or deal with the particular situation you're faced with. They've done this before and have great advice which will remove stress from family interactions.
Buy 2 or 3 padded folding chairs to keep in the closet to bring out for times when there are multiple guests (sitting is always limited and you really want to be able to put away the "clutter" they might bump into).
Visit during the day to see them at their best; people slow down in the evening and you might not get an "accurate" view of their current level of engagement.
Familiarize yourself with do-not-ressucitate definitions and discuss them with family members to undertand the realities and the wishes of the elderly.
3M Command Strips are your friend. Have strips as well as strips with a variety of hooks, always on hand for hanging framed photos in apartments and nursing home rooms. (Target is a great source for inexpensive frames.)
NOTE: PeggySu wrote to me privately asking that I remind people that POAs (power of attorney) are only good during the person's life time. I thought that was clear in reference to how Dick was able to pay their bills now in their lifetimes, but in case it isn't I'm adding this note. She recommends, since she has actually gone through the whole process past the deaths of her parents, that you hire a lawyer to help you deal with the legal requirements that fall to the executor (such as putting a notice to creditors in the newspaper by a certain date). She's found the help worth the cost. And I think that's another bit of helpful advice to add to your list. I assumed that as you started to get some of the documents in order you would seek legal help of some sort even if you were a lawyer (because everyone specializes). I am encouraging you to do that as soon as you can because there are so many issues involved that have legal and financial ramifications. This post wasn't meant to be a comprehensive guide, but just to highlight the things that are immediately going to hit you. It's worth it to pay a lawyer to help you set up a plan, just as it's worth paying the other professionals I've mentioned in my post for clearing, cleaning, realty, etc. You'll have enough to cope with beyond trying to get up to speed on everything else that's flying at you. Happily the one things the folks had organized years ago was their after death stuff and it has been constantly updated.
Above: A sketch I've shared with you before in a post on Sketching in the Dark. I've placed it here to encourage you to sketch your older relatives when you find yourself bedside. (They like waking up to find you there.) And also so that you could more easily find the recommended book at the end of this very long post. If you'd like to see recent sketches of CR in the hospital here's another link. Click on the image to view and enlargement.
And if you don’t believe me, I’d like to recommend you read, Roz Chast’s visual memoir, “Can’t We Talk About Something More Pleasant.” (The link is to an Amazon listing, but I'm not affiliated with Amazon. Buy the book from your local independent shop if possible.)
I originally read a section of this book a couple months ago in an issue of the New Yorker Magazine where Chast’s cartoons are a frequent fixture. I pulled the pages out and put them in my journal. They were so well observed, so full of truth, heart, and humor.
Recently a friend told me there was a WHOLE book by Chast about the experience of coping with her parents’ aging and death.
I bought the book and read it in one sitting. I’ve told friends to read it. I’ve given copies to other friends.
Her experience is not one-for-one a mirror of mine. She was dealing with her parents with whom she had a lifetime of memories and shared experiences. I’m dealing with my in-laws. I came rather late to their party, though they then became the main feature at the party that is my life.
Despite the varied differences I found it reassuring to read Chast’s book. To hear someone express doubts or frustrations about similar or related experiences to those you are experiencing when under extreme stress to get it RIGHT when you only have one go at it, is reassuring and life affirming.
In 2000 my friend Roberta Avidor sketched at her mother’s deathbed—incredibly beautiful work. It struck me then that there could be no better use of one’s time in such a situation. Because of that I have in the intervening years amassed quite a collection of sketches of the folks in the hospital while I spend time with them. It keeps me present, it keeps me from stressing, it keeps me open to what is happening to them, and it passes the time calmly while waiting for the endless round of doctors. It was good for me to see that Chast took up that practice in the final year of her mother’s life. (In those drawings she steps outside of her illustration style we are so familiar with.) It’s just one more bit of encouragement that her very brave book provides.
Chast helped navigate with her folks to their deaths, and she’s left a trail of experiences that she has been able to digest and present for us that speak to us even when our experience isn’t quite the same. It’s an invaluable book. I hope that everyone reads it. If you never have to deal with elder care it will give you insight into the lives of those around you who do, who may be dealing with elder care right this minute. The book will help you understand why your friends' stress levels are high or why they seem to have no energy for or enjoyment in your usual shared pastimes. The book will help you understand their situation. And if you are one of the millions and millions who are facing elder care responsibilities I know Chast's book will help you prepare, with an open heart, for the inevitable.