Category Archives: dementia

Jun18

The Best Worst Hour

Posted on June 18, 2023 by marybrat

(2012?)

The best, worst hour of every day is the hour (or two, but that just doesn’t sound as catchy, now does it?) that I visit my dad, especially now. Initially, it was many hours at a time, unless it was a hospital behavior ward which limited the visits to one or two hours. But back in those days, whether it was one hour or several, things were more “worst” than “best” for sure. There was nothing to be grateful for at that time, other than the fact that my dad was safe. It was too soon to smile about memories and be grateful for all that he had been. We were still in the thick of it, losing him while he fought us and was angry with us for letting him be sick. I don’t know when he let go, I don’t know when he knew how much and what was drug-induced and what wasn’t.

My mom still has a telephone message on her voicemail from him from three months in, around September, when he was maybe in one of the hospitals or else early on at Manor Care North Olmsted. She played it for me yesterday, and in it he sounded so sweet. He asked how she was feeling, noting that he hadn’t been feeling great, and that he didn’t have his phone (he would ask the nurse’s station to call my mom for him in the early days) but that she should try to get ahold of him whenever she could. It’s a mystery to me when he might have left this, because she was simply there almost all of the time. I had a message saved on my voicemail too, from October. I received it while Jeff and Mom and I were in Florida, packing up their now sold retirement home – another emotional story for a different chapter. In the message to me, he was agitated because he somehow had the idea (he would wake up with these ideas, probably from dreams but then didn’t make the distinction between dream and reality – either that or he just flat out hallucinated it) that my mom was angry with him, accusing him of seeing another woman. He wanted to impress upon me that of course that was absolutely not true, there was no other woman, and would I please convince her of that? When I switched from a Blackberry to my IPhone, I was told the message could not be saved. I was initially very upset, but I know that it already wasn’t my dad, and while I would love to have his voice with me always, it really IS in my head. I’m sure I won’t always be able to hear it, but that’s the nature of things.

It is so hard to describe his early illness and nursing home “incarceration” because he was still very much Hap, and yes fought us on things. But at the same time, his fight wasn’t convincing because while he knew who all of us were and that he was mad at us, he also thought concurrently that he was on a cruise ship or at the office. So you see, we really did have to do what we were doing, and never know who/what you’d get when you went to visit.

I’m going to go back to the past later, but for a different perspective, let’s talk about today since it is fresh in my mind. It was a completely uneventful visit, but still pertinent to the subject of “the best hour, the worst hour” of my day. Parking your car at the nursing home is never a fun thing – what’s next, you know, is to walk into a place that is familiar, too familiar, but unfamiliar as well. You don’t want it to be familiar, it’s for other people. The anxiety grips you as you walk towards the door, because you know what kind of smells are going to hit you when you enter, and that there will probably be at least one person hanging out in a wheelchair, looking like nothing you’ve ever wanted to allow into your life. Maybe they are just literally hanging there, belted in. Their head is probably lolling to one side, perhaps they are drooling. Perhaps they can say hello to you, but many times they cannot. Now that you’re “a regular,” the sight of such a person no longer disturbs you and you smile and greet them by name. That’s part of the paradox of the best/worst. It never gets less gross, disgusting, inhumane, or horrifying. Yet you embrace all of those things, and the people to whom they are happening, with compassion. You don’t notice that Bob’s hair is always greasy and never combed and that he spits when he talks. You don’t care that the food is all over the faces and down the fronts when you are in the dining room with the others. You don’t balk at seeing the top of the diaper out of someone’s pants, or people without their teeth. You stop noticing the damaged toenails of the diabetics or the nose-picking of the guy with the really long fingernails that no one ever seems to cut. They are beautiful and you come to love them for what you know they must have been once. You see your own mortality, frailty, and probable future, and you have compassion.

But before that, let’s be honest, it sucks. Today, I went at lunch time, and my dad was already seated at “his spot” in the dining room, by the window. He had been shaved, which is always a plus – because he looks like my daddy again, clean-shaven, beautiful skin. To see him look disheveled, although it is common now, is nothing like the dad I knew (unless we’re talking early morning before the shower – then that white hair was wild!). Now, though, showers are about every three days in the nursing home. That part is done by the aides, so we get to ignore or forget what exactly that process looks like. Does my dad just sit there on the shower chair? Does he participate, or let them do all of the work? Is he ever “with it” enough to be embarrassed any more? He made a comment to my mom once at the Manor, pointing out a giant FEMALE aide, and telling my mom “she gives such a good shower!” If that’s not proof my dad was ‘gone’, I don’t know what was. The man was ridiculously modest, especially around women. I can’t say that enough times or with enough emphasis. So, today, my dad was clean shaven, hair combed back, and that made him look good. He was also sitting up straight, which helps the illusion of health also; some days, he is leaning over to the left, drooling and with one arm draped over the wheelchair. He matched today, thanks to whomever took care of him. His sweatpants and sweatshirt matched or complemented each other, which is always a toss up.

You may think that we are uninvolved, that we could demand he be put in a particular outfit every day, that he doesn’t like this, doesn’t like that – but we found out fairly early on that most of those type of demands aren’t for the patient, if we’re being honest. They are for the family, so it doesn’t hurt so bad. Dad has no idea if he matches, and no one there does, either. Earlier at the Manor, if his shirt was inside out or something didn’t match well, we might mention it or try to fix it for him. All this did was to confuse my dad. It was to make US feel better, not him. Because he felt just fine with it backwards or whatever. That’s part of the learning process for us – the prettier nursing home (which couldn’t keep him locked in), the demands on what he wears and eats (which he no longer has a clue about) and things like phones and television remotes (which he loses, or adds to his hallucinations, or throws), and even the photos and calendars and mementos we have placed all around him in his room, are for US. He lives in a very particular world, and those things do not matter. In fact, they interfere.

Today, his appearance made me say “hey, good lookin’!” And I leaned over him to give him a hug. He hugged back, which he doesn’t often do, and he smiled. He seemed strong today, awake and aware. Not aware he has dementia and is in a nursing home, but more aware that it is daytime, I am sitting with him, and that he should pick up his fork and eat lunch. Other days he looks vacant, hazy, or has his eyes closed even as he mumbles as if we are speaking . Still other days he “answers” someone calling to him a few feet away, a hallucination. Some days, he needs help eating, having no idea or no desire to engage with the food, or because in his mind, he is in a different reality. He will treat his napkin like a form and his finger like a pen and begin working, despite the plate of food in his way. But today, he was pretty good. He burped, and then laughed. A return to being a baby, is how I look at it. He looked at me sheepishly, and I told him he was just cracking himself up, that all men were seventh grade boys at heart. He liked that, and he laughed and looked at me.

Nowadays, those are the days that make me cry. When my dad smiles, not a polite smile for someone else but a smile because he is chuckling at something, there is nothing in the world that is more beautiful for me to see. He was always such a good looking man, and smiling was such a part of him. When he smiles at me, with those blue eyes and beautiful face, I miss my dad. Those few times are glimpses into the happy, Happy man that he was. And happy for Happy was a deliberate choice. He was filled with natural optimism and glee, but he just refused to be anything but happy, no matter what the situation. And I love him for that, and I embrace that lesson from him, but oh, how fast the tears come, though I’m smiling through them, when he smiles at me. Then I hug him, and kiss him.

The meal is always a variable, too. Today, he was drinking okay by himself from a normal cup. I keep meaning to take a milkshake to ascertain whether or not he can still drink out of a straw, in case it comes to that. Because more and more he is having trouble with the mechanics, and the brain command to DO the mechanics, of eating and drinking. Sometimes, he forgets in mid meal after he was just doing decently. Often while drinking, once the glass is half empty (yes, yes I know Hap would say half-full) he holds it to his lips but can’t get any. I have to remind him, tip your head back, dad… and so far, that helps and he is able to get the rest out. As for the solids, well, it’s a mess. He probably can’t really use both hands with a knife and fork, so he uses one hand or the other and a fork or spoon to feed himself. Today, he began with his jello (that’s another thing I refuse to correct – I am gonna let that man eat dessert first!) and yes, it is messy. They usually put a giant sized bib on all the residents, which early on seemed so wrong for my dad and he often didn’t use it, but his skills have deteriorated so it IS useful – but I don’t think he is any more aware of what it is or that someone placed it on him than he knows what day today is. Since he had used his spoon with the jello, he dug in to the green beans with it next. That didn’t work as well, so I suggested the fork. But until I replaced the spoon with the fork in his hand myself, he did not make the change. And so, it is messy, but I don’t help him unless he physically will not feed himself. I figure, the longer he can do something, we should encourage him to do it, if for no other reason than to give him something to do in a long, long day of sameness. But again – that’s me talking. His day may seem full and exhausting to him, and in fact I don’t think his day is a day at all. I think he cycles in about three hour increments. There are days he is fabulous at lunch and terrible at dinner, and days that mom comes home saddened because he seemed so bad at lunch, but when I go for dinner he is a new man. Such is this disease – whatever it is.

Now that my dad is more ill, and he is safe and cared for, and my mom is doing decently and is healthy, I have the luxury of feeling like these are not the worst of times. That enables me to have the best hour of the day with my dad, too. While he may be concentrating on his green beans, I can be nostalgic and remember who he was. And while, of course, I didn’t love him enough or thank him enough when I should have, I can now sing to him, songs I know he used to like, like Donna Wells “Happiest Girl in the Whole USA” or “I Never Promised You a Rose Garden” by Lynn Anderson, or old country classics or folk songs. He liked “Green Green Grass of Home” and “Honey,” and Kenny Rogers songs. I can rub his shoulders while I talk to him, and if I have time for a real treat, I massage his arms and legs with moisturizer. Listen, I’m no saint – I put gloves on first, for his protection as well as mine. We don’t need to exchange germs and bacteria any more than we are anyway, and okay I admit it…I still get grossed out by bodies. But that is okay… because I know, no matter what level of sanity someone is at, it just feels damn good to have someone massage your arms, leg muscles, neck. I know why I love manicures and pedicures, and it’s not just because of the pretty polish.

I recently saw Amy Grant on tv, discussing caring for her elderly parents. Her mother had recently died after having dementia, and her father has it now. She was distraught that this was what the final chapter was like for two faithful servants like her parents, but she said that she was very moved by what a friend told her: this is the last great lesson your parents will teach you. Amy decided that if this was what her parents were teaching her, she damned well better be all in and learn it. While the choice is not a conscious one of my dad’s, God works in mysterious ways and I know that I am learning about myself, my husband, my family, and every individual I come across during this experience. Part of the best hour of the day is being forced to sit there and really not think of or care about anything but reflecting on my dad, on the life he gave us, on the relationship that we had… of all that he gave up, joys he experienced, how he has suffered. How much I owe to him. How unique and wonderful he is. How blessed I am that this hurts so bad, that I have nothing but good memories and that’s why this is so devastating. What a gift to be 43 and just now to have lost my dad, and what a gift to be so torn up about it. Some people don’t talk to their parents. Some people live far away from them. Some people are always fighting. I am devastated to lose my dad this particular way, but I am so blessed and grateful that it IS this painful, simply because of what that says about all that came before. Sometimes I wonder if my dad’s prayers are being answered. If he prayed his whole life for my mom to be healthy and live a long life, for his children to be healthy and prosperous, and for God to give him the suffering instead. I would not doubt it.

I know that the angels who take care of my dad (well first of all, I do know that they are not all, and not always, angels) do not know him at all. They don’t know that he was much more fun, kinder, more generous and loving than the person they take care of in the bed next to his or the room across the hall. All I’ve got is our example to show these people how remarkable he was. Do I love that every single nursing home and hospital so far has brought us people who sought us out, saying things like “wow, you girls and your mom sure do love your dad!” Hell yes. I’m proud that people notice, and I am sure that is part of my sisters’ motivation too. Not as in we want people to see us visiting so we get ‘credit’ – no, not that at all. Rather, it is what he truly deserves, and he also deserves to have people see it and know it – THIS is what love looks like when you have been such a wonderful father. Learn from him, people. This is a man we will never leave, never forget, never cease to thank and love and blanket with affection to show the world how special and superior he was. Everyone thinks this of their loved one, or most, I am sure. But, sorry – we are here to show you different, more. Hap Harral was in a league of his own.

Feb22

Loobies.

Posted on February 22, 2021 by marybrat

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Just found this in an old file of my own. A school assignment, maybe a prose poem. Wow. Takes me back.

Mary Beth Tweardy

February 21, 2013

Lewy Bodies

He sure does like his coffee, the blacker the better. A fresh pot in the afternoons at his office, adding more dark grounds to the damp mound in the filter. There goes that bug, shirking behind the file cabinet. So many files. He knows that page is here, but not what folder it’s in. Paper cuts burn every time he washes his hands. He washes often because occasionally he can see a tiny mouse skittering away when he snaps the light-switch in the morning. Lunch is always out: Alfonso’s, where the waitress knows his favorites. Lately, the pasta is sticky. He never preferred thinner noodles and this is why. The ends become gummy, clumps of sauce and cheese but who can tell what he’s eating anymore or what file it is in. He can’t wash his hands when it feels like his gloves are on, but at least he can shift the stick in the Subaru which sits, stalled. Since the pasta isn’t as good anymore, he eats cauliflower, the steamed head yielding to the fork’s tremors. They pour a non-dairy creamer pod in his coffee, and he shoots it like Drambuie. Someone asks about pudding? Or marshmallows? So he gropes for a file – found it! “Pillow,” he answers.

Jan11

I really have no idea why you’d read what I have to say.

Posted on January 11, 2019 by marybrat

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Kerrygold’s Dubliner cheese is one of several reasons I have not been able to commit to being a vegetarian. Seriously unsure I could live without a bit of it from time to time. Other than that cheese and some other isolated dairy purchases (ice cream), I try to buy organic sustainable happy cow milk products when I have to. But dairy is not inflammatory to me, and all I use is a plop of milk in my coffee and some organic plain yogurt for probiotics and calcium. Cuz no, despite my advanced age I’m still not taking calcium supplements.

I am an animal lover and advocate and yes obviously I abhor factory farmed meat. But I also run quite low on iron and after years of experimenting with diets (for weight loss, but also vegan, vegetarian, pescatarian, dairy-free, gluten-free, etc…) I just know what my body likes to run at its best. And it involves small amounts of meat a couple of times a week. So I pay through the nose for allegedly sustainably-procured animal protein. Which means our Thanksgiving turkeys are about 75 bucks. But I feel better.

On the subject of food, one of the bright spots of my week was knowing that my great-niece, quite new to food at only 6 months old, zealously enjoyed the organic, washed, steamed, pureed, stored in bpa-free-containers sweet potatoes I made for her. She will grow up and grow old never knowing that as an infant, Mamie took such joy in a few hours of steaming vegetables and spooning them into serving-sized trays. But Mamie knows. Somehow when I blinked, turning away for a moment from giving hugs and love to my niece, she grew up and had a baby. So now I have this teeny, tiny hand in nurturing the baby of the first baby I ever loved.

To segue into babies that I love, Peepers is still alive and more than half-well, after convincing me he wasn’t going to make the new year. I won’t bore you with details–well, I actually WILL, probably, at some point–but for now he’s acting close to normal for a cat his age. Which is an adjustment for me, because three months ago he was acting like a cat less than half of his age. But as I type this, I hear the news that the only other remaining sibling in his litter was put to sleep this week for kidney failure. So at their age (15) and of unknown parentage (they don’t know who their daddy was, surely he was a drinking, smoking, philandering diabetic cat with no job) I guess it’s time to acknowledge his frailty. Interestingly, Peepers was the runt of his litter, and that’s the reason I ultimately kept him. Which involved a bit of a tiff, because he had been promised to a friend of a friend. But after keeping the litter long enough to safely vet and re-home them, I decided to offer that girl another cat because I couldn’t part with the Peeps. She didn’t want another cat, and Peepers stayed. I’ve never had a cat before him, only dogs, so I was rather vigilant with his health because everything was new to me. Like his parents, he received overpriced propaganda food, so maybe that helped keep him in optimal health for his genetics up until recent events. Aging takes its toll. But the last remaining sibling who passed this week had been the most robust of the litter, large, confident, the ringleader. And female. So the strongest and the weakest survived this life the longest. And the runt is the last of the red-hot lovers!

I’d still love to eke out more time with Peeps. I’ve always said I hoped to get him past age 20. Can diet and supplements and occasional fluids keep him in a good life for awhile? Time will tell. The vet knows that it’s not my plan to keep him alive if he’s ever suffering. And we’ve all put pets down before and know how this goes. But I was unprepared to find out how different cats are than dogs. For example, in conversations with friends I volunteered with at the cat shelter, and other cat owners, it seems this sub-cutaneous fluids thing and appetite stimulation is a common thing with cats. So God apparently made an animal that will curl up behind a chair, filing its nails in boredom, and say, “nah, that food isn’t what I want, and plus it’s all the way across the room, so I will instead just die here.”

He’s here with me, curled up on the bed in the spare bedroom while I type. I’m exhausted emotionally from all the self-talk of being willing to let him go, but also listening to more experienced cat people tell me this ain’t (yet) that tragic and he may have some good life left in him. I never thought of myself as impatient, but his improvement (behavior-wise, like wanting to jump on the refrigerator or drink out of every sink in the house) is slow in coming. And maybe it will come, maybe it won’t. It’s the not knowing, the being patient, that apparently keeps me stressed. I’m not a stressy person. And I’m still in denial that this situation caused my hives or my recent illness. I’m pretty sure a dad with dementia was more stressful than this, but no hives then.

And I tread lightly in saying this, because it’s ridiculous to compare my cat to a sick child, but all I’ve been able to think of since this started, since I wake up every day and first check on where he is and how he feels before I can proceed with my day, is how the hell do people with chronically ill family members survive? How do they go to work if their sick child is having a bad day, a seriously bad day with pain and suffering and dire consequences? And not even how do they GO to work, but how do they un-preoccupy their mind enough to even drive to work? To put a bite of food in their mouth? To brush their teeth?

A sick pet for a couple of months and I ate like a trash can and stopped flossing. Like there was no room in my psyche for mundane details while this was going on. So I’m not saying it’s even close–I’m saying that from now on I pray fervently for people going through worse. Who still have to cook and work and carpool and pay bills.

Now let’s talk about joy. I keep hearing this new year about how to purge the clutter from your home by touching items and seeing if they “spark joy” in your heart, and if not…it’s file 13. I like it! It has helped me. I keep things I don’t love, often, because I love the person who gave them to me. But that’s stupid. Because most of the time, unless it’s a memento like a piece of jewelry, ain’t nobody gonna remember the sweater they bought you or notice if they’ve seen you wear it, and they certainly aren’t going to go through the closet to see if you kept it. So I’m going with it! Except I will keep the traffic-cone orange hooded rain jacket my husband bought me, because it’s simply so ugly that it has become a story. And that does give me joy.

My car gives me joy, and today I had to take her to the dealer for a blinker to be fixed. (Yes, I know this is a small chore some people take care of themselves, and in fact I’m pretty sure one of my sisters has done this for herself on her car. But this is me we’re talking about. But before you judge, I DID take the back off of my dryer a couple years ago to be sure it wasn’t just a blown fuse before I purchased a new one.) When I have to take my car in, it’s always a scramble because my car is basically an apartment. Today’s efforts to tidy up were actually not that taxing, mostly because it’s winter. So I had to move someone’s Christmas gift (thought I’d see her over the holidays and still haven’t) to the trunk, move the bottle of champagne I keep hearing rolling around the floor in the back to the front passenger seat, ditch bank deposit slips in the trash (because, do I really want them to see the size of my deposits? Some people may think this would incite theft or bitterness because a person has huge bank accounts. But seeing the $50 deposit for teaching two yoga classes at an adult day-hab facility may actually spark pity, and I don’t want that.) Come to think of it, maybe they saw one today by accident, because when it came time to check out, the service manager told me she wasn’t charging me because it took a little longer than expected.

This month was my book club meeting, and I have to confess I read that book in the eleventh hour because I assumed it would annoy me. Late to the bandwagon, I may actually cop to being a fan of Rachel Hollis (Girl, Wash Your Face, among other successes.) A good friend was reading/listening to the book on Audible, and she was a bit irritated by Ms. Hollis’ vocal quality, which is EXACTLY the kind of thing that I’m easily annoyed by (if you know me, you know which local weather chick drives me nuts with her affect!)…so, I promptly went to my cable television remote, having recently discovered I could say “YouTube!” into and watch videos on my television…and watched a few interviews with Rachel Hollis. And I was not irritated. I can absolutely see where the annoyance would occur, but it didn’t work on me. She just seems too sincere to me for it to matter. Plus, she said a few things on a podcast which seemed to be directed right at me. So, I’m on that bandwagon for now. I’m not part of her “tribe,” all the rage, that buzzword…and I don’t feel like we have much in common, because she’s pretty much the antithesis of me. But I like her. Which makes this all the more serendipitous.

Speaking of speaking into my remote, I found myself this week on the couch, under a blanket, with a spoon in my jar of homemade peanut butter…watching power yoga on YouTube.

Other bright spots in my week:

Seeing a guy on a riding lawnmower drive out to get his mail, on a not-very-long driveway. I decided maybe he had a busted hip. Or a hangnail.

Walking out to get the mail myself on a different day, between black-as-night hailstorms, and noticing the warm sun…saying to myself, “but another storm is coming,” (having been told that by my iPhone) and then replying to myself, “No. Just notice the sun. Full stop.”

Realizing I’m definitely like a grandmother (and, in fact, AM a grandmother) because I have two pairs of pajamas that stay in the drawer unless I’m traveling. To “keep them nice.” Too much stuff, yes, but having decent pajamas when traveling does “spark my joy,” so they made the cut. The rest of my pj’s are bleached, ripped, stretched pants, often flannel, or having cats (my best friend swore years ago to keep me in line by allowing cats on only socks and pajamas, not real clothes) or shoes or wine patterns, and worn with old shirts whose sleeves have been cut off carelessly. Why? Because my annoying ample bosom makes sleeves feel restrictive for me. Like when I reach my arm for something, I feel like the whole shirt tightens and my neck feels choked. This is the same reason I can’t practice yoga in any sleeves. It’s not because I think my arms are sexy. So now you know.

Speaking of acting like a grandma, I ran into a grade-school friend, the boy–because we were the same height–who was my boy/girl line up partner from Kindergarten to First Communion to 8th grade graduation at St. Bartholomew. I ended up in line BEHIND him for a change, at the CVS. Where I was buying cat food. And ice cream. I’m not making this up. It was Ben & Jerry’s Cherry Garcia. And gravy-lovers chicken feast.

I will probably never blog to list things that were UN-bright spots of my week, but finding out after two decades that my husband eats a Klondike bar with a plate and a spoon was unwelcome information. It might have even been a fork. I couldn’t watch, so I’m not sure. But I forgave him, because he also wordlessly handed me the very last dregs of the leftover mashed potatoes before putting the bowl in the sink. Oh no, I’m sorry–NEXT to the sink, because he apparently thinks it looks better to have dirty dishes on the counter than in the sink.

Hey, follow Lin-Manuel Miranda on Twitter. I don’t think you’ll be sorry.

Sep25

Beam Me Up

Posted on September 25, 2015 by marybrat

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“Beam me up…

Gimme a minute

I don’t know what I’d say in it…

I’d probably just stare, happy just to be there

Holding your face.

Beam me up…

Let me be lighter, I’m tired of being a fighter

I think…

A minute’s enough

Just beam me up.”

She fell in love with the song from Pink’s “The Truth About Love” album as soon as she heard it. The dramatic instrumentation, the tender, heartfelt vocal, the melody soft but strong with those minor keys of angst, building the feeling. She shared Pink’s song and the lyrics with plenty of people, because the song reminded her of profound losses: her sister’s baby, eventually her own father (…in my head I see your baby blues.)

The only detail that didn’t sit well in a song so perfect it always drew a tear and required a replay was the part about a minute being enough. What is that about? How could a minute be enough when you long for and miss someone so desperately, and then you get to be “beamed up” to see them again? A minute could never be enough.

Her dad is in her dreams, sometimes. Fairly regularly, in fact, but never the focus. His presence there is purely incidental: it is a holiday at home, so of course he is in the family room in his chair, or outside with the grandkids. She hears his voice in reply to someone’s question, catches a glimpse of him from the corner of her eye smoothing back his shock of white hair the way he always did. He’s there, as he should be, but in the dreams she is always conscious of the looming dementia. In the dramatic irony of a dream, she knows about the dementia because it has come and gone. She knows everything about it, about what’s coming, but he does not. She awakens troubled and anxious, vestiges of her sleep-self worrying that he is still driving but losing his sense of direction, still talking but sometimes seeing things. She’s afraid he will mention a puppy under the table or a bug skittering in the corner. In the dreams, she’s stressed, holding it all together and not sure what to do. But some part of her consciousness always knows it is a dream, because she knows how all of this ends. She simply can’t stop it this time, any more than she could in real life. The dream isn’t about him, so it doesn’t matter. She’s just dreaming, and he is there. Just like the pets and the kids and the occasional former co-worker or high-school classmate. Like intricate puzzles put together with a few of the wrong pieces, forced in awkwardly, dreams are.

One September night, still warm enough to sleep with the bedroom window open for the sleek purring body of her black cat to somehow relax into the tracks of the frame, she understood what it meant to be beamed up.

She dreamed, and this time it was just her and her dad. There was no context, no preface. They stood outside in the darkness facing each other, as suddenly as if they had both been dropped there like a slide from an old projector. Outside of what or where, she didn’t know, couldn’t tell. A place, a building maybe? They were a mere few strides apart, facing each other in the almost-blackness. In a fraction of a second she understood that this dream was different: he had already died, and he knew it. The dementia had come and gone again, and he knew it. And he knew that she knew it all. Revelation was instantaneous. They rushed to approach each other with arms open, no time to waste. He wore a shirt she didn’t recognize, the only thing that wasn’t familiar to her. They hugged, and her dad was once again the right size; the right height, a bit shorter than his youngest daughter in adulthood (he had introduced her around the dementia ward as “the tall one”) so her face was over his shoulder at the crook of his neck, the right density. His back and shoulders were smooth and strong and bullish, the way their dad had always been. Robust, immovable in a hug. He smelled like dad, the cloud of soap and toothpaste and shaving cream that had always breezed behind him as he rushed down the stairs, the last one to shower in a houseful of females. Somehow she could even see his tan in the darkness, sense rather than see the glossy blue-against-white of his mischievous eyes. They hugged strongly—tightly, but not hard, he was so staunch and she gripped the muscles of his back for emphasis. She knew this would be brief, and she rushed her tearful, joyful words, “oh, we love you and miss you so much!” And because she had always joked with him, added, “we don’t want to, but we do!”

He chuckled, still in the hug, unable to see each other’s faces except in mind’s eye, and said, “I know.”

Then they pulled back, still linking forearms but facing each other in this unnamed night-place. His smile was perfect, lighting up his face in its familiar jocularity, and he said to her, with just a trace of disbelief and humility, “I really love it here.”

Her heart spilled over to hear those words. She had already believed he was in a better place, THE better place, and it was what he had believed too. But to see him, feel him, smell him, and recognize the same wonder in his voice that she had heard him use in the past to describe a mountain, or a golf shot, or a talented child, or a great meal, convinced her down to her soul. She grabbed him again, sliding her arms around his shoulders and squeezing his meaty clavicles with her fingertips.

“I’m so glad,” she choked out near his ear. And she meant it. And she wanted him to know that she meant it. She was so happy for him, and she was desperate to impart the whole remaining family’s love and joy to him in what she inherently knew was a very brief opportunity. She squeezed him tighter, burying her face in him. He squeezed too.

She woke up.

Just like that, she was back in her bed at around three in the morning, her husband asleep next to her, her cat curled up and humming, the sounds of the night falling softly through the screen. The whole thing had taken no time at all. A hug, a few words. But now she could feel her dad in her arms. His voice and scent and warm, living skin lingered. She hadn’t hugged her dad that often when he was alive; she would be more inclined to chuck him on the shoulder, while he would have yanked a piece of her long hair from behind and then dodged her retaliation. She felt, for a moment, what she supposed could be called bliss.

The vestigial flavor of that dream lingers, and she deliberately goes inside her thoughts to enjoy it from time to time. She had her dad back, her real dad, tangible in her arms. And then one day, a couple of weeks later, her earbuds delivered that beloved Pink song while she was walking to one of her sister’s houses, to collect the mail or let out the dog, on a sunny, end-of-summer day. Now, it all made sense, and the lyrics didn’t leave her frustrated any more. A minute was all it took.

A minute was enough.

Apr23

“Walking on Water” Published in “The Mill” 2014 (Baldwin Wallace University)

Posted on April 23, 2014 by marybrat

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Walking On Water

In the summer of 2013, I was 44 years old. I feel like myself only in summer, the kind of person who is miserable for the long Cleveland months when the temperature is below, say, 64 degrees. Obviously, I live in an inhospitable climate. But during the summer months, I am alive. I carry spare shoes everywhere with me in my car to walk outside, I practice yoga in parks on tree stumps or bridges, and I don’t begrudge the ugly humidity that makes everyone look shiny and slimy, with dirty hair. I love and embrace it all. It’s easier for me, no doubt, because I am currently taking a break from employment to finally go to college full-time, so I don’t need to put on layers of spackle and hairspray, dress in a suit or Spanx, or worry about armpit stains on my blouse. I gladly parade my sweat as I walk with my ear-buds tightly placed, eating as many meals outside as possible and refusing to come indoors. These summer days, as hot and oppressive to some as the whoosh of air which accosts your face when you open an oven on Thanksgiving, are what I spend the rest of the year waiting for.

This past summer, however, my Polish/Irish/Lebanese fair-in-winter, olive-in-summer skin had barely seen the outdoors. It was the summer of Hap—that’s my dad’s name—again. Two years prior, it was also a summer of Hap, when my dad took a final rapid slide down into a well of a dementia marked by hallucinations, violence, and delusions. Since then, my mom and sisters, along with our husbands and children, had visited him daily in his residential nursing home—a nursing home made necessary by his physical strength and that of the aggressive delusions which plagued him; hallucinations of people harming us, his family, which left him no choice but to try to take down the aggressors. Our dad, our defender.

Over time, Hap grew weaker, physically and mentally, and then, the summer of Hap 2013 became about his final days. He had been hospitalized for a while with digestive issues which seem unresolvable at that point in his illness, and then he had been sent to hospice-care to transition through to death. My family members and I had seen nothing but the inside of his medical bedrooms for the better part of two months. In the end, we were grateful that his final time occurred in the summer, because his grandkids were home from school and around to visit him, and to spend time within the cocoon of the very last days we would all be together as a complete family, the finals weeks, days, hours, minutes with our beloved mentor and patriarch, our team captain.

The time was rich; irreverent, fruitful, angry, dark, food-filled, and emotional. We ate fistfuls of Honey-baked ham and packaged cookies to pass the time. We talked, recalling old memories…we sang (John Denver, poorly), we mocked each other. We chastised my dad, who was mostly unconscious and certainly unaware by this point, for keeping us cooped up all summer. We made funeral arrangements. One day in July, I slipped out into the sunshine to a waiting bench near a statue of Jesus, and I wrote out my dad’s eulogy in longhand, a speech I had been giving in my head for years, knowing always that it was incumbent upon me to try to do this remarkable man justice in words. A nun saw me from the window of my dad’s room and assumed I was sunbathing. I did not correct her. There was something perversely funny to me about tanning in the back of a Catholic institution meant for the dying.

After more than a week in hospice, I looked at my calendar one day at my dad’s bedside, and realized I had signed up for a stand-up paddleboard yoga experience on Lake Erie for the next day. I’m sure it had seemed like a grand idea at the time, a group decision with a couple of yoga friends. The daughter my dad had known would never have attempted this—I was not an athlete by any means, spending much of my life a little overweight and a lot under-exercised. I was not a strong swimmer, if you could call me a swimmer at all, and I don’t know if you could. I may or may not be able to keep my head above water and make some progress in a time of trouble on water, but I’m not certain the resulting action could accurately be labeled “swimming.” Yoga was the only exercise I did, and even that was the result of my recent search for peace during my dad’s illness, not any physical prowess. I also have a healthy fear of large bodies of water, and no confidence in my ability to perform this scheduled outing. It was decidedly out of my comfort zone.

I texted my yoga-friend Jenny, because the excursion had already been paid for, and I hoped that she could find someone to take my place and enjoy the experience. But as the day went on, I felt a nagging pull at my consciousness to consider leaving my dying father’s bedside for a few hours to do something completely out of the ordinary. I was scared, not only of being able to navigate the actual physical activity, but that after all of these days and nights spent in this room, my dad might slip away during the one time I was absent. To be truthful, I also feared the impression it would leave with others: my family, the nurses, the general “people” who would undoubtedly ask, “what kind of daughter would leave her dying father’s bedside to go play watersports on a summer evening?”

I think it was that final bit, though, that actually convinced me. My dad, a man of many unique and wonderful characteristics, was most known for walking his own path, no matter what anyone thought. He sold investments to wealthy clients wearing a Cleveland Indians tee-shirt (he was about to be buried in one, too). He drove goofy vehicles which had personality (most recently a cobalt-blue turbo-charged Subaru) no matter how luxurious a car he could actually afford, and he took his wife (our mother) on all of his business trips because he wanted her to see the world with him. If he knew that I was bailing out on something I’d committed to simply because I was afraid of how I would look to other people, he would shake his head at me. It began to occur to me that this activity could actually be a tribute to my dad, that he would get me through it and inspire me to appreciate the beauty and accomplishment and camaraderie of what I was about to undertake.

I had a talk first with Paula, the wonderful hospice nurse who had been taking care of my dad every weekday of his hospice stay. She was a friend by then, it being such an intense time for sharing family stories and feelings with intimate strangers. She also knew my dad, his physical condition, very well. It had started to deteriorate more rapidly, and we knew the end was nearer than it had been. I asked, “Paula, what should I do? If I have a thing to do tonight, do you think it’s okay for me to leave to do it? Or is he close?”

Paula (who by the way, my dad would have absolutely loved and would have probably nicknamed something like “Scrappy” because she was small but fierce), looked towards my dad’s bed, looked back at me, and repeated both actions. Then she said, “You know him. What would he tell you to do?” Well played, Paula. And right on. So, with the confidence born from the knowledge that nothing else can possibly even matter when you’re about to lose someone forever, I walked out of my dad’s room that evening, not knowing if I would see him again alive. Of course, as I grasped his hand and kissed him goodbye, I said (as I always did), “See ya tomorrow!” But I felt like something had changed. Something bigger was happening, and it almost felt as if my dad had already left that body.

Incidentally, one of the most valuable things about hospice for us was the way that it gave us our dad back, restored to his old self in a way. The dementia had been so grueling, and his perceptions and statements so out of character, that once he was debilitated enough that he could no longer speak, we were left with his beautiful blue eyes (for the first day or two, until he became semi-conscious at best) and the feeling that he had been delivered from dementia, and instead lay dying here as his former self, in his right mind. The hospice caregivers changed his bedding every day before we even arrived, shaved him, brushed his teeth, washed his hair, made him look like he was in his own bed at home, no longer hooked up to IV’s or tubes. So when I leaned over him that day, he smelled of shaving cream, toothpaste, and soap, just the way I remembered him. I carried that smell with me as I drove away, recalling how it would come down the stairs ahead of him on Sundays, when he was the last one ready as the rest of us waited to leave for church. A man with a wife and three daughters is last in line for a shower.

The day was one of the hottest that July, maybe in the nineties. Despite that, I drove to the lake with my windows and sunroof open, drinking in the moist heat and the dangerous feeling that I was somewhere I was not supposed to be. I felt fragile, and grateful that the friends I was about to meet for this excursion were not close friends yet. They were women around my age, with similar interests and problems, compassionate and supportive, but I knew they would not ask me questions, hug me too tightly or lingeringly, or ask if I was okay. They knew, probably better than I, what I was there for that day and the restorative power it might have over me. They had each already buried a parent. Their support was silent, but loud. The remaining participants were strangers. It was a welcome feeling to just be an anonymous body as we all schlepped the cumbersome paddleboards off of a trailer and toward the Great-Lake Erie. Only my two yoga friends knew that I was in a liminal space, “the one whose father is actively dying.” But we couldn’t concentrate on that: we had to worry about getting up, and then staying up, on the boards bobbing under us on the water inside the break wall of the lake.

Once we were all assembled and following the leader, I noticed bystanders watching from shore. Looking through their eyes, I realized that we looked fierce, like models on a women’s magazine, unaware of our ages and instead feeling like lithe, strong teenagers. We had on an assortment of swimsuits, board shorts, yoga clothes. No cell phones, no watches, just sweaty hair up in ponytails because all of us still wear it long (I heard somewhere that if a woman can remember Gerald Ford being President, she is too old to wear a ponytail). We attentively listened to Deanna, our instructor, who seemed to embody light: blonde hair, bronzed skin, with a strong and casual manner, competent. We were in good hands. We had already developed some confidence in our strength through yoga, these friends and I, but we were all shy about our abilities on this giant, often angry lake. There was little conversation, only concentration, bodies held at attention, and deliberate motion.

As we traveled up the shoreline, past indescribably unique and lovely homes and a bit away from the safety of the shore, Deanna led us through yoga poses. Yoga inherently employs “pratyahara,” the act of suspending the senses, of coming inside…so while there was a handful of us sprawled out some yards from each other, going through the same motions, we each practiced in isolation. I could feel my friends Jenny and Beth near me, all of us supporting each other with our presence, with our intention, and our breath, sending waves of friendship out from our hearts even as we were fighting hard to maintain various balances on a floating board. We generated immediate and copious sweat, which ran down not just our faces but our entire bodies, pooling in our bellies when we lay on our backs, making our hands slippery when we stood inverted in downward dog. We were ruddy, our ribcages heaving with exertion, slow, steady exertion. It was like being squeezed out, a sponge from a pail of water. Loose hairs frizzed around our faces or stuck to our temples. Any remnants of old mascara had long since smeared away.

I opened my eyes and squinted around me, the glare of the fiery evening sun slapping the dark glassy water, the sky so bright my friends were rendered just silhouettes to me. My eyes burned from the salty brine of sweat, wind, and emotion. It occurred to me that my dad was just such a silhouette now, too. I suddenly felt positively impervious to any attack, ten feet tall and bulletproof. I was aware of my upper arms and shoulders rippling in smooth strength as my paddle dipped into the water, pushing my hips forward, potent. I was as strong as I had ever been, as beautiful as I would ever be, and as capable as any other person on the planet. Without warning, I sensed my dad’s presence so strongly around me that I said aloud to my friends, “I know now that there is absolutely no place else on earth that I should be at this moment then here on this lake with you.”

I wondered if this sudden peace and feeling of connection with my dad meant that he was slipping away, even as I was gliding along in this moment of bliss. I contemplated what I would feel like if my dad took his last breath while I was on this lake, while my mom and sisters sat close and held his hands and spoke soft words to him. I knew in that moment that it would be perfectly correct if that’s the way it happened. My inner voice reminded me that I was the one who lived next door to my parents, I was the one who worked with them for fifteen years. Maybe it would be a wonderful gift to my sisters for them to finally have as much of a portion of my dad as I had always been so spoiled to have. If he passed away in my absence, I would not regret my decision to choose this spiritual experience of my dad on this lake.

At the end of our practice, as we drifted, lying on our backs on the paddleboards with the cinnamon-hot July sun setting behind us, I closed my eyes and felt buoyant in mind and spirit. This body of mine, this body of water, and this body of friends and family was stable and certain. This mighty lake may as well have been the very palm of my dad’s hand, and the deep, wide well of his heart. I relaxed. I thought of my dad’s broad, brown hands and how they had held me up on countless summer vacations, held me by my ribs in oceans and hotel pools, tossing and playing with his kids like toys. We were never afraid. He always caught us, held us aloft. He always would. The palm of my dad’s hand, the palm of our Father’s hand. More gargantuan and mighty than this lake, but tender, both.

Swirling, floating, feeling more accomplished than the accomplishment merited, I sensed rather than saw the sun melt low and hot into the horizon, and wondered without fear or anxiety if my dad’s light had just dipped below the surface of this life. I celebrated Savasana, the yoga pose of relaxation, drifting on a trembling sunset, feeling and tasting hot, wet salt on my face, sweat mixing with healing tears, as welcome as they were valuable, flowing unchecked. I never felt closer to my dad than at that moment; I’d never loved or appreciated him more.

Jan8

Hap, Hap, Happy.

Posted on January 8, 2013 by marybrat

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Today, when I visited my dad (Hap) in his nursing home, I had a bit of an epiphany. For the longest time it was just torture to visit him in such a place, but now while it still makes me cry as I am leaving, it is a more bittersweet feeling and today I think I realized why. Now that he is more “gone,” when he does have a good day (as he did yesterday, a good day being one in which he is sitting upright, his eyes are open, he is speaking intelligibly) I cannot help but smile to see his laugh, his sparkling blue eyes, catch just a glimpse of the man who used to be in there. More specifically, as I delighted in a few of his actions and comments, I realized that the sweet half of the bittersweet is that I now get to see my dad as if he were a toddler. What he does and how I react to it reminds me of how it was to be with the kids as they were first experiencing the world. When a child hears some background conversation not meant for him at all, and then supplies a completely apt response, we as adults laugh and clap and his cleverness. So it is with Hap. When a child gets a particularly bulky forkful of food to his mouth successfully, if laboriously, and then his face clearly shows his triumph, we delight in his accomplishment. So it is with Hap. I could see things dawning on him, or see him coming back to things and slowly registering what they meant – “oh, that’s the spoon…I’m going to try THAT for the fruit instead of the fork.” In children, we watch in rapt appreciation, knowing that the world is opening up for them, that they will learn each of these things one at a time and become smarter, stronger, faster, lose their childlike wonder and amazement. For my dad, he will instead learn and re-learn, but then hang on to less… the world is instead closing up for him. But to see the man whom I only knew as omniscient, omnipotent, full of strength and wit and wisdom as if he were the child-Hap I never knew is still a beautiful opportunity to appreciate his frailty, the frailty which we all share as human beings. Before he was my dad, man of the house, ruler of our little kingdom, he was a tiny, helpless child, an athletic, stocky, stubborn, willful little boy-sponge soaking up all that life had to show him. And, lucky for all of us who knew him in adulthood, he really did soak it all in and celebrate it. So, I celebrate this time with him now, too. He has the attention span of an 18-month old, but that was cute on the kids and so it’s cute on him, too. He wears it well, because even though he spills food on his front and becomes frustrated like those children did, he also erupts into a chuckle when he thinks of something that he thinks is clever. Often he will say something nonsensical, although now it is interspersed with the familiar adult Hap-speak. His first comment to me yesterday was, “typical Florida real estate!” and then he went on to reasonably explain some transaction that he thought went wrong. In the next breath he mentioned the Carolinas, another favorite place of his, and then he pointed to the empty space in front of us and said, “didja see that guy? He almost kicked him in the nose!” and he smiled and shook his head. So, it looked like my smiling, joking daddy, but it was a child as well. That brings tears to my eyes, but they aren’t tears of agony anymore, they are tears of bittersweet joy. It’s bitter, yes, but it is so sweet to see him as this child. I snapped a photo of him with my iPhone and said, “I’m just gonna send this to mom…” he shook his head and chuckled, and said (in a typical Hap move, mocking in his tone, embodying his old philosophy of “old age and treachery will overcome youth and skill”) “wouldn’t it just be easier to take it down the hall and show her?” That comforted me, because it made me feel (right or wrong, I’ll take it) as if when we are not in the room with him, he still feels like we all still live together in this “home” and when we visit, it’s as if we just came into the room again. The television was on in the lunch room with the other residents, and “The Young and Restless” was playing. He thought soaps were ridiculous, of course. I said, referring to his next door neighbor of 45 years, “one of Eleanor’s stories is on.” He said, “I find them interesting.” If that’s not proof that he has lost his mind, I don’t know what is! Of course, I don’t believe he watches the soap, he barely glanced at it – and as I said, his attention span is no longer there for an entire storyline (even one that hasn’t changed in 25 years.) But what’s miraculous is that for a second, my real dad is there, choosing to be/speak/think positively about whatever subject is brought up. Later, in the hallway, his roommate Ed was trying to give us candy. Ed will take his dollar bills to the vending machine and buy gum and candy, walk around with it displayed on the table/seat of his walker, and try to share it. He’s very sweet. He leaves his money sitting there too, though, so it looks as if he is a walking candy counter. As he passed, and I declined his offer of chocolate, my dad reached toward him to get his attention, and out of the side of his mouth asked, “hey, do they sell cigarettes there?” My dad hasn’t smoked in 25 years, but he always said he missed it, and it is so very like his cocky, childish side to try and score smokes. How can that not be funny, sweet, and appreciated by me? Yeah, it sucks to see my brilliant dad this way. He is too young and strong and had way too much more to give to his grandchildren. No doubt about that. But now that I’ve realized how rare and beautiful this glimpse of Hap as a rambunctious child can be, I will drink in the bittersweet and be glad for every last minute of these visits, the worst best hour of my day.