Letter to Dad

Dear Dad,
I miss you. Wait, more specifically, I miss the old you. I have to be perfectly honest, because that's what I do here, and say that I don't miss the "you" from this past two years. I don't even know that man. You wouldn't know him either. He was depressed and sad and confused and sick and I spoke to him like a child, because that's all I knew to do. I can't feel guilty about that because I did my best. I tried really, REALLY hard. I failed more often than not, but sometimes I reared up and advocated for you like nobody's business. That's what they call it when you complain on somebody's behalf - advocating. I had to do that more often than I'd like. I'm so sorry about that. But I can't fix that right now.

But back to the missing. I miss the old you. I miss the weird conversations we would have about stuff - TV, music, pop culture. I miss our sarcastic and cynical conversations about people on TV - people you hated and why you hated them. I missed arguing with you about TV shows. Gosh, we talked about TV a lot. I miss asking about your routine every day - the weirdness of the things you did with odd uniformity.

Mostly, I miss sharing things with you. Still today, when I do something new or meet someone unusual or see a movie, my first thought is: "I can't wait to tell Dad." And then I feel a little sad, because I can't do that anymore.

My kids miss you. They miss the weird, dark and twisted side of you, which is what they liked best. They miss having funny conversations with you or asking you to draw illustrations for album covers.

I guess what I'm saying is that you did a good job because there's a void in our hearts where you used to be. So, it's a good thing - evidence of a life well-lived if those left behind have an emptiness inside.

I have a lot of questions about what you're doing right now. That's for another time - a faith crisis put on hold. I hope your feet are up, you're enjoying a scotch on the rocks, some Wheat Thins and a big, fat book. You earned it.

Love you,
Karen

Remember man that you are dust....

"Karen, this is the funeral home calling. We wanted to let you know that your father's cremains are ready to be picked up." 

Wow, did this phone message blindside me. This death thing - I thought I was handling it fairly well. I was ready for it, welcomed it even. I wanted Dad to be at peace and not be trapped in what was left of his body.

But suddenly, it was all so final. We couldn't go back. Not that we could go back, ever. It's just that, he's now reduced to ashes - dust. "Remember man that you are dust and into dust you shall return." The furtive prayer we say every Ash Wednesday came roaring back into my head. But now, this was personal. This is my Dad. He's gone...forever.

And so I picked him up. Joked a bit about taking him for a ride. But I was bothered. I showed Mom the pretty cardboard box. She gave it a soft finger kiss and I placed it back in the back seat. Then I took it home. I took him home.

For a while, Dad's ashes sat on the kitchen table. Then, concerned that a mishap might happen when the cleaning lady was here, I tucked him away in the guest bedroom.

But now I'm bothered by this. I'm dreaming of it and not in a good way. I can't help but feel incredibly uncomfortable. I'm surprised that having my Dad's ashes in my house is so bothersome to me, but it is. I'm always honest here and that's why I continue to write.

His ashes will be scattered later this year and as the caregiver for Mom and Dad, I feel responsible to keep the ashes here. But I don't like it. I don't like it at all and I'm not at peace with it. I need to make peace with it so I can move on.

Farewell Dad - Goodnight My Angel

On January 8th, my father passed away at the age of 83. I've written a lot here about the trials and tribulations of elder care, but when it's over, you're only left with the memories. 

It's pretty hard to summarize him, his life and our relationship. So, I'll just share my eulogy with you. Rest in peace Dad. 

"A while ago, someone asked me what was the best advice my father ever gave me. I thought a minute, and then said: “Quit your bellyaching.” Although he gave advice, most of it was by example. He was a soft-spoken man who had lots of interests and a LOT of opinions. But he believed, very strongly, that no matter what life dishes out, there was no need to whine about it.

I was blessed with a Dad, who, although quiet, was larger than life to me. He loved nothing better than sharing the next big thing, or, as he called it, “the hot set-up,” with people he loved. When he found a new hobby or interest, he was passionate about it.

If he liked you, he’d call you about random things. Sometimes it was the Grammy Awards, sometimes it was a book he had read, sometimes it was to ask you to Google something for him.

I particularly loved when I would get an envelope in the mail with his familiar boxy/artist handwriting. There would be something in there – an article, something torn out of a magazine – something that made him think of me. And that was it. No mushy note wishing me well. I knew he did, all the time.

When I was in college, at Marquette, Dad would call me up and tell me to come home and visit, and so I would. The minute I walked in the door he would leave. At first I was offended, but then I eventually realized that nothing made him happier than having his family, tucked safely at home. Until the day he died, he was reminding us to get on the road, get home and then check to make sure all the doors were locked.

To say Dad was a creature of habit would be an understatement. When he found something he liked, or that worked, he did it to death. He loved certain foods, consumed at certain times and in certain ways. For example, He once gave me a tutorial on how to “properly” eat Rice Krispies. My family might remember when Dad declared he was going on “The Soup Diet.”

Every day, when he wasn’t at work, he’d wear the same “uniform” – jeans, loafers, scratchy wool socks (that he ordered from Wisconsin) and a sweatshirt. He rocked sweatshirts like nobody’s business – winter, spring, fall and summer. They suited his personality – comfortable, functional and available in so many colors.

Dad and I were always the early risers in the family. On Saturday mornings, the two of us would often venture out to hardware and auto supply stores far and wide. If I was lucky, our errand runs would end with a trip to a tamale stand by O’Hare, or, better yet, Superdawg. Hands-down, those are some of my favorite memories.

Growing up in Edgebrook, I had one of the coolest Dads in the neighborhood. Our garage door was always open, and there was usually a racecar raised up on jacks. There would either be a TV blaring or classical music playing. On the workbench, you’d often find a tumbler full of Scotch and perhaps a box of Wheat Thins nearby. From time to time, he’d start up the race car, which would sometimes attract the neighborhood boys. I wish I could say it helped my dating life, but alas, it did not. And yet, I was the only girl in the neighborhood who could work the pits and knew the intracies of replacing SCCA points. (Trust me, it’s complicated.) He also taught me how to perfect my jump shot and throw an awesome football spiral.

Dad provided well for us and, although he wasn’t a religious man, he was incredibly proud that he sent all of his kids to Catholic grade schools and high schools, a promise made on the altar, the day he and Mom married, 61 years ago.

He took us on lots of vacations, but not like other families. Our vacations were generally within distance of the nearest road racing course – in Wisconsin, northern Illinois, Michigan, Indianapolis or Ohio. My siblings and I spent summers as racing brats, helping to prep the race car for another race. A good day was when the engine was running well and we could go back to the hotel early to go swimming.

As a commercial artist, Dad had the ability to draw anything and everything. Family dinners at restaurants often ended with Dad flipping over the placemat and using it to illustrate a corner on a racetrack, an engine part or, later, silly and sometimes gory cartoons for the Grandkids. His sense of humor ran dark and twisted. He was witty, but to quote Dad: “Witty, yes. But the man who wrote Snow Bound was Whittier.” Look it up. It’s an actual book. These are the pieces of “mental lumber” that I carry around, thanks to Dad.

I always looked upon Dad as my career mentor. Since we both worked in marketing and advertising, I could call him anytime and ask for advice, or, better yet, the name of a supplier who could help me out and make me look like I actually knew what I was doing. When things weren’t going well at work, I could always count on Dad to give me his opinion – sometimes whether I liked it or not. He taught me, through example, that I should always be the first person in the office and, if possible, the last one to leave.

In our family, Dad was legendary for having little patience. He loved being early for everything (a trait which I inherited) but that also meant he liked being the first person to leave. At family gatherings, you knew things were winding down when you’d hear Dad utter his first “Let’s go” to Mom. It’s not that he didn’t want to be there, but he was always thinking ahead.

On one of my Dad’s birthdays, when my sister was about 5 years old, Dad decided that he wanted his gift to be taking my sister to the circus. My mom and I happily went along for the trip. It was all great until Dad figured out how long a circus lasts. The day ended with us convincing Jodi that intermission was actually the end of the circus. Poor Jodi. I hope one day she gets to see an entire circus. Dad also wanted to leave my daughter’s high school musical at intermission but I forced him to stay since her big song was in the second act.

Growing up, Dad always told me that our last name, Glasener, meant Dumpling Maker in German. He said that our name had been changed from the word “Gloersen.” When CB radios were big, his handle was Dumpling Maker and mine was Baby Dumpling. Then one day I was in Germany on a business trip. Over dinner with clients, I told them about my maiden name, to which one of them exclaimed: “Oh! Your maiden name is Knudel!” They told me they were not familiar with the “Gloersen” word. When I returned home, I called Dad out on his fabrication and he calmly responded: “It was a good story though wasn’t it?”

A year or so ago, I took Dad for a doctor’s appointment. The nurse was asking him some standard questions and then said: "I'm required to ask, do you have any history of abusing drugs?" Dad responded with: "Nope....except for the heroin."

In nicer weather, Dad loved sitting in back of his house across the street from here, reading books. But Dad was very private. So he made a fence – a 6’ tall wooden fence on wheels, that he could roll out and sit behind, thereby giving him a cozy retreat. Although he ended up breaking it down and throwing it out, he often joked about wanting to set it on fire and roll it down the street in flames.

The older grandkids have great memories of Grandpa Ken as well. Maria remembers when she broke her wrist, on her cast Dad wrote ""okular einzelnen steeling" which, in German, means individual eye focusing or eyepiece adjustment. We have no idea why.

Dan remembers doing a school report on Dad inventing Scrubbing Bubbles or when Dad drew him a picture of one of the Teenage Mutant Ninja Turtles – his favorite characters. It looked perfect, but he drew Leonardo with his arm lopped off, standing in a pool of his own blood.

Cullen remembered when Dad taught him archery in the backyard and created a target out of a cardboard box. Mom was mad because they kept shooting arrows at the fence around her garden.

In 2012, we were blessed to have Mom and Dad come to Wisconsin to live with us. Although it was an adjustment – probably more for Mom and Dad than anyone else - it was a time when Dad would share stories with us over dinner. He’d tell us about being in the rodeo as a teenager, the various horses he owned, being in the Army, hitching a ride with a newly married Mexican bride and groom and closing the car door on the wedding gown. I once asked Dad why he was stationed in Germany during the Korean war, to which he replied: "I'm no dummy. They were shooting people in Korea."

After these dinners at our house, while Dad was bargaining for seconds of one of Maria’s decadent desserts, Mom and I would be doing dishes and she’d turn to me and say: “That’s why I married him – because he was so interesting!”

I agree, Mom. Dad was a true renaissance man. He discovered Elvis Costello and Evita before they became pop culture standards. Although he never attended traditional college, he never stopped educating himself.

The fact that Dad was such an amazing father, husband and grandpa, despite the fact that his own father died when Dad was only five makes me even more proud of him. Mom recently told me that Dad wanted he and Mom to renew their wedding vows, but they never got around to it. Mom, I’m going to say that you renewed your vows every time you sat next to Dad’s bedside. It was the perfect demonstration of “for better for worse, in sickness and in health.” Thank you for that.

And thanks Dad, for everything."

At the end of the service, our daughter sang this song, accompanied by our son. It was the perfect send-off. 

State of Denial

It's been a while. I'd like to say I have so many thoughts and feelings about dealing with my parents, but honestly, I don't. I feel sort of numb, and I think that's partially because I don't want to think about it. I would rather hide my head in the sand than think about what's happening.

In the meantime, I still go every day. It's not for very long. Sometimes Dad falls asleep. Sometimes he's taken to the dining room for meals. Sometimes he's being changed and dressed. Sometimes, I just have to leave.

Leaving is hard. Mom and I practice NOT saying: "We have to go." For some reason, Dad takes that as a signal that he's leaving and he starts pushing his blankets aside to join us. That part is heartbreaking. I have to, somehow, placate him and explain that he needs to stay and that we'll be back tomorrow.

If I'm REALLY honest, I'd tell you that I try not to think about Dad and what he's doing when we're not there. I just can't go there. It's just too heartbreaking. Because I actually know that he just sits and stares. Based on the few comments that he makes to us, I'm guessing that he makes lists in his head about what he needs to do. The other day he said he had been to the hardware store, which is something he often did.

This week, we were offered the opportunity to move Dad to the Memory Care unit. I asked what was different about it and I was told that it was a smaller unit, so there would be more one-on-one care. On my walk-through, I noticed that there are no TVs in the rooms and residents all seemed to be gathered in the dining area for an activity. After talking it over with Mom, we agreed that Dad would HATE it there. Although his dementia has ramped up significantly, if he has any awareness of where he is, that is NOT where he'd want to be. He likes his solitude and I think he's happier sitting alone, staring, than he is in a group of wheelchair-bound patients, attending music therapy. But giving him his solitude means the possibility of him trying to get up and "take a walk" which, one day, might result in a serious injury. Thus far, it's a risk we're willing to take.

What scares me, looking forward, is that Dad might linger like this for a LONG time. Although weak and confused, his health is relatively stable. My guilt surrounding this possibility is almost overwhelming, so I choose not to confront it.

Meanwhile, we carry on.

Nightmares and Confessions

I think of new ideas for this blog all the time. Honestly, the inspiration is endless. When you care for an elder, you constantly run into issues that are challenging, frustrating and emotional - the holy trinity of inspiration for a blogger.

Today, though, something new occurred to me. You see, I've always described Dad's stay in a nursing home as HIS "worst nightmare." Today, I realized, it's also mine.

When I was a pre-teen, I somehow was given the opportunity to volunteer at a nursing home. At first, I was all gung-ho, thinking how sweet it would be to hang out with old people and do good deeds. (I was raised Catholic and doing good deeds was the best way to get into heaven. Bonus!) It was great until the first time I walked in the door. I instantly hated it. Of course, I couldn't run away, but it was awful. I probably went maybe three times and then worked very hard to never go again. The smell, the fluorescent lights, the old people, the overall depressing atmosphere was simply too much. I couldn't take it. Somehow, I feel like God was taking notes and said, at that point, "OK, you get a pass, but eventually, you'll have to go back."

My new routine is to visit Dad virtually every day. This was decided (by me) when Dad became aggressive and combative toward my Mom and sister (including dropping F-bombs.) I told Mom she shouldn't go alone, because Dad seems to think he can order her around. That's too upsetting for her. So I needed to step up and told her that I'd be there every day unless I absolutely couldn't.

Here's where I get honest: I hate it. I hate going. I dread going. I can't wait till each visit is over. It's for the same reasons that I had when I was a pre-teen, but somehow my maturity forces me to shut up and deal, as best as I can. It's not great.

The other day, Mom said something very true and very depressing. We were talking about not putting ourselves through guilt trips if we couldn't stay long when we visited. She said: "I know this is terrible to say, but your Dad might last a long, long time...." She didn't have to finish the sentence. Part of me "stepping up to the plate" and visiting every day was based on the premise that he might not be long for this world. The idea that he could linger for months, maybe years, felt daunting - so daunting that I simply couldn't think about it. I'm not sure I can do this for months or years. But I will, if necessary.

People sometimes tell me I'm a really good daughter. If you've been reading this blog, you know that's not really true. My intentions are suspect and perhaps more wrapped in self-interest than I care to admit. I continue to blog and be honest because it helps me vent and if there is one person out there who is struggling with this same journey, maybe this will make them feel better. Maybe I'm a better blogger than a daughter. Nah, probably not.

In any case, Mom and I will keep fighting the good fight, even if the fight is against our desire to never step foot in that nursing home again. Because honestly, if I could walk away, I would. A shameful confession, if there ever was one.

Every Day is a Bonus

The other day, my husband and I arrived too early at church. Long story, but 10:00 am mass didn't start till 10:30 am. So, we had some time. A few rows in front of us sat an elderly man. He was wearing a Polo shirt and on the back of it, right under the collar, it said: "Every day is a bonus." I recognized this as the motto of the Honor Flights which take war veterans to Washington DC to visit their memorials.

I thought of this motto and how it related to caring for my parents. Most of the time, if I were honest, my motto would be "Every day is a challenge." I tend to approach this journey in that way. It's about visiting Mom and Dad, getting Mom to appointments, hoping Dad is having a good day, trying to go about my regular day while shoe-horning elder care in.

But that motto made me stop and think. I'm very aware that our time with Mom and Dad is short. And like most people, I tend to feel like my family and I are immortal. If we're not facing a health crisis, I guess I'm arrogant enough to feel like we'll be around forever.

I'd like to say thinking about this motto has made me a better person. That's doubtful. I'm still whiny, irritable and probably too abrupt with my parents and my husband. But from time to time, I try to pause and think about what that means.

Every day IS a bonus, regardless of what we've been through. Most of us haven't faced war or life-threatening illnesses or personal tragedies. But as Katie Couric recently said: "We're all terminal." With that in mind, I need to go and adjust my attitude.

The Grim Uglies - View from the Back of the Tapestry

I haven't written in a while. Not because nothing is happening. Something is ALWAYS happening with Mom and Dad...or more specifically, Dad. He's incredibly unstable. It's a daily game of waiting for the other shoe to drop.

A few weeks ago, Dad was back in the hospital. He has orthostatic hypotension, which basically means when he gets up (or, I should really say, when the aides get him up), his blood pressure plummets. Often, this results in an "unresponsive episode." He doesn't fully pass out, but he's completely not there. Eyes open, little or no response. So creepy to witness. Well, this happened and it took them 30 minutes to get him to snap out of it. They sent him to the hospital where two things were determined: He was dehydrated and depressed. He was also losing weight...fast. He's down 30 pounds this summer.

After two days, he was released after getting lots of fluids, intravenously, and an anti-depressant prescription. (The nurse practitioner at the nursing home had "denied" an previously prescribed anti-depressant because of the orthostatic hypotension, but Dad's former primary doc stepped in and said that the depression was obviously a key factor in his decline.)

So now, he's back at the nursing home. He's quasi-stable, but I know that can change in a minute's notice. We were able to get out of town for 5 days last week and, thankfully, I didn't receive any calls. Now Dad

But I have to tell you, when I got home, I was down. Getting old isn't for sissies and taking care of the old isn't for babies. It's dark and dirty. I really didn't feel like getting back into it. I didn't want to walk into that place that often smells like pee. I didn't want to sit next to my Dad and have him say nothing, forcing me to fill the silence with idle chatter. (I LOATHE small talk.) I just didn't feel like taking care of anybody but me and my husband. But, that's no longer my choice. And here is where I tell you that I wish I could quit. I wish I could pass the baton and let somebody else deal with this. But I can't.

There's a son that is at the nursing home EVERY day with his father. The father appears to be post-stroke or something severely disabling. The son doesn't look great himself. He's probably my age but has a terrible hump in his back. Regardless, he's there, every day, I'm guessing all day. Perhaps he doesn't work because of the hump. But he humbles me, because I can tell that he's willing to get in there and get dirty and deal with the minutiae. He changes his dad and feeds him. I've gone as far as feeding, slightly, and shaving. I haven't done the changing, but not because I'm unwilling. It really doesn't gross me out. But I feel like it's a respect thing. I don't think "old Dad" would want me changing new Dad. It would be embarrassing for him. So I've drawn a line there. But across the hall, Don Ho (no, seriously, that's the son's name) is doing it all. Putting me, a little bit, to shame.

We're getting to the grim uglies. I never know what state Dad will be in when we get there. Shaven or unshaven. Changed or unchanged. In bed or in a wheelchair. Most days, I want to run. I don't want to be there. I don't want to sit and listen to his roommate's phlegmy snoring while digging deep in my middle-age brain to figure out what to talk about. It's hard. I will win zero humanitarian awards for what I do because I don't do it with the purest heart. I'm just being honest.

I'm looking into moving Dad to a, hopefully, better nursing home where his call light might be answered in less than 25 minutes and his room would be cleaner and he'd be shaved regularly and administration would stop making promises and apologies and do their damn jobs. I'm kind of pissed at life right now.

Last week, our niece got married. It was a beautiful event celebrating a wonderful couple. But I have to tell you that during the ceremony, when they talked about "for better or for worse, in sickness and in health," part of me wanted to shout: LOOK OUT FOR THE SICKNESS AND THE WORSE. But that's my juvenile, selfish perspective. I don't want my niece or her husband to ever have to deal with some of the things that have come my way. Nobody should have to deal with children with developmental disabilities or parents with no money and poor health. But some of us do and we get through. I'm not dying. I'm not even crying. I'm whining, but you expected that, right? Like I said, no gold stars for this self-absorbed girl.

When our son was born, severely disabled, my husband and I spoke to our parish priest. We were young and very confused and expected this "man of the cloth" to help make sense out of this tragedy. (I would NEVER do that today.) In any case, he told us that sometimes life is like a tapestry. The front of it, what we usually see, is very pretty and makes sense. But sometimes, we're stuck looking at the back of the tapestry which is confusing, unattractive and with lots of loose ends. It was the perfect thing to tell us. I'm reaching back for that metaphor right now.