Remember last month when I mentioned Design Crush was turning five and we were going to celebrate? Well we did!
Two weeks ago a great group of friends and supporters spent an evening at The Wedge chowing down on gourmet pizzas and libations, including a fresh-squeezed grapefruit margarita named The Crush just for the occasion.
Danielle (left) and Susan (right) of EngageOKC were my lovely sponsors/coordinators who put everything together. And did I mention it was 100+ degrees outside? And that it took place on a patio? Because yes and yes, so please ignore my hair.
My favorite local stationery shop, Chirps and Cheers, put together these fun goodie bags for everyone who came to celebrate. You guys, Black Pearl erasers. I didn’t even know such a thing existed!
Two of my favorite ladies in attendance, Erin of CooperHouse and Kate of Cookie and Kate. Erin and her husband, Tim, are my web developers and instrumental to any sort of success Design Crush has experienced. And Kate made the best mixed berry bundt cake with lemon cream cheese glaze as a celebratory dessert.
My family (well, the few who live in Oklahoma) even made an appearance. My stepdad Bill, my mom Cynthia, and the infamous Pete!
I really can’t say thank you enough to everyone who reads Design Crush, I don’t have the words. However, as a small act of gratitude I have ten goody bags that I’m giving away to the first ten commenters. Please leave a valid email address to be contacted.
I realize not everyone cares about what I’ve been going through as a caregiver to my step-grandfather. But with the crazy statistic that 65.7 million Americans care for a family member with a terminal illness, I thought I’d continue to share my journey with Pete and his Alzheimer’s with you. Previous posts here and here.
So here we are, six months later.
When I began taking care of my step-grandfather, Pete, I never thought it would go on for this long. We (me, my stepdad, and mom) are currently in the process of interviewing professional caregivers, both due to Pete’s deteriorating condition and my need to get back to my full-time job. I’m a graphic designer as well as a blogger, and while at first I was able to get work done during the day that’s no longer the case. I’m looking forward to the day when I can go back to being his advocate and not the bad guy.
Over the past three months Pete’s Alzheimer’s has progressed considerably, as we knew it most likely would. He essentially has no ability to make decisions, even simple ones like what he’d like to drink or eat. The repetitiveness that was already excessive has quadrupled, I think his short-term memory times out around thirty seconds which can be difficult for us to remember ourselves. It’s so easy to take such things for granted. One major change is Pete’s ability to become angry. He’s always been a very laid back guy, but now gets agitated and occasionally raises his voice. I know it’s the disease talking, but I’d be lying if I said it didn’t hurt to be on the receiving end of. His appetite, which has always been robust, has gradually begun to wan and his voracious newspaper reading has lessened as well. He’s also speaking much less often and has a tough time carrying on even the smallest of conversations. This most likely has to do with his shrinking vocabulary, he’s embarrassed at using the wrong words which elude him frequently. He also nods off much more often (granted, he is 88) and stares off into his own world for sizable parts of the day. Sometimes when he wakes up he has no idea where he is, or where he slept the night before. All of it breaks my heart, but I can’t even begin to imagine how terrifying it must be for him living inside that mind.
A few months ago we did start looking at nursing homes, where he will eventually end up living out his days. Lucky for us there’s a fantastic place only a few miles from my house that caters specifically to Alzheimer’s patients. I visited first, them took my stepdad, and my mom will check it out soon as well. The administration and staff are incredible, the coordinator herself having lived through the disease with her own mother-in-law.
Because I’ve been writing these post in three month intervals, it’s scary to think what might happen between now and the next one. The man I help to take care of day in and day out is now a stranger most days. I cherish the small lucid moments he experiences when he gives me a hug and says just how much he loves me.
Breakfasts of Noosa yoghurt, uncooked oatmeal, and blueberries.
So many hazy hot days.
Plenty of hydrangeas stolen from my mom’s yard.
Lazy days spent with these two.
Fostered this little guy – Snoopy – for three weeks. He goes to his forever home today. Sniff.
Discovered the simple awesomeness of avocado toast.
Paid too much for delicious Rainier cherries!
Started my first ever garden.
Decorated with some eucalyptus.
Created my own golden menagerie.
Started reading Steve Jobs by Walter Isaacson and could barely put it down.
Planted a kitchen window herb garden.
Bought pretty flowers for my mom on Mother’s Day.
Created some DIY neon color blocked planters for my herbs. (Similar to these.)
Accidentally did some nail art with gold spray paint.
Reacquainted myself with Banana Bread Beer.
Dined at OKC’s newest hot spot – Flint.
Did a little rearranging in the house.
Bathed Piper. Several times, much to her chagrin.
Took advantage of some blooms.
Blindsided, gutted, and numb. All of it. The Beastie Boys have been a part of my life for just about as long as I can remember. Adrock, MCA, and Mike D were common names amongst all of my friends and their music always a safe bet when no one could agree on a station. As a trio they seemed unstoppable, always progressing their style of rhyme instead of growing stagnant and fading away. And now after today, and the much too early death of Adam Yauch (aka MCA) at age 47 from cancer, they’ll be no more. This isn’t one of those cases where someone can just jump in and fill his empty spot in the group. They were too much like brothers for that. Too connected, too in sync.
I have so many great memories associated with the Beasties. The long summer afternoons spent in my friend Rachael’s tiny bedroom with our friends Holly and Beth, dividing up the lyrics and singing over and over again. (I was Mike D, Rachael Adrock, Holly MCA, and Beth the DJs.) The concert I went to in Cleveland the night before I left for my freshman year of college. And another I went to four years later with friends from a new chapter of life. I think there was a solid decade where you could walk into my bedroom and find one of their posters on the wall. They were a major part of my life as I was figuring out who I was, not only musically but fundamentally.
So I guess what I came to say is thanks, Adam. You, your beliefs, and your causes won’t be soon forgotten. Rest in peace.
I realize not everyone is going to care about what I’ve been going through as a caregiver. But with the crazy statistic that 65.7 million Americans care for a family member with a terminal illness, I thought I’d continue to share my journey with Pete with you.
It seems as though Pete’s reached the late-intermediate stage of Alzheimer’s, there is no set time table with the disease just a person-by-person pace. He easily fixates on things for long periods of time, particularly anything of extreme size or quantity. Think car dealerships, skyscrapers, etc. A big source of anxiety is the idea of something he needs running out, so several of everything are kept on hand at all times. Soap, paper towels, and the like. Date and time are both obsessions, as are fidgeting with his watch which he changes the settings on several times a day.
Pete still gets great joy out of reading the daily newspaper cover to cover (sometimes several times in the same day) and walking outside, so we take full advantage of both. I try to stick to his daily routines as much as possible because he’s easily thrown off, something as simple as the Girl Scouts coming around to sell cookies will leave him asking a million questions hours after the event.
As we’ve moved deeper into the disease more symptoms are revealing themselves. Pete’s begun to forget everyday words and will replace them in conversation with one of the completely wrong meaning. At times no words at all want to form and what comes out sounds more like a child learning to speak. Jibber jabber. His balance is beginning to fail him as well, and a few weeks ago he took a tumble while showering (luckily he was uninjured). Walking has slowed down and it takes a few tries to get up from a sitting position, both make his habit of wandering around more dangerous and me more hawk-like. But he still eats like a champ! More like a teenage boy actually, the other day he housed six slices of pizza for dinner.
A recent development is what I like to call the True/False Game, where he has a thought so set in him mind that he believes it no matter what. Like one of the indoor cats getting outside last week, even though they were both napping under a bed. Another high point of his days is Piper, I bring her with me Monday through Friday and he can’t get enough. Things about her are actually some of the only new information he remembers, so I’m grateful for any sort of joy she brings into his life. And they have such an amazing bond that it has me wondering whether she might make a good therapy dog to bring happiness to others.
One thing I never stopped to think about when I became Pete’s daytime caregiver is what sort of effect it might have on me. As with all terminal illnesses, which Alzheimer’s ultimately is, there are good days and bad. And you take both in stride not knowing when the switch is going to flip the other way. In the past few weeks it’s been in the ‘bad’ direction more than the ‘good,’ and I feel ragged. My anxiety, which has always been on the high end of the spectrum, has skyrocketed. My will to do anything after going home has plummeted, and I don’t discount the fact that I might be slightly depressed. My solace lies in the fact that I’m most likely suffering more than Pete, simply because he doesn’t remember most things short term any longer. And I wouldn’t change that for anything.
Collected pear tree branches off of the side of the road.
Caught Roxy and Peanut like this and died.
Rediscovered honey sticks, a childhood favorite.
Was mesmerized at the peach tree blossoms at my mom and stepdad’s house.
Fell in love with cinnamon cardamom tea.
Celebrated my stepdad’s birthday. Piper, too.
Ate an orange nearly every day.
Experimented with color-blocking my nails.
Decided to test my black thumb with this bright kalanchoe.
Bought my first quart of strawberries of the year.
Piper got homemade treats in the mail from Capree and Wrigley.
Attended a dear college friend’s wedding.
You can follow me full-time on Instagram @designcrush
PHOTO: Pete Barringer In New Orleans, second from right
If you’ve been reading for the past few months then you know that I had to beg a few weeks off from Design Crush in late December and early January. To explain why I have to go back to before I was born.
I grew up living at one end of a row house, at the other end lived a lovely older couple named Pete and Betty Barringer. They quickly took our young family under their wing, Pete teaching me to hit a whiffle ball and Betty letting me play school with her. And soon enough enough they were just like an extra set of grandparents. In fact one year I made them come to my biological grandparents’ house with us for Thanksgiving! Then when I was 15 my parents’ marriage ended and my mom got engaged to their son, Bill. He was recently divorced as well and everything just clicked. So now my “extra” grandparents were becoming my step-grandparents. Not too bad of a deal.
This past December an existing health condition of Betty’s worsened drastically and very suddenly, she passed away January 1, 2012. But that’s only the half of it, because Pete has Alzheimer’s. After the funeral he had to move back to Oklahoma City with my mom and stepdad for the obvious reasons, and my days are now spent watching over him for the time being. He’s not so far a long as to be in a home, but he’s not able to remember enough to care for himself or be left alone either. We’re sort of in the in between right now, and it’s hard knowing it’s only going to get worse.
I won’t lie, some days are really tough. Especially the ones where he talks about going home and you have to explain that this is home now. But other than that there are some great times, too. I get to hear about his time spent as a soldier in World War II and so many other stories I never would have had the opportunity to know. We all really try to laugh, otherwise everyone might breakdown and cry. I know if the tables were turned he’d do the exact same thing for me in a heartbeat.
Have you ever had to take care of a relative when their health failed him? I’d love to hear any words of wisdom or advice you might have.