Sharing our Journey: A Love Story
On evening, in late 2012, Paula tearfully confided in me that she felt like she was losing her memory…saying “I go into a room and I don’t remember why I’m there, or what I’m there for”. I was like, hey we all do that - at work we call it CRS (short for can’t remember umm, stuff)! She went on to say that she was afraid that she was getting Alzheimer’s. Trying to lighten the mood, I joked that if she did get Alzheimer’s she wouldn’t know it or wouldn’t remember that she had it! She said “But what about you? What if I don’t remember you?” For a moment, I was speechless, but then I reached over and gave her a big hug, and told her it would be OK. I didn’t really give it much thought after that, not realizing that something serious was going on. Months later I would realize that this day marked the beginning of our journey. In May of 2013, she came to me with an onion in one hand and a knife in the other, and asked me “How do you cut an onion?” I showed her, and then at my urging, she called her Dr. and got an appointment.
When you have CRS like I do, you write everything down, and develop a “strike while the iron is hot” mentality, so you can capture things while all the synapses are firing correctly. So the weekend before the appointment, I said to her “Why don’t you write down a list of symptoms and a few anecdotes so we can really take advantage of this appointment”? I mention that want her to tell the doctor the “onion” story, but she goes me one better when, as we were making up the list, she told me that she had forgotten how to make a cushion. Now, Paula had been a seamstress for virtually her entire adult life, making drapes, window treatments, slipcovers, and cushions; she had literally made thousands of them. She went on to say that she eventually figured it out and made the cushion, but this scared her (and me). We got in to see her Dr. in July 2013 and we both felt better after we left there, the doctor’s positive attitude affecting us both, until we called the memory specialist and found out that they were booking appointments in mid-September. I wanted to scream. But I didn’t. Scream that is. Not outwardly.
What I did do was to share our story with family, friends and co-workers. I should mention that we have a wonderful family. My sister-in-law and her sister and my brothers and I all went to school together, so we have known and loved each other for decades. When I told Liz and Kate, they surrounded me in a group hug, we kiss and hug some more, and they assure me that I am not alone in this.
In August of 2013, Paula had an incident of A-Fib which sent her to the hospital. She wouldn’t let me call the ambulance, but we did learn that the good thing about a walk-in clinic at 7:10 in the morning is that there is no one waiting in front of you. Wisely, they’re all back at home, some of them still even asleep. While she was in the hospital, during one test they thought they saw something on or around her aorta, so they gave her a CT-Scan, too. That is when we discovered that she had a fist-sized nodule on her thyroid and would need to have her thyroid removed.
In a follow-up exam, they took her off of statins, which some doctors believe can cause brain fog. At the time, we thought that the thyroid problem and statins were the cause of the memory and cognitive challenges she was having. Prior to having her thyroid removed, we went on our first visit to the memory specialist, where I watched Paula struggle to draw a clock face. At the time, I remember thinking to myself “Ohhhh, we are in trouble”. The last request that they made of her that day was “Maybe you should stop driving until we figure out what’s going on.” We left the building in a kind of dazed, amazed and shocked state…the not driving part eventually lead to Paula taking a medical leave of absence, and then officially retiring in September of 2013.
On Thursday, January 9, 2014 after months of being poked, prodded and subjected to virtually every kind of test the medical community has to offer, Paula was given the diagnosis of Alzheimer’s disease with a vascular contribution. We were in stunned silence as we left, but we still went to lunch at one of her favorite restaurants, as we had planned. We had been talking about this appointment for several days, giving each other pep talks, and agreeing that whatever the outcome, it would be “You and Me” working together to take on these new challenges.
You see, when we had our civil union, the song “You and Me” from the musical Victor/Victoria was our theme song. So, that night, we watched the movie, a favorite of ours. Some of the lyrics from this song are: You and Me, we’re the kind of people other people would like to be. Wandering free, we present the kind of picture people are glad to see. And we don’t care that tomorrow comes with no guarantee. We’ve each other for company. And come what may, you and me we’ll stay together. Year after year, won’t we my dear? That’s why we’re you and me. We’ll always be you and me.
The reason I decided to share our journey with you today is partly because of a quote from Barbara Brown Taylor’s “Learning to Walk in the Dark”. “...It is the inability to bear dark emotions that causes many of our most significant problems, in other words, and not the emotions themselves…There are no dark emotions, Greenspan says - just unskillful ways of coping with emotions we cannot bear. The emotions themselves are conduits of pure energy that want something from us: to wake us up, to tell us something we need to know, to break the ice around our hearts, to move us to act.” This quote really caught my attention, and summarized an element of our journey. I’ll be honest, there were some very hard days as we digested the diagnosis and pondered our next course of action. Paula’s diagnosis instantly and irreversibly changed our lives, our future, and what we had planned for retirement. My wake up call, my move to act was to decide that I was not going to be sad for the rest of my life.
Plan for the worst and hope for the best. After the initial shock wore off, we decided that we needed to change our overall game plan. The average lifespan after diagnosis is 2 to 20 years, so time is of the essence (or maybe not, hard to tell). We decided early on that we would face this journey together with dignity, grace, humor and courage. Our mottos and mantras became: “Make your life the best it can be. Find the silver lining. Begin the new journey. Plan for the worst and hope for the best. Make the lemonade.”
Now, to paraphrase Lou Gehrig, “Today, I consider myself the luckiest Woman on the face of the earth.” I know, I know, you’re thinking that this statement can’t possibly be linked with this kind of diagnosis. Let me share with you the ways in which our lives have been enriched, and why I feel this way.
Make your life the best it can be. I’ve always been a firm believer that we are in charge of our own destiny, and that how we choose to live our lives and determine our fates, is based how we react to situations. So, instead of traveling post-retirement, we started traveling while Paula is well enough to enjoy it. In 2014, we went to Washington DC, Florida, Niagara Falls and Dollywood. In 2015, we went to Disneyworld, frozen Niagara Falls in the winter (both thrillin’ and achillin’!), Las Vegas to see Elton John, and to St. Louis/Central Illinois to visit Paula’s family. In 2016 we went to Iceland, which was at times stark and stormy, yet also strikingly beautiful and otherworldy. Then we met up with Paula’s family in Savannah. Travel in the future will be to Florida or Hawaii or California to see the Redwood trees, among other things. We’ll see where the stars take us and be grateful for whatever direction we go.
Find the Silver Lining. It is said that when God closes one door, another door opens…and for us, this has been a very prophetic reality. Paula had been going to the Making Memories class at the Colchester Senior Center. Due to Paula’s cognitive decline, she was no longer able to keep pace with her classmates, so that door had to close. She is now in Active Day Adult Daycare, and is happy, absolutely loves going there, is a part of a whole new community and has completely embraced her new lifestyle. Another door opens.
Begin the new journey. At a meeting I went to, there were kernels of corn on the conference table. The chair of the meeting had brought them in, and spoke about them, about how when you plant this kernel, a great stalk of corn grows. She said much more, but this is the part that really resonated with me. At the end of the meeting, we were all welcomed to take some of the kernels. I still carry some in my pocket to remind me of that day and the power of seeds and kernels of corn; I think of them as kernels of wisdom, hope, faith, knowledge, compassion and courage. Kernels that make things grow; kernels that grow into whatever you need them to be, for whatever challenges life has thrown at you. Another door opens.
Make the lemonade. Having saved the best for last, let me now talk about Paula, who has always been, and continues to be, the nicest person I’ve ever known. A portion of the vows I wrote to Paula for our civil union are branded in my memory, because I still feel exactly the same way. “I have loved you my whole life long and I would rather be at your side than anywhere else in the world.” She continues to be fun, funny, and easy to be around. Paula rarely if ever, complains about her condition; I have coined the phrase that she is “cheerfully clueless”, which she cheerfully agrees with. The reason for this is because if I ask a certain type of question the reply I get back is “I haven’t got a clue”. I told her at one point that I was going to start calling her Clara when she made mistakes, after the dotty old aunt in the TV show “Bewitched”. Her reply was “You better not call me that too often or I may start thinking it’s my name”.
Make your life the best it can be. We try to laugh as much as we can at all our foibles and shortcomings, and enjoy each day to the fullest. I will tell you that there have been more than a few funny moments for us. Recently, I was doing the laundry, checking pockets as I went. I came across a pair of jeans, and the pocket had all these dark spots in it. I frantically asked “Are you OK, did you have a nosebleed or something?” As I looked closer, I realized that it was not blood that I was seeing; it was dots of melted chocolate. (Slow deep breath), so my next question was “Did someone give you a chocolate chip cookie?” She said “Yes, and I don’t know why I put it in my pocket.” (Sigh) you know, it’s hard to argue with that kind of logic.
Up until now, I had no idea that there were so many different ways to put on various articles of clothing including socks, panties, bras, pants and shirts. Heel cups bunched up on her insteps, sweatpants on backwards, shirts on backwards, bras on upside down (trust me; that one does not work too well…) or just various scenarios of her being partly dressed. One recent morning, Paula emerged from the bedroom wearing a shirt, with reading glasses strung around her neck, panties, and socks, and pronounced that she was ready to go. I looked over and said “Ummm, how about putting on the shorts I laid out for you?”
As Paula “unlearns” how to do things, I am creatively challenged to figure out how to help her “relearn” them. I am presently developing a system that I call the “Label Positioning System”, aka “LPS”, aimed at teaching your loved ones (toddlers or geriatrics alike) how to dress themselves. I’ll be working with one of my more techno-savvy friends to develop a series of YouTube videos tentatively titled “Learning to Dress via LPS”, so be on the lookout for them.
I first wrote this story in 2015, and while much of it remains true there are some cognitive and behavioral changes that have occurred. Rather than focus on the negative, I prefer to find the humor in our lives, and write about our various “events”. Let me share some of these stories with you now. Find the silver lining.
As mentioned above, when Paula “unlearns” things, I have to learn them in order to better help her. Lately, I have been working on my Denture Insertion and Removal Technique, aka DIRT. Although it is an unfortunate acronym, I have yet to come up with a better one. Let me tell you that it is much more challenging to try to get your fingers in someone’s mouth than you would think, and it has made me more appreciative of all the Dentists and Hygienists out there; God bless you each and every one!
This is one of my favorite stories about life with Paula. One day several years ago I came home from work and went upstairs to change my clothes. I was taking my watch off and noticed that the hairbrush from the first floor bathroom was on my nightstand. I called down to Paula and asked “Why is the hairbrush on my nightstand?” She called back “I got tired of carrying it around, so I just set it down.” You know, it’s hard to argue with that kind of logic. Of course the question you are begging to ask is “Why were you carrying it around in the first place?”, but you know better than to keep trying to figure it out, which causes your OCD mind to cramp up just a bit. Ouch!
One of my co-workers daughters was selling this high-priced cutlery, at one of those gatherings that is sort of like a Pampered Chef/Silpada/Tupperware party, where you are oh so carefully selected and also expected to buy something before the day’s end. I wound up buying a pair of kitchen shears, because “Hey, you can cut a penny with those things.” which the hostess justly demonstrated. Long story short, I had them for years, until one day I didn’t!
If I haven’t mentioned it before, Paula and I live alone, but in her mind there are other people here with us, including the “young boys that live upstairs”. Ummm, ahem, we live in a townhouse, and the bedrooms are upstairs, but oh, well. Anyway, one day I reached into a drawer for these shears, and they are nowhere to be found. I start looking in all my other utensil drawers, but to no avail. Paula is in the kitchen with me, and she sidles up close to me, looks to either side and conspiratorially says “I didn’t like the way other people were using them, so I put them away for safekeeping.” Ohhhh, alrighty then, Houston we have a problem. You see, when Paula puts things away, it is only infrequently that she can recall where they went. We play this game I call “Where in the world is…?” quite a lot at our house.
Later, after Paula is in bed, I am literally “tossing” the kitchen trying to find these things. This is in August of 2016, and I never stopped looking for them, and literally thought I had searched every possible hidey hole. Fast forward now to February 2018 when I finally give in and order a new pair of kitchen shears, which arrive on a Thursday. Two days later, on Saturday I am doing some chores in the bedroom, and I knock the top off this little upholstered bench seat. I look down and see a black-handled pair of shears, and I just stare down at them. At this point, it has been so long since I’ve seen them, that it takes me a few minutes to realize that I have found the Holy Grail, ummm I mean the missing shears! Are you freakin’ kidding me!?! They go missing for a year and a half and now I find them two days after new ones show up? Oh well, so I may be in the running as the world record-holder for sheer numbers of kitchen shears.
You Can Always Go A Little (or a lot)
It is a running joke, part of my family legacy, the phrase “You can always go a little.” Our family of six would be getting ready to get in the car, and my Mom would line us all up and quiz us. “Did you go? Did you go? Did you go?”, pointing at us, and if we said “No” her response was always “Go anyway, you can always go a little.” Paula and I have bought into this lock, stock, and barrel, and even some of our friends and relatives have adopted this daily coping skill as we have spread the word over the years.
We were only a week into the new world of navigating borderline incontinence; newbies, really. So one morning I ask Paula to take off her jammies so that we can shower. She does so, and also removes her adult diaper, I mean ummm, disposable brief. I am a few feet away and I notice a few drips appearing on the carpet and I say to her “Paula, you’re peeing…” and she says “Really?!?” I grab the diaper; I mean the disposable brief and try to jam it between her legs, but was fairly unsuccessful at getting it positioned correctly to “catch” anything. Now the drips become a stream, running down both legs, puddling on the carpet. I ask her “Can you try to stop?” and she shakes her head and says “No.” I stand there rooted at the spot, unable to move, just waiting for her to stop, but she keeps on going, and going and going, like the freakin’ Energizer bunny of carpet pee-ers. I’m watching this puddle grow bigger and bigger, but I still can’t move. It’s as if my feet have grown roots down into the floor, and I am as earthbound as a tree. After what seems like an eternity, she does finally stop, my feet-roots shrivel up and I am able to get her cleaned up and into the shower. I take towels and washcloths and blot up the puddle that has amassed. Lessons learned that day: First of all, take the incontinent dementia patient to the bathroom first thing every morning. Only remove the adult diaper, I mean disposable brief in the bathroom; tile is a lot easier to clean than carpet. Finally if this should happen again, throw a beach towel onto the floor; they are pretty darn big and pretty darn absorbent. This incident causes me to pause to think…they make Petmaster Stainmaster carpet, but I wonder if they make Humanmaster Stainmaster carpet? I may have to look into this.
Wandering and GPS devices
So the newest behavior that we are now coping with over the last several weeks is wandering. At first it was once or twice a week, but she has now become quite the escape artist, and as of the other day, two different neighbors brought her home within a few hours’ time. When we were in Florida, she burst out of the house wearing only jammies and shorty-socks, carrying a t-shirt…(I know, I know, don’t ask!). By the time I caught up with her, she was about a quarter of a mile away. Pretty darn fast for someone who has such short little legs!
Oddly enough, these devices are sometimes referred to as “Elopement Equipment”. I had always thought of elopement as a romantic endeavor wherein two people, madly in love, desperate to spend the rest of their lives together as soon as possible, decide to escape all the trappings of a traditional wedding, and just up and elope (without any need for equipment to complete their mission). If you ask me, this changes the dynamic of the word from a romantic escapade to something less than romantic, but I digress.
There are all kinds of GPS monitoring systems, some with fob-like sensors or other, larger sensors that one would ostensibly put in a pocket or a purse. There are also wearable devices and ones that go into a person’s shoe. From my perspective, however they all share the same flaw – the expectation that your (always fully cooperative) dementia patient will not remove the device from their pocket; or that they will always carry their purse; or that they will not remove the necklace/bracelet/watch; or that they will wear their shoes. In other words, the expectation is that the dementia patient will act like they are not a dementia patient, and will always make sure their tracking device is on their person when they make their escape. Ummm, how likely is that? What we really need is something that gets placed on the patient’s arm or leg that they cannot remove without help.
On top of the afore-mentioned flaw, these systems are also expensive, and involve “Big Brother”-like monitoring that seems too intrusive. Like many of my fellow DIY-ers, I pride myself on my ability to get creative and think outside the box to solve my problems. So my plan is to Frog Tape Paula’s iPhone to her ankle. If you are not familiar with Frog Tape, if you tape it to itself, you need Herculean strength to break the bond. Anyway, after I secure it to her, I’ll keep the “Find my Phone” app up and running. It won’t sound any alarms, but I figure I can set a timer and check her whereabouts relatively frequently. There are a few minor glitches that I still need to work out; in particular how we would handle charging it up and showering, but I’ll let you know how things work out.
Make the lemonade. We both have a wonderful partner with whom we are able to share unconditional love. She is my heart, my compass, my anchor, my best friend. She is my Martha, my Poolah, my Mergatroid, my Tilly, my Clara, my Sweet Love. And at the end of the day, and at the end of our journey, much like the incredible book, “Still Alice”, about a woman with Alzheimer’s disease, she is and always will be, Still Paula. This journey has brought us closer together with a renewed and deepened kind of spirituality and intimacy then we had enjoyed previously, or even envisioned. We both feel truly blessed to have the best family, friends and co-workers that one could ask for. So, hug your loved ones extra hard tonight and give them an extra kiss. As one of my uncles used to say, “What the heck, it can’t hurt and it may even help a little.”
Cheryl and Paula
Thank you for joining the movement!
Authored by Cheryl L. Gagne, and dedicated lovingly to her wonderful partner of 34+ years, Paula Collier.
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