(Note: Healthcare marketers and communicators have always fallen short when it comes to developing a deep understanding of the patient and caregiver’s mindset. The recognition of that failing is what motivated this post.) On June 11, 2012, my father sent this letter to all five of his children. My mom had been suffering from dementia […]A Love Letter from an Alzheimer’s Caregiver — The Healthcare Marketer
Kathleen B. Duncan asks a good question related to self-care. What if…? Today is my last full day of taking care of Momma in my home. Tomorrow she begins a new phase of care…and so do I.
What if eating healthy food, getting off the couch, going outside, and moving a bit isn’t just about living longer?
What if God knew every one of your days before one of them came to be? What if He determines the number of your days?
What if self-care isn’t just about being more emotionally stable? What if learning and mental exercise isn’t just about being smarter?
What if we work to be physically, mentally, and emotionally healthy not so we can live longer but so we live better? So we can do good? So we can do what God has called us to do?
What if we choose to do things to be healthier so we can help others, feed the hungry, clothe the naked, and care for widows and orphans without feeling worn out, overwhelmed, and burnt out?
What if it’s not all about us? What if we are…
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The past few days have been especially wonderful. Even though it sometimes felt like I was always cooking, having our kids and grandchildren gathered here and being surrounded by family refreshed my spirit.
Three nights in a row of good sleep didn’t hurt either.
Yesterday, our children, along with our three lovely granddaughters, lovingly came alongside us in support of a decision that Wayne and I had already prayerfully made. A spot in a lovely memory care home has opened up for my mother. Together as a family, we acknowledged that my mom deserves to receive the 24/7 care I can no longer give her.
This has been an especially hard decision for me, as it has always been my desire to walk Momma all the way “Home” here in our home. Now that mom is under home hospice care, it seemed like we were almost there. But God has given our family wisdom and showered me with peace in the midst of my tears.
Last night, Mom was out of bed before our Friday date night caregiver left our home at 10:30 p.m. Bless sweet Kathryn’s heart, she tried so hard to get mom to bed and asleep before her shift was over. It was not meant to be. Sleep would not come for Momma until a few minutes before 5:00 a.m.
Today I’m feeling physically worn out and emotionally spent. The frustrations of my sleepless night and my groggy, bone-weary body served as confirmation that the decision we made as a family is the right one.
Nine days from now it will be different.
Round-the-clock care will be available to redirect my tired and anxious mother back to the safety of her bed while I am sound asleep in my bed a few miles away. There will be no more trips up and down the stairs between my bedroom and hers all night long. No need for cameras and a video monitor to keep tabs on Momma. No need for baby gates, a multiplicity of grab bars, wheelchairs, walkers and bedside potty chair. Someone else will vigilantly monitor and carefully dispense drugs, change and launder soiled clothing and bedding, cajole her into bathing (and washing her hair), and keep her from wandering away.
I find comfort in the hope of being able to attend school concerts, participate in church activities, go to the gym more regularly, travel with my hubby, take an unhurried bath, have impromptu play dates and sleepovers with my grandkids, and play in garden dirt whenever I want. The list of all the things I’d like to do now is very long indeed.
As much as I look forward to finding our new normal, I also understand the transition will not be easy–for her or for me. The tears which trickle down my cheeks without warning remind me that I will miss taking care of mom. It has truly been an honor and a privilege and the hardest thing I have ever done.
Caregiving truly is the hardest job I ever loved.
A deep blanket of snow is covering my garden right now. Of this I am glad. As much as I long for warm Spring weather and the accompanying tulips and daffodils, I really want my gardens to be protected by a thick blanket of snow for as long as this crazy on-again, off-again cold weather lingers. Rather than show you pictures of snow, snow, and more snow, I thought I’d follow the lead of one of my favorite gardening bloggers and share some of my favorite garden-related books. (You can read Carolee’s inspiring post on her blog Herbal Blessings here.)
If I have to pick a favorite, it would undoubtedly be Creating a Perennial Garden in the Midwest by Joan Severa. I read it nearly every winter gathering ideas, hopes and dreams for the garden sleeping beneath the snow in my own little corner of the world.
Joan Severa passed away in 2015, but I was blessed to meet her in the days before I began caring for my mother. Back then, before momma’s Alzheimer’s diagnosis, I actually had time to attend an evening garden club meeting that met in my neighborhood. One sultry summer evening our garden club members got together for a little neighborhood walking tour of area gardens. Joan’s garden was one of them. I was so delighted to learn that she lived within walking distance of my own home and garden. It was a “two-fer” tour, as she and her next door neighbor and best friend Chris had seamlessly merged their adjoining gardens into one lovely gardenscape. It was so very inspiring.
Back to my favorite gardening book. It’s my personal favorite because Joan shared things I need to know as I garden not only in this USDA Zone 4 Midwest area, but in this very neighborhood. Lovely photos of her own garden compelled me to keep turning pages, and her engaging writing style made me feel much like we were sitting on a porch overlooking her backyard paradise whilst we sipped tall glasses of ice tea. Joan’s engaging writing included suggestions for how to choose and create a garden site, plants that do well around here, how to care for said plants, step-by-step instructions for the best way to create and use mulch…and most importantly, for me, what plants to avoid. The book is filled with photographs too. Absolutely LOVE it!
My second favorite? A Gardener’s Journal, a 5-year garden record book. I’m the author of this book as I make notes of how my own garden is doing in a given week, what I planted, what came up (and what didn’t), when certain bugs appeared (and how I tried to get rid of them). I also note ideas for next year and jot down the names of plants on my ‘wish-list’ (just in case someone wants to buy me a present). Here is a peek at one page in my journal.
Favorite #3 – Further Along the Garden Path, by Ann Lovejoy. My friend Judy gave me this classic book out of her own garden library. As I page through this beautiful book and guide to the gardening year, the amazing photos taken by Mark Lovejoy actually remind me of Judy’s garden paths which meander through her mostly wooded landscape. A lovely surprise awaits around each and every turn in the path.
When I moved from Milwaukee to Fitchburg in the summer of 1999, I left behind my own beautiful garden. Even though I had dug up divisions of various perennials to plant in my new garden, I didn’t get the diggings planted soon enough and lost many of my Milwaukee garden treasures during that brutally hot summer. Judy generously shared pieces of her Verona garden with me, helping me create new gardens in my new gardening space. I think of her with love and gratitude whenever I read this book or see a flower that she shared with me.
I have spent hours browsing through this little book, filling my mind with landscape plans and ideas for my gardens. Beds & Borders contains 40 professional landscaping designs. You can use the sketches and plant lists as a do-it-yourself guide to creating your own oasis of floral loveliness, or you can order blueprints of your favorite designs to hand off to a professional landscape artist. In addition to too many hours of gardening daydreams within, novice and expert gardeners will find the book to be filled with oodles of gardening tips and design techniques.
And one more pleasurable read. An Island Garden, by Celia Thaxter with pictures and illustrations by Childe Hassam.
Beautiful. Enchanting. Educational. It’s the inspiring story of her Appledore island garden, written in vivid detail, every word a delight to the senses.
If you love gardens as much as I do, you simply must find a copy of An Island Garden. Once you have the book in hand, clear your schedule, make yourself a cup of tea and find a cozy spot near a window – preferably one which overlooks one of your snow-covered gardens. As you read, I promise you will be transported to Celia’s island garden, hear the crash of the waves, smell the sweet aroma of carefully tended blossoms, gaze in wonder at the sight of magnificent old-fashioned hollyhocks swaying in the warm ocean breeze, and hear the sweet song of nesting birds.
Whenever I read this book, I feel as though I’m kneeling in the dirt right next to Celia helping her tend her beautiful garden while she mentors me in tending my own little patch of this earth.
It’s a bit warmer today and the snow is beginning to melt. I think I even heard a robin singing, but the closest I’m going to get to gardening this week is filling the bird feeders for our hungry squirrels. I will probably get my gardening fix by paging through the gardening catalogs which seem to be arriving daily or re-reading one of my favorite books. Of course, there’s always visiting all of the other Sixes, courtesy of our meme host The Propagator at https://thepropagatorblog.wordpress.com/
Signing off to dream of daffodils and tulips.
January in Wisconsin was unusually cold, courtesy of the Polar Vortex. One Friday, when temps had dipped well below zero, my hubby and I were contemplating whether or not we’d cancel our weekly date night. Since we had a caregiver for mom lined up (who was willing to brave the horrible weather), we decided to go ahead with it, but not travel too far from home. Our evening out would include dinner out at a nearby restaurant that we enjoy, then we would do a little grocery shopping (yes, we’re old enough that we sometimes grocery shop on our date nights).
After all that senior excitement, we decided to go home and relax while watching a few episodes of one of our favorite whodunit detective shows. Momma hadn’t been feeling well and was not in the best of spirits all day. Expecting to find her in bed and not feeling very social, I smiled when we walked in the door and saw her seated at the kitchen table working a puzzle with her amazing caregiver. Wayne went upstairs to queue up our show so we could hunker down for the evening watching another episode of Psych.
Momma really enjoys her weekly time with Kathryn, always lighting up when she sees her. Kathryn has a special way about her and easily keeps mom engaged with puzzles, coloring, or looking through picture books together. Honestly, I think Kathryn is better at keeping Momma happily engaged than I am.
On this particular night, Momma was engaged, but seemed just a bit frustrated with placing the puzzle pieces. After putting the last grocery item away, I walked past the kitchen table to head upstairs for movie time and noticed mom was starting to slump forward in her chair (Kathryn had noticed too). The color in Momma’s face drained, her hands and arms were tremoring, eyes were fixed, pupils dilated, and she was making sounds, but I could not detect any words. I recognized it as an episode of vasovagal syncope (VVS) much like the one mom had experienced about a month ago.
Briefly, VVS is a fainting episode which happens when the blood pressure takes a nose-dive, usually during periods of agitation, stress or anxiety. Momma had not had a good day and was physically worn out by stomach pain from persnickety bowels and back and forth trips to the bathroom. Shortly before this episode, she had mentioned not feeling well and that she had to go to the bathroom again. Next thing we knew, she was slumped in a classic VVS faint. Episodes of this nature are generally not serious and last a minute or less. I knelt next to her, supporting her with a little sideways hug so she wouldn’t slump to the floor. Unless you see it coming early and can get the individual lying down and feet elevated above the heart, there’s really not a whole lot you can do to circumvent an episode of VVS once it has begun. I decided to pray out loud for mom and had no sooner said ‘Amen’ when she began to stir in recovery.
The rest of the evening is a bit of a blur, but I remember being thankful that Kathryn was there. In addition to the symptoms I already mentioned, Momma loses control of her bladder and bowel during these episodes. Kathryn was so very helpful in getting Momma cleaned up and ready for bed. Once mom was comfy in her bed, Kathryn sat with mom in her bedroom and shooed me off to join Wayne for what was left of our movie night.
I sensed that life as we knew it was taking yet another detour, the path ahead uncertain, and most likely containing many twists and turns. How grateful I am to have the calm assurance that Someone is traveling with us, leading each and every step of the way.
As my dear mother’s struggle with Alzheimer’s grows increasingly difficult to manage, it is becoming harder for me to leave the house for any length of time. While my hubby is very capable and always willing to help in many ways, sometimes the help mom now needs is very personal in nature. For this reason (and many more), it’s such a blessing to have a daughter who lives nearby who often helps her grandma when I need to be away. I recently had to take my brother to the doctor and the timing of the appointment didn’t work out for Beth’s schedule. Thankfully, my friend Rita was more than willing to help.
It would be my heart’s desire that caregivers everywhere had someone like Rita in their lives. Someone with the ability to read between the lines. A friend who puts their own life on hold in order to be a blessing. Seriously, if I post something on Facebook or my blog about being tired, I can almost guarantee that shortly thereafter I will hear the “ding” of an incoming text and it will be Rita offering to help look after Mom.
Just last week Momma was having a very hard evening. I had called hospice to let them know that she was having high levels of anxiety and breathing difficulties. Before I knew it, two hospice nurses were at the house helping me with her needs. Toward the end of their visit, I noticed a familiar look on Momma’s face and a slight slump in the way she was sitting. I told the nurses that it looked like Mom was going to faint. And faint she did – she slumped over hard and for a much longer period of time than her usual syncope episodes. Even though I’ve been through this several times now with mom, this one felt a bit different and, I must admit, this time was a little scary.
Unbeknownst to me, in the midst of the ordeal, my hubby Wayne put out a prayer request on our church’s Facebook group and several in our church family began lifting her name up in prayer.
We had a hard time getting Momma to recover from her faint and struggled to get her limp form into bed where we could better help her. I was so very glad to have two nurses there to witness the episode, help me care for her during the episode, and help get her cleaned up and ready for bed afterward.
Momma was now resting comfortably in her bed and the nurses were preparing to leave. I heard my phone ring. Rita called to see if I needed any help; specifically offering to come spend the night so I could get some much needed sleep. I smiled as I listened to her kind offer and quickly responded with my “Yes, please!”
As I said my goodbyes to the nurses and awaited Rita’s arrival, I offered up a prayer of thanksgiving to God for sending TWO hospice nurses tonight and for giving me a friend like Rita – a friend who is truly the hands and feet of Jesus in my life right now.
Here’s a Facebook rewind where I reminisce about my first date with my (now) hubby, Wayne. We now have a granddaughter who is almost the age I was when Wayne and I met. And she reads my blog! Yikes!
Early in their writing relationship, Wayne shared his list of hobbies. It makes Cindie laugh today because she’s never in 34 years of marriage seen him even attempt to body surf or snorkel, but there they were on his lengthy list. Try as she may, she couldn’t find much in common. Why she tried so hard, knowing full well he was “too old” and she was “too young” is hard to explain. I think it is best summed up that high school girls like to dream – and dream she did.
They planned to do three things together during his 30-day leave of absence from the Navy: ride together on the church bus to Camp Fairwood; a dinner at a restaurant (Wayne’s way of saying “thanks” to Cindie for writing); and a fishing trip (because, as you may recall, in trying to find something in common on the aforementioned “hobby list,” she had stretched the truth a tad to say she “loves fishing.”) Other than these three things, absolutely no plans to “date” were on the horizon.
But God is always full of surprises.
First surprise: on the very Sunday that Wayne and Cindie met in the hallway at church, God planted a Marine named Danny (cousin to her best friend, Cindy).
Danny and Cindy came to church together that Sunday evening. Cindy introduced Danny to Wayne and Cindie. Danny was on leave too, and, small world that it is, was stationed on the very same Hawaiian island as Wayne. Danny, outgoing and gregarious as they come, assuming Wayne and Cindie were a couple (not knowing they had really just ‘met’ one another) said, “Hey, why don’t we go out for a bite to eat together after the service?” Cindie had to ask her mom, of course. It seemed innocent enough, so mom said yes, and off her daughter went on her first unplanned un-date with Wayne.
The second surprise was an “un-date” that happened the very next day when Wayne accompanied Cindie and her dad on the trip up to their church camp, Camp Fairwood. It was Monday, August 6, 1973, and Cindie’s dad was driving a bus loaded with 30 or so junior-aged boys headed for a week of camp and he had invited Wayne along [in retrospect, Cindie wonders if this was her dad’s way of checking out this young man who was paying attention to his young daughter]. The stated intent was for Wayne (who drove fuel trucks in the Navy) to give Cindie’s dad (and his bad back) a break in driving on the trip home with the empty bus. Wayne and Cindie talked all the way up to Camp, with junior boys teasing them all the way . . . and Cindie’s dad keeping tabs via the bus’s extra-large rear-view mirror.
Then, as God would have it, surprise number three. A Pastor from another church asked if he could hitch a ride on Garfield’s bus – this would get him closer to home where his wife could pick him up. God’s surprise? Pastor Luke offered to drive, allowing Wayne and Cindie to chat non-stop for another 120 miles (although neither apparently wanted their photo taken, here is photographic evidence).
Cindie attended prayer meeting on Wednesday night – and so did Wayne. Cindie’s friend Cindy (I know, it’s confusing) was there with her cousin Danny too. They decided once again to “grab a bite to eat” after the service together.
During their table talk at Jolly Roger’s, Danny suggested they all go to the Wisconsin State Fair together on Friday night. Cindie swallowed hard knowing she’d have to ask her parents about that one too. She knew this one was going to sound more like a REAL date. Surprise number 4: since it was a double-date, her parents said ‘yes’…with reservations and restrictions, of course.
The fair was wonderful. The foursome enjoyed all the usual fair fun and food, then decided to take in a concert by Sha Na Na. Arriving late for the concert, they took a place seated on the ground near the stage. A song or two later, Danny decided for reasons unknown to lay his head in Cindie’s lap. She didn’t know quite what to think, or what to do. But Wayne did. He stood up and said to Danny and Cindy (mostly to Danny), “We are going to go take a look around at some of exhibits, we’ll catch up with you two later.”
Before the evening was through, in the midst of a crowded state fair exhibition hall, Wayne and Cindie were separated. Wayne once again knew just what to do. He reached through the crowd, took her hand in his, and didn’t let go until the evening ended with a gentle goodnight kiss at her front door.
He let go of her hand that night, but never her heart.