It’s the blue-skied, breezy sort of day that lures you outside to just sit a spell and enjoy summer’s final days. I’m sitting in a comfy chair on my backyard deck, enjoying the sights and sounds around me while I sip on a cup of coffee from a favorite mug and spend a little time reading my Bible.
In addition to all the usual weed pulling, deadheading, and watering, we’ve kept pretty busy this week. My hubby has been busy building birdhouses for our yard. He’s been using the lumber salvaged from our former deck in his creations. The birds don’t really care one little tweet if their new homes are decorated, but I have been enjoying getting a little artsy with painting and embellishing them. I’ve got a spot all picked out for the latest creation…a nice spot between two trees in the backyard. I’ll post a pic once it’s in place.
Yesterday my hubby and I went to a new eye doctor to have long overdue eye exams. Of course, COVID-19 precautions meant they are being extra careful, so we parked in a shady spot and checked-in for our appointments via phone from our car, then were instructed to wait in our car until someone came out to the car to ask the screening questions.
Waiting in the car for your eye appointment isn’t so bad. Especially if your waiting room looks like this…
Hubby’s eyes had only a minimal change since his appointment four years ago. I had been noticing changes in my distance vision since my last appointment three years ago. Things weren’t quite as crisp and sharp as they used to be. Sure enough, my eyesight had indeed changed significantly, so now I wait for new lenses for my glasses.
The sweet chair garden by my 3-season porch is filling in nicely with a little stand of phlox. You might recall that a few of my granddaughters painted this chair for me last summer. (You can read a little about this chair here too.)
Bees are happy I decided to plant a few zinnia seeds in two of our raised beds this year. I enjoy cutting the zinnias and love creating little bouquets to take to my friends at BeeHive Assisted Living and Memory Care.
I hope you enjoyed the mini six photo tour of my garden this week. Most Saturdays during gardening season I join up with blogging gardeners around the world for a virtual garden tour. Six things, in the garden, on a Saturday. Could be anything – a flower, a tree or bush, a favorite gardening tool recommendation, a gardening dilema, a cool bug or critter…anything at all. Our little show ‘n tell is hosted by The Propagator, who shares what’s going on in his amazing garden, then invites others to share as well. If you’d like to take a peek at the gardens too, just click on The Propagator’s site and give his weekly post a read, then scroll on down to the comments section where you’ll find loads of links to explore. I know he’d love to have you join in on the fun too.
My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.
What signs did you see that made you suspect that your mom was experiencing memory loss?
One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:
Repeating stories multiple times at the dinner table.
Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.
Mummy-wrapped banana peel from Momma’s purse
Asking the same question over and over again.
A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.
Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)
Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
Hiding her checkbooks.
Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
Repeating stories. Oh, I think I already said that.
Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
A diminished desire to attend church or get together with her friends.
Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
Multiple cans of Coke begun, but not finished.
Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
Inordinate amounts of junk mail.
She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
She kept renewing her magazines, even if she had YEARS left on the subscriptions.
Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
Hiding valuables and claiming they were stolen.
Growing frustration with using a telephone or a once-familiar remote control.
When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).
Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.
Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?
Today I am imagining that we are enjoying a cup of coffee (or your favorite beverage) together. In my imaginary coffee klatch, you are asking me a few really good questions. Let me share with you how I would probably answer those questions.
“What things did you like best about having your momma in assisted living memory care?”
I was blessed to be able to sleep at night (all night).
Momma had more than one pair of eyes keeping an eye on her when she struggled with sundowning and couldn’t seem to stay in bed all night.
Momma was safer. Yes, she would fall, but she would fall at home too. At BeeHive she had more than one person available to help her get up again and a whole team of people assessing whether or not she was hurt.
I slept in a peaceful and quiet house. There was no longer the need to listen to a video monitor’s static hissing at my bedside as I drifted off into never-long-enough sleep.
There were no more bleary-eyed trips to her room in the middle of the night to help with toileting, clean up accidents, change clothing or bedding, or try to reassure her that she was safe from the imaginary people she would see lurking in the shadows at night.
“What did you miss the most about being a caregiver once your mom was at BeeHive?”
I would tell you that even though I no longer had the responsibility of caring for her 24/7, I was still her caregiver. While some caregiving loved ones seemed able to separate themselves for a few days at a time, I found myself visiting my mom daily, providing care in the following ways:
Sitting with her at lunch to better ensure she would eat something without wandering away from the table.
Being visibly present for a few hours of her day.
Being her advocate. I communicated on her behalf with the staff at BeeHive, the nurses and doctors, and the hospice workers.
I simply cared for her by making sure she had everything she needed to be comfortable.
“If you had to do it over again, what would you do differently in caring for your mom?”
I’d probably tell you, “Not much.” Each step of the journey with my mom was prayerfully taken. Decisions I needed to make were made with the help of God and those who love me best.
“What do you want your children to do if they someday have to deal with you having a diagnosis of Alzheimer’s too?”
I would tell my children …
Re-read my blog. I wrote it for you. You might find some helpful insights there.
Don’t be afraid to ask for help. Be specific about what you need.
I want you to feel comfortable making the decision to entrust my care to a place like BeeHive sooner, rather than later. Even if I protest at that time, it will be okay. It will be good for us.
Even if you’re not there every day, please don’t forget to visit me.
But most of all – even if I’m unable to remember who you are, I love you very much and always will.
I’m a familiar face at Oregon Manor Skilled Nursing Facility in Oregon, WI. Normally, I’m in and out of there several times a week, transporting my brother Brad to or from somewhere or another, or just stopping by to bring him a smile and a cup of coffee (and a donut, if he’s lucky).
Things are a bit different now. Now I can’t go in at all.
On Monday, I rang the doorbell to the skilled nursing facility and then waited on their front porch. Tom, the facility’s administrator answered. I told him I was there to pick up Brad for an appointment at the VA. Tom went to get Brad from his room and then delivered Brad and the necessary paperwork with his medical information to me on the front porch. Tom apologized for being unable to let me in, but I understood; it was for the safety of everyone, myself included.
Even purchasing a cup of coffee for my brother was entirely different, somewhat strange experience.
I usually stop at the Kwik Trip just down the road from where Brad lives and pop in to buy him a cup of coffee to drink on our way to the hospital. Brad likes their coffee, so it’s a treat for him. Today I couldn’t pour him a cup of coffee and fix it the way he liked it because they had suspended all of their self-serve food and beverages. No worries, though. Thankfully, an employee, donned in gloves, poured Brad’s Kona dark into the extra-large cup, then added half & half until I said “when” – he likes a LOT of half & half, so “when” took awhile.
Our route takes us through the UW-Madison campus, normally teaming with student activity. Not this time. No students on bikes. No pedestrian traffic. Businesses that cater to student customers seemed forlorn and bereft of customers – some looked closed. Definitely an easier commute, but sad at the same time.
We needed to answer more than the usual screening questions at the VA’s parking garage, which seemed cavernously empty. In stark contrast to my usual squeal of delight when I actually am able to find a handicap parking spot (with my brother giving me the amused side-eye), we were both in wide-eyed wonder that we had our pick of ALL the prime handicap spots today. In fact, ANY spot would have been large enough to maneuver my brother in and out of the car with his wheelchair. It was like a ghost-town.
The procedures for gaining access to the hospital changed too, so as to minimize the risk of infection. There was a designated entrance with closer scrutiny and screening, and explicit directions to use an entirely different designated exit to minimize contact. There was no wait for an elevator (although there was one man on the elevator who protested that we got on it with him); it’s really hard to practice social distancing when you’re in an elevator and pushing a wheelchair.
Checking into the podiatry clinic was different too. A line of blue tape on the carpeting masked off a safe distance from the clinic’s reception desk. Brad and I had the pick of ALL the spots in the empty waiting room in the Lighthouse Clinic’s waiting room, where we normally have to find a spot within ear-shot in a nearby hallway. Very few patients are being seen, but they wanted my brother to come in because he is at great risk for bone infection and they are concerned about the possibility of him losing his big toe. I’d show you a picture, but trust me, you don’t want to see it.
Working with a skeleton crew in their clinic, the doctor himself came out to call Brad back to an examination room. Normally dressed in standard issue scrubs, today he was wearing a mask and had a hospital gown over his scrubs; the gown wasn’t the usual disposable gown made of blue paper, rather the cloth type one wears if they are an in-patient in the hospital — you know, the ones that tie in the back and leave your backside exposed. He carefully examined Brad’s toe, emphasizing how important it was that we get this problem under control in order to avoid amputation. Brad routinely refuses care in his nursing home, so I’m hoping that this frank discussion put a little more cooperation in him. We’ll see.
In no time, we were headed back to Oregon Manor. Arriving at the same porch where I picked Brad up, we rang the doorbell and reversed the procedure. I thanked Tom and Brad’s nurse for all they’re doing to keep residents safe and healthy, assured them of my prayers for wisdom and protection, then headed home.
It’s a beautiful spring day and it was late-morning, so I decided to make McKee Farms Park my destination on my way home. The luscious fresh air is still a little nippy, so I buttoned up my jean jacket and headed to the paved walking path. It’s my custom to pray as I walk. Today I thanked God for the people who, at risk of their own health and welfare, take care of my brother and my mother. Walking, praying, and enjoying the beauty, I couldn’t help but notice how social distancing is evident even here at the park with people keeping the recommended 6 feet of distance between themselves. The playground was eerily quiet, with no children enjoying it, even though they are all out of school.
But you know what? I noticed something else at the park too – something nice. Families. They weren’t hanging out at the playground with the kids running around and parents seated on benches looking at their cell phones. Moms, dads and kids were out walking or riding their bikes together. They were talking, smiling and laughing together. One dad was out there teaching his little one how to ride a bike. Another dad was helping his kids fly kites while mom pulled a little picnic blanket and snack out of her backpack for them. One family was taking a walk ahead of me on the path, and the kids were having fun practicing what we’ve come to know as ‘social distancing’ as they held onto the ends of 6′ ropes.
As I continued my little prayer walk, I thanked God for showing me another hidden grace of this difficult time when we’re being advised to shelter at home and practice social distancing: families truly enjoying this slower pace of life together.
I would love to hear from you! Please share in the comment section below one of the “hidden graces” you have noticed during this crazy time of responding to the COVID-19 crisis.
One recent thread on a Facebook group for dementia caregivers discussed the topic of how to respond to people who say “I wish I could help.” Most have good intentions, but no concrete offers of help. Others are just making polite conversation and really have no intention of helping. One tongue in cheek caregiver response was, “I’m going to start a list to hand them.”
We all laughed.
One longtime caregiver’s contribution to the post was, “I think we should all make our own list to have ready whenever we hear that offer.” Before long, we had created a rather long list. Some of our responses were a bit of a tease, like the caregiver who said, “If you want to bring me a gift, bring Kleenex! My loved one goes through two boxes a day!” We all laughed because an obsession with Kleenex and toilet paper seems to be prevalent in the world of memory loss.
Let me share a few more of the ideas culled from our group effort:
Instead of “let me know if you need anything,” please just show up on my front porch with a good cup of coffee.
Another caregiver added her twist on the impromptu coffee date idea: “Yes, show up on my front porch with a cup of your favorite coffee. Then sit down with my loved one and tell me to get lost for awhile while you drink your cup of coffee.”
Talk to me. Listen to me. I don’t really have someone I can carry on a conversation with anymore.
If you see a need that you can meet, just do it. It will make my day.
One woman’s husband asks her each morning, “What can I do for you TODAY that will make your life easier?”
Send me a card once in awhile (I have a special friend who does this every single week).
Share with me one of your special memories of my loved one. In doing so, you will help me focus on the good and remind me that their life mattered.
Tell me that what I’m doing matters.
One item on the list was my favorite: Ask God to show you how you can help. I promise, He will.
In his sermon last Sunday, our pastor reminded his congregation that it is easy to miss the beauty of God’s grace in our every day lives. We are so accustomed to receiving his daily gifts and benefits we often grow blind to His goodness and loving kindness toward us. Pastor Jeremy challenged us to watch for ways God demonstrates His abundant grace toward us. To do this, he gave us an assignment asking us to take out a sheet of paper and list 20 things God has given us that we do not deserve.
I’ve been watching and taking notice this week – here’s my list with a little bit of explanation on each.
My copy of God’s Word – with real pages I can turn and plenty of room in the margins to jot special notes. By God’s grace, my granddaughter Violet loves God’s Word and has the same Bible.
The Grace of Family. Growing up in a family who lived several states away from our kinfolk, I recognize full well the grace of having my family close.
Veiled grace. Our friends had their baby on Thanksgiving Day. My first thought was, “Oh no!” Their wee girl wasn’t due to make her debut until February. While ‘Baby K’ was more than a mite too early, she arrived on the day that was just right on God’s timetable. By His grace, she weighed 2lb 14oz – a good weight for a babe who arrived much too early. Also by His grace, she was delivered by emergency cesarean in a hospital equipped to handle the very special needs of Baby K and her mommy. A careful look at the circumstances surrounding Baby K’s arrival reveal God’s veiled grace in everything.
Grace for Rough Days. Momma struggles with the little things in life. Just getting out of bed is rough. Walking hurts. Underwear are disposable, and for good reason. Sleep comes…eventually, and not always when everyone else wants to sleep. Grace for rough days comes in many forms – usually shaped like people who care.
Hugs. If grace could be measured in a currency of hugs from grandkids, I’m one very wealthy woman.
Testimonies of God’s Grace. We attended a Thanksgiving Eve Service at Wildwood Church where our son serves as an elder and missions pastor. It was a blessing to sing favorite hymns together with brothers and sisters in Christ we were meeting for the first time. We listened, sometimes with a laugh, other times with tears in our eyes as members of this congregation shared their testimonies of God’s grace in their lives.
Grace in having a furnace to keep our house warm. Our thermostat is set at 72 – mostly because my mom is always cold. My body must have grown used to her temperature preference; at times, I felt a bit too cold at my son Matt’s house where it was 63 degrees. Then my mind recalls my husband’s recent trip to India where he discovered winter temps can fall into the 30’s at night. Many folks there don’t have heat in their homes. Or insulated walls, windows and doors. Or a fireplace. I’m thankful for a warm house, socks for my usually bare feet, and money to pay our heating bill.
Grace in owning a washing machine, a convenience totally foreign to many in the world. A blessing for the umpteen loads of wash in the week of a caregiver.
Grace in laughter. A cheerful heart really IS good medicine (Proverbs 17:22). Yesterday, one grandson with especially infectious laughter was riding in the back seat of our car and his giggles blessed my heart.
Grace in a Spirit Who prays for me. Sometimes I am so fatigued and emotional, or tired and discouraged. I don’t know how to put my needs into words in prayer. My gracious God knows what I need, and the Spirit of God dubs in the words my heart utters but my lips cannot speak.
“This is Us” kind of Grace. When it feels as though my caregiving responsibilities are sucking the “us” out of our marriage, I am reminded that God gifted me with a husband whose generosity goes beyond material things. He lovingly supports me in this decision to care for my mom in our home by unbegrudgingly giving of his own time while I give of mine.
Grace notes. Musical ‘grace notes’ are tiny ornaments decorating a musical piece with beauty. I’m blessed with three granddaughters who love to leave little surprise notes for me to discover as I go about my day. I call them my grace notes. I don’t deserve granddaughters who love me like that, but God blessed me with them and I am SO grateful.
Grace in the ability to hear and enjoy music. Momma lives in a rather silent world. Oh, how I wish she could hear the beautiful music I heard this week. Two “hymn sings” in one week; lovely piano pieces played by special granddaughters; my daughter-in-law singing and humming to Christmas music while prepping food in the kitchen, to name a few. I found special joy in watching my daughter teach her daughter to line dance while my son-in-law sang a little boot-scootin’ country tune. I cannot imagine a world devoid of the grace of music.
Grace in Technology. I confess, I really enjoy Facebook. Frustrating as I sometimes find my laptop and iPhone, the ability to see the faces of loved ones near and far gathered around their own Thanksgiving table is priceless.
Diet Coke and Coffee. Enough said.
God’s grace of comfort as I sleep. One of the missionaries we support shared a picture yesterday that made me realize how blessed I am to have a comfortable bed, an abundance of blankets, and pillows that are just right. His photo was a reminder to pray for refugees in Iraq whose city had been hard hit by recent heavy rains, drenching their dwellings and meager belongings. Lord, as I fluff and arrange my pillows at night, remind me to pray for those who have no place to lay their sleepy head tonight.
God’s gracious gift of helpers. Momma’s Friday and Sunday caregivers, Kathryn and Kathi, are an amazing grace gift, allowing a bit of time away from caregiving each week. And I must not forget my friend Waldely, who helps keep my head above water (and dust) by helping me with housework.
Amanda and Lisa. As my caregiving responsibilities grew, I contemplated stepping down from my church ministries, including teaching Sunday School. Then, just as Aaron and Hur came alongside Moses to hold up his weary arms, Amanda and Lisa stepped in to help me with teaching responsibilities. They are a gift of God’s grace in my life.
Grace in a basket of warm, freshly dried laundry. Momma so relishes feeling useful…and handling warm laundry in need of folding brings her extra-special joy.
Grace in the next generation. Tomorrow about 24 young faces will look up at me as we sing praises and learn more from God’s Word in Sunday School at Memorial Baptist Church – evidence of God’s grace continuing to the next generation.
Now, it’s time to flip my list over and start again. Would you join me in the comments below by sharing evidences of God’s grace in your life? One or two will do, but I’d encourage you to begin your own list too.