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.
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.
For some of my readers, this post may be TMI. When writing about my mother, I try to be judicious in the stories I tell and respectful in the details I share. I hope this isn’t crossing that line. What I am about to tell you needs to be written because it is a daily reality faced by those afflicted with Alzheimer’s and those who care for them.
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.
Our son Matt and his family are hosting our family’s Thanksgiving celebration this year. This is the second year they’ve hosted us in their splendid home set on the bluffs of the Mississippi River in Hampton, Illinois. I enjoy helping out in their spacious and well-appointed kitchen.
I am thankful my sister is hanging out with mom so Wayne and I can get away from the responsibilities of caregiving for a few days.
What a blessing. God bless her.
On Sunday my daughter mentioned she is bringing the pies…lots of pies. I hear there will be pumpkin, French Silk, and chocolate pecan. On Monday she stopped by my house to borrow a few extra pie plates and Tupperware pie carriers.
Lord, help me.
Knowing Beth will be the bearer of pies made me wonder what I would be bringing. Other than an email asking for my stuffing recipe, I hadn’t heard whether I should bring anything. I sent my son a text which read
Did I miss a memo on what to bring for Thanksgiving?
His reply –
Just yourselves! 🙂
Wow! Another life change happened when I wasn’t looking. Not cooking anything for Thanksgiving?
When did that happen?
Wasn’t it just yesterday that THIS happened?
I found these photos while working on a long overdue project of creating some family photo albums. Matt must have been 4 years old and Beth almost 2, so it must be 1981.
I love everything about these memory evoking photos. The teeny tiny kitchen in our first house on 49th Street. The hand-me-down kitchen table and chairs from my in-laws. The 1950’s wallpaper. The orange tiles on the kitchen floor. Our tiny refrigerator barely had room for the turkey to thaw.
At the corner of one photo I spied the shelving Wayne custom built for our itty-bitty kitchen. The shelf now has a couple of coats of blue paint on it and sits in a place of honor on our three-season porch holding memorabilia of years past. As I examine the photo below more carefully, I see on one shelf a turtle cookie jar (I used to collect turtles), which I have since passed along to my son.
Thirty-seven years later, I still use that very same turkey roasting pan…and the brown-striped kitchen towel!
I love Matt’s facial expression as he examined his messy little hand after helping stuff the turkey. I think we need to recreate this photo.
And my little blonde sweetheart Beth! Look at the cherubic face of my little helper. Be still my heart!
These old photos have taught me the importance of capturing images of special moments we have together as a family. Tomorrow we will have Matt and Beth and their families gathered together in one place.
Momma’s eyes light up when Kathryn shows up each Friday evening. As Kathryn hoists her burgeoning backpack off of her shoulders and settles in at the kitchen table next to my mother, I look over my shoulder as my husband and I leave for our weekly Friday evening of respite and sense that I will not be missed at all. These two friends have already started in on their fun.
I’m pretty sure that our mom’s caregiver Kathryn is a real-life Mary Poppins. Much like Mary’s carpet bag filled with surprises, that backpack of Kathryn’s is always stuffed with hand-selected items which will help my mother “find the element of fun” for the next five and one-half hours. Together they eat supper, then work puzzles, color in their coloring books, have fun with hidden picture books, make a craft together, and a host of other things. Kathryn will read a storybook with mom, bring her a book filled with beautiful butterflies and flowers to page through, or even read a Bible passage together.
I’m so very grateful that early on in our caregiving journey with mom we decided it would be money well spent to hire a caregiver to help us out on a regular basis (actually, my very wise husband insisted). Mom is by no means wealthy, but Social Security and a modest pension gave her the resources to pay for a little help, so we chose to have someone come in twice a week for a few hours. When she was still living in her own home in Milwaukee (82 miles away from me), we chose Rent A Daughter to help us fill the caregiving gaps when family couldn’t be there to check in on her. Once we moved her to Fitchburg, we chose Home Instead to be our caregiving ally.
Some might argue that it is too expensive to hire someone. From my way of thinking, a few hundred dollars a month is less expensive than having my own health suffer because I never get a break. Preventative medicine, if you will. And it’s definitely less expensive than the cost of assisted living or a nursing home.
Whenever I have the opportunity to encourage someone who is heavily invested in caring for a loved one, I always encourage them to find a trusted substitute caregiver. Even if finances to pay for outside help aren’t an option, I encourage caregivers to reach out to friends (a retired senior), family (for us, our daughter, eldest granddaughter, or sister), a good neighbor…anyone who can give a little break from the physical, mental and emotional rigors of daily caregiving. It might not be for five hours, but even an hour or two away can make a difference.
Another sweet caregiver named Kathi comes on Sunday mornings, allowing us to have six hours to be able to teach our respective Sunday School classes, attend our worship service (my brother comes too), and enjoy lunch together with my brother. Mom doesn’t usually feel much like being social in the morning hours, but spunky Kathi’s positive can-do spirit also manages to keep my mother content and socially engaged during our time away. When we return, we usually find them seated at the kitchen table watching the birds at the birdfeeders and coloring together. And as an added bonus, Kathi always makes sure my dishes are done! Gotta love that!
The blessing of finding TWO caregivers who bond so well with my mother is most definitely Supercalifragilisticexpialidocious!
Tucked in our stack of mail when we returned from our little trip to NYC, Wayne and I found a letter from the Veteran’s Administration. Not too unusual. As I am Brad’s power of attorney for healthcare, and Wayne his power of attorney for finance, we are used to receiving communication from the VA.
This letter, however, was telling us that Brad’s income for 2016 may have been too high to qualify for the benefits he received in that year for his care at the VA. Brad had spent quite a bit of time under the care of the VA in Milwaukee, including surgeries, radiation and chemotherapy treatments, oodles of labs, x-rays, scans, medications…you name it, he had it in 2016.
I think my heart skipped a beat when I read and re-read the letter.
When I first took Brad to the VA, he had been bedridden for several months and was growing weaker each time I saw him. He hadn’t been employed in several years, had just a few hundred dollars in cash to his name. He didn’t have a car, and Mom was providing the roof over his head and the food he consumed. We were aware that he had a modest IRA account funded by a previous employer, having learned that when we were working with Mom’s financial planner, who also managed Brad’s funds. However, in sorting through piles of statements and unopened mail, and probing into his financial affairs, Brad seemed otherwise destitute.
Thankfully, when I took Brad for his first appointment at the VA, the financial counselor indicated that he was qualified to receive care. I mentioned the IRA, but he said that wouldn’t be considered with regard to his qualifications – it wasn’t considered income. So, Brad went through nearly a year of excellent care for the cancer(s) they discovered. Over that period of time, Brad gradually lost the strength in his leg muscles and became dependent on a wheelchair.
With mobility issues in mind, it became clear that Brad could no longer safely live in Mom’s home (especially since she had Alzheimer’s and we were going to sell the house and move her to live near us). So we cashed out Brad’s retirement account in order to pay for the nursing home care Brad would require once he was discharged from the hospital, not thinking about the “income” restrictions associated with his VA care.
Next came the “spend down” phase leading toward being eligible for Medicaid. To assist us in this process, we retained an attorney who specialized in elder care law. She suggested that before the nursing home got all of his assets, we spend money on a car which would accommodate Brad’s wheelchair (so I could transport him to and from doctor appointments and such), pre-pay Brad’s funeral expenses, and set aside a portion of his funds in a Wispact special needs trust account – this account would preserve some of Brad’s retirement funds to help us pay for future necessities not covered by Medicaid or the VA. For instance, Brad does not qualify for dental coverage through the VA, so we can pay for any dental work. When he needs items of clothing or toiletries, we can purchase it for him and be reimbursed by his Wispact account.
Once again, I am thankful for my husband’s careful diligence in financial record-keeping. He spends a lot of time entering data into spreadsheets and scanning receipts and invoices. I called a phone number provided within the letter to receive a little clarification. Turns out my hubby’s paper trail will come in handy; we basically have 60 days to produce documentation of how we spent that money on Brad’s behalf. The allowable expenses will adjust his “income” and reduce what he will owe the VA. It looks as if we will end up reimbursing the VA some funds for co-pays, but not as much as he would owe if we had not kept these records.
This little note is not a rant of disappointment with the VA medical care. Not at all. We’re so very grateful for the care he is receiving. It’s not even a complaint about our surprise in finding out we would have to pay for services received. Rather, it is a reminder to those providing healthcare or financial oversight for loved ones to keep careful financial records and to make wise choices in how you use funds in order to preserve funds for future expenses. No less important, make sure you have any legal documents in order, including power of attorney.
Many times in my caregiving journey for my mom and brother, I have no idea what step I need to take next. The path sometimes seems dark and uncertain. But God is faithful. He always gives wisdom in our decision-making, provides for our needs, and sheds light on the next step we need to take.
I pray that by sharing this experience, God may use it to shed light on someone else’s next step in their caregiving journey.
It’s hard to say when I first noticed the decline in my mother’s ability to remember things. In retrospect, there were very subtle hints in 2008, the year that my Dad died. Forgotten appointments. Unopened bank statements on the dining room table. Multiple notebooks for list-keeping. Alzheimer’s has progressed fairly quickly in the past two years, but in the first years, it was a slow backward slide. Easy to dismiss and overlook. Easy to blame on something else.
I know a little bit about the slow backward slide myself.
It was just a few years ago when everyone was noticing my change in physique. Compliments abounded as my hard work with diet and exercise began showing up in the way I looked. My confidence grew with each pound lost. I began to run (well, that’s what I called it). My hard-fought progress was an inspiration to others, encouraging them to reach for goals of their own.