Tidy Mommy

“Who made this mess?”

I’ve heard Mom ask that question since I was a toddler. She still asks this question whenever she surveys the bread crumbs and potato chip crumbles all over the floor surrounding her chair at the kitchen table. It’s best not to be too forthright and tell her that SHE is the guilty party. It’s the truth, but the blunt truth would only injure her fragile mind. Many inadvertent hurts later, experience has taught us that it is best to come at the truth from the backside. “Mom, messes happen. No worries. Let me get out the little broom and we’ll sweep it up right away.”

Hiding the mess
Mummy-wrapped banana peel

My mother’s use of Kleenex tissues is almost exponential. In addition to wadding them up and stuffing her pockets and purse, they happen to be her favorite clean-up tool. Without supervision, she will wrap anything and everything in tissues that she wants to throw away (in a rare moment of clarity, she admitted to disposing of her $1,200 hearing aides in this way).

If I just hand my mom a banana to snack on, she will create a little mummy-wrap for the peel before tossing it in the trash. Surely it is a desire to help which fuels this behavior – to be busy helping is in her DNA and it bothers her to be idle. In talking with others who care for a loved one with Alzheimer’s, this behavior is common.

Kitchen Clean-up

Our experience thus far in caring for my mom has taught both my husband and I that it is best to address something that is bothering my sweet momma right away, rather than let her obsess over things. By way of example, we have learned to clear the table right after supper, or she will begin wrapping up everything in Kleenex and use still more Kleenex to wipe out the dirty dishes and clean the table. While my hubby and I clear the table, we enlist her help by offering her a warm, wrung out washcloth so she can feel useful in cleaning up after the “messy people in this house.”

Most evenings Mom wants to help with the dishes. If it’s only a few plates, I’ll let her stand at the sink to dry. It makes me nervous though, because her legs are bowed and pretty unsteady, so we improvise a bit by bringing the dish draining rack to her place at the kitchen table. It takes three dish towels to do it this way: one under the dish drainer, one to use to dry dishes, and one to set the dried dishes upon. It does take more time than if I do it myself, but it makes my mother feel as though she is contributing to the household duties in a meaningful way. You can see contentment in her face as she helps, and that make any inconvenience worth it all.

This Sweet Treat

I sometimes leave a little treat on the kitchen countertop near mom’s chair where she can enjoy ‘discovering’ the snack . Being able to help herself to something yummy gives her a much-needed sense of independence. Very important when, one by one, here a little, there a little, her ability to exercise independent decision-making is being stripped away.

Momma has long since lost the ability to cook; a bit sad since she was such a great cook.  Using an oven or cooking something on the stove-top would be dangerous. Truth is, she can no longer even use a microwave to fix herself a cup of tea or rewarm something she might find in the fridge. Only a few years ago, this amazing woman would cook big meals for her family and friends. Today, Alzheimer’s has left her completely dependent upon us to make sure she has the food she needs for daily sustenance.

I have discovered one secret to being a good caregiver. Wherever possible restore the dignity of making a choice. In this time of life when everyone is making important decisions on your behalf, being able to make even a small decision on your own is vitally important.

My Facebook friends may remember this story. One day, not long ago, I left a cookie for my mom on a little white plate. Mom spied the treat on the countertop and gingerly carried it to her spot at the kitchen table. Everything in me wanted to help her carry it to the table. I let her handle this on her own, but stood nearby and at the ready should she need my help. Mom then plopped herself into her chair at the table. Then, in a sweet, melt-my-heart moment, I watched as she held the cookie between the fingertips of her prayerfully clasped hands, closed her eyes and quietly prayed,

“Thank you Lord for this cookie, this sweet treat. And thank you for this nice place to be. In Jesus name, Amen.”

To: Mrs. Grandma Cynthia

May 14, 2018 – My Monday Morning Musing

Encouragement comes in many ways in our lives. When your world feels a bit small while caring for a loved one with Alzheimer’s, having just a little dose of happiness in the form of an unexpected and very personal gift goes a long way. When the encouraging gift comes from a grandchild, well, that’s incredibly special.

My (not-so-little anymore) namesake granddaughter, Violet Cynthia, presented me with that type of gift yesterday at church. She said, “It’s not a Mother’s Day gift, because you’re not my mother. It’s just something special for you.” Continue reading “To: Mrs. Grandma Cynthia”

Mary Poppins – Still Making Housecalls

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!

Alzheimer’s and Money Worries

One of the things that keeps Momma up at night during her Sundowning episodes is wondering whether she has enough money. She’ll go through her purse countless times in search of cash, a checkbook, a credit card…something. Anything that tells her she is okay financially. Continue reading “Alzheimer’s and Money Worries”

I could never forget you

When you have Alzheimer’s you can’t remember that you don’t need to worry about something. So you do worry. A lot.

Mom worries about such things as whether there is food in the fridge and if she’ll be able to afford the things she needs to live. There is, and she will.

When we have guests, she worries about how they’ll get home in the dark, or where they’ll sleep for the night. She will oftentimes tell our guests that they can sleep in her bed if they need a place to sleep.  Sad, but sweet.

Her worries are usually small ones. She worries every night about whether or not she has a toothbrush. She frets about leaves and twigs out in the yard, or the water on the deck after a rain.

Other times, her worries are big. Her biggest worries are about the future. Just today, she came out of her bedroom with a worried expression on her face and said, “Oh, good! You’re here! Can I ask you a question?”

“Well, of course. What do you want to know?”

With tears playing in the corners of her eyes, Momma said, “So, do they have places for people to go when they’re not able to do anything anymore and are just waiting to die?” She paused for a few seconds, then added, “I mean, I don’t have any money. I can’t do anything to earn any money. Where will I go to die?”

As I have done countless times now, I assured, “Momma, you don’t need to worry about that. You have plenty of money.”

“I do? Well, where is it?”

I assured her that her money was safely in the bank and that her son-in-law was taking good care of it by investing it and helping it to grow. Then I added, “And you are staying here in my home. I will take care of you. You don’t need to worry about how much it will cost.”

“Oh, good! Thank you!” She struggled to point her walker in the opposite direction and said as she shuffled away, “Now, I’m going to go take a nap. I feel so much better.”

I smiled as I watched her slowly amble toward her bedroom down the hall. Then, as if she forgot something important, she turned once again and said, “Now, if you move or go any place, you remember you’re taking care of me. Don’t forget to take me with you!”

“I won’t, Mom. I could never forget you.”

Paper Trails

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.

IMG_0512
From this time on, Brad would be dependent on a wheelchair and never return home.

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.

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Me and my ace record keeper

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.

IMG_0672This 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.