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!

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.

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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.

Seeing Through my Momma’s Eyes

Evenings are challenging at our house. As the sun goes down, Momma gets a little more anxious and fussy.

Maybe I do too.

I’m pretty sure that when I reach the end of this caregiving journey, I’ll have only a few regrets. One of those regrets happened last night.  Continue reading “Seeing Through my Momma’s Eyes”

The Slow Backward Slide

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.

Continue reading “The Slow Backward Slide”