I’m a hummer. It probably stems from the fact that I love music, but can never remember all the words to a song. So, I just hum.
Not always, but often. I hum when I’m driving, when I’m walking through the grocery store, when I’m in the garden, or even doing a mindless home-making task.
Sometimes it’s a familiar tune – maybe a tune I heard on the radio or sang in church. A song that just gets stuck in my head and my heart. Sometimes I even catch myself humming the little ditty that my dryer sings when it’s finished drying my clothes. Other times it’s just a little nonsensical tune I make up in my head. Continue reading “Singing in the Rain”
I like to do a bit of cooking and puttering in the kitchen in the first part of the week. I may even do a bit of baking. But, unless we’re expecting company, my fun in the kitchen only lasts until Wednesday or Thursday. That’s okay though. Weekends are made for leftovers. Continue reading “A ‘Grace’ of Alzheimers: Leftovers”
I caught a glimpse of an old friend at the gym today. I don’t think she saw me pedaling away on an exercise bike while she attended a nearby group exercise class. My face immediately smiled when I saw her, then my heart sank with sadness just as quickly. You see, my friend had walked out on our friendship a few years ago. I never understood why.
I still don’t.
I’m usually pretty timid and non-confrontational – but, as I pedaled, I imagined myself boldly giving my old friend the “what-for.” How could she just leave? Never look back? Never say good-bye? Never again tell me that she loved me and cherished our friendship?
Of course, I didn’t really say it.
Today’s ‘disappearing friend’ experience made me wonder about the friends and family who ‘disappear’ from my mom’s life in her world living with the debilitating effects of Alzheimer’s. As her memories fade, recollection of friendships forged over many years vanish too. Some of her dear family and friends still send cards. She loves to receive them in the mail (and will read them over and over again, each time as if it is the first), but she really can’t remember the person who sent the card. Sometimes a tiny glimmer of recognition glistens in her eyes if I pull out old pictures, or show her that friend’s photos on Facebook, or retell a story she once told me about this friend.
Alzheimer’s is cruel. But, I’m thinking it may also be a form of grace in old age. You see, my encounter today with my own disappearing friendship brought up lingering feelings of deep hurt and resentment, highlighting my own need to exercise forgiveness in relationships. With Alzheimer’s, my momma’s hurt feelings last only for a moment. Then she picks up a coloring book and her colored pencils and the hurt just vanishes.
One of the things that I am learning along this road I travel with my sweet mom is that the older memories are the last ones to leave; but, the ability to recount and express these stored up stories does slowly slip away. I find myself wishing I had written down more of the stories that my parents and grandparents told through the years. Continue reading “Before I forget: Sharing Memories”
An old friend recently noted that I refer to my mother as “Momma” in my writings. She wondered whether my mother would prefer to be called “Mom”.
I’m not really sure why I refer to her as “Momma” in my writing, other than it being a term of endearment between us. Most of the time, when I greet her, I say “Hi Mom!” I’ve never really noticed, but would venture to guess that I usually call her my ‘mom’ when I’m talking about her with someone.
‘Momma’ is a decidedly southern term of endearment; two sounds hitched together – Mom+ma. I use the less common spelling of Momma, but you’ll more often see it as Mama – also two sounds hitched together – Ma+ma.
‘Momma’ is not used much here in Wisconsin where I’ve raised my own children. My daughter calls me “Mom” and my son calls me the even more casual, ‘Ma.’ I answer to both without preference for one or the other.
Though my mother has lived in Wisconsin since 1955, she was actually born and raised in West Virginia. In my mother’s world living with Alzheimer’s, her years in Wisconsin have all but vanished along with her ‘accent’ and all but a few words and phrases from her upbringing. In her mind, she is still living in West Virginia. As I recall, most of my cousins call their mothers “Mom,” which to my northern ears sounds more like a slightly drawn out “Mawm” than my “Mahm”. But, oftentimes, when talking about their mothers, my cousins also say “my Momma” too. So, I think it is safe to say it was a pretty common term of endearment for mothers in her earlier years.
All that to say, I don’t really know why I sometimes call her Momma. I just do. It’s the term I use when it’s just the two of us. I hear myself call her that when I tuck her in at night and say “Goodnight, Momma. I love you. See you in the morning.” To which she will usually reply, “Goodnight. I hope I’m here in the morning.”
As I head upstairs to bed each night, I often think, I hope you’re here in the morning too Momma. But, if you’re not, I know you’re in a better place – a place where you long with all your heart to be.
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!”
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.