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!”
Every now and again, Momma says something that makes me get up, grab a piece of paper and a pencil, and write it down. Sometimes I use the quote as my writing inspiration, other times the note gets buried in one of my too-numerous stacks. Today I stumbled upon one such note I scribbled on a scrap of paper more than two years ago.
My mom was still living in her senior apartment and I was camping out on her living room sofa each night. (I’m so glad that those days are over!) It was well after midnight and I could tell Momma was restless and agitated in her bedroom on the other side of the wall, so pulled up an app on my phone and looked in on her via our D-link camera. There she was sitting in the dark on the edge of her bed just looking around. Her back was to the camera, but I noticed she was reaching for tissues every so often, so suspected she was crying.
I decided to go check on her. Sure enough, she was crying…and very glad to see me. I sat on the edge of the bed and, with my hand on her shoulder, asked what was wrong.
“Oh, Cindie! My life is so meaningless,” Momma lamented through a flurry of tears. What have I even done in the past few days? I feel like I’m not pulling my weight around here. I feel useless. Just so useless!”
Just a few short years ago, I would be hard-pressed to find a busier or more productive lady. Her life was filled to the brim with post-retirement activity. Mom traveled every year with my Dad to all of his Air Force reunions; their trips took them to so many interesting places. Mom kept her retired nursing skills relevant, oftentimes accompanying a friend to a doctor’s appointment, visiting someone in a nursing home, or helping someone recovering at home understand their doctor’s orders. When Dad went through surgeries and treatments for any of his five cancers (colon, prostate, melanoma, lung, and sarcoma), she was right there beside him helping him too. My mom was super-involved in her local church – her church family knew they could count on her in any of her various ministry endeavors too.
As busy as she was, she always found time for opening the doors of her home to those in need. Several of mom’s children and grandchildren received help from her (and dad) through the years. If a grandchild needed help earning money for something they “needed,” Mom and Dad always seemed to have a too-well-paying job for them to do. A few of them needed more substantial financial help as they grew older – she was always generous. Some needed a place to stay on the cheap – there always seemed to be an extra bedroom to sleep in (with magic clean sheets every week), and favorite foods in the never-empty fridge.
Momma can’t do any of that anymore, but she really wants to help – to feel useful again. Don’t we all want that?
My sweet mother’s tears reminded me that one way I can be a blessing to her in these declining years of health is to make that extra effort to make her feel useful in her remaining days on this earth.
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.
Back in September, I wrote “The Slow Backward Slide”, chronicling the toll my sedentary lifestyle as a caregiver had taken on my own physical health (you can read that here). As you may recall reading, I took heed to my doctor’s insistent voice reminding me to take care of myself first.
I went home from that doctor’s appointment and asked for a gym membership for my birthday. My hubby’s gift truly has been the gift that keeps on giving as I see each effort I make slowly make small changes in my well-being. Here are some snippets in diary-entry fashion of some of the many things I have noticed since I began paying closer attention to my own physical needs:
9/15/17 – Today was my first day hitting the gym – well, the first day in a LONG time. If I felt a twinge of guilt leaving Momma in Wayne’s care for a couple of hours, it was only momentary. This “me time” was wonderful. Slightly indulgent. Sweaty good. Just right.
09/21/17 – Began taking an exercise class that Jenn (the gym’s manager) recommended. Though my piriformis muscle issue makes some of the exercises painful, I can see that it will eventually help.
10/4/17 – Had the physical therapy consultation that my doctor ordered. Amazingly, the problem I was referred for is clearing up with the exercises I’m doing at the gym. Physical therapy told me to keep doing what I’m doing, gave me one more exercise to add, and sent me home. Yaay!
10/26/17 – As I was taking my class today, it dawned on me that the exercises which brought excruciating piriformis muscle pain a month ago bring no pain at all today. Praise God for strengthening my body.
11/6/17 – Okay, so maybe I need to take the ‘distance’ feature on exercise equipment with a grain of salt. Today’s workout – 13.8 miles covered in 60 minutes. Last week’s workout on a different machine, but same amount of time 20.0 miles. Hmmmm! I guess the distance doesn’t really matter, just so long as I keep moving in the right direction.
11/20/17 – Having a bad body image day today. Ugly crying going on here.
11/21/17 – Hit 15 miles on the exercise bike today!
My husband told the world (well, his Facebook world) that I was beautiful today. For the first time in a long time, I believed him.
11/28/17 – I rode the exercise bike for 15.4 miles today following my Tuesday class. On the way out, Eva at the front desk encouraged me by saying, “You’ve made a lot of progress even since I started working here.” (She began her job at the gym about a week after I joined.)
11/30/17 – I had fun in my exercise class today. Even felt myself moving to the beat of the music. I could only do 7 miles on the bike today due to time constraints, but I felt so much stronger than when I began this journey.
12/1/17 – Realized today that, since October 1, I have read at least six really good books while riding the exercise bike. One of the books I read twice! I’m enjoying exercising both my body and mind.
One of the things I appreciated about my new gym was that it had a theater where you could use any number of exercise equipment choices and watch a movie while you pedaled, ran, rowed or stepped. I watched part of one movie the first day and thoroughly enjoyed it. The next day, however, I brought along a book and found an exercise bike with a book rack in another part of the gym, then read as I pedaled for 30 minutes. Not long thereafter, I began pedaling for an hour, reading as I pedaled.
You’ve probably heard the saying: “You can’t pour from an empty cup. Take care of yourself first.” Before I knew it, I had plowed through a book I had been trying to read all year long, feeding my soul while I exercised by body and filled my proverbial cup.
My brother and I spent our morning and afternoon yesterday wandering the halls of the William S. Middleton VA Medical Center for three appointments. It’s nice to spend a little time with him. My brother is normally a bit reclusive in nature and doesn’t have much to say, but he’s such a nice guy with an undercurrent of humor that takes everyone by surprise, and a belly laugh that just infuses the room with a bit of joy. Yesterday, at each appointment, he found it belly-laughing hilarious to make sure everyone knew I was his OLDER sister.
He may be younger than I am, but I’ve been noticing some subtle changes in Brad lately. For instance, it’s harder for him to transfer from his wheelchair to either his bed or the car. When he goes to the VA Hospital he has to state his name, date of birth, and last four numbers of his social security number quite often. The pauses are getting lengthier as he searches his brain to recall the information. Sometimes he’ll look at me with a “was that right?” look in his eyes.
Brad’s trouble with memory loss is different than Momma’s, in that it is vascular, most likely due to mini-strokes. Brad’s heavy smoking history may have played a significant role in this. We’ve known about the strokes for about two years now, but yesterday, I felt his memory loss was more significant. At 10:00 am he had a vascular ultrasound performed on his lower legs to check to see how his diabetes has affected his circulation to his feet. At 11:20 am, when questioned by the podiatrist about how the test went, he couldn’t recall even having had the ultrasound less than an hour and a half ago. Then, during his afternoon routine retina injection appointment, I noticed he had trouble with following the doctor’s simple directions like “look up and to the left” or “look down and to the right.”
It’s really hard to watch both my mom and my brother losing ground in their short term memories. As difficult as overseeing their care is, I realize I’ve been given both a huge responsibility and an even larger privilege in caring for both of them.
Years ago (I was probably 12 years old), I remember Dad taking me aside when Brad was having an especially hard time with his school work, telling me, “Be nice to Brad. Try to help him out. Everything is just a little harder for him.”
I think my Dad would be happy to know I was listening.