brother – Barefoot Lily Lady

The Hidden Grace of Social Distancing

I’m a familiar face at Oregon Manor Skilled Nursing Facility in Oregon, WI. Normally, I’m in and out of there several times a week, transporting my brother Brad to or from somewhere or another, or just stopping by to bring him a smile and a cup of coffee (and a donut, if he’s lucky).

Things are a bit different now. Now I can’t go in at all.

On Monday, I rang the doorbell to the skilled nursing facility and then waited on their front porch. Tom, the facility’s administrator answered. I told him I was there to pick up Brad for an appointment at the VA. Tom went to get Brad from his room and then delivered Brad and the necessary paperwork with his medical information to me on the front porch. Tom apologized for being unable to let me in, but I understood; it was for the safety of everyone, myself included.

Even purchasing a cup of coffee for my brother was entirely different, somewhat strange experience.

I usually stop at the Kwik Trip just down the road from where Brad lives and pop in to buy him a cup of coffee to drink on our way to the hospital. Brad likes their coffee, so it’s a treat for him. Today I couldn’t pour him a cup of coffee and fix it the way he liked it because they had suspended all of their self-serve food and beverages. No worries, though. Thankfully, an employee, donned in gloves, poured Brad’s Kona dark into the extra-large cup, then added half & half until I said “when” – he likes a LOT of half & half, so “when” took awhile.

Our route takes us through the UW-Madison campus, normally teaming with student activity. Not this time. No students on bikes. No pedestrian traffic. Businesses that cater to student customers seemed forlorn and bereft of customers – some looked closed. Definitely an easier commute, but sad at the same time.

We needed to answer more than the usual screening questions at the VA’s parking garage, which seemed cavernously empty. In stark contrast to my usual squeal of delight when I actually am able to find a handicap parking spot (with my brother giving me the amused side-eye), we were both in wide-eyed wonder that we had our pick of ALL the prime handicap spots today. In fact, ANY spot would have been large enough to maneuver my brother in and out of the car with his wheelchair. It was like a ghost-town.

The procedures for gaining access to the hospital changed too, so as to minimize the risk of infection. There was a designated entrance with closer scrutiny and screening, and explicit directions to use an entirely different designated exit to minimize contact. There was no wait for an elevator (although there was one man on the elevator who protested that we got on it with him); it’s really hard to practice social distancing when you’re in an elevator and pushing a wheelchair.

Checking into the podiatry clinic was different too. A line of blue tape on the carpeting masked off a safe distance from the clinic’s reception desk. Brad and I had the pick of ALL the spots in the empty waiting room in the Lighthouse Clinic’s waiting room, where we normally have to find a spot within ear-shot in a nearby hallway. Very few patients are being seen, but they wanted my brother to come in because he is at great risk for bone infection and they are concerned about the possibility of him losing his big toe. I’d show you a picture, but trust me, you don’t want to see it.

Working with a skeleton crew in their clinic, the doctor himself came out to call Brad back to an examination room. Normally dressed in standard issue scrubs, today he was wearing a mask and had a hospital gown over his scrubs; the gown wasn’t the usual disposable gown made of blue paper, rather the cloth type one wears if they are an in-patient in the hospital — you know, the ones that tie in the back and leave your backside exposed. He carefully examined Brad’s toe, emphasizing how important it was that we get this problem under control in order to avoid amputation. Brad routinely refuses care in his nursing home, so I’m hoping that this frank discussion put a little more cooperation in him. We’ll see.

In no time, we were headed back to Oregon Manor. Arriving at the same porch where I picked Brad up, we rang the doorbell and reversed the procedure. I thanked Tom and Brad’s nurse for all they’re doing to keep residents safe and healthy, assured them of my prayers for wisdom and protection, then headed home.

It’s a beautiful spring day and it was late-morning, so I decided to make McKee Farms Park my destination on my way home. The luscious fresh air is still a little nippy, so I buttoned up my jean jacket and headed to the paved walking path. It’s my custom to pray as I walk. Today I thanked God for the people who, at risk of their own health and welfare, take care of my brother and my mother. Walking, praying, and enjoying the beauty, I couldn’t help but notice how social distancing is evident even here at the park with people keeping the recommended 6 feet of distance between themselves. The playground was eerily quiet, with no children enjoying it, even though they are all out of school.

But you know what? I noticed something else at the park too – something nice. Families. They weren’t hanging out at the playground with the kids running around and parents seated on benches looking at their cell phones. Moms, dads and kids were out walking or riding their bikes together. They were talking, smiling and laughing together. One dad was out there teaching his little one how to ride a bike. Another dad was helping his kids fly kites while mom pulled a little picnic blanket and snack out of her backpack for them. One family was taking a walk ahead of me on the path, and the kids were having fun practicing what we’ve come to know as ‘social distancing’ as they held onto the ends of 6′ ropes.

As I continued my little prayer walk, I thanked God for showing me another hidden grace of this difficult time when we’re being advised to shelter at home and practice social distancing: families truly enjoying this slower pace of life together.

I would love to hear from you! Please share in the comment section below one of the “hidden graces” you have noticed during this crazy time of responding to the COVID-19 crisis.

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.

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 what we would soon come to know was 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.

IMG_1573 (2) — 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.

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.

Losing Ground

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.

Meet My Brother

I’ve mentioned my brother a few times on my blog now, so thought I should reach back in time to almost a year ago where I introduce him on Facebook. I’m Brad’s health care power of attorney but, more importantly, his sister. So, I got involved in my brother’s business when it became very apparent to me that there was more than laziness keeping my brother living as a recluse in my mom’s spare bedroom. No work for 6 years (he’ll admit being lazy at first about finding work after losing a good job). No income and no ability to handle his own financial affairs. Diabetic, but doing nothing about it. No time spent with friends. Just sleeping, eating, smoking cigarettes in the garage, and watching TV.

One day in April of 2015 I announced to Brad that I was taking him to the VA to see if we could get him some help for some very obvious (to me) health problems. He was so sick and very willing to go. That began a year of uncovering and treating several significant health problems – including cancer – multiple cancers, one of which had already traveled to lymphnodes.

With the help of some pretty amazing doctors at the VA Hospital, Brad fought his cancers and won. But the fight was hard on his already frail body. It soon became clear he could not go “home” again. Brad has since settled in nicely in a skilled nursing facility near my home. Visits with the doctors at the Madison VA are not quite as frequent. We continue to routinely screen for skin cancer, treating when necessary. Because Brad is not a good candidate for another round of chemo and radiation, we are no longer actively screening for the return of colorectal cancer via invasive tests and medical imaging. We’re doing what’s referred to as “watchful waiting” – waiting for symptoms of cancer to return and planning to provide comfort care should his cancer return.

Facebook Journal Entry – May 2, 2016

Meet my younger brother, Brad. I would describe him as a generally laid back, genuinely nice guy. Single. Never married. Former trucker. His happy place in life is sitting around a campfire with a few good friends after a day of hunting or fishing. It has been a few years since he has felt well enough to be in his “happy place,” or anywhere besides his bed.

Lately I’ve been accompanying my brother to the VA hospital once or twice a week, sometimes spending an entire day there, depending on how many doctors he needs to see. My heart is filled with compassion for my brother. It has truly been a rough year for Brad. So many ailments and serious health concerns previously identified by the Milwaukee VA (Zablocki) have been addressed. Now, as we transition his care over to the Madison VA, Brad’s new care teams have been getting to know him – one clinic at a time: Retina Clinic, Geriatric Clinic, Dermatology, Oncology, Urology, Podiatry, and Neurology. Brad and I are very grateful for the fine care he continues to receive as a military veteran.

Profoundly grateful.

Today’s appointment was with his new neurologist; a straight-shooter who does not mince words. Nothing was sugar coated. Sometimes I would steal a glance at Brad to see how he was taking the brutally honest information. There was very little in the way of encouraging news today. I had mixed feelings; part of me wanted to cry, the other wanted to hug this doctor for his forthrightness and practical advice.

Brad has battled cancer courageously and without complaint. In this regard, except for some skin cancer yet to be excised, he is doing well. The sad news is that he will never regain the use of his legs. Diabetes and chemo and radiation therapy have taken their toll. No amount of physical therapy will help him regain the lost muscle mass. The wheelchair is, and will continue to be, his everyday companion.

It pains me to see my younger brother living in a nursing home. I want him to live with me and I want to help take care of him, but my house will not accommodate his mobility needs. Due to mom’s physical problems and her declining mental acuity, living with mom is not an option either. Thus, Oregon Manor is his new home.

Mom misses Brad too. Each and every day she hopes he is coming home to live with her. The mom in her wants to take care of her boy. Today, after Brad’s appointment, I brought him to Mom’s apartment for a little visit. Wayne prepared dinner and we sat down to eat together as a family. This meal together brought mom joy and gave Brad a different sort of dining experience than he has in the nursing home. Time with family. Precious.

After dinner and a brief visit, it was time to get Brad back to his abode. Together, we’re getting the hang of this transportation thing. I’m even learning to wrestle his wheelchair in and out of the trunk…not with the greatest finesse, but it’s getting easier. Our ride “home” was quiet. There was a lot for both of us to absorb following today’s visit. With Brad situated comfortably in his room, I left to go spend a little more time with mom. Once in the car, however, the enormity of the doctor’s words today registered in my heart and hot tears began to flow. It was another one of those moments in life where I knew I needed to pray, but the words would not come. But God knew what was on my heart and He heard my unspoken prayer.

The Comforter is here and He gives peace.