The Morning Sky and My Porch

Finally, I have five minutes to write. I'm sitting outside on my porch, rocking in my lovely turquoise blue glider, surrounded by twinkling red, blue, green, and yellow lights, and sipping a cup of hot Starbucks coffee. In the distant sky, I see one lonely star. At first, I thought it was a plane, but no, it doesn’t move. It's sitting there bold and shiny, as if it's telling me, "You might be all alone, but you're bold and mighty."

A dark, ominous cloud rises up like a ferocious grizzly trying to grab the star from the sky, but no luck. The wind pushes the ugly cloud further and further away, as if saying "Stay away from my star." 

The star blinks back at me, "See, you can do it. Be brave. Keep pushing on. I haven't given up on you. You have a job to do."  

A cool breeze gives my skin a gentle hug. Sea birds soar across the sky as the sun begins to peek over my apartment building. The dark clouds are gone, but the star is still there, growing fainter as the sun brightens the sky, but it's still there. 

"Whether you can see me or not, I'm still here," it whispers as it fades into the pink and blue morning sky.

I'm stronger today, simply because I sat on my porch. . . 

The New Wheelchair

I was supposed to visit Bill yesterday, but the heavy rain kept me home. So, I went today instead. I’d been anxious to see his new wheelchair since the VA called to let me know it had arrived and that Bill was already using it.

This wheelchair is the Mercedes-Benz of wheelchairs! It has everything he needs including a comfy, padded seat, custom made to fit Bill's large frame, a padded headrest, and even shock absorbers of some kind for a smooth ride. 

I was able to wheel Bill around again, something I haven’t been able to do for quite some time because of his feet. One foot had locked up behind him which made it extremely difficult for the anyone to push him around. The locked-up foot hung behind and under the chair, causing Bill a lot of pain when he had to be moved. But now, his poor feet, which were so twisted and uncomfortable, are now gently straightened out again thanks to the custom footrests on this new chair. 

He seemed so much more at ease today—no repeated “help me, help me.” Maybe he was trying to tell us something all along, and we just didn’t realize how much he was hurting from sitting in that chair. He actually looked better than I've seen him in months. He even smiled once and spoke a few more words than usual. I don’t think he knew who I was, but that smile? It was golden.

He’s having more trouble eating now and needs help feeding himself. They’re pulverizing his pills and spooning them in with some kind of pudding. I brought him his favorite Coke, but he only drank two sips. That was unusual for him. He used to love a Coke. 

After I wheeled him around the complex for a while, he asked to "go home." I took him back to the Memory Care unit where they served snacks and tried to involve the residents in activities. Bill ate some Fig Newtons but wasn't interested in participating in the activities. Finally, he drifted off to sleep, and I left.  

All in all, it was a great visit. That new wheelchair is a game-changer, and I am SO THANKFUL to the VA for providing it. I can’t imagine how much it cost, but even the nurses said it was worth every penny to see Bill so much more comfortable. 

After I left Bill, I was so happy I decided to treat myself to an adventure. I went to lunch at the Hobbit Café in Houston – what fun! A friendly customer who eats there all the time gave me the "low down" and took my picture! For lunch, I had Rohan Chicken Enchiladas. I didn’t realize it when eating it, but it had some heat. So, I had to get the Carrot Cake for dessert to cool off my tummy! (I ended up taking it home – too much food!) If you've never been to the Hobbit Care, you need to go. It's a fun adventure and very popular. By time I left, the parking lot was full. 

 

After that, I went to Trader Joes. I wanted to eat first so I wouldn't buy everything in the store! I love that place. They have so many unusual goodies. Today, I bought Indian Style Flatbread, Fiberful Granola Bars, Soft and Juicy Mango slices, a huge box of strawberries, and some beautiful Shitaki mushrooms. I also got Shelly some of their delicious corn and chili salsa. 

After I got home and unloaded my groceries, I grabbed up Oreo, and we delivered the salsa to Shelly. We had a nice visit – all five of us (Shelly, me, Oreo, and her two cats: Samwise Winchester Downes and Lady Galadriel Skywalker Downes). Shelly always has had elaborate names for her cats but ends up calling them many other names over their lifetime! Currently, they get called Sammy and Moppet. 

A very nice day. . . I think I'll sleep peaceful tonight. 

Numb? Angry?

Today, I feel numb. 

Bill is getting less and less communicative and more and more distressed. Today was almost scary. He doesn't know how to tell us what's wrong. In fact, when asked, he says he's not even sure what is wrong. But he keeps screaming "help me, help me." Eventually, I finally figured out he wanted to lie down. He cannot move himself anymore, so I called the nurse in. She came with two others to help get him into bed. That was a feat! 

The Hoya lift hurts him and in the midst of the transfer he started striking out, hitting one of the nurses twice in the face. He also began cursing which is so unlike him. Then he would say, "I'm sorry, I'm sorry." 

He knew what he was doing was wrong but didn't know how to stop himself. I ended up grabbing his hands to keep everyone safe while they finished getting him into bed. They gave him something for pain, and eventually, he settled into sleep. 

I did cry today, more than I wanted to, but I also feel numb. I feel frustrated that I can't alleviate his suffering. Watching him cry out in pain and distress like that makes me angry too. Why can't we do more? Why don't we do more? We treat our animals with more dignity than we do our loved ones. This should not be. I feel so helpless. . . and with no answers. 

Thank you from the bottom of my heart . . .

I just want to say THANK YOU to my family and friends. As I read through my journals from the past several years in preparation for creating one of my own, I am reminded of how much I leaned on my children, Wil and Shelly, especially before and during COVID while taking care of Bill. They put up with so much! Looking back now, I realize how difficult it was for them as well. At the time, I was in such a slump, I couldn't fully see the impact it was having on them. 

Another hero of mine is my cousin, Debbie. Even though she lives in New Jersey, she was a lifeline to me during the hardest days of caregiving. I spent countless hours on the phone with her - often in tears - as I tried to cope with the daily frustrations of taking care of Bill at home. 

After COVID lockdowns ended, I finally began connecting with people in Galveston. Dan was the first friend I made here, through our local caregivers support group. He's become the person I turn to - someone who truly understands what I'm going through. Like a big brother, he's traveled this road ahead of me and now guides me through one of the hardest times of my life. Every caregiver needs someone like Dan. 

When I started going to OLLI, the first friend I made was Marilyn. She invited me to lunch, introduced me to others on the island and encouraged me to have fun, something I hadn't had in years! Soon after, I found my writing buddies, Debbie and Lori. They listened patiently as I poured out my struggles and whined about my life through the written word.  

Today, I'm surrounded by so many wonderful people who help me through both the the good days and bad. I won't even try to name you all - you know who you are! Just know that you are deeply appreciated, more than words can express. THANK YOU again from the bottom of my heart.

Caregivers Must be Selfish to Survive by Dave Nassaney TEDx Talk

 This is important information for caregivers! 

An Emotional Day . . .

Today, I got the stitches out from my trigger-finger surgery. Everything went fine; although, I still have limited use of that hand. But I'm one step closer to "normal." That was my first stop - UTMB in League City.

After that, I headed up to Houston to see Bill. My friend, Oma, offered to drive, but I decided to go by myself as I had too many errands to run along the way. As long as I don't lean on the pads under my fingers I am fine. Thankfully, the traffic wasn't too bad. 

When I got to the VA, they had just put Bill down for a nap. I saw the nurse pushing the Hoyer Lift out of his room and went in. Bill was fast asleep. Valerie, my favorite nurse, said he wasn't doing too well today. He had gotten up way too early and started crying out, more and more agitated as the morning wore on. They got him cleaned up and fed, then settled him back in bed. He immediately fell asleep.

I sat on the floor by his bed and started rubbing his forehead. hoping he might stir. After a while he said softly, "Whose there?" 

"Cindy," I said. 

He replied, "My wife." 

At that, I began to cry, silently. He knew who I was! For just a second, I let myself think, "Maybe he's getting better!" But of course, I know better. That is not going to happen.

I silently wiped the tears away because I didn't want him to see me crying. I didn't have to worry, though, because he immediately went back to sleep. I stayed a little longer and then left. 

Back to the parking lot, I sat and let myself cry some more. Then, I called Oma. Today was Oma's day (though she didn't volunteer for it!). I'm so lucky to have my "support team" -  my kids, my cousins, and my wonderful Galveston friends. I know I can always call one of them and have them talk me down so I can safely drive home.

On the way home, I stopped at Chico's and bought a red shirt for my "debut" as a "bell ringer" at the First Presbyterian Church this Sunday. Shelly's co-worker and friend, Janene, invited me to join. We're supposed to wear red, so now I'm all set.

Last stop was Sam's Club for groceries. I like to stock up on fruit there. I got apples, pears, bananas, and plums.

Now I'm back home curled up with Oreo. I'll relax a while, then play some piano. That always cheers me up. 

FDA Approves Blood Test to Help Diagnose Alzheimer's - May, 2025

Doctors say the test could help individuals who are experiencing symptoms get an earlier diagnosis 

For Information: https://www.aarp.org/health/conditions-treatments/fda-approves-alzheimers-blood-test.html?cmp=EMC-DSM-NLC-OTH-DLY-247401-320001-9283256-NA-05202025-TheDaily-MS2-NA-BTN-CLKBT_A-Health&encparam=3z218eR1rOT9wyj5i3uObA==

A Special Day with My Two Williams!

Today was a very good day. Hooray for May! 

I drove to Houston today to visit Bill. Our son, Wil, was there, too, as he'd made the trip from Austin, yesterday, to see his dad. He is staying in Houston for a few days so he can visit his dad more than once. That made the day even more special – I got to see both of my Williams at once! 

When we arrived, Bill was fast asleep. It took some coaxing to get him fully awake, but the promise of a strawberry filled donut did the trick! Once he was awake, Wil gave him a shave, and I gave him a haircut.

They were having a Cinco de Mayo celebration in the Canteen today (on the Assisted Living side of the care home), so one of the nurses invited us to join. Bill had a good time! Someone handed him a maraca to use, and he loved it! For the next 30 minutes, he shook that maraca and smiled like a little kid with a new toy! 

It was such a gift to see him relaxed, peaceful, and having fun. Today was definitely a good visit. 

Afterwards, Wil and I went to eat a a delicious restaurant in Houston called, Postino's. What a treat that was! Look at this delicious food we had! 

Chicken and Beef with Tahini

Beef Panini and Onion Soup

And finally, more good news! The VA called with an update on the wheelchair. Instead of having to transport Bill back to the VA hospital (a major ordeal), they're sending the wheelchair vendor to him at Richard Anderson. That is such a relief! 

We're getting closer to having a new wheelchair. I just have to wait for the vendor to call to schedule an appointment for me to meet them at Bill's memory care facility. Fingers crossed that it won't be long. 

Yes, this was a good day! 

Resilient, Whether I Like It or Not

April has been a struggle. Between issues with Bill and my own health, it's been one challenge after another.

First, I came down with a respiratory illness that kept me coughing for almost three weeks. Just as that was starting to clear up, I got conjunctivitis. Then a UTI. Once all of that finally began to heal, I still couldn't get my strength back — I was just tired all the time.

A talk with my primary care doctor uncovered the problem: she had lowered my thyroid medication based on recent bloodwork but hadn’t considered that I was also taking B12 supplements. I'd been on the same dose for twenty years! Once she realized, she promptly increased my thyroid meds back to my regular dose.

Slowly, my energy started returning. Feeling optimistic, I decided to go swimming yesterday. I did great in the pool — but when I got out, I slipped on the wet pavement and landed flat on my chest and ribcage, knocking the breath right out of me.

Luckily, a couple of UTMB resident doctors happened to be nearby. They rushed over, helped me up, and got me back to my apartment. They strongly suggested I head to the ER — and I did. Thankfully, no broken ribs, no lung damage. Just badly bruised muscles. It’s pretty tough getting around, but I'm powering through.

The ER doctor told me that with my osteopenia, I was lucky nothing was broken. He even called me "resilient." Where have I heard that before!?

It’s also comforting to know there are so many medical folks living in my apartment complex. They even gave me their personal numbers so I can call if I need help. A definite advantage! 

This morning, I got up, got dressed, and decided someone else needed to cook me breakfast. I headed to America’s Kitchen for a pancake breakfast! After that, I’m off to UU service and then to the symphony.

I'm not letting this keep me down!

Shelly to the Rescue! A Day at the VA

Wow, what a day! 

Background: 

Last week, Bill's care team and I agreed he needed a new wheelchair. Since he's a vet, the VA will provide one, but there were hoops to jump through. To qualify, Bill had to be seen by a Primary Care physician at the Michael DeBakey VA Hospital in Houston. Because I can no longer transport him myself, his caregivers at Richard Anderson Veterans Home (RA) arranged the transportation. 

Thankfully, since Bill had been seen at the Galveston VA within the past three years, we didn't have to go through the process of getting him admitted. However, we had to transfer him to the Houston facility so that I could use RA transportation. The process involved contacted VA to make the transfer. It took three phone calls and two days, but I got it done and asked for an appointment. When they said I could have an appoint "next week," I was flabbergasted and took it, not thinking about the fact it was 1:30 in the afternoon. 

The Appointment: 

I knew it would be a challenging day, so I asked my daughter, Shelly, to come with me. Despite a crushing schedule - writing three graduate papers, teaching five classes, supervising adjuncts, and conducting meetings, she said yes.

At first, things went surprisingly well. Bill was calm, more at ease than I'd seen him in weeks. He enjoyed the ride and being outside. Though he didn't quite recognize Shelly, there were flickers of moments when he seemed to realize she was his daughter. He forgot my name but knew I was his wife. For much of the day, I think he thought Shelly and I were part of the RA team.

The RA transport dropped us off at DeBakey and we located the Primary Care office without any problems. That appointment lasted an hour and a half. It was now 3:00 p.m. 

Next, the doctor sent us on a VA scavenger hunt:

• To the social worker to drop off paperwork

• To Physical Therapy to schedule the wheelchair evaluation

• Then to the lab for bloodwork

By 4:00 p.m., Bill was getting restless and agitated. I called RA for a ride back and we waited outside.

The Meltdown:

While we waited, Bill slipped into full Sundowning mode – agitated, confused, and frightened. He tried to undress, yelled for help, and attempted to get out of his wheelchair. Shelly and I tried to distract him and calm him down, but nothing worked. We waited 40 extremely long minutes. 

The Ride Back:

Once on the van, things escalated. Bill became even more frightened and violent, his eyes wild with panic. He was lost in a terrifying world – yelling about saving the kids and keeping them off the street. His car had been stolen, and the parts were hidden in the trees somewhere. Crazy drivers were going to hit us. His days as a police officer came flooding back in a nightmare-like haze. He was convinced that we were all in danger and he couldn’t protect us.

We worried he might lash out at the other veteran on the van, also in a wheelchair and locked in. Then, Shelly realized he was trying to pray; so, she went into "preacher" mode and began guiding him in prayer. For the next 30 minutes, she had him praising Jesus and asking for his protection. Her calm voice cut through his fear, and slowly, his violent edge softened. It was still touch and go the whole trip, but her steady presence made all the difference.

I called ahead to RA so someone could meet us at the door. I knew it was going to be difficult getting him off the van. Sure enough, he locked his arms to avoid being put on the lift and began screaming, "You're going to drop the children. Stop, stop! Don’t drop the children."  

Four of us managed to coax him down the lift and out of the van. The RA nurse, Valerie, stepped in to take charge. She's so good with him. I've seen her magic before. We left Bill in her capable hands and drove home - shaken and exhausted. 

What I learned: 

Never schedule late appointments again! I should have remembered Bill's worst times are in the afternoon when Sundowning takes hold. Being in unfamiliar surroundings and exhaustion sets his brain on fire. 

To him, the danger was real. His world is a mixture of his past, the unknowns of the present, and the demons of the Alzheimer's disease itself. He felt helpless because he couldn't protect himself or get us to understand the danger. I cannot imagine the terror going through in his mind. 

We'll have to return once more to have him evaluated and measured for the wheelchair. I will insist on the earliest appointment possible! If it weren't critical that he have a better wheelchair, I wouldn't take him back at all. But he does; and, unfortunately, they won't come to him. 

Thank You, Shelly:

I don't know how I would've managed without her. She not only helped calm Bill, but she also made sure I heard what the doctor was saying (my ears are stuffed up from my recent illness) and took notes on what we had to do next. She's my hero! 

It was a long hard day, but having my daughter there was a huge comfort and a lifeline. It makes me realize how blessed I am. Many caregivers have no one to help them and no VA to help pay for the care. I pray that our legislators will someday soon find a way to help these folks. In the meantime, if you know someone going through this, reach out and give them a big hug today. Sometimes, just knowing people care can get you through the day. 

NOTE: 

Please do NOT use this experience as a reason to comment here and tell me how wonderful god is for helping us get through this day. I'm not interested in a god who allows someone like Bill, who actually believes in and love god, to go through such a horrible disease. Prayer was only a technique to help Bill get through his horrible day. Please keep your religion to yourself, and thank you for respecting my wishes. 

Ref: What is Sundowning? 

 

PT for Bill - A Good Visit

Today, my visit to Bill included watching him get his PT. They are trying to keep him mobile and make him more comfortable at the same time. He's leaning to the left and hunching which is hurting his back, hips and legs. First, they made him do some arm work. He is, and has always been, good at arm work. 

Then, on to the legs, which are his biggest challenge. The therapist did some stretching of his legs first. I was very impressed with her technique and kindness. He continues to yell, "Help me, help me, oh please help me." throughout the day, including during PT. When they ask him questions, he answers appropriately; then goes back to his "recording." 

It was decided that they need to place some cushions under his butt and next to his left side to position him better in his chair. That was a feat! It took three ladies almost 20 minutes to get it done, but they did. They calmly talked him through each step as he repeated, "help me, help me" over and over again. Again, I was impressed with their ability to handle him. They were firm, but kind as they "encouraged" him to do what needed to be done. 

By the time we got back to the memory care unit, he was exhausted. He immediately fell asleep in his chair. I waited awhile, hoping he'd wake up; but no, he's was out for the count. I finally left, grateful that he was comfortable, at least for the moment.

All in all, it was a good visit. I was able to observe how the PT staff work—not just with Bill, but with other patients too. Their professionalism and kindness stood out. 

We also discussed trying to get the VA to provide him with a custom wheel chair. That’s my next goal. Navigating the VA system isn’t easy, but I’m determined to try again. 

Interestingly, this is a VA Memory Care facility (Richard A Anderson Texas State Veteran's Home), but it's been privatized. And, the company that runs it and the VA don't communicate! So, I’ll need to make Bill an appointment at the Michael DeBakey VA hospital, where VA doctors can evaluate what kind of wheelchair he qualifies for. The RA Anderson Home will provide the transportation; I just need to meet him there.

So, here's to keeping my fingers crossed that it won't take an act of congress to get what we need!  

Battle Buddy

 A new app from the VA to make it easier to find resources - Battle Buddy. It can be downloaded on the Apple App Store or Google Play. 

Prompt: What is Life Teaching you Right Now?

My prompt for the day was: What is life teaching you right now? How are you handling this test?

Without thinking about it too much, this is what I wrote. I think it sums it up pretty well even if it's not that well written!

Life is teaching me to take one day at a time. Plan, but be flexible. Resilience is the key. Keep my goals high, but "roll with the punches." Life throws a lot of curve balls.

Make each day the best it can be. If my circumstances warrant, I'll enjoy an extra treat or spend my money on myself. If not, I can go out and enjoy the free things in life: nature, friends, and libraries. I can also use up all the "stuff" I've already accumulated.

Finally, life teaches me that winning the battle does not win the war. Let it go, is my motto. The Universe is going to work it out the way it wants. I will adapt and find ways to make my new world better. 

Distractions from a scary world. . .

Today's visit to Bill was better in that I knew what to expect and I'm learning how use distractions to deal with it.

Bill's in a new phase of this disease where he can express himself for a short bit; then he starts cycling through with the same phrase, over and over again. "Help me, help me, oh please help me."

After making sure he was OK, I decided to try distracting him. I asked him if he would like to go on a vacation. He smiled his big "cheesy" smile and his eyes lit up like a child's at Christmas. So, we began to talk about our vacation. We're going to go to the Redwoods in California and take many magnificent photos. "No, I won't forget to pack up your cameras for the trip," I assure him when he asks. 

We'll walk arm-in-arm straight through the middle of one of those gigantic Redwood trees just like we've seen in pictures! 

Then, we start talking about flying to Hawaii to take that honeymoon we never took. We talk about the mountains we'll have to cross to get there, the plane ride over the ocean, and the fact that his mother graduated college in Hawaii. 

Our little "fairy tale" vacation kept him occupied for quite a while; then it was back to "help me, help me, please help me." But I was happy. Bill had a few moments of pleasure, even if it wasn't real. But then, what is real to Bill right now?

After our visit, I had a meeting with his medical team. It was a productive meeting. They answered all my questions; we discussed hospice, palliative care, and a new plan for his pain treatment. They are now adding regular pain meds throughout the day and before he goes to bed. At this time, he does not need hospice or palliative care. He is still eating, hasn't lost any weight, and has no major health issues. The VA does everything that hospice or palliative care would do at this stage of Bill's illness. My main goal was to make Bill more comfortable, so I feel that we accomplished that.

The hardest part about the meeting was when I asked them about the repetitive "help me help me." They assured me that this behavior is one of those things that happens to some Alzheimer's patients as they get closer to the end. Some scream, some whistle, some repeat phrases. And, as one of the nurses reminded me, "It's only going to get worse." My mind heard that, but pushed it aside.

I came home and crashed on my bed thinking about how Bill's face lit up when talking about the vacation he will never get. Then, I remembered what the nurse said - that it was only going to get worse. "How will I get through this?"

I reached out to my two friends, Bev and Carol. They let me cry til I had no more tears to cry. Then, they distracted me with a crazy personality test where I "discovered" I was bossy, judgmental, and an extrovert. It made me laugh and my eyes lit up, just like Bill's.

Just as my friends distracted me from the scary thought of watching Bill as he deteriorates, I must distract Bill from the very scary world he's living in. 

On my next visit, perhaps we'll go on a cruise to Alaska or take a road trip to Montana. We've never been there. . .

Writing Practice - Poetry

One of my goals in life is to improve my writing. As a journalist, I tend to write concise and to the point. I'm trying to add some "life" to my writing. 

With that goal in mind, I recently purchased a journal called, "Write the Poem." Each day, it provides a theme and eight, word associations. Today's theme was, The Ocean. The word associations were: billows, deep, brine, offing, wave, flux, tide, and current. So here goes my attempt at poetry:

The Ocean - image created by Ai

The Ocean

The ocean is deep, 

With waves that billow

And rage across the miles.

Brine floats in the air

Filling my nostrils with the perfume of the sea.

Wave after wave crashes against my raft

As I float…

Drift…

Bob…

Weave to and fro.

The tide moving me onward

To an unknown destination

Like the currents of life.

I try to control them

But I can't.

Downsizing-A Memoir

Recently, I was invited to teach a class on downsizing at OLLI. My first reaction was, "What do I know about downsizing?" Many OLLI members own multiple properties, expensive antiques, and have well-established networks for passing things along. Me? I’m a middle-class woman with everyday stuff. I have no grandchildren, and most of the possessions I have, my children do not want.

Then, I began reflecting on all the downsizing I’ve done over the years. I’ve moved from a large home to a small ranch, eventually selling everything we owned to live in a 33-foot motorhome. I transitioned from a 3,000-square-foot house—where we lived for more than twenty years—into independent living, then later from a spacious apartment to a very tiny one. I’ve held my own estate sale, cleared out my in-laws’ century-old Victorian home, and sent its contents to auction. Along the way, I’ve stored belongings, passed some to relatives, donated much to charity, and sold the rest.

Maybe I do know a little bit about downsizing...

My first real downsizing adventure began in the 1980s when my husband, Bill, took an early retirement to pursue a master’s degree in photojournalism. At the time, we lived in a beautiful custom-built, two-story brick home on an acre lot in Delaware—about 2,800 square feet. 

Our dream home being built. the one in middle.

Christmas in our Delaware home.

Moving to a three-bedroom ranch in Virginia Beach, half the size, required shedding a significant amount of our belongings. We stored some of our nicer things at my in-laws’ and gave away what we couldn’t take. Other than the sadness of leaving my dream home for a rental, it wasn’t a difficult move.

Three months later, everything changed. Bill’s father passed away, leaving my mother-in-law, Marilyn, completely unprepared for independent living. Her husband had managed all the finances, done all the driving, and taken care of the shopping and cooking. So, with two kids in tow, I moved in with her while Bill remained in Virginia Beach to finish his degree. Every weekend, the kids and I made the 17-mile trek across the Chesapeake Bay Bridge and tunnels for visits.

Our 33' motorhome parked at a friend's house.

What was supposed to be a short stay stretched into months. Eventually, we cleared out the rental, sold or gave away much of our belongings, and moved Bill into a 33-foot motorhome while the kids and I stayed in Delaware.

Perhaps motivated by the fact that there were now two bosses in the house—or more likely, the presence of my two energetic children who discovered the bomb shelter in her basement, loved exploring her antiques, and encountered a nude sunbather in her backyard—Marilyn eventually gained her independence. The kids and I were headed back to Virginia Beach.

“How are we going to fit in the motorhome?” my pragmatic son, Wil, asked.

“We’ll find a way,” I said, with more confidence than I felt. “It will be an adventure.”

Truer words were never spoken. Our adventures were many, including burying a cat under the Yonkers Raceway, getting stopped for speeding in the middle of the Buffalo Mall, and avoiding a drug bust in Canada—but those stories will have to wait for another day.

Shelly, Wil, and Bill "dining" in the motorhome.

Bill studying for his Masters Degree

After Bill’s graduation, we moved to Pennsylvania, where he took a job at Teen Challenge, a farm that provided job training for former drug addicts. The organization offered staff housing, but “housing” was a generous term. Our home was a dilapidated trailer with crumbling wood paneling, worn-out appliances, and the constant aroma of cow manure.

Wil, my keyboard player, asked where he should set up. “Easy, just stick it in the closet and swing open the bifold doors when you’re ready to play,” I replied. I had bigger problems to worry about, like dodging the rotted hole in the middle of the hallway, cooking on a stove so rusted it belonged in a museum, and greeting the occasional 6’5, 350-pound ex-con dropping by to ask for my husband. We were doing “God’s will,” so I powered on.

During our time in Pennsylvania, Bill’s mother passed away, and we returned to settle her estate. Her Victorian home was packed to the rafters with antiques, newspapers, and the aforesaid bomb shelter full of rusted canned goods that were now leaking all over the floor. It took an entire dump truck just to clear out the trash. We kept what we could and sent the rest to auction.

The Downes family home.

In 1991, Bill accepted a position at a large church in Tulsa, Oklahoma, where he could use his photojournalism and computer skills. Real estate was affordable, so we purchased a nice, 3,000 square foot home in Broken Arrow. We spent the next twenty years filling it with furniture, books, and the many other treasures that accumulate during married life.

My porch backed up to a lush greenbelt in Oklahoma.
Deer, raccoons, beavers, and other wild creatures were constant visitors. 

Then, in 2008, Bill’s health began to decline. He mysteriously lost vision in one eye, then the other, a precursor to his Alzheimer’s. He was forced to quit work, so I returned to college, finished my degree, and took a teaching job.

By 2014, I was handling everything—working, driving, cooking, cleaning, yard work, finances, and caregiving. Exhausted, I decided to downsize from our 3,000-square-foot home to a 1,200-square-foot cottage in an independent living community. With the help of friends, I organized an estate sale, raising $8,000 to help with our new medical expenses.

Oreo enjoyed chasing squirrels at our Independent Living cottage.

Independent living was supposed to lighten my load, but Bill’s struggles intensified. The man who once graduated magna cum laude was no longer able to operate his iPhone, a TV remote, or even a washing machine. It was time for me to stay home and care for him full time. Without the extra income, we had to move again—this time into a two-bedroom apartment.

The VA diagnosed him with memory loss in 2019, and by 2020, I was breaking under the strain. My children insisted we move to Galveston to be near my daughter, Shelly. That move, in the midst of COVID and with Bill’s full-blown Alzheimer’s, was one of the hardest. But no downsizing that time—just survival.

The real reckoning came in 2022 when Bill needed nursing home care. I couldn’t afford both his medical expenses and our apartment, so I sold nearly everything we owned on Facebook—keeping only what would fit into a 725-square-foot space. This was the most challenging downsize I had ever faced, both practically and emotionally. I lived there for two years.

Living room, dining room, kitchen, craft room: All in one! 

Eventually, I secured Bill his VA benefits, so he’s now in a Veteran’s home with memory care. With our income freed up, I was able to move into my current, beautiful, 1,200-square-foot apartment in fall of 2024.

My new apartment!  Big living room. 

Separate craft room.

And a beautiful kitchen!

As you can see, I’ve upsized and downsized quite a bit in my life. And I’ve learned a few downsizing tips along the way. But the most important thing I’ve learned? It’s just stuff. Letting go of your possessions isn’t losing—it’s making space for what truly matters.

Today's Visit-A Downward Progression on the FAST Scale

I’m definitely seeing downward progression in Bill. Each week, he communicates less and less, replaced by more and more repetitive speech. Mostly, it’s “Help me, please help me.” The nurses say he does this constantly now. When I stop him and ask, “Bill, tell me what’s wrong,” he just says, “I don’t know.” Sometimes, he’ll start saying it in the middle of a sentence, as if his mind is stuck in a loop. If I distract him with a photo of the kids or Oreo, he’ll smile—but then, almost immediately, he returns to the refrain: “Help me, help me.” He even says it while they feed him. It’s relentless.

The changes in him are stark. He can no longer stand or walk. He tilts his head like it’s difficult to hold up. And now, this loss of meaningful language—it all points to him progressing toward Stage 7 on the FAST (Functional Assessment Staging Test) scale for Alzheimer’s. I had to look it up again. This is the scale used to determine treatment plans for Alzheimer’s patients. Once they reach Stage 7, they qualify for hospice care. This stage can last anywhere from six months to two and a half years, depending on other health conditions. Since Bill is otherwise relatively healthy, he may stay in this stage on the longer side.

When he does speak, he asks to go on a ride. He wants to be in a car, to go somewhere—anywhere. And I so badly want to take him. But I can’t. I can’t get him in and out of the car by myself. If he needs the bathroom, he requires a lift to help him up. He wears incontinence pants, but until recently, he still wanted to try using the toilet. However, I haven’t heard him ask to go on my last two visits, which is unusual in itself. He was asking to go every 10-15 minutes.

The thought that he may never go on a ride again makes me so sad. I need to see if I can make it happen, even just once more. Maybe I can hire a caregiver to go with me, even if it’s for just 30 minutes. I’m going to look into it.

Today was another rough day. And I know it’s only going to get harder. So if I call you up just to cry for a bit—thank you for listening. I’ve done that to my kids and several friends. Please know that it helps. And I’m grateful to you for listening. That's all I need, is for someone to listen. 

The FAST Scale:

My 75th Trip Around the Sun (Memoir)

February 22, 2025, marked the completion of my 75th trip around the sun—and what a journey it has been! Like everyone, I’ve had my share of good days and bad days, but this particular Saturday was unquestionably one of the good ones.

I celebrated my 75th birthday surrounded by my daughter, Shelly; my son, Will; my cousin, Debbie; and more than two dozen friends from the Galveston area. I hadn’t had a birthday party since elementary school, so I decided this one would be special—one to remember.

I rented the Club Room here at GYB, handcrafted a special shirt and party invitations, and took on the challenge of catering it myself, with Shelly’s help. The menu was a feast: homemade quiches, hash brown casserole, bourbon-glazed little smokies, yogurt parfaits, fresh fruit, a charcuterie board with homemade bacon jam, lemon blueberry muffins, bagels with cream cheese, and a birthday “cake” made of coffee cake. Shelly kept the mimosas flowing, and everything came together beautifully.

My friends Bev and Carol took charge of decorating, while Shelly and Debbie finished up the food prep in my apartment. Will became my unofficial “secret service agent,” tracking down my keys every time I lost them—which, in my excitement, was often. Oma arrived with balloons and beads, handing them out to guests as they arrived. Meanwhile, my friend Debbie (from Alvin) played photographer, capturing all the special moments as people trickled in beginning at 9:30.

The party was everything I had hoped for—a warm, lively gathering that celebrated not just a birthday but the life I’ve built here on this island. When I arrived in Galveston in the middle of the pandemic, I knew no one. But slowly, friend by friend, my world expanded. Now, I’m surrounded by a wonderful, eclectic mix of people who brighten my days and enrich my life.

I am one lucky 75-year-old!