Grief is strange. Not at all how I imagined it.

For instance, I’ve developed an aversion to going into Houston. I didn’t realize it until a friend suggested we visit a museum downtown. The thought set me into a panic, but I didn’t know why.

In the middle of the night, I woke and realized I can’t go anywhere that connects me to Bill’s memory.

I tried to drive through Houston the other day to reach the north side and visit his memorial site. I went the wrong direction. I hit roadblocks. Someone nearly hit me and it began to rain. It was as if the was universe was saying, “Don’t go there right now.” So, I turned around and came home. 

Grief has paralyzed me from traveling to Houston. 

My cousins wanted to visit me in April – something I’d looked forward to since I moving to Galveston. We began making plans. Then they called to confirm dates before booking travel and I panicked. I couldn’t do it. Why? I’m not sure. It just felt overwhelming. So, I told them not to come. 

Grief has paralyzed me from enjoying company from out of town. 

When Bill first passed, 90% of my income stopped. I was sure I’d end up on the street. I began looking for a job, cutting expenses, and reading everything I could about saving and investing. 

Should I leave my beautiful new apartment?  Stay here and get a job? Start a home business? Maybe I should move somewhere cheaper – off the island or even out of state? 

Now, almost two months later, I see my finances more clearly. I am financially strong. I have less, yes, but it’s more than enough for my needs. There’s no need to panic. I can stay where I am and enjoy a good life.

And yet I woke in the middle of the night worrying about spending too much money on a Sam’s Club order and how I could return it on my way to see Bill. 

Oh, I don’t do that anymore. 

Grief has paralyzed me from thinking logically.

They tell me this will gradually pass, and I believe it will. In the meantime, I have a message that pops up on my phone every day, “Don’t make any decisions.” 

So that’s what I’m doing—making no big decisions. Taking one day at a time. Waiting for my heart to heal. 

That’s what grief is. 

How long does grief last?

I’m grieving today. . . 

I thought I’d get through this quickly; after all, I’d been grieving for years. But that grief was tangled with everything else that came with being a caregiver: worry, stress, resentment, fear, sadness, and loneliness.

Now all that remains is sadness. Loneliness. Anger at myself for not being a better wife. Regret that we never got to enjoy the retirement we imagined.

When my thoughts return to him, they go back to our early years of marriage, when life felt expansive—our travels, our closeness, his gentle care for me, and my joy in taking care of him: cooking his favorite foods, making a home he was proud of.

I remember the long drives across the country, stopping at small diners, searching for out-of-the-way bookstores where I could buy children’s books from ages past. He would drive and drive while I sat back and watched the scenery. That was our favorite thing—to enjoy the countryside, share simple meals, and talk.

This ending was not what I wanted. I wanted a happily-ever-after. I wanted us to grow old together and pass away peacefully after a long, shared life. That was not to be.

Instead, I am left with fragments of a marriage that was once good, and later heartbreaking.

Slowly, the hard years are fading, and I am grateful. They are not worth holding onto. We had so many good years—just not enough. . . 

A Closing Note

I’ve decided to bring this blog to a close following the passing of my husband, Bill. This chapter has been a long and meaningful journey, and while grief continues, the caregiving chapter itself has ended.

I’m deeply grateful to everyone who has read along, shared their stories, or found comfort here. I’m going to leave this blog up, in case something written here helps someone else walking the caregiving path. I may occasionally refer back to it in future writing.

I do want to keep writing—but about new seasons, new ideas, and life moving forward. From here, I’ll be writing on Substack, and eventually on a new website focused on The Single-Serving Life.

Thank you for being here, and for being part of this chapter of my life.

— Cindy

The Single-Serving Life

Simple ideas for enjoying life on your own.

Final Resting Place

On December 15, 2025, my children and I laid Bill to rest. We gathered for a simple military service at the Houston Veterans Memorial, where his urn now rests in the memorial wall. There was comfort in the simplicity, and gratitude for a moment of stillness after a long journey.

Shelly was the strong one today. . .

Today we picked up Bill’s urn. I say we because I had to call Shelly to help me — I couldn’t get myself there on my own. The moment they brought the urn out, I lost it. I wasn’t functioning. Shelly stepped in automatically, talking to the funeral staff, taking the instructions for the flag, handling the paperwork for the Houston Veterans Memorial.

And me?
I just kept writing the check. That’s all I did. While she was being the adult in the room, I sat there crying and signing my name like it was the only thing I was capable of.

When it was time to leave, she carried the urn. I cried the entire way home.

Back at the apartment, she said she’d keep the urn, the flag, and the paperwork until Monday. I agreed without thinking. She stayed with me until I calmed down, and then she left — still carrying everything I should have been taking responsibility for.

And here’s the part I hate to admit. I’m relieved she has it all. Relieved to the point where I didn’t even stop to think about the weight I was putting on her until after she left. 

But I’m also deeply grateful. She stepped in without a word, without making me feel worse, without asking for anything. She just did what needed to be done.

Today, I couldn’t be strong. Shelly was — and I’m thankful for her in a way I can hardly put into words. 

The Long Goodbye is Over

 My husband, Bill, passed from this life on Monday, November 24, 2025, at 4:10 p.m.

What began as an infected wound ultimately ended Bill’s long struggle with Alzheimer’s. When the VA called on November 21 to say he was running a fever, I drove up the next day to visit him. I could see that he wasn’t doing well. On Sunday, November 22, they told me he was “transitioning,” his body was beginning to shut down. 

Wil drove down from Austin Sunday night. On Monday morning, the three of us ate breakfast together; then Wil and I drove to the VA while Shelly stayed to watch Freya. 

Irene, the hospice nurse assessed the situation and said, “It could be an hour, possibly a day, but death was imminent.”

We spent the day saying our goodbyes as we watched his body struggle to hold on. The team kept him as comfortable as possible, giving him medication as needed. By 3:45 p.m., we knew it wouldn’t be much longer. 

I had never seen someone die before. It was emotional and difficult to witness. Bill was in very good health other than Alzheimer’s, and he fought like hell as his organs began to shut down, one by one.

Around 3:50 p.m., his eyes rolled back and his vitals stopped. Irene looked at me with a shake of her indicating this could be the end. She began the countdown on her watch. After two minutes, I texted the kids and told them Bill had passed. (Wil had stepped out of the room for a moment.) However, no sooner had I done so when Bill jerked up and gasped another long, crackling breath. He was not giving up, yet.

I jumped up in shock. “What is happening?” 

Irene explained that this was not unusual. “His heart is so strong, and it doesn’t want to give up.” 

However, at 4:05, he ceased all signs of life again. Wil had returned and we were holding Bill’s hands, one on each side. Irene started the countdown. This time, Bill did not revive. he was gone at 4:10 p.m. His body was worn from the battle, but I could see that he was finally at peace. 

Irene called the mortuary while the staff prepared Bill’s body for travel, finally draping him with an American flag. 

The Veteran’s home played taps as our procession made its way out of the building and into the parking lot. After a few words from the staff, Bill was placed in the waiting vehicle for the ride back to Galveston.

This morning, I am both heartbroken and grateful. Heartbroken that my companion of 55 years, through good times and bad, is gone. But, grateful that the relentless cruelty of Alzheimer’s has finally ended. Bill is no longer suffering from pain, confusion, and fear. He is free at last.

And I am free at last - free to grieve, to cherish the years I had with him, and to move forward with my life. Will I see him again? I don’t know. I don’t have the answer to that question. All I know is that he is no longer suffering, and that is what matters to me.

Make it stop . . .

I walk in and find Bill lying in bed, a thin white sheet covering his deformed frame which looks more like death than life. I reach out to comfort him, attempting to rub his outstretched arm, but quickly snap back in shock when I feel bones where tissue used to be. His muscles have atrophied, and now even his fatty tissue is wasting away. There isn’t much left of my husband.

The nurse tells me he has a bedsore that's become infected, so now—on top of the morphine for pain and the medications to keep him calm—they’ve added antibiotics, hoping to keep him from developing sepsis. 

Bill opens his mouth as if to speak. Nothing comes out. But I notice his teeth, discolored from so many drugs. Bill always took good care of his teeth. He would be horrified to see them now.

Sadie, the hospice nurse, says they’re trying to find out why Bill is so combative when the aides try to bathe him. It has become so bad, they are now waking him at 4 am to give him his pain medications in hopes he’ll be more docile when the aides come at 6. They are not sure whether his combativeness is pain or something else. He can’t tell them.

“Hi, Bill,” I say. “How are you? Are you okay?” His eyes move, but I can tell he isn’t really seeing me. He looks like he’s trying to speak, but no sound comes out. I lean closer, hoping to catch a word, a phrase—anything—but still nothing.

I wonder what’s going on in his mind. He’s in a strange place. He can barely move. He can’t see; his eyes lost most of their vision years ago. That part isn’t new, but it must be more frightening now.

I feel completely helpless. What can I do? How can I make this better? How can I help him? But the horrible truth hits me again: I can’t. There is nothing I can do. I can only watch him die, one cell at a time.

I want it to stop. I want to shout at someone, anyone: Please make him better. Please stop this torture. How much more does this man have to endure? How much more do I have to endure?

But there is only silence.

I pick up my purse and leave my husband of 55 years in the hands of the hospice nurses. My soul can take no more . . . not today. 

Morning Inspiration

 This inspiration came at just the right time. Today, I've been told by my Anchor Hospice social worker that I should preplan Bill's funeral (and mine!). UGH! Getting old is the pits! Of course, as my father-in-law used to say, "Consider the alternative!"

So, I went on the Malloy Funeral Home website hoping I could it all online. Nope, might have to go in. Not my favorite thing to do! I am not good with funerals or funeral homes. A new thing to stretch Cindy Downes. . .

I called the funeral home and got someone who didn't know what to do. So, I get to postpone it to tomorrow!

UPDATE: I met with Tiffany on Wednesday and made the funeral arrangements for both Bill and me. It wasn’t nearly as difficult as I expected. Tiffany immediately put me at ease and gave me all the information I needed—and then some. I actually walked out of the mortuary in a surprisingly good mood.

Bill will be interred at the Houston Veterans Memorial in Houston, Texas, with a full veteran’s ceremony, including taps and a flag presentation. It’s exactly what he would have wanted.

Since Shelly is the “keeper of the ashes” in our family, I gave her a choice about what to do with mine. I could go with Bill to the Veterans Memorial, or I could be turned into “memorial stones.” She loved that idea, and so do I. She’ll be able to place them in her garden. I only wish I could have had stones from my mom—they’re truly beautiful.

One more task checked off the list.

The Next Stage - Hospice Care

Today, I made the decision to place Bill under hospice care. He has declined much faster during these last six months; and now, he is in the last stages of dementia. My goal is to ensure that he remains as comfortable and free from pain as possible during this last transition. The VA uses Anchor Hospice. They were gracious, informative, and took the time to answer all my questions. So far, I am very happy with them.

This has been one of the hardest decisions of my life, even though I know it’s the right one. I was happy to learn that Medicare pays for hospice. What a blessing that is!

I appreciate your good thoughts and understanding as I navigate this next chapter.

Caregiving - PBS Documentary

Everyone in the United States should watch this video from PBS. As it says, there are four kinds of people in the world:

Those who have been caregivers.
Those who currently are caregivers.
Those who will be caregivers
And those who need caregiving.

This film documents the history of caregiving in the United States and reveals the state and the stakes of care in America today. Please share.

https://www.pbs.org/video/caregiving/

An Emotional Day

What a day. So many emotions – happiness, sadness, anger, gratefulness - all crammed into one day. 

The happiness was seeing my son, Wil, and his new dog, Freya, a white husky. Spending the last few days with them was a welcome distraction from losing Oreo.

Today brought the sadness. Wil, headed back to Austin, stopping at the VA so we could visit Bill together. I brought Bill outside to meet Freya. On the way, Bill said, I'm going to see "Oreo." I didn’t correct him-it would have been too upsetting. He was already agitated.

Outside, he recognized Wil right away but was frightened by Freya. Our visit was short; Bill wanted to go back to the safety of his pod. Inside, he grew more anxious, repeating, "help me, help me," over and over, with an occasional "I love you" thrown in as well. In his hallway, he kept saying, "help me hallway, we're back in my hallway, my hallway, help me." It's so hard to hear the confusion in his mind. 

Back in his pod, one of the other residents began shouting at Bill to stop it, even threatening him. At that point, I took Bill and went to find his aide before a fight broke out. I finally spotted her by the nurses' station limping and holding her hip as if she was in pain. She was in the process of taking a medication of some sort. Now, I was angry. "How can she take care of these patients when she's in pain? How can she help get Bill in and out of the Hoya lift or move him around on the bed to change him? Why isn't she at home healing while a capable aide takes her place?" I understand that she may not have sick time, but that doesn't help my husband. 

We finally got Bill settled, and I went to find the head nurse. I discussed the issue and she assured me the problem would be addressed. I left as there was nothing else I could do. 

Generally, I find the care at the VA very good. This was a definite outlier and it makes it hard to leave Bill knowing things like this happen. But what can I do? 

My gratefulness is for a Trader Joe staff member. I stop there occasionally when I'm in Houston because I love Trader Joes! As the staff member packed my freezer bag for me, we chatted about Galveston and Bill. When she finished checking me out, she asked, "What is your favorite color?" I told her purple. She insisted I wait at the register and left. Shortly, she returned with two beautiful bouquets of purple-pink flowers all neatly packed in a bucket with water and wrapped in two paper bags. It was a lovely gesture!

 I'm so grateful for the kind people in my life. It makes all the other emotions less painful. 

 

 

Oreo, My Companion is Gone

 My heart is broken. My sweet companion, Oreo, the one who stood by me through this struggle with Bill—is gone.

I came home from the airport and found her unresponsive, dehydrated, and with severe weight loss. She hadn’t been eating well before I left, but I blamed it on the food issue. She had always been fragile since she was a pup, needing special diets to stay well. Then, in the summer of 2024, we discovered a vegetarian food that she gave her new life. It was like a miracle—suddenly she was healthy, perky, and ready to walk with me again. We were enjoying life together, and I was elated.

But this summer, the company stopped making that food. “Not enough demand,” they said. I tried every other vegetarian brand I could find. I even experimented with making her food myself, desperate to find something she could eat without getting sick. Nothing really worked that she would eat. By the time I left for vacation, she was already picking at her food. I had stocked up on dry food from the original brand and saved three cans of the wet, thinking, When I get back, I’ll figure this out. She’s just being finicky.

But she wasn’t. She was dying. Her kidneys and pancreas were failing, and I didn’t know. I left her when she needed me most. How could I have left her?

The moment I stepped into my apartment, I knew something was wrong. I rushed her to the vet, but it was too late. I had to let her go. Shelly came to help me through it. I stayed with Oreo until she drifted to sleep, and then Shelly stayed for the rest. I just couldn’t.

This morning, I gathered her things. Some went into the closet. Some I’ll take to the humane society. I couldn’t give it all away—not yet. Part of me still hopes I’ll hear her paws on the floor, coming back from using the doggie pee pad in the bathroom.

I knew this day would come, but I didn’t think it would come so soon. Oreo was my comfort in this lonely apartment. When I came home crying about Bill, she would curl up next to me, letting me pet her until the tears stopped. She was my cozy companion, always there and never complaining.

Seeing Oreo so thin and unresponsive brought back the conversation the nurses had with me a couple of months ago about the end stage of Alzheimer's. Apparently, if nothing else takes him first (heart etc.), Bill will eventually starve himself to death. Hospice will keep him "comfortable" with morphine and other medications, but what a terrible way to go. How will I survive that? How can I sit by week after week, watching him waste away and be powerless to stop it? The truth is, I have no choice. 

For now, I have to put those thoughts aside. I can't do anything about that.

Instead, I'll run some errands - drop off Oreo's food and medicine at the humane society, then drive up to Houston to visit Bill, if I can pull myself together. Hopefully, he's having a good day. On the way back, I'll pick up groceries.

Then I’ll return home to the silence. It's a sad, sad day. . . 

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. 

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! 

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!