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.