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. 

 

 

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. 

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! 

Visit to Houston - A Good One

I missed visiting Bill last week because of the move, so I was anxious to get up to Houston to see him. My goal this visit was to take him to Fall Festival as his "escape out of the building," but I got the wrong time, again! Instead, I took him outside for a walk, got him a coke, and watched him do his exercises. Today's exercises were a bit different than I've seen before. He seems to enjoy doing them, and it keeps him moving some.

This is a kick the ball exercise.

This exercise involves throwing the ball at the paddle.

Physically, he's getting much weaker, especially in his lower extremities. In fact, they are getting him some kind of lift for getting in and out of bed, bathing, and toileting. He's a big man and trying to get him up and down is impossible for most people. It makes me sad he cannot walk anymore, especially as it indicates that he is most likely progressing towards another stage of the disease.

Bill's mood was good, which does make me happy. He has fully adjusted to being there, but he's still glad to see me when I come. And he still knows who I am! However, he is very confused about most everything else. Today, he told his lunch table mate that he has been at "this place" (the VA care home) for two months! In fact, it's been almost two years. I'm glad he thinks it's only two months. He apparently has no concept of time, which makes me feel better when I don't get up to see him as often as I would like. 

After asking about the kids and Oreo, he asked about our "other daughter." When I acted confused, he explained that she's the one we got since he has been in the care home. I have no idea who he is talking about, but my guess is that someone there seems like a daughter to him. So I now have another daughter! I'll have to find out who she is! '

The other thing he said that is mind boggling is that he believes we "won" this "vacation" in a lottery or contest of some kind. He even asked me, "Would you do this again?" I said no and he agreed. But he's determined to finish it out. The food is not so good anymore, he says. I actually thought it was better today. He's beginning to lose some of his taste buds, and the only thing he really likes to eat now is ice cream and sweets. 

All in all, it was a good day. I came home content that he was happy and being cared for. What more could I ask?

A Day Full of Surprises!

Yesterday’s visit with Bill was both pleasant and full of surprises. Since I’ve stopped taking him out of the complex due to his mobility challenges, I’ve had to get creative with how we spend our time “out and about.”
 
On my way to the care home, I picked up some snack pack lunches with crackers, cheese, meat, and salads, as well as cookies for dessert. I also picked up a big gift box of cookies for the staff – always a good thing to do. They love it, so I try to take them some kind of goodies once a month. 
 
When I arrived, Bill was snoring away, waiting for his exercise class to start. The residents had gotten flu shots the day before, and everyone seemed a bit drowsy.
 
It was also haircut day. We have a new female barber who does a great job with the residents. She agreed to let me photograph her in progress! He was so proud of his haircut!

Best Barber Ever! 

For lunch, we headed outside to the beautiful, enclosed patio attached to the memory care unit. It’s a safe space with locked gates, so no one can wander off. The weather was perfect, and Bill seemed to really enjoy being outdoors. 
 
After lunch, I took him for a walk to the other side of the complex where the independent living and assisted living residents live. They have it all decorated for Halloween, including several new resident skeletons! 

Later, we bumped into Bill’s psychiatrist – a delightful man who took the time to stop for a nice chat. He told me that Bill is “teaching him how to fly a Cessna” during their sessions. I mentioned how strange it is that Bill cannot remember anything from the last 30 years, but still knows how to fly. The doctor shared a story about another of his patients who consistently remembers two things: his wife and how to play the piano. He can’t read music anymore, but he’s still fabulous on the keys. Alzheimer’s is a very strange disease! 
 
We finally ended up back in his unit in time to get dessert. Although he’d already eaten lunch with me, he couldn’t resist sitting down for the sweet potato pie that was being served. While waiting for the pie to be served, we chatted with the other resident at our table who announced that he was a Texas Ranger. That’s when things got interesting. Bill replied back that he was a pilot. The Ranger quipped back, “Oh, I probably shot you down.” I wasn’t sure if that was a joke or not?!
 
Bill then went on to explain how he was a demolition expert. He followed that with a story about building a bomb and using the bomb he built to detonate another bomb. I have no idea where this came from. TV? Conversations with other residents? Or is it the truth? Don’t they have to go to a special school to do bomb demolition? Why had I not heard about this before? When I asked, Bill said, “It’s secret stuff.” 

Whether it’s true or a figment of his new imagination, Bill seemed to have a good day. He enjoyed the food, the conversation, and my visit. I left feeling happy because he was happy. What could be better than that?  

Bill's Birthday and "Special Angels"

Today is Bill's birthday, so my goal was to pick him up, take him for a ride, and then take him to Texas Roadhouse for lunch as that is his favorite restaurant. 

Knowing that Lasik is not our friend and that the message to the nurse to hold his Lasik a few hours has not always been easy to get to the right person, I contacted the VA three times. Yesterday, I called the Director of Nurse, April. She did not answer, but I left a message. Last night I called POD B, the memory care unit, and left a message; and this morning, I call the new day nurse on duty on POD B and talked to her on the phone. (This is the same nurse who did not give the message last time, so I told her what I wanted, asked her if she understood the message, and then told her I would be really upset if I got there and my husband had been given Lasik.)

Sure enough, I get there and the medication nurse had not gotten the message! Needless to say, I came unglued. The nurse at the desk whom I had talked to on the phone, just shrugged like it wasn't her problem. One of the nearby aids said, "Just take him out for a short while." At that, I blew up, bringing out nurses from all corners of the facility.

The medication nurse, Valerie, who is a gem, and Verna, who calls herself my "Guardian Angel," came over and asked me to come to Verna's office. Both Verna and Valerie gave me their direct phone numbers so I can call them anytime I need anything. I was happy with that, but this was Bill's birthday. How was I going to deal with Bill on his birthday?

They came up with an answer! Valerie came with me! She took care of Bill the whole time - getting him in and out of the car and restaurant, taking him to the bathroom, and making sure we had a positive experience. It was so much faster with a helper - no waiting to get in and out of the locked unit, a helper to get equipment in and out of the facility and car, and I could take care of the restaurant issues while she took care of Bill. 

So it turned out to be a good day after all, and now I have a direct number to my guardian angels! Hopefully, this will solve the problem for future visits. 

Bill had a great birthday lunch of filet mignon, applesauce, and sweet potato. The manager of the Texas Roadhouse even brought him a free brownie and ice cream for his birthday! The only downside was he had such a good time, he couldn't understand why he couldn't go home with me when I had to leave. That made me sad. And, yes, there were more tears. But I am so grateful for a caring staff who made Bill's day a good one. And, I was told there will be consequences for the "shrugging nurse." Not everyone is cut out to work in a Memory Care unit. It takes special angels to do that work, like Valerie and Verna. If you know any special angels who work in Memory Care, give them a big hug. They deserve it. 

Life in the Care Home - Nine Months Later - August 2023

 This is a memoir piece I wrote in August 2023, nine months after I had placed him in Memory Care. 

I thought that once I had Bill in the Veterans home things would be better. He would be happy with all the attention he received from the nursing staff and all the conversations he would have with the residents all day long. After all, that’s what he wanted to do when he was home - discuss his illnesses with anyone and everyone who would listen. 

Well, I was wrong. Bill hates it at Memory care. He wants to come home. He doesn’t understand why he has to stay there. Every so many days, he packs up everything he has: dirty clothes, clean clothes, electronics, DOP kit, even his mini fridge and shoves it all in his laundry bag. He calls me on his iPhone, "Does the blanket belong to us? I’m trying to pack up so I’ll be ready when you come get me."

He loses his watch, his iPhone, his iPad, even his walker - twice (so far)! He calls me to say he has no toilet paper, no paper towels, no bath towels, or clean clothes. 

One day he found someone in his bed. “Why can’t I lock the door? People steal my stuff.” 

What’s missing? I ask. He answers, "I don’t remember."

He calls me incessantly - day and night - telling me he doesn’t want to work there anymore, they took him somewhere and he can’t find a ride home - will I come get him? 

"There’s something going on here," he says. "I’m not sure what it is but something. Everybody is mad. The people here are terrible and driving me crazy." 

I hear someone screaming in the background.

"Are you at home or at Oreo’s?" He has no concept that Oreo cannot live by herself. 

"Are we sitting with someone at the dinner tonight? What time are you coming? My watch is in pieces, my iPad doesn’t work, the remote for the TV is missing." 

After a while, my stomach is in knots. I call the staff but get the run around: “Yes, we’ll find his walker. Yes, we’ll send his laundry to the cleaners. Yes, we’ll get him more toilet paper and towels.” Only to find that it still hasn’t been done the next day. 

Like everywhere else, COVID has done it's worse, and they are short staffed. That’s supposed to make me feel better but it doesn’t. I feel like crap. 

Here I am trying to enjoy some semblance of life while my husband is literally going crazy. And his atmosphere isn’t helping. What have I done? Can I fix it? Should I fix it? I’m exhausted thinking about it day after day after day. 

When I finally get someone to talk with me, they tell me it’s only going to get worse. I don’t know if I can do it much longer. I may have to pull him out and suffer with him. Maybe that’s the only way out. They say a caregiver can die before the patient - maybe that would be a good thing. At least I wouldn’t feel guilty, helpless, and so exhausted. 

So is there anything positive about this? I have 8 min left to write so here’s the positives: 

1. I’m positive I’m depressed today.
2. I’m positive I can’t really fix it.
3. I’m positive I have more good days than bad days since he went to MC.
4. I’m positive he has more bad days than good days since he went to MC.
5. I’m positive  I can’t care for him 24/7 without severe depression and illness to myself.
6. I’m positive it’s going to get worse.
7. I’m positive this disease is horrible.

Is there a better solution within my income and at my physical age? How do I get through this? How do I turn off my heart? I’m too exhausted to even think about it. I just want to cry.

"I Don't Remember" (Memoir)-Summer 2023

I wrote this memoir piece in the summer of 2023, six months after placing Bill in memory care.

As I enter his room, I sense it’s going to be a difficult day. It’s 10 a.m. and he’s still in his pajamas, even though I had called earlier to remind him I was taking him to lunch. “Why aren’t you dressed,” I ask?

“I don’t remember.” 

As I help him dress, he asks about his watch charger. “It was on your bedside table when I left last week. Remember, I brought you a second one because you lost the first one. What did you do with it?” 

“I don’t remember.” 

Alzheimer’s is the “I don’t remember” disease. It turns a perfectly healthy, intelligent, loving, hard-working man into a bewildered, self-centered, toddler. It turns a loving, healthy wife into an angry, resentful, mentally and physically drained shell. All because “I don’t remember.” 

Some days (and nights) I get phone calls, seven, eight, nine in a row, with him telling me he’s at a National Guard meeting, a church event, or a photo shoot and can’t get home. “How did you get there?” I ask. 

“I don’t remember.” 

Some days, he claims the tv “doesn’t work;” his iPad is “broken;” or his watch is in “multiple pieces.” He used to be the go-to person for fixing electronics. Now, when asked how to operate them, he says, “I don’t remember.”  

In December 2022, I admitted Bill to a nursing home in Galveston. It was the most difficult and heart wrenching decision I’ve made since our marriage. The guilt was overwhelming, but I knew I could no longer keep him safe at home. He couldn’t remember where he was nor where he was going.

His cramped, double-occupancy room contained two beds, two chairs, two tables and a roommate who could cuss loud enough to be heard all the way to Houston. There was barely room for me to sit and visit, let alone have a conversation.

Worse yet, it wasn’t long before Bill learned how to escape. They placed a tracker on his ankle, but soon discovered he could cut it off with his dinner knife. This was not the place for Bill.

In January 2023, I was able to move him to the Richard A Anderson Veteran’s home in Houston. Here he would get the Memory Care he needed, quality medical care, and a large, private room, features I could not afford closer to home. 

My daughter, Shelly, and I were determined to make his room special. We printed and framed dozens of photos of his family and pets and hung them on his walls. Shelly set up a charging station where all his electronic cables were fastened down with Velcro on his bedside table so they wouldn’t get misplaced and were easy to use. I bought him a mini refrigerator so he could have easy access to his favorite drinks and snacks. We brought his 55” TV and a comfy lounge chair from home so he could watch TV; his favorite thing to do. We went home content that we had done everything possible to make his room special. 

On the next visit, I was appalled to find all the pictures scattered on the floor. His electronics and TV remote - vanished. The refrigerator was unplugged and full of warm cokes. “Why did you do this, Bill? Why?” 

“I don’t remember.”      

I tidied the room, stacked the photos into a neat pile, and eventually located his remote and electronics stuffed between smelly socks and t-shirts in his laundry bag. I said goodbye and left. When I reached the car, I put on my seatbelt and wept. 

 How did you drive home,” you ask? 

“I don’t remember.”