No More Wheelchair?

There are always new changes with Alzheimer’s. Today, I had to face the tough reality that I can no longer take Bill out in the car with me. His upper body is still fairly strong, but now he needs professional assistance to get in and out of the wheelchair. He’s been falling more often, and it’s become a serious risk. I can’t chance him falling while we’re out. Not only could it hurt Bill, but at my age, it could seriously hurt me too. Bill doesn’t understand why we can’t go out like we used to, but the nurses at the VA are working with me to come up with new ways for him to feel like he’s “going out.”  

Today, I drove to Houston a little later than usual so I would arrive in time for exercise class. He sees me and smiles. I can see he’s happy I’m there. Then he goes back to throwing and catching the big blue balloon, one of his favorite exercises.    

 

After the workout, we have lunch together. I had stopped at HEB on my way to Houston to pick up a veggie/fruit/cheese snack pack and two salads to supplement the lunch provided by the VA. Bill enjoyed the “goodies” and then polished off his VA meal, as well! I ate my salad and then realized the snack pack was gone before I had a chance to get any. Next time, I’ll buy two!  

 

Next, I tell him we’re going “to a party.” The VA is divided into four pods – three for independent and assisted living, and the fourth is the locked memory care unit. There’s a celebration happening in one of the other pods, and we’re invited. 

 

I buy him a coke at the vending machine and off we go. He’s delighted to be out of the locked unit, drinking his coke, and chatting with the people he meets. Most of them know who he is and call him by name. He may not remember them, but he always says hello and asks how they are doing. He definitely enjoys the attention.  

 

The VA does a great job with these events – there’s always music, speakers, and food. Sometimes they have games and prizes. It depends on the day. Today is a musical celebration. I enjoy the outing because I can just sit and talk with Bill. I don’t have to worry about transportation or fall risks. Best of all, if he needs to go to the bathroom, someone from the medical staff goes with him. I don’t have to leave my seat! 

Our Activity Director: Marilyn - What a nice voice!
Let the video run and you'll see the whole crew! 

All in all, it was a good day. Bill was happy most of the day. No sundowning. No paranoia. No accidents. No yelling or getting angry. He was sad when I told him I was leaving, but the nurse gently guided him to his room, and I quietly slipped out. 

After the long drive home, I parked the car and opened the trunk to take out the wheelchair. I rolled it into the apartment and tucked it in my closet. As I closed the door, I found myself wondering, “Will it ever be used again?” I briefly consider giving it away, but then remember my own age. “I better save it. Someday, it could be me in the wheelchair.”  

Bill and the Houston Ship Channel

Today, I decided to take Bill to LaPorte and watch the ships go by. When I got to the VA, they had him all ready to go - no problems with his Rx. So off we went on our adventures.

 First, we went to Sylvan Beach Park. Unfortunately, with his vision, he couldn't see the ships from the parking lot. So, I continued to drive up along the waterways and landed at the Monument Inn Restaurant on the Houston Ship Channel. The restaurant was listed as handicapped accessible, so I thought, "Perfect, let's grab a bite to eat here."

I soon discovered, however, that the restaurant is on the 2nd floor, and there was NO elevator in sight. Instead, I spotted a broken-down "chair lift" running up to the 2nd floor. Even if it were fixed, it wouldn't work for Bill. So, I left Bill in the foyer and went upstairs to ask how I was supposed to get him up to the 2nd floor. The staff replied, "Oh, we'll bring you up in the freight elevator."

Let me tell you - the freight elevator is an experience I do not want to repeat! We were directed through several downstairs hallways, past a scaffold where a construction crew was busy repairing the ceiling, and then into a huge, metal box. As it clanked and rattled its way up, we got a lovely view of concrete walls, wires, and metal gates.

Once upstairs, I had to push Bill through the worst part of the kitchen area on narrow, thin, blue carpets that were thrown helter-skelter over bumps, puddles, and kitchen chaos. The server that directed us, John, helped me push my husband over a 2" high obstacle that I would not have been able to navigate by myself. This so-called "path" eventually led us to the restaurant itself, where it finally became worth the effort.

First, the view was fantastic. Huge picture windows gave us a front-row seat to ships of all shapes and sizes gliding back and forth along the channel right in front of us.

Next, our server brought us a huge plate of rolls - both yeast rolls and sweet breakfast buns! I almost filled up on the bread! We both ordered seafood - a combo of fried and grilled fish, salads, onion rings and ff. The food was delicious, even though there was too much fried food for me. I enjoyed the salad, a couple onion rings and the stuffed crab.

We did meet another obstacle at bathroom time - the doors and stalls are too small for wheelchairs. With no room to navigate, we had to skip the bathroom break. Thankfully, we made the whole day without accidents. (Note to self: this place is NOT handicapped accessible even though it is advertised as such.)

The best part of the day was how happy Bill was. He couldn't stop smiling and saying what a great day it was. He laughed, talked about the 70's and 80's (currently where his mind is), and watched the ships go by. We discussed his family, the pets we've owned, our kids, his college campus, and his fraternity friends. I'm amazed at how he has no concept of time, no memories of the past 30-40 years, yet still remembers his old friends and his college town. Thankfully, we've been married since 1970, so he still remembers me!

Afterwards, we took a brief ride around the San Jacinto monument and then back to the VA.

All in all it was a successful day. But, no, I won't be taking him for a repeat visit . . . I refuse to experience the "FRIGHT elevator" ever again!

Guiding an Improved Dementia Experience (GUIDE) Model

 I wish I could explain this, but apparently there are some new resources from Medicare in 2025 for people with Dementia and their caregivers. I looked it up on Medicate and found this link:

https://www.cms.gov/priorities/innovation/innovation-models/guide

I suggest that you contact your family care practitioner and helpfully they can explain what it is and how you can benefit. Here's hoping! 

Here's a blog post about it: https://www.cms.gov/blog/guiding-improved-dementia-experience-clearing-path-comprehensive-high-quality-dementia-care

This is a little bit more clear: https://www.morganlewis.com/blogs/healthlawscan/2024/03/medicares-new-dementia-guide-model-how-can-physicians-hospices-and-home-health-agencies-participate

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. 

Lasix - Don't leave the Nursing Home With it!!

I called the VA home yesterday afternoon and reminded them that I was coming and not to give Bill his Lasix. They give him Lasix to keep his leg swelling down, but it makes him pee all the time. So, when I go up, I ask them to delay giving it to him until after we have been out. 

Apparently, the person who took the message didn't get it to the medication nurse. She had already given it to Bill when I got there. I decided to go ahead and take him out because he LOVES to go for car rides. 

I decided to take him to a new-for-us, Tex-Mex restaurant in downtown Houston called, Ninfa's. His joints weren't working real well, but we managed to get him in my RAV4 and off we went. 

Bill enjoyed the cityscape. We were talking about how big Houston is when he said he thought he saw the Twin Towers. "The Twin Towers are gone," I said. He looked at me in disbelief. He has no memory of that. I guess that is a good thing. 

We lucked out with parking and got a spot right in the front. It is a beautiful restaurant in a nice area. 

We ordered chicken and shrimp fajitas for our meal. They came out steaming hot! The chicken and shrimp were both cooked to perfection. Sides included salsa, rice, beans, sour cream, avocado, and pico de Gallo. 

It was delicious! But before we got too far into our meal, the Lasix kicked into high gear. Bill had to go to the bathroom. I took him to the men's room and turned on my timer for 15 minutes - the usual amount of time it takes him to finish. Some nice guest in the restaurant brought him back in ten minutes! 

He ate one of the fajitas and then he had to go again! So, back he went for another 15 minutes. This time our server helped him back out to the table.

He finished up his fajita just in time for key lime pie. He ate his pie and then, you guessed it, he had to go again! So back he went for another 15 minutes.

I paid the bill and, this time, I went in the bathroom myself and rescued him. I had barely gotten him in the car when he said he had to go again! He started shaking his arms and banging the car door. I told him to go ahead and go in his underwear (he has depends on). That seemed to do it. After that he settled down and enjoyed the ride home. The nurse later told me he doesn't go that often when he's at the VA. I'd never seen him go that much either. So who knows, but I will make sure that next time he gets no Lasix on the days I go if I have to call two or three times ahead! 

We had a good time in spite of the Lasix. He enjoyed the ride and the food. When he got back to the VA, the aide put him in the shower and I left. A fairly good day. 

DNR Decision, Part 2

I went to Houston today and took Bill out for lunch. I had all intentions of talking to him about the DNR; but I quickly realized, that only when I’m at home do I think he is capable of making such a decision. He has the cognitive skills of a 6-year-old. How can I ask him to make a decision like that - I can’t. So I didn’t.

I had done more research on the internet and, in the process, discovered the low outcomes post DNR, especially with people who have dementia. 

"Even if a patient does survive the initial resuscitation, their long-term quality of life can be significantly impacted. For patients with dementia, the quality of life post-resuscitation is often diminished due to the additional neurological impairments that may occur during cardiac arrest. Studies show that many survivors experience worsened cognitive function and physical disabilities. In some cases, these patients may not regain their previous level of independence, and the overall prognosis for returning to a meaningful quality of life is generally poor.

Additionally, the chances of long-term survival are slim, with significant mortality within the first year after discharge. For older patients, particularly those over 70, survival rates drop even further, with only a small percentage surviving beyond one year."

Really not much positive about it. I didn’t realize (or it didn’t register) that it would probably decrease his brain function even more, among other things, making his quality of life even worse. I can't do that to him.

I’ve decided to sign a DNR. It’s the right thing to do. I guess I didn’t want to face it. But face it, I must. 

The Social Worker will email me the form and I must sign it in front of two witnesses, so that is my job this week. Damn, this is hard.

The good thing is that Bill is in fair physical condition, other than high blood pressure and arthritis. So we shouldn't need the DNR for quite some time. In the meantime, I'll continue to take him out for his rides around Houston; the one thing he looks forward to each week. At least we have that.

DNR - How do I make this decision?

I'm a bit weepy today. I went to see Bill at the VA Memory Care. It was a ______ visit. I'm trying to fill in the blank with an adjective, but I don't have one. It was not pleasant. It was not fun. It was not happy. Bill only wants to get out and ride around. Unfortunately, I hurt my shoulder and did not want to lift the wheelchair or worry about catching him if he falls. So we sat in his room and "talked." 

He doesn't talk. He asks questions. The same ones over and over. How are the kids? How are you? Then, he says, "I want to take you out to lunch." I explain, again, that I can't today. He says that he'll drive. I remind him he has no license. Then he sits and stares until the session starts all over again. And again. And again. 

After I got home, I began to think about the question that the VA asks me every month. Do you want a DNR on Bill? I always say no. But, am I doing the right thing? I don't know. This afternoon, I searched the internet for information on when to put a DNR on a loved one. Here are the answers I got: 

Deciding when to place a Do Not Resuscitate (DNR) order on a loved one with Alzheimer's Dementia is a deeply personal and challenging decision. It involves considering their current health status, quality of life, and their previously expressed wishes if they were able to make their preferences known.

Here are some factors that might help guide your decision:

### 1. **Stage of the Disease**

   - **Early to Mid-Stage:** If your husband is still able to engage in life meaningfully and has some level of independence, you might feel that resuscitation would be appropriate if it could extend his life with a decent quality.

   - **Advanced Stage:** In the advanced stages of Alzheimer's, when the ability to communicate, recognize loved ones, or perform basic functions is significantly impaired, many people consider a DNR. At this point, resuscitation might prolong life without improving the quality of that life.

### 2. **Overall Health**

   - If your husband has other significant health issues, such as heart disease or chronic conditions that could lead to sudden cardiac or respiratory arrest, it’s worth considering how these conditions might interact with his dementia. Sometimes, the presence of severe comorbidities makes the decision clearer.

### 3. **Quality of Life**

   - Consider what your husband’s quality of life is like now and what it might be in the future. If resuscitation were to occur, would it lead to a meaningful recovery, or would it likely result in more suffering? For example, if he were to be resuscitated, but with diminished capacity afterward, would this be what he would want?

### 4. **His Wishes**

   - If your husband ever expressed his wishes regarding life-sustaining treatments before his diagnosis or in the early stages, those wishes should guide your decision. If he has an advance directive, living will, or had conversations about his preferences, they should be honored.

### 5. **Family Input**

   - It can be helpful to talk to your children or other close family members about their thoughts and feelings. They may offer insights or support that can make the decision less burdensome.

### 6. **Medical Advice**

   - Consult with his doctors. They can provide insights into his prognosis and help you understand what resuscitation might entail for someone in his condition. Palliative care specialists can also offer guidance focused on comfort and quality of life.

### 7. **Emotional Readiness**

   - Are you emotionally prepared to make this decision? It’s okay to seek support from friends, family, or a counselor. It's a heavy burden, and you don't have to carry it alone.

### 8. **Ethical and Spiritual Considerations**

   - Reflect on your ethical and spiritual beliefs, and how they align with the idea of a DNR. Your faith community or spiritual advisor might provide valuable guidance.

There's no single "right" time, as every situation is unique. It’s about finding the right balance between honoring your husband's dignity, respecting his wishes, and considering the emotional and physical toll on both him and you.

After reading this, I could only cry. . .