Category Archives: Alzheimer’s

Underwear & Alzheimer’s

Until you have given a pair of underwear to a person with Alzheimer’s do you realize what a complex piece of clothing they really are. There are so many combinations of holes, directions and appendages that can go in them. Just with the legs along (which is the appropriate way to begin to wear underwear), there are 36 permutations of legs vs holes combinations, and that not even taken into consideration forwards and back. I have yet to see them put on the arms (which is where socks often go), but I have seen them used as a headpiece. Of course, that is something I also remember from my high school/college partying days. So next time you put on your underwear correctly, pat yourself on the back for a job well done! Especially if you are a man and you have the extra pocket in the front, which might lead to additional complexities and challenges.

Ice Cream, Alzheimer’s and a Pandemic

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It used to be easy … when I’d go to San Francisco to run an errand and I’d bring my mother with me, we’d stop by the world famous Ghirardelli for an ice cream. Ghirardelli sits north of Fisherman’s Wharf near the Maritime Museum, Aquatic Park and the South End Rowing Club, where I spent a great deal of time swimming while i lived in San Francisco many years ago. I moved out of San Francisco to Benicia CA when my Mom was diagnosed with Alzheimer’s. The apartment in the City was too small to move her in so I could take care of her, so now we live in the ‘burbs in beautiful Benicia.

Even with Alzheimer’s she enjoys the ice cream. She may forget it 5 minutes later, but in the moment she will be totally focused on the ice cream with occasional pauses to come up for air and exclaim, “This is delicious,” or “This is tasty.” I get the “Marina” which is raspberry sherbet with the famous and delicious Ghirardelli hot fudge and whipped cream. It comes with a square of Ghirardelli dark chocolate, which I eat myself. I choose the Marina because it is the lowest in calories. I’m conscious of my weight. To reduce the calorie intake even more, I split the ice cream with my Mom. OK, OK, the confession is out, it’s not really ice cream, it is sherbet, but the principle is the same.

Like I mentioned, it used to be easy. We’d go to the City, usually across the Golden Gate Bridge. Even though it is longer from Benicia, it is a nicer drive. In addition to the sherbet, we’ll stop for a view or short walk here or there along the way. Then, once across the bridge we make our way to Ghirardelli where we’d get our ice cream. Often we’d brave the crowds an eat in the restaurant, but mostly, if it is nice out, we’d eat the ice cream outside looking at the beautiful view of the Bay.

Now, however, is the time of the pandemic! While this adds a few challenges to the average person, when dealing with someone with Alzheimer’s the challenges are multiplied. For the average person the rules are to wear a mask, keep social distance (six feet apart) and indoor dining is closed. The only option is to eat outside and enjoy the view.

For my Mom, with Alzheimer’s, there are the additional challenges. She will not wear a mask. She does not understand it, so just winds up pulling it right off. Also, as an elder, she is a part of the most vulnerable population to the virus, so I want to be extra careful not to expose her to it. Bringing her inside a public space is out of the question. The last time we tried the ice cream at Ghirardelli during the pandemic, I attempted to leave her outside within eyesight so I could keep an eye on her and make sure no one got near her and she did not touch anything, while I went in. However she kept trying to follow me in. With the line at the register it was going to take too way long for me to be in there. I finally had to abandon the ice cream dream and go for a walk instead. If it was a quick in, place order and out while waiting for the order, and then back in to pick up the order when it was ready, I could have pulled it off, but that wasn’t going to happen on that day. It was too risky! I did learn from that experience, and was determined to succeed this time!

As we drove passed Ghirardelli, I could see the line. It looked longer because people are spaced out, six feet apart, all wearing masks. Ghirardelli is still open during the pandemic because it is considered “essential,” as a food service, but really … ice cream? I was not complaining. While it was right there, with all the challenges, it seemed this might not work out. Everything had to be perfect, to get ice cream while keeping mom safe.

My plan was to leave my Mom in the car. The trick is to be able to park close so I can have her in sight the entire time and only be gone for a minute or two. I’m equipped with a handicap placard so this increases my chances. I was in luck! There was an open handicap spot right across the street. The next trick was the line … I had to be able to bypass the line. I took out my handy smart phone, went to the Ghirardelli website to see if they had online ordering. I was in luck! I could order through Doordash. Of course I had to sign up for an account and enter credit card information. This took about 5 or 10 minutes in total. At anytime I could have abandon the plan and no one would have cared. I kept thinking to myself, “I must really want this ice cream to go through all this effort.” In the long run and big picture it was not going to make a difference, but at this point, I was not going to quit that easily.

Finally I got to the last part of placing the order, “pickup or delivery,” hmm, could I have them bring it to the car? No, I didn’t want to complicate things. I was just across the street and could be there and back in less than a minute. The app said it would notify me when the order was ready. Everything was perfect! However within 10 seconds of placing the order, I got a notice that it was ready. Really? What, do they have Flash employed scooping up ice cream and oozing hot fudge all over it? I was skeptical. I assumed they were just saying to was ready because they did not want ice cream sitting around waiting for pickup and that they were really going to make it once I got there. There goes my quick pick up! I was going to have to stand there and wait for it while my Mom, without memory would suddenly finding herself in a strange car in a strange place not knowing how or why she was there. Can you imagine what that might be like? Whenever possible, even though I know she is safe, I do not like to leave her along very long just because of those moments of worry. Like the ice cream, she will forget the experience within a minute or two, but she still goes through the experience whether pleasant like eating ice cream, or unpleasant lie worrying about where she is and if she is safe.

Parked and ordered, I still wasn’t quite ready for the Ghirardelli dash. There are still details. Ideally I leave music on in the car for her to focus on. In my truck, that is easy because the radio plays without the key. However today I had my sister’s car. It’s a much nicer ride than the truck, so I borrowed it from her instead of taking the truck. No key = no music. I’ve learned from experience, leaving the key in the car with her is not a good idea. She likes to touch things an push button. Can you imagine trying to explain, through a closed window, to someone with Alzheimer’s how to unlock a door that got accidently locked while I was away? Again, in the truck that is not an issue. Without power locks it is hard for her to manually lock the door on the driver’s side. But somehow, with the power locks, she has managed to lock both doors in the past. In the pandemic, I do not want to leave the window rolled down, as that may expose her to the possibility of some passerby with the virus. So I’ll take the key with me.

These details seem endless that we might normally take for granted in going to get an ice cream, but now I really was ready to go. “BRB,” I said to her. There are only two abbreviations that she remembers, “BRB” for “be right back,” and “RBI,” for “runs batted in.” Don’t ask me why. “BRB,” I said, “don’t worry.” If I’m fast enough, she will not forget those words by the time I get back. However, I figured that was not going to be likely knowing they probably still haven’t made the ice cream. My heart was racing as I put on my mask and darted across the street.

There was a pickup table outside the shop, so I didn’t even have to go in. A woman was just exiting the table with her ice cream and big smile on her face. The shop employee was still there after helping the pervious woman and was looking me in the eye as I approached. Perfect, no waiting! I glanced quickly and smugly at the line of people going into the shop and then back at the employee. “I have a Doordash order for Jay,” Without a word she turned back into the shop, grabbed the ice cream that was sitting on the counter (it was ready!), and brought it back to me … in less than 10 second. However, I had to send he back in, to bring me an extra spoon. I may share the ice cream with my Mom, but not the spoon! I darted back across the street (looking both ways, of course) back to my Mom who was sitting there as happy as could be.

No, my friend, the story is not over. We still have to eat the ice cream. While we could just sit there in the car and eat it, but that is no fun. We are just a few hundred yards away from one of the world’s most beautiful views of the Bay.

While it was January in San Francisco, it was still a nice day. There was a little chill in the air, but not too chilly for ice cream. Mom was bundled in her jacket. I grabbed her by the hand and the ice cream in the other and walked her across the street. I could feel the warmth of my Mom’s hand on my left and the warmth of the hot fudge through the plastic cup in my right hand. There were many people out. I had to pause often and alter my path to keep mom away, more than six feet, from anyone. I’m glad for all those years growing up that I played Frogger. This was real life, Frogger. Then, after we crossed the street and down a path, there it was… a perfect empty bench. I say her down in the middle of it, where she could not touch the arm rests on either side. I tucked the ice cream to my side with my elbow to free up both hands and applied sanitizer to both her’s and my hands. Then the feasting began. She was loving it. All the effort felt justified. I could barely get my spoon is as she held the ice cream tight shoveling it into her mouth. “This is yummy,” she kept explaining. On occasion she’d let me hold the cup for a while and I would dive my spoon in, particularly interested in the gobs of chocolate, which were was no longer “hot,” that were clinging to the sides of the cup. In the end, I think she had more than I, but I was satisfied.

Finally the last bit of the ice cream was removed from the cup. She showed it to me that it was done. “That’s that on that,” she said. Not convinced, I took it from her and scraped the sides for just a little more chocolate. I left her there on the bench for a moment as I deposited the much empty cup in the nearby garbage can. Then back to the bench where we sanitized our hands again. I held her, slightly cold hand from the cup as we walked back to the car. Another game of Frogger ensued as we avoided others back to the safety of the car. Job well done!

A Real Abbott and Costello Moment

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The scene: Mom & Jay watching the Giants’ baseball game. Mike Krukow and Duane Kuiper are announcing:

Krukow: He does that a lot like Bobby Bonds always did.
Mom (look of confusion on her face): Bobby Bonds? Who is Bobby Bonds?
Jay: Bobby Bonds was Barry Bonds’ father. (Mom still looks confused).
Jay (trying to guess what she is confused about. Sadly, her cognitive abilities have been declining with her age): Barry Bonds was the Giants’ big star that retired a few years ago.
Mom: I know that, but I’ve never heard of Bobby Bonds (she’s trying to put things into perspective)
Mom (here it comes): Who played 1st?
Jay (in disbelieve she just asked that question. I can’t think of how to reply until I just start laughing): They both played left field.
Mom (starts laughing and references Abbott & Costello): Who played first (laughing).

She meant who played in Major League Baseball before the other.

The 3 Day Summary

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The event started with the opening ceremony in Corte Madera. I was a flag bearer in the ceremony carrying the “My Mother” honor flag. When the spokesperson for the event started the walk by marching off stage and down the center isle, the flag bearers followed and that was it. The walk had started, I following the spokesperson with the other flag bearers and 400 other walkers behind.

As I passed the opening chute, my badge was scanned to put me in the computer as started and they handed me a “route card.” I was surprised the route card did not have the route on it at all, just the mileage to each pit stop, and lunch and the various designated cheering spots. “Where do we go?” I thought to myself. It wasn’t much of an issue because there were walkers in front of me. I could just follow them. Soon it became clear that I was just to follow the arrows at each intersection. There was also a security volunteer at these intersections to point the way.

Not knowing the route created a guessing game for me as to where we were going to walk. This was kind of fun and surprising. The downside was that I could not contact friends along the way to let them know where I would be.

Right away I started talking to another walker and walked with her the first few miles to the first pit spot. She was a veteran walker, having walked in nine 3-Day events. I learned a lot for her. At the pit stop she said, “Nice walking with you,” and we parted ways. I started to understand how this worked. You walk with people for a while and then move on, usually at the pit stops.

So the day went, sometimes I walked alone, sometimes with other people, getting to know them and hear their stories.

On this first day, the hardest part was between mile 5 and 9 as I was starting to question myself, “What is this all about?” I could feel the blisters starting to form on my feet and I was thinking about the numbers of miles and time I still had ahead of me. I felt depressed. Wasn’t there something better I could be doing?

At the mile nine pit stop I doctored my feet with Moleskin and fueled up. Lunch was at mile 15, just 6 miles ahead. We had the familiar route through the Mill Valley bike path and Sausalito that I had biked many times. As I drew nearer to lunch I picked up my pace to what I came to know as my “lunch gait.” This also came with much enthusiasm.

After lunch we crossed the Golden Gate Bridge and into the Presidio where camp was. The last two miles, once across the bridge, was also tough. My feet were sore from all the pounding and with each step they were being pounded a little more. I’m sure there was a mental affect as well, know I was so close, I’m sure my mind was finishing ahead of me.

I was happy to finish, but then had to set up my tent in the cold windy weather that we were faced with. A volunteer helped me, after which I climbed in my tent and fell asleep for a short nap.

When I awoke I explored camp. I found the showers and took one, ate, and discovered the massage chairs that Bank of America had set up for us. I relaxed in one for about 20 minutes. The rest of the evening I relaxed in the dining tent where they had a show for us. I was back in my tent at 8 PM where I fell asleep.

The next morning I prepared myself for the 22-mile walk that we had ahead of us and headed to breakfast. I have to admit the 22 miles seemed daunting so I was a bit nervous.

I grabbed my breakfast and a seat alone in the dining tent. I look around for some people that I might be able to join, but mostly I see people in groups talking to each other, that I don’t want to interrupt. I went to the far side of the tent where I knew there was a heater and had my breakfast there. About half way through a youthful lady came up to me with her breakfast, ready to eat. She commented about me being alone. I invited her to join me and introduce her to the heater nearby, “Oh,” she said, “now I know why you are here.”

The standard questions we seem to ask each other, “Is this your first walk?” and “What is your inspiration to walk?” From there the rest of the conversation can unfold … of not. Like myself it was Jody’s first walk. She told me the story of her month passing away last year after a battle with breast cancer. The first part of the story was so similar to my own mother’s; a small lump was found that had spread to the lymph nodes. Yet in her mom’s case, after it was removed it came back all over her body (stage 4 breast cancer). “It just a question of ‘how long,’ after that,” she said to me. This was sombering, as I thought of my mom. The doctors told us, with the estrogen blockers that mom was taking that there was an 11% chance the cancer would return stage four, like Jody’s mom. The doctors say, at that point, that there is very little they can do. Jody lost her mom. The future has yet to unfold with mine. We try to increase her odds by focusing on a better diet, but that is not always easy.

Soon Jody’s sister-in-law, Lynn, joined us. I liked the two of them. I returned to my tent to make my final preparations for the day and then joined the crowd waiting for the walk to start. There was Jody & Lynn so I stayed with them as we walked. I walked with them most of the day. We had a nice time laughing and telling stories. They were from out of town so I became their tour guide showing them the sights as we passed them.

It was around mile 15, after lunch as we were walking down the Great Highway that it hit all 3 of us at the same time, tired, sore feet. We started dragging a bit, yet we still managed to joke and laugh. One of our ongoing jokes for the day was to try to extend the walk in our minds two miles because the last two miles is always seems to be the worst. If we extended the walk in our minds two miles then we would “trick” ourselves into not finishing mentally before the end. But, as Lynn said, “That trick has gone to hell,” as we were already miserable at mile 15 with 7 left to go. We just had to plug away.

We circle up the hill by the Cliff house and through the trails at Lands End. That was when my left shin started really hurting, shin splints, I thought. Also I could feel my left calf tightening up. I didn’t think I would be able to finish. Jody said something to me that really brought home the purpose of the entire event, she said, “I think no matter what, I would finish. It doesn’t matter about the pain. I just would have to think of my mom and what she went through to realize the pain is hardly anything.” True and that’s is the point. We are intentionally choosing to suffer to honor those that do not have the choice. It is a small token of relating with them and hopefully bringing awareness to others with our sacrifice. Still there is a fine line between pushing through the pain, accepting the suffering and damaging one’s self. I was not sure where that line was with me.

I made it to the next pit stop and visited the medical tent. They did not impress me. They said there was not much they could do. They could give me ibuprofen and some ice rub to put on it. They recommended when I get back to camp, still a few miles away, that I visit “sports medicine.” I accepted what they had to offer. After a while I felt better, but was aware of the fact that I was just masking the pain. I walked on gingerly as if it was still there.

Back at camp I ate, showered and spend about 15 minutes in the massage chair before visiting the medical tent. I had to fill out an intake form, which made me realize this was a serious set up. It was not just a bunch of amateurs volunteering for an event. They had chiropractic on one side, massage and taping on the other. In the tent next door they were tending to people’s blisters.

I expected to go to the massage side where they would work on my calf and tape my shin, but they directed me to the chiropractic side. I explained the issue and he worked on my foot a bit. After a few adjustments I could feel the calf relax. The pain in my shin went away. I still had pain in my ankle, however. He told me if it didn’t go away in the morning to come back before the walk. They would be there at 6 AM. Overall I felt good and confident with them and happy about it.

As I left the tent I was greeted with my mom, father and brother who had come to visit. It was nice to see them. We went into the dining tent and visited for about an hour before they grew tired of the cold and wind and went home. While the dining tent was protected from the wind, it was still cold and we could hear the wind rattling the tent and howling outside.

The next morning I still had the pain in my ankle. I was at the med tent right at 6 AM when they opened. He adjusted my foot one more time and then taped it. He explained to me that because I was walking on an injury I was favoring one side of the foot over the other, thus creating an imbalance in the muscles. The tape would help make up for this imbalance. He had me walk around. The pain was gone!

Overall I felt enthusiastic about the day. The bulk of the walk was over. We had only 14 miles to go today. While I knew most of that would be on hills and concrete (as opposed to yesterday, where about 50% of the walk had dirt trials), making it a tough walk, it still had the feeling of being nearly finished. My enthusiasm was high. As the walk started, however, I discovered my energy was low. I was just exhousted from the two days before. That seemed to be the energy with the other walkers, yet we marched on. There did not seem to be as much talking … just focus on walking.

I did not see Jody & Lynn that morning so I walked alone. I missed them. On occasion I would strike up a conversation with another walker … briefly, but mostly I took this day alone.

We walked from the camp at the Presidio, towards the panhandle of the park. I sent a text message to my friend that lived there, but did not get a reply until after we had passed.

We walked down Height Street and up the hill, half way up Twin Peaks. I kept wondering if they were going to take us up there, but we turned down the hill towards the Castro. This was a difficult stretch going downhill on the concrete. My feet were pounding.

We went through the Castro and wound our way through Noe Valley, getting ever so close to my old neighborhood that I had just moved out of 3 weeks prior. I sent a text message to my friend nearby, but did not receive a reply until we had passed.

Lunch was at mile 10, leaving only 4 miles to go on the day … on the entire event. The excitement of being finished began to overpower everything else, the pain as well as the desire to eat and drink. I spent only 15 minutes at lunch. I did not change out my socks and moleskin like I did at lunch the days before. Who cared if I got blisters now? The days ahead I would be home relaxing!

After lunch I continued on with my pre lunch gait that I had adopted the previous days … maybe even a little faster. I completely skipped the next (and last) pit stop. We crossed Market Street passed Geary and wound our way through Japan Town before turning towards the Civic Center where the event would end. This last stretch was all downhill. My excitement was so great that if we were allowed to run I would have been. Instead I was walking at a pace just below jogging. I kept reminding myself the difference between running and waling. In walking there is always at least one foot touching the ground. In running, or jogging, there are points where both feet are off the ground. I was focusing on going as fast as I could while keeping one foot always on the ground … a walker!

I was passing other walkers left and right as we passed the City Hall and turned the corner. I could see the finishing line. I was not going fast enough, but as fast as I could. I drew nearer and could hear the cheering. There was a chute of human volunteers leading me into the finishing coral, all cheering for me and giving high fives, I was a bit emotional as I told them, “If were allowed to run I would be.” I made my way into the chute and finished!

I looked around, the place was empty, but for a few walkers and the volunteer staff. “Where is everyone?” I thought. I was one of the first ones to finish. I had 3 hours to kill before the closing ceremony. I drank some water and Gatorade and ate a few snacks before heading back up the course a few blocks where I would spend the next two hours cheering the other walkers as they came in, sometimes shedding tears of joy with them having finished such an event.

So I met some friends, heard some stories and challenged myself. I raised some money that will hopefully do some good. It’s a small dent in the overall awareness and progress against this disease through our western paradigm. I believe in progress. I believe in a time that paradigms will come together and the world can be free of, not just this disease, but also all.