#dementiastories – Bob with one "o"

My goodness. Bob has been on my mind 24/7 this month. And it’s not a bad thing. I think it’s because a year ago right now, things were rough. Bob had declined to where he needed help with almost everything. He couldn’t hold his spoon to eat or hold his coffee cup without dropping it. He had a terrible time getting into bed and just couldn’t figure that out. He would just plop himself into bed and where he landed is where he would sleep. Even if most of his body was hanging off the bed. Once super fastidious, Bob had forgotten how to shave and taking a shower was a very difficult process that he (and I both) dreaded. He was confused over what Fixodent was for and there were times he tried to brush his teeth with his razor. It was so sad to watch the physical decline that most people don’t know is associated with Dementia. Yep, the brain just stops being able to tell the body what to do. The body just stops being able to function without the brain directing it.

Bob was on a downhill slide, and it was excruciating to watch. Thinking back to last October/November brings me chills. But it also is a reminder that Bob was not living a life that he would have wanted. Yes, it was time for him to pass and sometimes these memories of the rough times make me realize that I didn’t lose a healthy happy Bob, I lost the Bob that was ready to go. Weird as this may sound, that helps a bit. I know how Bob wanted to live and how he was living last October/November was NOT how he would have ever wanted to live. On that issue, I am 100% clear.

But this year, I still have lots of changes to process. I am still not used to my new life without Bob. I’m not miserable. I’m just still trying to sort through my feelings about everything! I can be positive and upbeat and then downtrodden and miserable in the same hour. I can cry at the drop of a hat over a tiny thing or be perfectly content and smile during the most emotional experiences. Yes, I’m a mixed-up mess.

I’ve read many books about grief— about 5 stages, 10 stages, etc., but I just don’t think that those books cover everything. They barely scratch the surface. Just when I think I’ve worked through most stages, I come across another hurdle or issue. Maybe I’ll write my own book! Maybe my book would have 50 stages of grief or more!

So today I take another big step in this grief process that isn’t in any of the books I’ve read. Today I change my Facebook status to widow. Yep, it’s finally Facebook official. I know it sounds silly, but my stomach is churning a bit. Dare to move ahead. Here I go.

Bob with me and with his daughters Shelly & Julie
Fall 2021

I saw a YouTube video recently that said that a good way to describe Dementia is to get a big chalkboard and write down all the things that the person with Dementia can do. And then every day, erase one of those things. Boy, that’s real. And so sad.

In my mind, I took a quick inventory of some of the things that “Bob with 1 o” can no longer do on his own. Driving, using a cell or land line, handling his medications, operating the washer and dryer, recognizing the sound of the doorbell or smoke alarm, using the TV remote, understanding a menu, carrying on a conversation that makes much sense, and so much more. The list of items erased would be long and a bit daunting. So much of the chalkboard would be blank. Little by little Dementia is erasing Bob.

So, I flipped a switch in my head and thought I should make a list of the things that aren’t erased from that chalkboard.

Bob still knows me. Most of the time. Even the rare times that he forgets my name he seems to know that he cares for me. He smiles and greets me happily when I enter the room and he is eager to give me three kisses in a row. That’s his habit and he hasn’t forgotten that!
Bob still has a deep love for his children, grandchildren, and great grands. Most of the time he has them all mixed up by age and name, but he still speaks proudly of them and any mention of them brings a smile to his face.
Bob loves his home and feels extremely comfortable here. He doesn’t remember where he has lived before here but daily, he mentions how much he loves this house. I take that as a WIN!
Bob has fond memories of his career on the San Diego Police Department. His stories don’t align with reality very often (he was the police chief of whole United States, he was on the department for 502 years, he has the largest retirement income in the whole world, etc.) but the memories are positive and he has a good feeling about that time in his life. He did love his job and went to work eagerly back in those days. I’m glad he has upbeat recollections even if they’re all very mixed up!
Bob still likes to have an “adventure”. Although our bike rides and long walks have been replaced with short strolls with lots of sitting, Bob still enjoys the places we go. Even if it’s a place we have visited many times like Lake Murray or Mission Beach, it seems new and exciting to him. Often, he asks me how I heard about these places not realizing that we’ve been there many times before.
Bob loves sweets and desserts. Some things just don’t change. Daughter Julie recently named him Cookie Monster!
Bob loves his “stuff” and can’t leave home without everything he thinks he needs. And then some. Many years ago, he used to say “Spectacles, Testicles, Wallet, and Watch” and he would check to make sure he had everything he needed when we left the house. Nowadays he continues to be so worried about having what he needs so he takes too much—3 pairs of gloves, 4 face masks, numerous handkerchiefs, his wallet, a money clip, house keys, loose coin, and a non-working Fitbit. Always a jacket or two. And of course, a baseball cap. What was once an organizational trait is now a disaster. He has so much stuff jammed in his pockets that he can’t find anything or remember what he even has with him!
Bob still is an avid TV watcher. Just nowadays, he pays no attention to what he’s watching. A Spanish informercial, daytime soap operas, and sporting events of sport or teams that he doesn’t even know. He calls most programs “the news” even if they are Judge Judy or Doctor Phil. Sometimes he watches for hour upon hour without any sound. I don’t mind. I like the quiet time.
Bob still has Jesus in his heart. This is the biggest constant and I pray that his faith only grows stronger and doesn’t get erased off that chalk board. He enjoys telling people that he wakes up every day and gives thanks to God for letting him live another day. When we say grace at a meal, he’s quick to add his own little version of “Come Lord Jesus be our guest”. He has a sweet childlike faith that shines through the dark cloud that hovers over him.

So…

Will more and more things get erased off the chalkboard? Absolutely. Dementia is progressive and it seems to be picking up speed as it rolls along. Steam rolls along. Steam rolls along down a steep hill.

So…

As I type this, I’m focusing on the Bob that is still here. Changed. Altered. Different. But still Bob.

So…

I’m not mourning the losses or thinking about what’s been wiped off the chalkboard. That’s too painful. I think a big part of my journey with Bob’s journey is accepting the fact that things will never go back to what they used to be. I’m working on that.

So…

Thanks for being on this journey with me. You surely have been a huge blessing on this bumpy ride.