The napkin

 

During our conversation, dad asked me if I needed anything. He asked me if I needed any money specifically. I told him I was fine but he said how about a few quarters. I smiled and said sure. He reached into his pocket and pulled out a napkin and placed it on the arm of my chair. “This should do it.” He said.



Some who has never witnessed a person with Dementia would probably shake their head in disbelief. How on earth can someone think that a crumpled up napkin resembled anything close to a few coins? What are the differences of a piece of flimsy paper to a solid piece of nickel? Well, first there is the weight comparison. A quarter weighs more than the napkin. A napkin most likely feels like a feather compared to the solid coin. Then there is the texture, the quarter(s) are smooth and round where the napkin is wrinkled and crumpled into a ball. Color contrast, a quarter is shiny, the napkin is dull. So clearly there are differences between the two. It is very difficult to understand how a person would think that they are the same thing. But not for a person with Dementia.



When a person’s occipital lobes in the brain are damaged (Dementia) it stops the brains ability to process visual objects and connect it with memory. So that makes it hard for people to recognize objects or cause misperceptions of everyday objects. It is a very sad but true reality for those who are living with and around this disease. I have seen dad use the tv remote as a phone (which I read is very common), place a napkin in his mouth thinking it was a slice of pizza, and mistake me for someone else; just to name a few of the misperceptions that I have seen with dad. The first time, I witnessed it, I was in disbelief or shock I guess you could say. It doesn’t seem to faze me much anymore, I just go with the flow. That was until he handed me the napkin.



Was another visit where nothing seemed to be going well. Hard to keep him engaged, hard to think of any positives. I was angry at the world that he was there and that this is where I had to go and see my dad. Sad that he and I couldn’t carry on a “normal” conversation like we have done for so many years past. I was nauseous from the smell. No matter how much a nursing home staff cleans and tries to keep up with patient hygiene, there is always that lingering smell mixed with disinfectant spray. I don’t blame anyone for that, I just feel for them. I know it is hard. I was heartbroken to think that this is the way my family is going to spend the rest of my dad’s life with him. To put it simply, I was just pissed off.



Dad ended up closing his eyes and falling asleep for the rest of my visit. I didn’t wake him. Just kissed him on the top of his head, whispered I loved him and quietly walked out. When I got home, I decided the best thing for me to do was to just put on comfy clothes and lay on the couch. I wasn’t in any mood to do anything. Dinner was going to have to be takeout and the pile of laundry I had to do would have to wait until tomorrow. As I started to change my clothes, I reached into my pants pocket and pulled out the crumpled napkin that dad had given me a few hours prior. I held it for a minute thinking I should toss it. But why didn’t I toss it on my way out? Why did I stick it in my pocket? Something stopped me from doing that and I guess it could have been just an after thought or maybe in some way, I wanted to keep something he had been holding on to. I don’t know why that napkin followed me home, but it did. So I folded it up nicely and placed it at the bottom of my jewelry box. I don’t know if I will ever unfold it again, but what I do know is that I have it with me. A small but powerful token of love. A memory to remind me that even in illness, my dad is always looking out for me, seeing if I need anything. (Silver lining).

Kindness matters

 

Growing up, I never knew my dad to be mean to anyone. He was always a communicator, an optimist, and a go getter. If someone had a problem with him, he would do his best to fix the problem whether that was to change his behavior or change how he viewed the situation. But he was never mean…to anyone. I can think of several times throughout the years of hearing my dad talk about town politics and people not agreeing with him and his views. But even though there were differences, he was willing to talk it out and see others views, even though he stood firm in his. I think this tells a lot about my dad. Something I am proud to have learned from him. There is a saying “Be kind to unkind people-they need it the most.” Some would disagree with his statement, but not dad and not me. I think we both are just the type of people who can see that when someone is mean, it probably means they are hurting. And even today, my dad continues to be kind to those who need it the most.



I knew from the first week that Bob (not his real name) was going to be a character. I was sitting in the dining room with dad at the new place and Bob was staring at me, I smiled at him and he said “what do you think you are looking at?” Then the next visit I heard him in action as he yelled at one of the nurse aides about something he wasn’t happy with. Another visit, he comes over to where dad and I are sitting and dad asks him “Did you catch any fish?” And he answered with “It is none of your damn business if I did.” Even the nurse told him that was unkind and to stop talking that way or he would have to leave the room. My mom had mentioned a few times that Bob was not very nice to dad when she was there either. For a few weeks I observed Bob every time I went to visit. It was hard not to feel for him. But I am also protective of my dad, so there was also a little bit of frustration towards this man. He doesn’t know my dad, my dad is kind, and I didn’t want dad to be treated like that. But as I observed Bob, I noticed he watched my dad like a hawk. I don’t know if it was so he could swoop in at any chance he could find to jab at my dad or if he really liked my dad and wanted to be friends. I’d like to think that maybe it is because my dad acknowledged Bob; he would say “hi” with a wave of his hand, try to start a conversation, or just smile and maybe that was starting to change Bob’s heart. Usually dads greetings were met with Bob ignoring him or saying something rude. But my dad never stopped trying or be unkind back. So I decided to follow his lead. Every visit from there on out, I started to say hello to Bob. And slowly Bob would speak to me. This last visit, dad and I were sitting and having some coffee when Bob came in and sat down. We said hello to one another and that was pretty much it. But then my dad said to him, “I know you probably don’t like this sweater I am wearing.” Bob responded with “Well Tony, I do and I was going to see if you’d let me wear it sometime.”



A few days ago, my mom told me that when she arrived, dad was asleep. When he woke up he was very sad. He asked her where his “friend” was. She asked who he was talking about and he said “Bob.” Come to find out Bob was taken to the hospital a few days prior for being sick and had not returned. What a true testament on how powerful being kind is. My dad could have easily been hateful back to Bob. He could have said it wasn’t worth his time to try. But that isn’t my dad. Some people say being kind is weak. I disagree. I think being kind is one of the strongest qualities a person can have. Thank you Dad for who you are, your lessons are pretty amazing! (silver lining).

Rough days

 Not all visits are easy to find the silver linings.  I would be lying if I said that I didn’t have to sometimes search…really, really hard to find one.  As I did today.

 

Dad was very anxious.  As we walked in the nurse was coming towards us and stated that she was actually looking for my dad.  She said he had been wondering a lot today and she was not sure where he had wondered off too.  I started to panic for a minute worrying if he was stuck in a bathroom or someone’s room and couldn’t get out.  But as we approached the living room area, there he was half sitting, half lying down on the sofa.  The lights were dimmed and Family Feud was playing.  There was no huge grin on his face when we said hello, there was no excitement in his eyes, just a very bleak nod and hello.  I thought the boys would even bring him a smile, but we got nothing.  We sat beside him and didn’t get a whole lot of conversation.  He told us he had just treaded through the water outside and his socks were all wet.  I looked down to find that one of his socks was missing.  He said he needed to go and grab something and got up.  He was having a hard time getting up from the sofa, so I helped him.  He walked over to a set of shelves, removed a book and placed it on the table.  There was a speaker sitting on the table as well and he said he needed to get the key.  Fiddles around with the speaker box for a brief moment and then returned to the sofa.  Within minutes he was trying to get up again.  So I stood to help him up and followed him to the hall way.  He informed me that we were going to go get something to eat.  As we were walking down the hallway he said look at all of those big spiders.  I desperately started looking because I hate spiders.  Luckily there was just one spider curled up in the corner of the hall, someone had already stepped on it (I imagine it was Dad).  We got to his room, walked in, and walked back out.  This went on our entire visit.  Up and down, up and  down, no conversation just short sentences that none of us understood. 

 

No big smiles, no hugs, and a lot of silence.  I even went in to give dad a hug and I think I scared him because he jumped a bit.  Think Vanessa, think.  There has to be something good, there has to be something to make this awful, depressing moment feel like something other than what it is.  I got nothing.  I started to cry.  I started to get angry and felt the weight of it all crush my soul.  I didn’t want to be there any more, I didn’t want to face the realization that this is our life.  I just wanted to run out of there and scream.

 

On the way home, we drove through the country.  We had the windows rolled down and the wind was blowing our hair around (well, I guess just mine HA!).  The sun was setting over the corn fields.  There were combines harvesting the corn, a dust filled the air.  The air smelled of crisp fall like weather, hard to explain to anyone who doesn’t live in the mid-west.  The breeze coming through the truck was warm but yet a little chilly due to the setting sun.  I laid my head back and took it all in.    I love this time of year.  But I hate the season of life I am in.  And then it hit me, and I went back to the blog post I wrote months back about living in the moment.  So I looked over at Dennis who was enjoying the breeze and silence, looked back at the boys who were doing the same, and smiled.  What a beautiful moment.  I realized that I have to take my visits with my dad as they are.  Not force anything, just let them happen as they are meant to happen.  But the most important thing I realized is that I have to be okay with that.  I can’t be angry over something that none of us can change.  Dad has rough days just like all of us, and that is ok.  Silver lining. 

 

The lottery win!

 Anyone who knows me, knows that I am not a big gambler.  I have been known to take $50 to Las Vegas with the understanding that when it is gone, it’s gone.  I love getting a lottery ticket in my Christmas stocking or a birthday card knowing that I have no expectation of winning, but thinking it sure would be fun if I saw a prize show up.  But you won’t find me buying them for myself or putting more than a few dollars in a slot machine.  Why?  Because I literally get sick to my stomach when doing so.  The thought of losing $20.00 in a matter of seconds is terrifying to me.  I think of a million other things I would, could, and should have spent that $20.00 on.  So I found it so funny when dad brought up this very thing. 

 

We were having a nice conversation about the boys.  He always, always asks me about the boys.  I think that is what we spend most of our time talking about which is fine by me because I could talk about them all day long, every day.  HA!  But as we were discussing how school and sports are going, dad says, “She only put 3 coins in.”  I asked dad who he was talking about and he said “Vanessa.”  He went on to say that I was sitting at the slot machine and only put in 3 quarters because I am a “tightwad.”  I laughed out loud when dad said that because even in the midst of all that is going on, he still knows his daughter.  He must still have this memory of me sitting at a slot machine in Las Vegas as a 20 something, broke, college student putting in the last of my coins. 

 

The brain is amazing and frustrating all at the same time, especially when a brain disease has taken over.  One moment, dad is talking to me, knowing it is me, and talking about the present.  And then in a matter of seconds, he is talking about me to me as if I am a stranger talking about memories from 20+ years ago. Most days, I find it depressing.  I want to scream and cry and ask “Why?”  But this particular conversation had me laughing and I was able to put aside the sadness and play along.  I ended up asking dad, “Well did Vanessa win anything?”  He grinned and said “Yep a whole bag full!”  I can honestly tell you I didn’t win a bit of money, but I sure won the lottery of dad’s.  (Silver lining).