A very different Thanksgiving

Thanksgiving sure did look different this year.  Wednesday, dad started a new medication that caused him to sleep for 48 hours straight.  One of the side effects is drowsiness, but with his other medications it made him extremely tired and he went into a coma like state.  We were worried, scared, and didn't know if dad would come out of it.  The nurses and doctor assured us that they were watching him around the clock and would call us right away if something changed.  We left thanksgiving afternoon feeling the sadness of it all, wishing we could go back to the previous thanksgivings spent together just one last time.  

I didnt sleep much at all Thursday into Friday morning.  I was too anxious, fearing at any moment I would be getting a phone call saying dad was not getting better.  But prayers were answered and Friday showed a turn around.  

When we arrived, the nurse was getting dad ready.  I was not 100% positive that he was any different than the days before,  but we waited at the end of the hallway hoping we would see him come out that door.  Minutes passed that seemed like a lifetime.  All of a sudden his door opened and he came out clutching the nurses arm, holding on for dear life.  He was clearly still very groggy, but he was up which was a blessing its self.  As soon as he saw mom, he smiled.  

It took awhile for him to wake up and get going but once he was able to eat some toast and drink some coffee, he started to come back.  His words were still very slurred ( after effects from the 48 hours of slumber) but he would give us a half smile and we knew he was improving.  

This picture of the 4 of us, may very well be the last picture we take as a family.  But it is a reminder of 4 people who are going through one of the hardest things they've ever faced, but still 100% showing up for one another.  So yes, a very different take on Thanksgiving this year, but also a pretty powerful one.  Reminding us not to take anything for granted and to hold on to one another.  Silver lining. 

Remember who you are

 

 Dad was very agitated.  I first noticed it as I walked into the room.  He was trying to remove one of his socks and was having a difficult time.  He was saying cuss words and you could see the agitation in his eyes.  After a brief greeting, he went back at trying to remove it.  He made many attempts but had no luck.  However, I noticed he was pulling on his pant leg, not his sock.  At one point I asked him if he would like for me to help him put his shoe back on with the hope that having the shoe on would make him forget about the sock.  He said that would be fine and as I kneeled down to put his foot in the shoe, he looked at me with “that look,” the one he used to give me growing up when I knew I overstepped the boundaries.  So I left the shoe and sat back down. 

 

We watched Family Feud for a bit.  At one point he got frustrated about the time it was taking for the contestant to answer the question.  He asked what was taking them so long.  Dennis laughed and said to “make it suspenseful Tony!”  Not long after that, I heard dad mumble “asshole” under his breath, hopeful it was towards Steve Harvey and not Dennis.  The visit continued with dad working very hard at trying to remove his socks and other shoe.  He kept saying something about the water and the rocks hurting his feet.  I have noticed that he has been very concerned lately about his feet and them being wet.  I remember growing up my dad never liked having wet socks.  I remember watching him put his socks on in the mornings before heading to work.  He would always sprinkle Gold Bond foot powder in the socks first.  Looking back now, I realize that dad probably hated wet feet because of his time in Vietnam, walking through all the water and muck.  Maybe his mind is back to that time, I thought.  He finally got the socks/other shoe off.  He pushed them off to the side and not even a second later, one of the aide’s came by and noticed his bare feet.  She bent down to help dad put them back on, but his agitation was clear and she backed off.  So instead she went and got him some gripper socks and he gladly allowed her to put those on. 

 

I hadn’t seen this much agitation from dad in a long time.  It seemed the longer we stayed, the more frustrated he got.  Almost like he was angry that we were there.  It sort of made me sad because my dad is not like that.  I know it is the disease and I can’t blame that on him or even take it personally.  As I sat there and continued to switch from watching dad to Steve Harvey I started to think about an incident the week prior where I let anger get the best of me.  And I don’t have Alzheimer’s to use as an excuse.  Not one of my finest moments, but one I will learn from.

 

From the time I woke up, I knew it was going to be a rough day.  By the time lunch rolled around, I had decided the only thing that could make me feel any better was going to be a bean burrito from Taco Bell. My trip to Taco Bell ended with an exchange of unpleasantries with staff and no bean burrito.  In the moment, I was mad that I sat in the line for 15 minutes only to find out they couldn’t take my order.  In that moment, I was mad when I saw 3 employees standing outside having a break.  On a good day, the Vanessa I want to be, would have still been disappointed, but understanding that there may be something more going on that I can’t see.   Maybe the computers were down.  Maybe they had an employee get sick or an emergency.  Whatever it was that caused the issue, I realized it had nothing to do with my dad being sick.  It had nothing to do with me being in a bad mood because of the season of life I am in.  What happened at Taco Bell did not warrant me to take my anger out on someone else.  And it hasn’t sat right with me since. 

 

I asked myself, if dad and I could have a conversation today about the Taco Bell incident, what would he say to me.  And this is what came to mind.  When I was of age to start going out of the house on my own without a parent, my dad would always say to me on my way out “Remember who you are.”  “Ok dad, will do,” was my response with an extra dose of the side eye roll.  But as I look back now, I realize what he meant by that.  He was telling me to remember how to treat others.  Remember to treat others as you would want to be treated.  He was reminding me that I came from good, decent parents who taught us to do the right thing.  And I think if I could talk to dad about this, he would tell me the same thing, “Remember who you are.” 

 

So I swallowed my pride and I wrote a note to the employees at Taco Bell.  First telling them that my rudeness was uncalled for and then thanked them for the work that they do.  I humbly ordered my bean burrito and asked to speak to the manager.  Being that it was lunch time, I didnt want to take up much of her time.  I explained why I was there and handed her my heartfelt note.  I dont know if she read it or threw it in the trash.   But that’s not why I did it.  I did it because it is the right thing to do.  It is important to own a mistake.  It is important to remember that all though we are not perfect humans, it is important to still treat others with kindness even in a very imperfect world. It is important to stand firm in who you are and who you want to be.  I don’t want to be the angry person who takes their anger out on others. 

 

Thanks to my dad for those four words.  He probably never understood the power behind them or even realize that I still think about him saying them to me.  But was and is a true gift to me.  (silver lining.)   

 

 

 

Daily chores

 

I brought in photo albums of the boys to look at with dad. I hadn’t tried this before, so I thought maybe it would be good for him. Boy was I wrong. Dad was enjoying his coffee and apple cider donut I had brought him, when I took the albums from my bag. I opened it and said “Look dad, here is when Myles was born.” He looked, but seemed to be more interested in the donut. I skipped through some pages until I came to a photo of the boys together. I pointed out that this was when Myles met his baby brother Will. Dad burst into tears. “Dad, why are you crying?” He wiped away his tears and said because “I miss that I am not there.” Then I burst out into tears. I had no words, felt like an ass for bringing in something that made him sad, and quickly put the albums back into my bag.



Dad finished his donut. He turned himself in his chair and started talking to a few others in the room. He introduced me as his sister and then told them “Don’t listen to what she says, she talks too fast.” I chuckled. Dad got up out of his chair, folded up the table cloth, placed his wadded up napkin underneath it, and then placed the table cloth back over the table leaving a little mountain of napkin. Again I chuckled, wondering why he did this. He asked me if I was ready and I told him I was. I asked him where we were off too and he said something about needing to take care of some money. I gladly went with him, excited to see what adventures awaited me.



We first walked down the hallway. We didn’t get far before we turned around and headed back the same way we just came from. Once we got to the sitting/family room, dad attempted to open a closet door that was locked. He tried several turns of the knob trying to open it with no luck. I asked him what was in there and he told me the choir was in their singing. I told him we were too late and they locked us out. He shrugged and pointed to a chair and told me to sit. I did as I was told. He walked over to the couch and sat. He was pretty talkative this visit which was a breath of fresh air since the last few weeks was hard to get him to talk much at all. He tried to talk to a woman sitting next to him but she does not speak. I felt bad for him because he kept asking her about her new machine (aka…her walker) and she would just look at him. I tried to intervene a little and change the subject. There was a wall quote on the wall behind me. Dad pointed at it and asked me if I wanted the fries or the burger. I just smiled and said both sounded good. He tried to get up off the couch but it sits pretty low. I went over to help him and he looked at me strangely. So I patted him on the shoulder and went and sat back down. We watched a little bit of “Gunsmoke” that was playing on the television. He laughed at something that was said on the television, thinking it was something I said. He tried to get back up again. I went back to help him up, this time he gave me his arm. He told me it was time to “get to work.”



He walked over to the baby doll crib and inside there was a basket of play food (fruit, vegetables, and cans). He grabbed an apple and told me he needed to put away the bread and water. And without a breath, he turned and walked over to the set of shelves. On the shelves are baskets with all kinds of goodies. The one basket he pulled out had a plastic spoon, a blue crocheted wash cloth, a green fleece blanket, and a green scarf. I again chuckled wondering how these items got there. I can only imagine, but I think it is precious that these “treasures” were put there by my dad or his friends with a purpose in mind. Dad threw the blanket and the scarf on a chair next to the shelving unit. He then placed the wash cloth on top, took the spoon and started stirring the cloth around. I asked him what he was doing and he said he was “folding clothes.” He then handed me the spoon and asked me to put it back. I asked him if we were going to put the clothes away and he said “nope.”



Our next chore was to put the coats away. Dad walked over to another sitting area. On the couch was a mat or I guess you could call it a pad. Probably to help with any accidents that may occur. He picked it up and folded it in half. He told me it was “his jacket” pointing to the open door way and then told me to put it away. As he turned to leave, I placed the pad back onto the couch. Dad walked back to the shelves and informed me that the plants needed some help. I asked him what kind of plants they were but he didn’t answer me. He was already sitting down in the chair with all of the “folded clothes” taking off his shoe. I asked him why he was taking his shoe off and he said so I could put cream on his toes. I asked him where the cream was and he said he didn’t have any. I watched him as he carefully put his shoe back on. And then he just sat back. I sat down on a table next to the chair. We talked for a little bit more; about the picture of the truck hanging on the wall, the red hat on the hook, and how his leg had “caught fire” from the knee down. I don’t always know what dad is talking about, but I always act like I do. I guess it is my way of making him feel heard.



As I am walking to my car I let out a huge sigh. That was exhausting I thought. Up and down and all around. But as I drove home and recaptured the moments from the visit, I realized that dad and I were doing chores together. We were putting food away, folding clothes, and hanging jackets. In my dads world, we were taking care of things together, just like I had done as a kid. Bringing in the groceries from the car, getting the laundry from the dryer to fold, and hanging up coats draped over chairs after playing in the snow all afternoon. It sure brought back memories for me and my drive home was a lot lighter. (silver lining).

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).   

 

Don't sweat the small things!

 Years ago, I was a preschool teacher. I loved it. I loved the sweet little faces and the funny things they would say. I taught for many years throughout college and after. I have stories and memories from my time teaching that I will carry with me forever. Now that dad is living in a memory care facility, I am reliving those earlier years for I am finding that preschool tots and memory care patients have a lot in common. And I find it so sweet.



When I walk in to see dad, the hallway is eerily quiet. Hmmm, I think. Reminds me of nap time. As I walk down the hallway, I stop at dad’s room. He is asleep in his recliner with tv remote still in hand. I don’t bother him and continue towards the dining room. Every room I pass, I notice a sweet soul either curled up in their bed or sound asleep sitting up right as they fell asleep in a sudden moment. Just like nap time years prior. I would finally get all of the children on their cots with their blankets and stuffies. Some would want to sit up and read a book which was fine as long as they provided quite for their friends. Others were out as soon as I tucked them in while the ones who insisted on reading would be sound asleep with in minutes, sitting up right, book still in their laps. Nap time for me was always a much needed time, which I am sure it is for staff in the memory care unit too. It provided a break, a moment to catch up on a million tasks that needed to be done a week ago, and allowed me a moment to breathe. Knowing to take advantage of the stillness, even if for just a brief moment. Knowing that the afternoon would be full of surprises.



I spoke to the nurse and aides for a little bit and then slowly walked back to dad’s room. On my way, I noticed the rustling of blankets, bathroom doors opening and closing, tv’s being turned on, and the sound of life coming back from a slumber, recharged and ready to go. Very similar to the days when I would turn back on the lights and open the blinds to see the sweetest little sleepy faces slowly start to open their eyes. They would look up at me, smile with their toothless grins, and remind me of how precious life is. And it was no different when I walked into dads room. He looked at me, grinned, and said “Hi Vanessa!” Reminding me that life is indeed precious.



But it wasn’t long before he was up and ready to go. Dad asked me if I wanted to go out to eat. I said “sure, where are we going to go?” He smiled and told me to follow him. But first, he had to try all the door knobs (closet door, bathroom, door, and bedroom door) until he found the right one. Still weary from his nap and a little confused. Just like the little boy or girl stuffing their giant sized blanket and pillow into their tiny little backpack in their tiny little cubby with half closed eyes and the typical patience of a 4 year old. Once dad found the right door to exit, he was ready to go. We walked hand in hand down the hallway. There was laughter coming from one room where a man had turned the tv on to see something that made him chuckle. Reminded me of the little group of girls coming from the rest room break laughing at something only they knew was to be funny. A women came out of her room and followed dad and I closely. As she got right on my heels she asked me to stop. She asked me if I could ask the nurse for some apple juice and peanut butter to feed her cats. I told her I would ask. Then she proceeded to tell me why she needed peanut butter and apple juice for her cats because that is all they will eat and she didn’t want them to starve to death. Years prior, the same kind of conversation was had with a little boy who carried his plastic dinosaur every where he went and would pick up pebbles from the playground. I would find them scattered all over the classroom floor. But his dinosaur needed to eat or he would “starf to def” too. Another woman was sitting on a couch next to the dining area. A nurses aide was trying to get her to come in and join the group that was gathering around the table. She was having nothing to do with it. She had her arms crossed in front of her chest yelling she wasn’t going anywhere, just like the preschoolers did who HATED getting up from nap time. It would take at least 30 minutes of coaxing before they would be awake enough to join the group.



Another man walked into the dining area asking where lunch was. The nurse politely told him it would be coming in about an hour. No matter how many times you tell a four year old that snack is coming, they will still ask you 3 more times. Just like this man did. In a total of 5 minutes, he walked back into the dining area 3 more times asking the same question and being told the same answer. During this time, the nurse was taking blood sugars for the residents with diabetes, an aide was pouring cups of coffee, the woman across the way was still yelling that she still was not going to come in to the dining area, the woman who asked me about the cats was now asking another person if she knew where her cats had gone, my dad was asking people if they had caught any fish, and another man walked into the area completely soaked from an bathroom accident. Complete chaos. I traveled back in time to remember those hectic moments. Trying to pick up the cots, manage bathroom turns, calm a child who was having a break down, stop two little boys from sitting on each other, stop the two at the sink from seeing who can spray the water the farthest, and answer a million little questions all at the same time. And then once things started to settle, you would step in a puddle and realize someone didn’t make it to the bathroom on time. Those days were hard. But then a small little hand would take mine and ask me to walk with them, or I would hear “I love you Miss Vanessa,” or being on the playground and having a little run back to me because a goodbye was forgotten. These small little acts of humanity made the stress melt away.



As I sat in the dining room with dad after the chaos had settled I noticed a change in the atmosphere. Like all of the stress magically disappeared and all was well in the world. The nurse was walking the man who had an accident back into the dining room and I heard him say, “thank you for helping me with my pants.” She placed her hand on his shoulder and told him it was no problem at all. The lady who had been adamant that she would not join the group was now sitting with 2 other ladies enjoying a cup of juice. The lady asking about her cats was still asking about her cats, but seemed more content with the answers she was being given. A few other men were at a table laughing about something that had been said. Dad and I were enjoying coffee. Looking around at everyone, I realized that people with memory loss and preschoolers have a lot in common. Life had happened and life moved on. No one was dwelling on bathroom accidents or lost cats. No one was still sitting in the corner, arms crossed refusing to join. That is the beauty of it. Life is full of chaos, but it is how we deal with it that matters. One of my favorite sayings is, “Don’t sweat the small stuff.” And that is true. We have enough “big stuff” to worry about that we shouldn’t spend too much time on the little stuff. So yet again, a moment turned into a lesson on this journey in life. (silver lining).

The everlasting hug

 

The past few visits, I have received the biggest hugs from dad. As soon as he sees me, he holds his arms out. When I embrace him, I feel the weight of the world release from my shoulders. I feel safe again, I almost feel like I used too. The hugs are different, but the same all in one. For instance…



His shoulder blades protrude more than I have ever noticed in my life, but his arms are still strong. Strong enough to hold me in a tight grip. His embrace still tells me he is my dad and will do what he can for me. He doesn’t smell like Old Spice any more, but he still has a comforting smell. One that I wish I could bottle and take with me. He doesn’t always know who I am, but he hugs me like he has known me my whole life.



I read once that you should never be the first one to let go from a hug. You should hug the person as long as you can until they let go. I have used this rule with my boys since they were old enough to hug me on their own. I never let go first and I never will. Doing this simple act, has taught me that I usually need that hug more than them. I find comfort in their hugs. My husband is a hugger and I am not. My youngest gives hugs out like candy to anyone and everyone. My oldest, hugs me, his dad, and grandma. Everyone else is greeted with a fist bump. Could be because he is now a teenager, but I remember even when he was younger he didn’t hug a lot of people. We would take him to see Santa Clause and he would ask me, “Do I have to hug him?” I guess I never have been a huge hugger either, but as time passes and I am faced with the hurdles of life , the more I realize the power of a hug. Such a simple way to tell someone they mean something to you. No words are needed, just an embrace. That is pretty powerful.



So as long as my dad wants to hug me, I will always hold on until he lets go. It seems so simple, but speaks louder than any words can. (Silver lining).

Lesson learned

 

The first thing he asked me when we got seated in the front sitting room was if grandma was still alive.  I lowered my head and shook it slightly, “no dad, she is in Heaven.”  He then asked, “and dad?”  Again, I shook my head and said “he is in Heaven too.”  Tears slid down his cheeks.  I didn’t ask him what was wrong because I already knew.  He was thinking of his parents and missing them.  Then dad said, “I wish I would have taken him golfing.”  I didn’t know what to say, so I just sat there.  What can you say to that? 

 

It got me thinking though, I don’t want to have any regrets.  I don’t want to miss out on any opportunities.  I don’t want to look back and say “I wish I would have told this person this..”, or I wish I would have done this…” Truth be told, I am scared that I too will develop this horrible disease.  I have seen my grandmother live with it and now I am watching my dad.  It is hard for me to even write this out in words because I am 100% scared….to…death.  There are times in certain moments where I am happy and proud, that I am brought to the reality that one day, that moment may never have exisited in my mind.   And I will start to cry.  But then I have to quickly pull myself together because I have to realize I am not just making memories for myself, but for those with me. 

 

October 2024, we all knew dad’s disease was getting worse.  My mom loves the beach and Dennis and I wanted to help mom and dad enjoy a beach vacation, with the heartbreaking reality knowing this may be there last beach trip together.  The vacation was hard.  Dad was confused most of the trip which in return made him irritable.  I know it wasn’t his fault.  I know that taking someone with Dementia out of there comfort zone for more than 2 days can be very hard on the person.  Selfishly, I thought that maybe he would be ok as long as he had all of us.  Plus, dad wasn’t walking around as good as he used to and that is an obstacle when you are on vacation.  So there were no long beach walks up and down the shore looking for sea treasures.  There were no early morning walks on the beach watching the sun rise, and definitely no beach walks at night to watch the sun set over the ocean.  Plus, a horrible hurricane had ripped through Florida a few weeks prior to our stay, so the weather was not great.  High winds, cloudy skies, and big waves.  The beaches had been ripped to shreds as well and if there were any shells or shark teeth to be found, they were buried several feet under the sand. 

 

We still wanted to take the boys on to the beach, to get their toes in the sand and feel the ocean breeze on their cheeks.  One afternoon, we decided to take the boys to play around.  It was a little chilly and over cast, but we braved it.  The wind was crazy and it made the sand fly around.  The sand stung as it hit our bare skin.  The wind was so strong we could barely stand.  I looked up towards the condo and noticed dad walking down the stairs towards us. He got over to me and we laughed at how hard the wind was and how the sand hurt hitting our faces.  We spent a few minutes walking in a small area with our heads down hoping to find a little crab or other sea creature.  The sound of the ocean waves hitting the shore.  No words were needed.  I think dad too, knew this may be his last time at the beach.  I think he watched us out there and wanted to share in that moment.  A silver lining plus a lesson learned almost a year later. 

 

Dad had to have known in that moment, that he was making a memory with us.  No regrets, no fear.  He was going to brave that wind, the angry sand and search for sea treasures with us even if that meant he may never remember that moment again.  What a gift to us.  So for me, this is a lesson of bravery.  As scared as I am to forget my past, I am more scared to not give my husband and children memories. 

Dad is still teaching me, guiding me, and loving me.  He is still the person I look up to, admire, and want to be like (minus the dementia).  He is a wonderful human, a great teacher, and still my hero. 

Glimpse from the past

The boys and I took dad McDonald’s today. He had mentioned to me on the phone the previous day that a cheeseburger sounded good. When we arrived, dad was at the oh so famous office desk writing on some paper. He looked at us, smiled, and said he was just finishing up with some things. I looked at the paper and saw some scribbles, nothing that resembled anything to us but I know it meant something to him. As one of the aide’s walked by, he handed her the paperwork and the pen and informed her he was done for the day. I think this says so much about my dad and his work ethic. He always had a strong work ethic and taught me and my brother the same. It amazes me that even in the depths of Alzheimer’s disease, he still falls back into that work ethic.



Dad picked at his hamburger and took small bites. He was too engrossed at watching the boys shovel their burgers into their mouths. There were points where dad would tear up and I would ask him what was wrong. He would just wipe his tears away and say “I just miss those boys.” At one point, Myles piped in and said “we miss you too grandpa.” I felt so sorry for the boys in that moment. They are such troopers and accompany me to visit dad at least every other week. I am so torn with how often they should come with me because I know it is such a sad situation to bring them into and I know they miss grandpa and how he use to be. I know they don’t know what to say to him or how to have a conversation with him. But it still amazes me how dad will ask them a question that makes no sense, but they answer him like they know exactly what he is talking about. For example, dad asked Will if he was able to finish up the wood pile project and he responded with “I did!” and dad asked Myles if he caught the walleye that was too small yesterday and Myles said he did but had to “throw it back.” Moments like these I beam with pride. I love their hearts. All though grandpa doesn’t make a whole lot of sense and there are long moments of silence during the visit, I know it good for the boys to have these moments just to be with grandpa.



Dad finished half of his burger and ate a few fries by the time the boys were finished and had sat there for 20 minutes trying to make small talk. All of the other residents were in the dining area eating their meals, so I told the boys they could go into the front sitting area and play the games they had set up in there from earlier that day. There was a corn hole game and a ladder toss game. The boys jumped at the opportunity to go throw some things around. I tried to encourage dad to eat some more, but he just didn’t seem interested. I asked him if he wanted to go watch the boys play and he said he would. I cleaned up and by the time I had got back to the table from throwing the trash away he was already in route to the boys. He took a seat right in front of where the boys were. I took a seat on the couch and took it all in. And what a wonderful sight it was.



The boys were having so much fun. There was a lot of laughing and brother smack talk. So much, that grandpa even got into it. At one point, dad grabbed his hat and put it on sideways and asked Will if he was going to let his brother beat him like that. I laughed and snapped a picture because dad always, always used to take his hat off and put it on sideways when he was trying to act funny. It reminded me of the past. And I was so happy to see that glimpse of dad again. (silver lining). It was like we were back 5 even 10 years ago sitting around my parents living room watching the boys play. All of us laughing at something being done silly, my dad putting his hat on sideways to try and be equally funny. Those were the days. Memories I hold dear and memories that I am so thankful my boys have (silver lining). Even today’s memory will hopefully live forever in their hearts, as different as it may be, it is still special in its own way.