I guess I’ve always been Daddy’s Little Girl. My mom laments that my first word was Dada! And as a young girl, I called him Daddy-O. He’s a proud man of Sicilian decent, and devoutly religious, even at 92 years old. He never wanted or tried to be the center of attention, but he had a magnetic personality and people were always drawn to him, especially kids. He can be a burly ole bear, but he’s really a soft, cuddly teddy bear deep down.
Nowadays, though, because of Alzheimer’s disease, he is barely even a whisper of the man he once was. Because of his medications, and a long life of hard work and sacrifice, he sleeps most of the day now, and then, much to my chagrin, he’s wide awake and chatty come 10pm when I’m more than ready to hit the proverbial hay. (Grrrrr!)
His short-term memory is non-existent (“Give me something to eat!” “Dad, you just finished lunch 10 minutes ago”), but he remembers stories about his childhood growing up very clearly. I always enjoy when my uncle calls him and they reminisce about the good ole days of being young and getting into mischief… my uncle can really get him going, laughing, talking excitedly, Italian hands flailing merrily about as they converse. It’s truly one of my favorite things these days, because I get a brief glimpse of my dad’s old personality, the Dad I grew up with. We do enjoy brief moments of it too during our own conversations, but there’s nothing like that brotherly bond.
The Alzheimer’s has got to be hard for him. He knows something’s not right, and he does recognize on occasion that he has “probably already asked” a question. But he’s also developed a paranoia about things as a result of it. Like falling. Every time he gets up for a bio-break, he chants “don’t let me fall” or “I’m gonna fall”. Even when he’s in his recliner and I ask him to sit back and put his legs up, his automatic response is “I can’t, I’m gonna fall”. One early evening in 2018, he did fall on the way back to his chair. I had fallen asleep, and woke to the sound of his walker violently crashing into the wall followed by the thud of my dad hitting the floor. That resulted in a 911 call to get him upright, as he’s a big guy. Luckily though, he avoided major injury and suffered just some bruising by his ribs and arm from the landing, and a good scrape down his shin as he must have slid against the wall. He was quite shook up, as were my mom and I. But, thankfully, he really didn’t remember the fall the next day. The worst was when 2 of his sisters, a brother-in-law and his favorite niece passed away, all while I have been here. It was heart-wrenching to break the news to him, and then to have to re-tell him the information and have him react the same way each and every time for a few days was pure torture. And then, just like that, the information is gone from his mind. I guess that’s the silver lining to Alzheimer’s: not remembering or dwelling on the bad stuff.
His Alzheimer’s is definitely hard on me. It can be quite frustrating to have to answer the same questions over and over and over and over … within a 10-minute period. He has this ritual at night: is the kitchen checked out? is the gas off? are the doors locked? front and back? even the outside door? And he goes through it at least a dozen times before he settles down! I don’t know how my mom does it, but she has the patience of a saint and calmly assures him each and every time as though it is the first time he’s asking. Me? I’m good for two rounds. I know it’s the disease, but the disease has taken on my dad’s voice and that can trigger some apparently unresolved relationship issues from childhood. More on that in a future post.
I know it’s the Alzheimer’s talking, but the Alzheimer’s has taken on my dad’s voice and that can trigger things with me ….~ Su
I also never know what version of Dad I’m going to be dealing with each day because of the dementia, sometimes even moment to moment. Some days he remembers what he needs to do to get to the bathroom and I just guide him there. Many days, I have to give him play-by-play instructions: “Stand up. Get your balance. Release the brakes on the walker. I’ll guide you, just follow the walker and hold tight. Close your mouth and breathe in through your nose. Now let go and grab the bars.” It can be exhausting.
Yes, living with dementia as a caregiver is a constant loop of the movie Groundhog Day…
Dad is also very, very, very hard of hearing, requiring numerous repeats of responses and increases in volume. Our conversations often consist of: “what? what? I can’t hear you!” Soon to be followed by “Don’t yell at me!!!” At least I can sometimes playfully come back with “I’m not yelling, I’m Italian! That’s how I talk!!”
I think he may actually hear the sound, and that it’s more a matter of not being able to make out the words clearly enough. When thinking about it, to him it must sound like the Charlie Brown cartoon’s wah-wah-wahwahwah. It’s amazing to me, he won’t react to someone talking to him from 2 feet away in a normal voice, yet he can hear the faint “snap” from across the room of Mom’s bed wheel lock and jump sky high. “What was THAT?! You scared the daylights outta me!”
He is not interested in any hearing aids, of course. That, to him, would signify being old… So, for me it’s a blessing that I have the strong lung capacity from my Italian heritage! My mom, on the other hand, with her COPD has a much trickier time of conversing with Dad.
Lastly, within the last 6 months, Dad has lost his sight completely, due to cataracts. This has required many adjustments in ADLs. For one, he can no longer complete his bio-breaks on his own, as I now have to guide him while he hangs on to his walker for dear life. This has really shortened my leash, and I cannot sneak out to run any errands unless I am within a 10-minute driving distance from home.
Secondly, it has changed how and what he can eat. His meals, including dessert, are mostly served to him in a bowl with a spoon. Sadly, he can no longer enjoy a cannoli as they can sometimes break apart and he cannot anticipate that from sight to adjust his grip or catch the crumbled pieces. Breaking it up and serving it in a bowl with a spoon just isn’t the same for him. I do serve a sandwich and chips on a plate, but I have to be around to hand him the sandwich and it has to contain non-slidey elements. So, cheeseburgers on a bun with ketchup and pickles, for example, are off the menu as that is a frustrating disaster for the both of us. And I often have to retrieve chips that he’s scattered off the plate when trying to find them or pick them up.
Unfortunately, he’s no longer a candidate for corrective cataracts treatment. Because of the Alzheimer’s , he is not able to remember the instructions to stay still, etc. Because of his age, anesthesia of any type is risky. My suspicion is he was too scared to have it done when he could have, even though Mom went through it. That’s the funny thing about him and doctors: at my first sneeze he encourages me to go to the doctor, but when it’s about his hearing or his sight? Nuh uh. No way. Nothin’ doin’. He dismisses the severity of situation and says he doesn’t need it. <SMH> Thankfully, we have the service of a visiting physician once a month for his general health.
So, in a nutshell, that’s my Dad. Unfortunately, the combination of all these things has eliminated any desire of his to leave the house. On the one hand, this is a good thing, because it’s a Herculean task to make that happen. On the other hand, it’s a bummer because one of his favorite things to do was just get in the car and drive. At this stage, he certainly wouldn’t drive, but I would be more than happy to have been his chauffeur and tour guide if he could still enjoy sightseeing.
The best thing though with Dad, is he constantly says “thank you” and is genuinely grateful that I am there to help he and Mom. If I hear it once from him, I hear it a couple dozen times each day. That melted my heart when I was visiting to support them during my mom’s stent procedure, and it made the decision to leave my job and all the ungrateful people I worked with and for an extremely easy one.
Who else cares for a loved one with dementia? I’d enjoy reading about your story in the comments. It’s nice to have an actual name to the others “they” say are out there!