While I was watching Dad eat lunch today my inner monologue was taking control. He's not much for conversation so I have a lot of time to think and I found it intriguing how many emotions and thoughts can go through my head at one time. I can feel amused, concerned, sad, annoyed, judgmental, happy.... the list goes on. I also find myself writing blogs in my head as the moments are happening.
Today I was feeling all of those things. I was amused by how Dad is so much like a little baby who is discovering things for the first time. He took a sip of diet coke today and looked at me like it was the most amazing thing he'd ever tasted.
I was annoyed about Dad's rash still being awful, judgmental toward myself because I took him to a taco place and it became very difficult for him to eat without spilling all over himself, happy when Dad started cracking jokes and being silly, concerned because he's lost too much weight and his face is sunken in. But mostly the last couple of days, I've just felt sad.
I started thinking of the memories I have of Dad when he was normal. The last time that I have spent this much time with him was probably when I was in high school. Maybe? (I was very busy with extra curricular activities and we didn't live with him, so maybe not.) Even then I only have a few memories of him cooking and taking us on some fishing trips or over to Walmart on his day off. I have childhood memories too... some bad and some good but it seems so long ago.
Dementia has been taking over for the past 6 years, and it's sad that many of the memories I have of him are from this time. I also think that the memories we are making now are beautiful for what they are, but I just wish they didn't overshadow the Dad we had in the past. We never got to have that Father/Daughter adult relationship. It basically went straight from Him being the parent to Us being the parent.
Most of my sadness isn't for me and Megan though. Most of the time I am sad for Dad. He's only 70! But because of this monster of a disease, he won't get to enjoy being a Grandpa, or being in retirement and going on numerous fishing trips. Instead, he lives his life in a daze, closed off from the rest of the world... when I found him this morning he was sitting hunched over in the dining room with his head almost touching the dining table fast asleep. When I slowly woke him up, he had drooled on his sweatshirt. He's swimming in his clothes because he has lost so much weight. I'm sure it's not the quality of life that he ever envisioned for himself. The next ten years could have been a nice time for him. The twilight years where you enjoy life and family. Blake and I are only in our late twenties and we fondly look forward to that.
Writing that just made me cry.
On the other hand, he still has such a bright spirit around him most days. He thoroughly enjoyed chips and salsa at the taco place today. When we were leaving the restaurant, he started dancing salsa to the music. The people in the booth next to us were clapping and laughing. At Fantastic Sams, Dad was showing the lady how good he was at funny voices and animal sounds (definitely good childhood memories). She was cracking up and patting him on the back. We were singing along to Bette Midler's "Slow Boat to China". Today he called me "the best lady, the rest are all dodos."
Sometimes the sad thoughts are there so I deal with them but try not to linger on it. I've always been good at focusing on the positive, so I need to continue to do that. That is why the blog is called 'the upside to dementia'. And here is the upside, in my opinion...
Megan and I have more of a relationship with Dad now than we ever had before. And we're creating memories with him that we wouldn't have if he was healthy and living in Fallbrook. I think that's a pretty good upside.
A quick note about how Dad is doing...
Two things have been very consistent with him lately. The rash and the smell of pee in his room.
He's been such a trooper with this rash... it's STILL there and STILL itching him like crazy, and I never got a call from the VA about an appointment to see a Dermatologist, and they were quite rude on the phone today suggesting that I should just take him into the ER if I was that concerned about it. Oh, I'm sorry!... but what is an ER doctor going to tell us that a regular doctor hasn't already told us... we need to see a Derm! So, we got him an appointment in five days at a place nearby where he can just pay cash.
Also, they moved Dad and Ken out of their room temporarily because the smell of urine is still so strong. After ripping the entire bathroom apart a month ago and replacing the cabinetry and flooring, the staff at Whittier are now ripping out the carpet, treating the cement with chemicals, and then putting down linoleum. They also washed the walls. We bought Dad another plastic cover for his bed to prevent the mattress from getting wet in case he doesn't get up in the middle of the night. I hope and pray this works. All I can do is thank Whittier Place for taking this seriously and spending money to do everything in their power to fix the problem.
Despite all this, Dad does seem happy. When I walk down the halls of Whittier Place, I've spotted him smiling in some of the pictures on the walls.
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