Today was Christmas. I bought Dad the game Catch Phrase, which he was so good at on Thanksgiving. I figure it’ll keep him mentally sharp, like how the experts suggest doing crossword puzzles after an Alzheimer’s diagnosis. However, Dad didn’t seem to have time to properly digest and comprehend the gift before someone else was handed another present and the Christmas commotion continued.

It was obvious that Dad wasn’t keeping up with the action today, especially during the gift exchange.  There was just too much going on at once – music, side conversations, tearing paper, a giddy grandchild, brightly-colored gifts, drink refills, video cameras, photography flashes… Understandably, Dad was acting very A.D.D.-like with all the surrounding stimuli. He was on overload trying to compute it all. But I have to hand it to him, he was in pretty good spirits, just a few steps behind everyone and every conversation. A little foggy almost. But we were all together and I kept focusing on that…

At the end of an amazing day with my family, for which I was so thankful, my husband picked a fight with me on the way to our car at midnight and I ended up going to bed sobbing, not understanding why he had to ruin such a nice day. I mean, just when I seemed to finally not be toppled over by my dad’s condition, he toppled me over anyway. I’m severely on edge and my insomnia is a bad as ever…

I was hanging out and shopping with my best friend, Jacquelyn, all day today.  We had arranged this eons ago.  We both had the whole day open until 4:30 when she had to get ready for a friend’s party and I had to head home to get ready for my family’s annual holiday party, The Adult Christmas Party at Meadowbrook Country Club.  Jac and I had such a fun day that I was bummed when we had to finally go our separate ways.

I went home and got busy glammin’ it up for the big annual extravaganza.  My family has been attending this holiday party at Meadowbrook the first weekend of December for as long as I’ve been an adult.  It started when I was in college and every year since then my brothers and I attend this dinner dance with my parents and a set of “Mystery Guests”.  My father, playful at heart as he is, invited an unknown guest to join us that first year and it has become an annual tradition since – trying to guess who will be the Mystery Guest this year!  It’s a semi-formal night out during which our family usually dances their butts off and finishes off the night with a pitcher of Hummers!

This year, as I walked into the club and searched for our reserved table among the sea of tables, I was delighted to discover Jacquelyn and her boyfriend sitting at our table!  SHE was the Mystery Guest!!  I never guessed it!  It was a true delight and I could see the pleasure in my dad’s eyes as I squealed and hugged everyone.

Toward the end of the night, Mom and Dad dismissed themselves earlier than usual due to Mom having back pain.  It was duly noted that Mom barely danced because of this and it broke my heart a little that her and Dad weren’t swinging hand-in-hand to every song together like usual.  I mean, how many more of these parties will we truly have together…?

I had a very nice Thanksgiving with my parents, although, of course, I can’t help but constantly wonder in the background of my head “if this may be our last one together” as a cohesive family.  I mean, how much longer will Dad last??  This thought prevails over every good moment we have.  I’m not sure that it ruins or diminishes the impact of the moment, but it definitely leaves me with a heavy heart and pulls me in many emotional directions constantly.  It’s exhausting, but I can’t turn it off – I’d like to, but I can’t figure out how.

The upbeat moment of the night was when we decided to play a game after dinner.  We attempted a new one for us: Catch Phrase, that electronic box you pass around that gives you a word or phrase to describe without using the word itself.  MY DAD ROCKED!!!  Honestly, I think he was the most effective player of the night!  Somehow, he was able to organize and grab his thoughts in record speed.  I guess we prepared ourselves for the fact that the pressure of a timed game would make Dad stumble and fail.  Boy, were WE surprised!  And impressed!  Go, Daddy-O, go!!!

Today was the Alzheimer’s Association Greater-Michigan Chapter annual fundraising event, The Chocolate Jubilee.  Apparently, this event is in its 23rd year.  I’ve never heard of it but, then again, I barely knew what “Alzheimer’s” was until 6 months ago.

Mom and Dad learned about The Chocolate Jubilee during the 7-week couples’ support group they attended this fall via the Alzheimer’s Association.  We went as a family to the luncheon, including my Mom’s sister (Aunt Kathy) and her daughters who are my close cousins (Katie and Karrie).  I’m not sure what we all expected from the event, except that we were very interested in hearing from the Keynote Speaker, Dr. Richard Taylor, a retired organizational psychologist whom has been living with an early-onset Alzheimer’s diagnosis for six years now.

Dr. Taylor was remarkable.  He started off saying he got nervous when he couldn’t find his speech notes a little while ago.  🙂  He flew to the event with the help of his wife, his permanent traveling companion now; apparently, he can’t travel alone anymore because he can’t keep track of his itinerary or maneuver confusing airports, etc.  Something we have to look forward to with Dad, I’m sure.

He read some excerpts from his book, Alzheimer’s from the Inside Out.  It’s a collection of diary entries/articles he wrote privately for his own peace of mind, but discovered upon sharing them once that they had value beyond his own two eyes.  I am very anxious and excited to read the book!  This is one piece of research information I haven’t come across yet which I think will be invaluable!  To get inside the mind of someone living with Alzheimer’s, to get a glimpse of what they see, feel how they feel…  I want desperately to understand my dad’s (ever-shifting?) point of view as much as humanly possible so that I connect with him stronger and communicate with him better – on his level.  I AM SO EXCITED THIS BOOK EXISTS!!!  🙂

I haven’t been visiting Dad as much as I should.  I like to see him at least once a week.  But I know that Dad’s doing better now on his antidepressants and I’ve been very preoccupied with things at home.  I’m going through a very tough time there as well and I think I’m probably avoiding people, including my own family.  I feel as if I’ve withdrawn into a shell to survive all the stress around me.

I don’t feel like I have solace anywhere in my life.  I’m not at peace with what’s happening to Dad nor have I truly accepted that one day (soon??) he will be gone from my life forever.  There is volatility at work, having been partially laid-off a few months ago and now having part-time status.  And there is palpable volatility at home where I am struggling with the different paths my husband and I seem to be taking – nothing is easy, including me preparing to put up the annual Christmas decorations and him fighting with me about it, complaining about what an inconvenience they are when they’re up and in his way.  Our conversations about having kids halted late this summer, and I’m struggling with the concept that my dad may never know my (future) children –and that breaks my heart and seems so unfair.  He is so great with kids and would be the ultimate Grandpa!

You hear the phrase, “Out of sight, out of mind.”  Well, that doesn’t apply to my dad.  When I go too long without seeing him (too many days, too many weeks), I start getting anxious, depressed, edgy.  The best I can explain it is that I feel panicky, like he’s already gone and I won’t ever be able to see him again.  I assume I’m going through some type of separation anxiety.  Whether it’s a natural progression to acclimate to the thought that one day he will be gone, or whether this is some self-launched obsessive condition, I can’t say.  I just know that I’m a bit calmer and more even-keeled throughout the week when I’ve had a recent visit with Dad.  And so I come out of my shell at least every two weeks and fit in a visit.

WOW.  The change in Dad is incredible!  In just 2 short weeks after being on Lexipro for depression, the sparkle is back in his eye and the spring is back in his step!!!  I am SO PLEASED!!!

My brother Todd and I went to dinner with Mom and Dad tonight – it was dad’s 65th Birthday.  We weren’t sure what to expect from Dad or what mood we’d find him in, so we just went to a local restaurant and kept the celebration toned down.  But the MOMENT Dad walked in the room, I knew he was BACK!!

A few gifts… MAJOR CHOCOLATE for dessert (Dad’s fav!)… good, upbeat conversation… it was SO GOOD to really BE with Dad again!

Even though Dad is now retired, Mom still goes into the family business 3-5 days a week.  She is ultimately preparing the company and its books for her retirement in a few months so that she can be with Dad fulltime.  His Alzheimer’s diagnosis and ensuing retirement just came too quickly for her to exit the company at the same time. 

So, as usual, Mom went to work today.  But she received a shocking phone call at her desk in the early afternoon.  It was our family doctor.  Surprised to hear his voice, she said, “What are YOU doing calling ME?”  He said that my dad had called the doctor’s office in a bad state asking for him specifically.  When he took the phone call, my dad was crying hard and said he needed help.  Dr. Wayne informed my mom that he had called in a prescription for the antidepressant Lexipro and that she needed to go home immediately. 

Mom raced home.  And then it all came out.  Dad is doing horribly.  He tries to appear upbeat but he is struggling.  Struggling with having no remaining purpose in life, no desire to do anything, feeling every morning and every day like there is no point to living.  He is lost, lethargic, upset, confused, and feels all alone and helpless. He is dying – and he knows it.

I am just angry and shocked to find out that he’s doing this bad!  Quite frankly, I assumed Dad had gone on antidepressants directly after my suggestion at our family meeting a full month ago.  My bad, I guess I should’ve followed up on that with my mom.  Let’s face it, everyone’s struggling and sometimes details get passed by.  Two minds are definitely better than one on this.

My poor, poor, Daddy-O…

Today is the first day of fall. With Uncle Jack’s funeral just behind us, the cool breeze in the air, the leaves beginning to burn orange, the flowers clinging to their short life that’s left, it’s a heavy week for the heart.

I went with my dad this morning to a 5K run he was participating in at Kensington Metro Park. I followed him while he parked, tried to remember what to put in his pockets before leaving the car, how many layers to wear/carry, and how to conquer the process of signing in amongst a crowd.

I have this incredible pull now to watch him all the time, ready to jump in at any moment to help alleviate any confusion or danger. I am SO WORRIED about him. I’m sure this is close to the feeling a parent must feel for their child, wanting to keep them happy and safe and out of harm’s way. I suppose, slowly, that the tide is turning where I’m now going to be the one in the parental position of worry.

I brought the video camera along for the day’s events. This is the 2nd time I recorded for the documentary. We did some talking in the car, as I positioned the camera in my lap, not wanting him to know that I was taping so we could share authentic conversation. I asked him how he is doing. His honest answer was that he is very concerned about my mother. He’s afraid of what she’s going to have to endure in the coming years, the tough decisions she’ll have to make, and he doesn’t think that she deserves this burden and heartache in her golden years. His love for her is palpable.

The gunshot went off, and Dad instantly took off running. As he faded out of sight into the crowd and around the bend, I got a pang of anxiousness, like he was going off without me and I wasn’t going to be able to protect him while he was on this path. How prophetic of the times we’re actually living!

When he returned and ran across the finish line, I was so joyous to see him again!

After the event, I had plans to workout at my gym (Triad Health and Fitness) where I had gotten Mom and Dad to join some time ago but Dad hasn’t been there for a while (he prefers running on a track). He said he’d pop in and say hello to the guys before heading home. We chatted it up with the staff inside and then Dad took his leave. As he was pulling out of the parking lot to head home – just a measly 4 miles away! – I started crying. I was panicked that something might happen to him within those 4 small miles. What if he takes a wrong turn? What if he forgets where he’s going?? What if he stops for gas and someone takes advantage of him financially??? The list is endless. I’m not sure that his current state warrants this amount of concern on my part, but I can’t turn it off. It’s part of the tender pang of not properly understanding what’s going on in his brain, when it’s working properly and when it’s misfiring. I’m not sure WHAT he can handle currently, and so I find myself reverting to the little girl who just wants to put him in my pocket like a tiny stuffed animal and take him with me safely everywhere I go…

Xmas morning hallway 1981 COLOR CROP

A typical Christmas morning with my buddies safe in tow!

Sparky in Wedding Bouquet

Showing Dad the surprise in my wedding bouquet - my little buddy Sparky!