Although I realize a lot of you know or suspect what’s been going on, I haven’t been ready to talk about my dad passing until I had a few days to process it. It’s been a long haul since Dad’s diagnosis seven years ago. We knew he had Alzheimer’s even before that, but wrote it off as hearing problems until we couldn’t. When Mom finally dragged him to the neurologist, he was very much in denial.
I remember the early days well. Any conversation with Dad would be circular. It was frustrating for him and frustrating for us. Mom would get so angry and do the “I’ve already told you that a hundred times!” routine, which went on for years. He didn’t know he was doing it. He couldn’t remember that he’d left dishes in his room or forgot to turn off lights or left the door unlocked. Mom thought it was excuses. I can only imagine how rough it is seeing your spouse change. Mom fought it as much as Dad. In some ways, I wonder if it was easier for him, because he was in a body with a brain going south, and she still had her wits about her. He kept trying, though, to do what he wanted and live his life as he knew it. There were times he’d turn up here unexpectedly. I’d see new dents and scratches on his car, and I’d wonder what he hit and worry that he was going to hurt himself or someone else without even realizing it. The neurologist put Mom in touch with someone who assessed Dad’s driving. The first year of Dad’s Driving Test, he actually passed. (The DMV didn’t care that he had Alzheimer’s. So long as he showed up and could identify traffic signs, they renewed his license.) The next year that Mom had his driving assessed, he flunked big-time. By the time the assessor got out of Dad’s car, he was probably grateful to be alive! He told Mom to take away the keys.
Once his keys were gone, Dad was mad as a hornet. Mom hid them, but he spent a lot of time looking. He would find other keys and try them out, but they wouldn’t work. He went walking one day and ended up far from the house. The police had to bring him home. Good thing he still had a wallet with his identification. Mom had removed all his credit cards and cash, all but about 20 bucks.
For a long while, Mom took him to the BreadCo at the mall. Every. Single. Morning. He would get a coffee then sit at a particular table by the window. He actually made some buddies, which scared us because we didn’t know them from Adam. So, we started dropping in. Emily liked to go have a big cookie and sit for a bit (although she wasn’t good at sitting for long). Pretty soon, the employees got worried about him. They had Mom’s number and would call her. It was a sad day when the BreadCo trips had to stop. That was pretty much when the discussions started about full-time care.
About three years ago, Dad was to the point where he couldn’t take care of himself, and it was really wearing on Mom. She was on the front-lines, and she was starting to lose it. For me, it was surreal: having a baby at the same time my dad was progressing backward, a little like Benjamin Button. Emily was growing up, learning more and maturing, while my dad was forgetting more and becoming more child-like. When the family finally agreed to place Dad in a Memory Care facility two years ago, he and Emily had kind of met in the middle.
Dad had always been so straight-laced. He was Mr. IBM, very buttoned-down and often emotionally distant. My mom recalls times when Dad would come home from work in his suit and tie. We would try to hug him and climb on him, and he’d lift up his hands and say, “Not until I change and get a gin and tonic.” Mom was the hands-on one, the one who got messy with us and encouraged our messiness. Dad was more the law enforcer, the one we were threatened with when we got sassy. He traveled a lot so he missed a good deal: school awards, gymnastics meets, track meets, what-have-you. He wasn’t one to talk to about problems or feelings. Maybe it was a generational thing, or maybe it was because Dad had some big emotional baggage of his own that he’d never properly dealt with. His father had committed suicide when he was 16, something I tried to get him to talk about on a few occasions with little success. I think it scared him when things weren’t going right. Perhaps, he only wanted to see and hear about the good stuff because then it meant that all was well. But it made it hard on Mom, and it made it difficult to have a close relationship with him. Which is why I didn’t, not until the end. Don’t get me wrong. We had our moments. I remember seeing him cry for the first time in my life: after IBM had pushed him out with a less than golden parachute after decades on the job. He was truly depressed, and I worried about him and how he would move on when this job had meant everything to him. I don’t think he was ever the same.
Somehow, the Alzheimer’s brought us together. The reserved IBMer I’d known my whole life turned into a goofy nut before my eyes. Emily loved it. He would put napkins on his head at dinner and make funny faces. She was three and he was 84, but they connected. I can still hear her laughing and saying to him, “Grandpa, you’re SO silly!” It was like this uncensored personality that had been locked inside finally emerged. It was a little embarrassing at times, because he would blurt out anything that came into his head (oh, man, I could tell you stories, but I can’t even repeat some of them here…my fingers would blush too much just typing them!).
I make it sound fun, but it was tough, particularly for Mom. She didn’t enjoy seeing this New Dad, who’d tell her about his girlfriend at the nursing home. She didn’t like when he thought she was his mother and not his wife. She was dealing with all the botched-up paperwork she was uncovering in their tax files and all the canceled checks to scammers and all the policies he hadn’t paid up while he still had their checkbook. She had to handle the nursing home people, too, who weren’t taking care of him the way they should. Then she had to make arrangements to move him to the second place, which turned out to be far more beautiful but equally incompetent behind the scenes (why don’t these places have management that understands you MUST talk to families and employees, constantly improve your methods, encourage employees to talk to families and vice versa, and continually educate your staff about Alzheimer’s issues?). You all know some of the shitty stuff we had to deal with, because I talked about it here. It’s horrible to me that these private for-profit facilities can’t be built fast enough, but the people managing them and hiring staff to care for Alzheimer’s patients aren’t listening to the families or their employees or trying to do better (and, Lord, do I have sympathy for the actual caregivers! It’s effing hard work that never ends!).
At Dad’s third place, Stonecrest, where he passed away last Thursday morning, we found a good home for him. Yes, they made mistakes, like the big honking blunder of sending him to the hospital with the wrong patient’s name, something that should never happen to any patient anywhere, particularly when that patient doesn’t even know who he is or where he belongs. But they are making changes. I believe they’re trying. They are short-staffed, like every other Memory Care facility. New hires don’t get enough time to train because they’re sorely needed on the floor. The experienced caregivers often work double-shifts and end up getting burned out because caring for Alzheimer’s patients is soul-sucking.
Stonecrest was exactly what Dad needed after the experience we’d had at Provisions. They were good to him. He called Stonecrest “home,” and it was for him, for us. Dad was ever-smiling when we’d visit. Yes, he was going downhill. They could see it. We could see it. He got to a point where he wasn’t making sense at all, couldn’t find any words much less the right one. He got quieter, which was weird, because he was the life of the party before that: he couldn’t stop talking, couldn’t stop patting his caregivers or flirting with them. He stayed in his room more, or we’d find him in the dining room after lunch with his head in his hands. If he was in pain, he didn’t complain, because he couldn’t. It was like having an infant all over again, one who couldn’t tell me that he hurt or felt sad or was tired. We had to go by physical cues.
By April, when Mom got into her condo near Dad’s place, she was over there every day. I tried but didn’t always make it. Being the bologna in a generational sandwich is not as easy as I thought. After Dad’s hospitalization in May when we were told he wouldn’t make it out (ha!), I did go daily, because I knew every day could be his last. I tried to take Emily more, too, but Grandpa scared her. So, she stopped wanting to see him, and I didn’t insist. She’d visit the kitties that Stonecrest fosters, and Grandma would sit with her while I visited Grandpa. I’d even take a kitty to sit on Grandpa’s chest, and he would say, “Meow…meow…kitty” when he could hardly say anything else. (Btw, that’s the MOST amazing idea ever! Every retirement community, every Alzheimer’s facility, should foster puppies and kittens so long as there are employees and family members who volunteer to help care for them. It’s a beautiful thing to see the patients with these animals. They can just sit and watch them endlessly, and it definitely makes kids want to go there when otherwise they wouldn’t.)
When I saw Dad on Father’s Day, he looked awful. He had big red gashes on his head from falling. He was on sublingual morphine at that point, but he still appeared to be hurting. Asking what was wrong did no good. I would get him water, lemonade, ice cream, whatever, and try to make him drink and eat a little something. He was getting weaker, growing thinner. I sat with him on Father’s Day and babbled for over an hour. He didn’t respond, not really, until he haltingly got out, “You…seem…happy.” I told him I was pretty darned happy and he didn’t need to worry about me. Over the days that followed, I often reassured him that his family was okay. That he could go. He could be with his beloved older sister Doris again, and my cousin Wayne, and uncle Bob, and Mimi, and his dad, and all the peeps he loved who were waiting for him.
By last Saturday, Emily’s birthday party, he was basically catatonic. He was in bed, and I don’t think I ever saw him out of bed again. I would rub his arm and talk to him, and he wouldn’t even open his eyes. Mom and I both noted it was like checking an infant’s chest in the crib to see if it was rising and falling. That’s what I went by: is he still breathing? And he was for a while, although we knew in our hearts this was it. He wasn’t going to bounce back this time around. How he hung on for so long, I don’t know. He was 86, but he had been through so much with the Alzheimer’s. It robs its victims of everything in the end. Every word. Every bit of youthfulness. Every shuffling step. Every hum and whistle and wink.
I was dropping Emily off at summer camp on Thursday morning when Mom called. I couldn’t even answer my cell when I heard it ring initially. I was driving, and I don’t touch my phone when Emily’s in the car. I knew what it was about. When Mom called again two minutes later, and I had Emily inside the school, I answered. Dad was gone. He’d died in his sleep. His caregivers had been with him at eight a.m. and when they checked on him again twenty minutes later, he had passed.
When I told Emily that Grandpa died (which I didn’t even do until later that day when we were at Stonecrest), she asked, “Is he gone for real?” I told her yes. She looked like she was going to cry and then she asked, “Does he have his marbles again in heaven?” I told her yes, that I was sure he did. Her eyes unclouded, and she smiled. “That’s a good thing,” she told me, and I realized she was right. Now he’s whole again. Now he’s hanging out with his homies after a very long and exhausting trip. I hope he can play golf again. I hope he can eat one of Aunt Doris’s home-cooked breakfasts. I hope he can look down on us and know we’re just fine.
Because that’s how it works. You live and you die. And if you’re lucky enough, you leave something really good behind. I’d like to think that my dad knew he did.