Tangled up in blue

Dad and Ben on our last visit in June.

It's been over two months since my dad died.

Lately, my heart has been racing a bit too much. Localized anxiety. Generalized chaos. I put my head on my pillow and my mind churns and my heart runs away. I write things down on lists and then forget to do them. I remember things I need to take care of while I'm down in the pasture or in the shower, and then forget to write them on the list.

I keep wondering when the clouds will break, when I will calm down, when my head will clear. Things are easing up, but before me still lies my father's memorial service, an event that will bring us closure of one sort while opening up my heart, as well. I am coordinating the event (which we're calling "A Celebration of His Life" and which we're holding the day after what would have been his 79th birthday). I have been feeling blocked about the plan, the design, of it all. The more concrete details are taken care of. But what I will say, what we will read, what pieces of poetry or music I want to include is all up to me and still undecided.

We will gather at Kingsley Manor, in the Sky Room, a lovely spot at the top of the building he lived in. When he was alive and I was visiting we had several wonderful family and friend gatherings up on the roof, my cousin Beth bringing in large salads and pizzas and platters of bbq chicken wings. Dad would sit in his motorized scooter, enjoying the kids buzzing around and the variety of folk who came to enjoy each others' company and the view of all Los Angeles from that rooftop patio. So it is appropriate that we celebrate him there one more time.

The last time I saw him, in June of this year, we had one of those parties. He was both thrilled that we were there and exhausted by what it required of him. I noticed that time that he was a bit befuddled, a bit more distracted, and much more tired than I'd ever seen him before. It worried me.

In the past, my dad held it together at each momentous juncture in his aging process. After a serious car accident in 1985 when he temporarily lost the vision in both of his eyes, he only told me about it months later. (I'd been living in Italy at the time.) After that he suffered from some neurological issues that were finally diagnosed as Multiple Sclerosis in about 1990. He took it in stride over the many years the disease progressed, somewhat resigned to the weekly shots of interferon, enjoying the chance to flirt with the nurse. At my wedding in 1991, he proudly walked me down the aisle, dragging his bum leg along behind, tripping on the unfortunate white sheet marking the path in the grass, and almost falling down. I never heard him complain about that.

In fact, he never complained about his condition. He almost went the opposite direction. When it finally came to pass that he needed to move into an assisted living facility four years ago he argued fiercely that it wasn't necessary. After all, he was still young, in his 70's and those places are full of old fogeys. But, after a painfully difficult visit up to us it was obvious to me and Mark that there was no other option. He was living at the time in an apartment that was not wheelchair accessible, he could barely walk 10 feet, he needed a cane or two, and when he was feeling ill he had no way to care for himself.

I resorted to tough love.

I told him that if he didn't look for a place to live now when he was in relatively good shape, we would most certainly face a crisis situation when he took a fall, injured himself, was in the hospital incapacitated, and I would have to find the quickest, easiest solution, even if it wasn't the most desirable. I wasn't particularly nice about it, as I recall. But Mark was. I remember quite clearly Mark's gentleness at that moment. I'm not sure why I was so hard on Dad. Maybe because I'd been talking about it for a while with him and he'd been avoiding it, steering around it, denying how bad the situation actually was. I felt like I could see the future and I could feel him turning his face away.

I also knew I'd be left holding the bag, the one who would have to pick up the pieces, so I needed him to pay attention.

I need to say right here, I need to interject, that I never had a storybook, fairytale relationship with my dad. He was too distracted by work, his own pursuits, his needs, his second wife, his other family to really be there for me. He rarely picked up the pieces for me, and certainly never did after my parents divorced when I was 15. So when I think about that tough love speech, that was love tangled up with anger, anger about having to be a grown up for my own father. It had me in knots.

Ultimately, he heard me or maybe it was Mark, and a couple weeks later the family took a trip down to LA so that Dad and I could take care of it. We toured several retirement homes and found Kingsley. It was basically in the barrio, a section of LA near freeways, downtown and a very ethnic neighborhood full of Armenians, Salvadorans, Latinos, and Asians. The neighborhood has a fairly run down and scruffy feel, but Kingsley, formerly the Lutheran home, is a beautiful oasis in the midst of the city. The campus takes up several acres, has architecturally detailed old brick buildings, rose gardens, green lawns, and patios. The dining room was nice and bright and the people seemed happy. Dad signed up right away and moved in within a month.

I know he was feeling tentative, moving this direction is a one way ticket. (I've often said that it's like moving into the college dorms only people don't graduate, they die. And as awful as it sounds, it's the truth.) He was hesitant about giving up his independence, but as soon as he got there he was relieved. He called me within the first week to thank me, something I think he'd never done before in my whole life. He told me that he hadn't realized how lonely he was and how hard life had gotten for him. As soon as he moved in he was made to feel welcome. People greeted him every time he left his room. He called the ladies at his dining table "My Girl Scouts" and they were happy to have him there, it seemed. Soon he had a new girlfriend!

But the other side of that coin was that as soon as he moved in his condition worsened. While we'd told them he was still ambulatory, within a couple weeks he only used the motorized scooter to get around. Walking was so effortful, he endeavored to never have to.

Yet, life was good there. There was that slide, and then things evened out for quite a while.

But later that year he had a mild heart attack and again we saw a downhill turn. Less mobility, less energy. Several months later he had a bout of pneumonia which left him in the hospital for two weeks. Before he came home we arranged for a caregiver to come in the mornings to help him get up and dressed. He protested and we insisted. He agreed to it "for a few months" and we knew it was for good. A few weeks later he again thanked me, realizing after the fact how much energy and how many hours had been devoted to just the basic first steps of each day. It was a relief to have help with those tasks, to be able to conserve his energy.

Dad never complained. He never moaned about his lot in life. After the pneumonia I spent a full day trying to organize his medications, something he assured me he had a handle on. There were so many! At least 15 including vitamins! I was completely overwhelmed by his situation, I could only imagine how it affected him to have so many "conditions" (besides the MS there was also Chronic Lymphocitic Leukemia, high blood pressure, depression, prediabetes, obesity...maybe more). About his decreasing mobility he never whined. He just faced his life with a positive attitude.

When he had to give up his car he lost a lot of mobility. I was thankful he'd managed to avoid any dreadful mishaps, but he was depressed, his vehicle being not only a symbol of his independence, but the last actual vestige of it. He still managed to go out to eat, enjoying the multitude of tiny ethnic restaurants in his neighborhood, but it wasn't the same as having wheels.

However, towards the end I heard more and more a tinge of loneliness in the small print of our conversations. He told me how the space he lived in was between bed, desk and bathroom. And that the fact was he didn't have much desire to go out of his room and socialize. I worried about that, seeing his weight increase, his energy decrease, and his mobility evaporate. Soon, I felt, we were going to have to talk about the second level of care at Kingsley; Siberia, as he called it.

A few weeks before he died he took a fall while getting into bed. Ordinarily he got into bed at about 7 pm, when Mildred, his loving caregiver came in to help him with his compression boot and do his nighttime routines. But that night he wasn't ready to go to bed, so he sat at his computer watching Rachel Maddow on MSNBC.com. When he was ready he turned his chair, aimed himself, and launched to the bed. But for some reason he missed and fell on the floor. He was unable to get himself up due to his weight (he was close to 300 lbs at that point) and his limited flexibility. His cell phone was on the table far from where he was and no one was going to be coming by to check on him until Mildred returned at 7 am to get him up the next morning. For four hours he scooted himself closer and closer to where his cell phone sat in its cradle charging. Finally, after all that time he was able to knock it down to where he could grab it and he called the front desk to get someone in to help him up.

I received a call from the head nurse the next morning. I could see the writing on the wall. Dad was surprised I was concerned. He downplayed it all, and told me he was fine. He told me that, but I think he knew.

That slide, that decent, was happening. I think Dad knew it and I knew it. I turned my face away from it, I really did.

Two nights before my father passed away he dreamt that his mother had come to get him. She held him in her arms.

I spoke to him after this, but he didn't tell me. He told Mildred and he told his Girl Scouts. They told me about it. They told me he was scared, he was quiet. It affected him a great deal.

When I heard this story I felt the truth of it open up my heart. My grandmother had come to get my father. He knew it was time and so he went with her.

I miss my dad these days. I can't quite believe how much I miss him. When I look at the photos of him they are all full of his life, his laugh, his somewhat annoying banter. He has always been a part of my life and now...I just want the joke to be over, I want him back so I can give him another hug and tell him I appreciate his strength and his optimism. I know I didn't do that enough when he was here and I don't feel guilty, but I do feel regret.

I guess, though, that's alright.