Complicated Question

I have often been asked lately how I am doing. It's a difficult question to answer. On the face of it so simple, but when you get right down to it, extremely complicated.

Am I really "doing," for example? What am I doing and how am I doing it? A short glance around my living room or bedroom shows that I am not doing much. Not physically anyway. Some days I don't even shower. I am usually dressed by noon, though, so maybe that is something.

The kids get to their scheduled activities. Most of the time. They see their friends, attend their classes, get their basics done most days. They could be doing more. There's that gym class I want to enroll them in, the play dates I never get around to scheduling, the allergy shots that are supposed to be twice a week and sometimes we go two weeks between, the swim team and swim lessons, museum day - all these and more I have failed to organize and do.

My three siblings and I cannot seem to have a discussion over my father's care without someone getting angry and belligerent. We can't agree on the simplest of things and some refuse to even take a part in the discussion, preferring to criticize from the sidelines. I have been unable to forge a truce or maintain the peace. On the contrary, because I am the closest, I am the target.

My mother now needs more help than ever. I am able to help her twice a week. This I can say that I "do." Writing checks, buying groceries and supplies for my father's caretakers, making her appointments, managing her calendar, listening to her fears and worries. I get to go home, to put some distance between me and my dying father. My mother is home and the love of her life, the man she has been married to for 60 years, is slowly dying before her eyes. It's no wonder she needs more help, the emotional and physical strain on her is unbearable.

And then there is my father. I can help him try to stand up, he isn't able to do this on his own anymore. But he wants to try and I can hold one side while an aide holds the other. He was a tall man, but now his legs wont straighten and he is shorter than my 5' 8" frame. Not nearly as wide, though, his body isn't tolerating much in terms of calories. I can try to interpret for him, make sure his medicines are ordered and sufficient, help the aides with their questions, distract him when he is agitated.

So, I am "doing," or at least am active. I am not, however, doing anything particularly well. It took me a long time, probably a month, to realize that my kids were no longer active and engaged in their math program and that it needed to be changed. Little is still not a good reader, he is reading things that his siblings read a full year ahead of his age.

The friends still willing to talk to me - and there are several who cannot right now because their own grief is too fresh to be cut open by mine - are probably bored out of their minds when they ask how I am. I feel I have become a lead weight in their presence. So, when I am in town, I stay inside my house and limit my outings to the kids schedule. Yesterday I took Small to dance and then went to the library to reserve the room for our science class. After those two brief encounters with the outside world of small talk and business, I was exhausted. They simple act of smiling, so natural for me normally, is draining.

So how should I answer? Fine. OK. As well as can be expected. Or just smile.

Floating

I feel lately as if I am just floating in the ether. Not really a part of my life or my family's life, detached and floating. Occasionally I touch down for a moment of connection, of reality and the float up again into the amorphous space that surrounds me. Here are some of the things I have managed to touch upon:

• My father calling for people from his past in the wee hours of the morning. Not frightened, often just calling "Hallo!"
• My mother weeping with the understanding that her children may be saying goodbye to their father for the last time.
• My siblings, laughing over a bit of family history and then brought back to reality by a sobering cough from the other room.
• My completely unresponsive father when I said one day that all his children would be here the next day. Then seeing him the next day insisting on being dressed, forcing himself to stay awake until my brother made it through a storm from California at 3 a.m. He heard me.
• My children enjoying their science lab while I was able to enjoy an hour with a dear friend who let me babble on and on incoherently in a Starbucks.
• My doctor, two hours behind schedule, listening to my every word and telling me it was OK to let myself go while my father let himself go. But that it was not OK to only be able to sleep with the help of Tylenol p.m. Me relishing the relief from her acupuncture.
• My brother complaining about the quarter mile inside the grocery store we had to walk from the meat to the wine.
• The sight of my mother having her pedicure on a treat spa visit with my sister. Completely relaxed, composed and happy.
• Me understanding deeply, for the first time, that Mark and I will not likely see the 60 years of marriage my parents have lived through.
• The bizarre experience of all four siblings showing up at the local fitness center at the same time to sweat off the grief and anxiety. It must be genetic. We paid a guest fee for the privilege.

It goes on, these brief landings on earth to witness the world around me. Then I am back in the fog. Floating to the next touch down point. I do and do and do. But all I do is touch the surface and disappear. This can't go on forever.

But this ether can be seducing. I haven't summoned the courage for more than a cursory glance at my email in over a week. My father has been dying for seven weeks now. He managed until a week ago to have more lucid moments than not. Now he is in his own hell of incomprehension and hallucination. His brain was so important to him. And to us. He held on to it for so long and now it seems that the Parkinsons has taken the one thing left to him. His increasingly vocal worry since his diagnosis has turned into his whole life. Worry over the weather, his finances (where there is no need to worry), the condition of the house (where there is, but all fixable), his worry over my mother (again, founded in reality), his lab (long since dismantled).

We have much wind tonight and I know Dad will be shaking the bed rails, wanting to check out the damage. I had the aide move the electrical source for his bed to the outlet service by the generator - we had a minor tornado there in August and witnessed only a flicker of the lights. It will likely be a bad night for my father. And a bad night for me in the ether.

My New Heroes

Six weeks since my last blog post. And that post was so full of hope for my father, hope that he just had a broken hip and would get better.

But then he acquired pneumonia in hospital and has been home in hospice care ever since. We have had days where there was much hope. Days when he has walked, used the toilet, spoken coherently. We've also had many days when he did nothing but lie in bed, hallucinating, agitated or just sleeping. It's been a roller coaster.

The worst days were when he first came home from the hospital, terribly sick with pneumonia. The hospice nurses only thought he would last a few days. My sisters flew in. We made plans, he dictated notes to all of us, repeatedly begged us to take care of our mother. We all prepared for him to die. But he didn't, he got over the pneumonia and regained some of his strength.

But now we are back to thinking he only has a short time left. Kidney failure is likely now, his body may be shutting down. He's had hallucinations, anxiety, lack of elimination. I had thought myself better prepared to deal with his death, but it still hits me like a blow to the head. Have I really had my last conversation with him? Will he only be unintelligible from now on? No one can say.

These hospice nurses are unbelievable. Our whole family has received wonderful care, advice, concern, attention. Taking on that job is a true calling. They are my new heroes. Without them we would all be somewhat adrift, relying on doctors or nurses in a hospital. Uncomfortable and unknowing. With them, my father is able to rest in the house he built on top of the tallest sand dune, look out the window at the tree tops and the lake, be as comfortable as possible in his waning days.

Today is another day when the schedule was shifted in order to take care of my parents. No registration for Girl Scouts, no grueling trip to the north side. Instead we have a trip - equally as grueling - to Indiana. I hope my kids don't resent me for this time, and don't think they do. They are sad to give up their activities, but continue with their life learning wherever we are.

Complacency

Complacency is an evil thing. I've been tooling along the past year thinking things with my folks were improving and that we could continue along this path for a while. It's what I wanted to believe, what my own family needed. Complacency is why I took on the board of directors position for the InHome Conference (well, that and the sheer desperation I heard from friends who needed help), why I started teaching a physics lab for homeschoolers, why I branched out looking for new opportunities for my children.

And it's why I'm smacking myself on the forehead now. Just over a year ago, my father was admitted to the hospital. His EMS ticket read "failure to thrive." One of those medical terms like when I was pregnant with Small and the nurse told me he had a condition "incompatible with life." Last year, however, my sister and I convinced my father to have a feeding tube inserted. His Parkinson's had advanced to the point that he was malnourished and dehydrated. Without the feeding tube, he would starve to death. It wasn't hard to convince him, my mother needed him. And he wouldn't abandon my mother to her dementia. Just as last week he agreed to a partial hip replacement, after a struggle, so he could help my mother continue to have some independance.

My father's Parkinson's was diagnosed 8 years ago, but he suspected a few years prior to that. I remember him being jovial when a neurologist told him there was "nothing remarkable" about his brain. That's funny for a genius. Over time the disease has robbed him of his booming voice, his ability to move predictably, and his ability to swallow. After he had the tube inserted, he became almost robust, gathering strength and a quality of life he hadn't had before. Between that and the botox treatments he receives in his cheek, he was reading, participating in daily routines, taking care of my mother and their enormous house overlooking the lake, debating politics - this frail old man left the house to vote for Obama ("the first intelligent candidate in a long time") in Indiana, a state that really counted!

A week ago he tripped over his feet and broke his hip. It has been a week of anguish and frustration, a week of struggling to get the best care possible and a week of managing my mother. There are a lot of funny things that happened too and I'll try to share them soon, not to make fun of my mother or of dementia, but to point out that there is humor in crisis.

My father and I had what I would consider to be a strained relationship for most of our lives together. Like most people, I have felt not quite smart enough to be sharing the same space with him. Now I can see he has respected me all along, I just wasn't willing to accept his love and admiration. The strain was mainly on my side, this is an unspeakable loss. Now I stand armed at his hospital bed with his DNR and the Power of Attorney, telling everyone who walks in the room that he is not deaf and has no mental impairment. The no mental impairment part often has to be repeated, nurses and doctors just assume some level of dementia in an 82 year old who cannot speak. I hand out the spread sheet of his medication and feeding schedule, translate his concerns and worries from whispers to a roar and generally become a thorn in the side of people unable to adjust their prejudices. I am my father's daughter.

It has been an incredible strain on my own family, this past week. They have rolled with the punches, done their thing, taken time off work and play to help my father out. I've missed out on a week of their lives, and will miss some more in the weeks to come as my father becomes stronger. We have been shocked out of our complacency by this horrible disease and need to become ever more vigilant. And ever more efficient in our work to accommodate for these intermittent crises. They are only going to increase as nature takes its course for both my parents.

I am grateful, however, to be homeschooling my children and including them as active participants in my parents decline and death. Already wise, they are more aware of the world around them because of our care taking role.

Vindication

A week or so ago, Medium pointed out to me that she did not know what a Twinkie tastes like. We were not in a store at the time, and I don't remember how the topic of conversation came up. My first reaction was to say "You don't want to eat a Twinkie, " but I held it. I described the taste of a Twinkie, told her that I had a boyfriend in college who had toured a Twinkie factory and told me that Twinkies never see an oven and asked her if she wanted to try one. She said she did.

The next time we were in Target, we got her a package of Twinkies. Large and Small opted for Oreos in a big cup that fits into a car's cup holder. Small is still allergic to milk and eggs and amazingly Twinkies have both listed as ingredients. Also amazingly, Oreos do not. Medium did not like the Twinkie, gave the second one to Large, who ate a bite and put the rest in the composter. I now know that a Twinkie will compost.

We try to eat health, whole foods, avoiding processed foods whenever we can. But somehow it feels like snobbery to deny something like Twinkies, particularly as I was brought up on them, Ding Dongs and Ho Hos. Every lunch bag had some chemical reaction in the form of a cake inside. Zingers we discovered in High School when my brother and I had our own car and a gas card. We learned that gas stations sell food and filled up on junk until my Mom put the lid on our spending.

Junk food isn't evil, after all, and it's everywhere. My children are different enough by virtue of their homeschooling. They don't need other badges of distinction, like being denied Twinkies. They will probably never eat another one now. I remember telling Medium's Girl Scout leader that I had never been inside a Dunkin Donuts when she was wanting to take the girls to one, but wanted to clear the allergies first. I felt strange at feeling some pride at that. I have a sister who is proud of never having been in a McDonald's. It's a strange thing to be proud of. It's all wrapped up in that weird food thing we have in our family. I don't want my kids to have that.

Today we got slurpies as a special treat. Small and I have a summer cold, we didn't sleep well - when did his legs grow to the point that his toe nails can scratch my ankles when we are in the same bed? - and I had promised him a treat for skipping going out to breakfast and having to drop the other two off at the art camp in our pajamas.

I'll still cast a wary eye at junk food, chemical food. But I don't want the kids to either fear it or crave it because of my denial. The three of them had slurpies and have lived, so far, to tell the tale.