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.

About face

I promised a friend to try facebook for one week. I always thought myself too old for facebook and it seems so narcissistic. So, I'm trying it.

It is still narcissistic. And limiting to someone who tends to use a whole lot of words. It's also really fun to see what others in the world are doing, a way of quickly catching up.

But I already spend too much time on the computer! I can see this facebook thing could become a huge time suck for someone as undisciplined as me. Plus, I'm not sure I really have the hang of it, learning the lingo and how to navigate has been a challenge. Maybe I'm just not smart enough for facebook. I need to channel my inner Al Frankin.

It has been five days and the jury is still out.

New Muse, Old Muse

I've started weaving again, after a long hiatus. My return to my old favorite art form was facilitated in part by my massive cleaning of the kids bedrooms. Once all the broken and unused toys, the long unread books, outgrown clothes and general junk was removed, I discovered that the boys room could really use a couple of chairs and a rug. I'm not all that into chair making, but have been saving old clothes and fabric for years, limiting myself to one giant Rubbermaid tub each for woven, knits and denim.

I took five pairs of Mark's old pants, put them in a dye bath so that each is a slightly different shade of denim blue, cut and stripped them, dressed the loom and began weaving. Dressing the room is a daunting task after three or four years off. Despite rereading my instructions, and with many interruptions, it took the better part of a week to get the warp wound and beamed. Even though I checked a few times, I managed to cross some threads in the heddle and did not admit to this until I had a good foot or two woven. Not being a perfectionist, I cut the threads and called it a design element. This left three threads loose at the back beam, so I weighted them with toys I found lying around. They look cute dangling there, don't they?

Another reason or the weaving is that I have two pairs of socks on needles, both knitted from the cuff down, both at the most boring part - past the heel and heading to the toe. All I have to look forward to is the toe and that doesn't hold enough interest. I could have just cast on another pair with different needles (I do two at a time on two circulars), but realized how ridiculous this is. So, I'm weaving when at home and knitting on the instep when I'm not. My blog has been suffering for the weaving, though. I have many, many projects lined up in my head now that I have the weaving bug back!