Ch Ch Ch Changes

When you learn someone you love is dying, things change. The way you view the person, the way they behave, the way you act around them, the amount of time you do or do not spend with them, family dynamics, personalities...everything changes. At first they're little, maybe not noticeable... but as time moves on, they become more obvious.

I can only speak for myself here, but things changed for me the minute I heard ALS come out of that doctor's mouth in Highland Park. Regardless of what everyone else said or thought, the word had been said and now it was stuck in my brain. You can't just erase that from your mind.

Even though I had been watching my father's body deteriorate up until that point, mentally I still saw him as that strong man who scared the hell out of me when I was bad as a kid. Now my eyelids were pulled open and I was forced to look at the reality of what was going on. My dad's body was slowly checking out. That strong man who I once feared was now becoming weaker by the day. Change had begun.

The most obvious change at first was my father's body. Up until that point, the biggest indicator that something was wrong was the fact that he was bent forward at a 90 degree angle. Change.

His left leg became weaker and required a brace to help with the drop foot so he wouldn't be as prone to falls. Change.

His right hand--the one that used to spank me when I got out of line as a child--had begun to close up...finger by finger until it was rendered basically useless. Change.

After time, the right leg became weaker and required a brace as well. Soon its strength over the left leg became non existent and the right leg became the weaker of the two. As of today, he has no control over the right leg at all. When being transferred (the term you now use when you move your father from point A to point B) you have to move the leg/foot for him. He can no longer do that himself. Big change.

Where he used to walk on his own, a walker was eventually needed. Change.

Soon, the walker wouldn't cut it anymore and he would have to use a wheelchair full time in order to move any further than from where he was seated to two steps away. Change.

Slowly, the left hand began to close. At first just one finger. Then two. Then three. He had two "good" fingers left on that hand until about 2 weeks ago when one more began to close up shop. More change.

In 2011, a custom made electric wheelchair was ordered and this would be his new form of transportation if downstairs or leaving the house. BIG change.

A special mini van was purchased from Warren's wife Sheri so we could get my father out and about with this new monster wheelchair. Automotive change.

Once his breathing levels had reached a certain point, the doctors at Clinic began pushing for the feeding tube. After fighting it for a LONG time, my dad had the surgery on Valentine's Day 2012. Great way to spend that holiday, huh? Where there once was a stomach of muscles, there now is a stomach with a tube hanging out of it...a tube that will soon serve as his mouth as his ability to swallow becomes more difficult. BIG change. Not well received either.

Where there just used to be mom and dad, there were now caregivers. At first it was just three days a week for a few hours a day. Then it went to 5 days a week...and soon to 12 hours a day, 7 days a week. When we come to visit, it's not just us anymore. There's always an extra body floating around. Invasive change.

Changes took place in the the physical structure of the house as well...the house where I was raised. It started with the building of a ramp in the garage, carried over to a chairlift on the stairs, included grab bars all over the house, taking doors off and re-hinging them to open outwards, commodes scattered about in various rooms, reconfiguring my parents' bedroom to make it more wheelchair accessible, turning what used to be my old bedroom into my father's new man cave...the changes took over the house. Change. Change. Change.
Other changes were harder to see. Those happened inside the mind and are invisible to the outside world. At least some of them are.

I made a conscious choice to spend as much time with my father as I possibly could. I made it a point to bring my children over as much as possible, especially Jackson, so I could say when all is said and done, "My child knew his grandfather and will remember the time spent with him."

I changed the quality of my time spent with my father so I could memorize everything about him...the sound of his voice, the way he rubs his hands, the way he lights up when Jackson walks in the room, the way he chokes up when speaking to Jackson on the phone, the way his watch hangs off his once strong and muscular wrist...I memorize it all, no matter how small and insignificant it may seem to others, and file it away in my head. One day, I'll search for those memories for comfort. One day in the near future, I'll playback everything I observed.

In time, your relationship with your family starts to change. As stress builds, tempers flair. Things are said in the heat of the moment that wouldn't be said had this not become our reality. Personalities change and each is completely opposite from the next. Whereas my siblings seem to be in what comes off as a very angry place, I'm in an extremely sad mental land of my own. Where their voices raise and argue, I cry. They can have serious talks and hold it together where I have to self medicate and often leave the room to pull it together. Sometimes there is resentment and anger and a lot of the time there is frustration and a sense of hopelessness.

The quality of time spent with your loved one changes. Where I used to just visit my parents as Lisa, their youngest daughter, I'm now Lisa, the caregiver, most of the time. Because I live the closest, by default I'm the one who spends the most time there running errands, doing things around the house or caring for my dad. Don't get me wrong...I'm not complaining about it. At least not anymore. I choose to do this. If I'm asked by my parents, I have the ability to say no...I just choose to always say yes because for me, it's what I have to do.

To be completely honest here (because I said I would be and said I wouldn't edit) I used to get pissed that I was always the one having to rearrange my schedule, get a sitter for the kids, pay a disgusting amount of money for that babysitter to stay later hours, take time away from my own family, spend our money on errands or meals on wheels, etc... when to me it seemed like my siblings weren't doing as much. Granted, Jay and Lisa Beth were going through emotional trauma of their own so I understood that, I still felt shafted for a while there. I felt like I had the short end of the stick...but then my perspective changed...

I no longer worried about what my siblings were or were not doing. I realized that each of us are on a journey here and I can only be in control of the path I chose to take. I can't change the paths of my brother or sister. I can sit back and watch them walk but how they chose to walk their path is their decision. When my father is gone, I will know that I did as much as I could, as often as I could. For me, that's all that matters. Knowing I gave him my all will allow me to be at peace when this is over. If I didn't, I would forever have to live with that knowledge and regret...and for me, that would eat me up alive.
I realized that each of us are coping with this in such a different way than the other two. I speak for myself when I say that I began grieving the loss of my father when ALS first was mentioned. The others seemed to respond differently. I became more and more depressed and found myself crying all the time. Anything could and would trigger me. I then realized that I needed personal change. I needed help. I needed drugs (the legal kind, people. Come on!) and I needed therapy. And then I began to change.

Where I used to be weak and fragile, I now found inner strength and courage to walk this path laid out before me. I realized that I was about to suffer the biggest loss of my life and I saw that I needed to make changes in how I behaved, how I saw life in general, how I saw the time spent with my own family and I realized that I needed to let go of the anger. I turned my focus on me and took my eyes off everyone else...well, everyone but my dad.

I began looking at my children differently. Even during the moments where they are driving me crazy, I still search until I find a sparkle of good in them...even if it's teeny tiny...it's there. I changed how I behaved with my kids--trying to be more patient and do more things with them so that when they are older, they look back at our relationship and can remember the small things I did for them. I constantly tell them I love them...there's no way they can doubt that they are loved. I snuggle a bit longer at night with Jackson and I tend to sneak in his room after he falls asleep just to watch the peace on his face as he dreams. I pay attention to the little things...those quiet moments where you actually see the being that you created. It's amazing once you step back and look at things from a different vantage point.
My view of my marriage changedas well. I pictured myself in this same situation years from now and it made me stop taking for granted the time my husband and I spend together. I saw what an amazing man I have...one who bends over backwards for my parents in the same manner that I do, one who understands why I am gone so often, one who never questions the money we spend on my parents, one who just gets it. He gets that this is what I have to do and he doesn't make me feel like s##t for being gone as often as I am. He'll take the kids for an entire weekend if need be and won't complain about it once. He treats my father as he would his own.

This experience has made me love my husband more strongly and has taught me how to communicate better with him. I think that it's actually brought us closer together even though we are physically apart more than ever. I don't take him for granted...and I don't take for granted how blessed we are.
I made a conscious effort to change the time I spent with my father as well. I would still be caregiver Lisa when I needed to...but I also carved out time to be his daughter Lisa as well. I made it a point to come for lunch every Sunday. No caregiving. Just lunch. This is when I am just his daughter and he is just my dad. As hectic as the time usually is because of the baby, I still love this time and look forward to it each week.
The most significant change for me came in how I looked at the world and life in general. I made it a point to not complain about things in front of my father. If he asks, I always say I'm fine...even if there are tears rolling down my face. How dare I complain to a man that is dying from such a disgusting disease? It puts things into perspective really. How bad is my petty bulls##t in comparison to what my father is going through? When I get upset about something, I do a reality check-- I think of him and then I see just how stupid and petty some things really are. I have become more at peace with the rest of my life and the crap being thrown my way...outside of my dad's situation. I'm not sure I'll ever be at peace with that.

Some people aren't good with change. Some changes are good and other just plain suck. Some just have to be and yet others are fixable. Sometimes change is a choice and sometimes it's forced upon you. Sometimes the only thing you can control with change is how you cope with those changes. Sometimes the changes overwhelm you and begin to extinguish that spark of life that you once had...and sometimes changes make you pull up your big girl panties and make you a stronger person. Sometimes change teaches you what you didn't yet know about yourself. Certain changes have endless possibilities in them and others have a clear end planned out in advance. Ya never know what you're gonna get...but ya know you're gonna get something because life is ever- changing.
And while some changes you learn to live with...others are bit harder to accept. The things that we don't want to change tend to be the big ones...like having your father be diagnosed with ALS. That sure wasn't on my list of wants or needs. On the flip side of that, the things we want to change sometimes prove to be the most difficult of them all. Almost impossible.

The one thing I cannot change? Guilt. No matter how hard I try to change, no matter how far I've come and how strong I've become, the guilt is always there. Guilt and sadness. For those, I have yet to find a way to change. But hopefully...change will come.

Hopefully change will come soon. It has to.