Back in the Saddle Again

By Bud Focht

Hi, my name is Bud and it has been a while since I’ve been able to sit at my lap top and think out loud. And by think out loud I mean write what I am thinking as a caregiver.

Fifty months and 95 blogs ago, when I first became a caregiver, I used to do this once a week, once my wife, my life partner, my Terry, was diagnosed with Early Onset Alzheimer’s Disease. Over time as time became more precious and I had much less of it (like hair and testosterone), the blog posting has gradually gone from weekly to every two weeks to monthly.

Until lately when I could not even find ONE day a month to sit down and not only collect my thoughts but put them down. I would say put them down on paper but that would just show how old I really am. (My first few years at work I wrote on a manual typewriter. Wasn’t even electric. Frigin’ manual.)

I have received hundreds of e-mails (okay, dozens. maybe a handful, if the hand belonged to a firecracker accident victim), asking me if things were okay and wondering why no recent blog posts. There is a simple reason. I HAVE NO STINKIN’ TIME!!

But after the fourth or fifth e-mail I recently received asking me if Terry and I were okay because they hadn’t seen a recent post, I figured I better find some time.

I wish I had better things to write about.

The good news is that, for the first time in years I can actually say that things are better now than they were a month or two ago, when we went through some pretty tough times. Like what Andy Dufresne had to crawl through to escape Shawshank. Only he had a light at the end of that tunnel. Andy crawled through a river of shit and came out clean.

From the time Terry and I get up in the morning until the time she goes to bed, I have no time to myself. I can’t even take a shower until Terry goes to bed. You don’t want to hear about my other bathroom habits, and what I have to do to take care of them.

These days being a caregiver is 50% trying to entertain Terry and 50% trying to keep her safe. A few years ago, when I first knew Terry’s trips around the sun were extremely limited I made a resolution to make every day the best it could be for her.

But that was before the acting out, the violence. Before she began acting like Attila the Hun on the first day of his period.

When she gets sad, I feel so sorry for her. But when she gets mad, I feel sorry for me.

March, April and May came in like a lion, but they did not go out like a lamb, more like the shark from the movie Jaws. With transitions from lion to rabid mountain lion to Tasmanian Devil on the way.

During the month of May things got worse by the day. I dreaded getting up in the morning. Five to 10 outbursts a day, getting louder, more frequent and more violent by the day. Rock bottom arrived on Mother’s Day weekend, the week we were supposed to travel to visit Terry’s family.

Except for other caregivers who care for their spouse, no one knows what it is like to go through what a caregiver goes through.  Sure, they know you feed, bathe, dress and care for someone 24 hours a day. But they can’t know how it feels when the person that is most important in your life, the person you gave up your entire life for, the person you spend 24 hours a day trying to keep not only safe but happy, when that person hits you and screams ‘fuck you’ at you in a violent rage.

I’ll tell you what it feels like. It tears your fuckin heart out!

And my heart’s been torn so much I began taking aspirin every day because of the chest pains I now get on a daily basis. I used to lock the house doors when I needed to see a man about a horse but now I am afraid of dying in the bathroom and no one can come in to help because Terry no longer knows how to unlock the doors.

The neurologist put Terry on a new medicine, designed for bi-polars and schizos, and after a violent reaction the first weekend, things began to improve. The episodes became less frequent and less violent.

Like the song says;

If you’re going through Hell

Keep on going, don’t slow down

If you’re scared, don’t show it

You might get out

Before the devil even knows you’re there.

We kept going and we got out. But once it looked like we were out of the woods another symptom cropped up. Convulsions.

Not like seizures or anything like that. More like when you are dreaming that you are falling, and you wake up with a body shake. Or when you have something small and precious in your hand and you begin to drop it. The way your arms and hands react to that, like trying to catch the soap slipping out of your hands in the shower. Only Terry does that when she is not holding or dropping anything.

Several times a day, and more frequently as the days go by. It mainly happens when I ask or tell Terry to do something. The message is no longer getting from the brain to the muscles without going through roadblocks and detours.

The neurologist asked me last fall at our annual visit if she was having any hallucinations (none at that time) or convulsions (none at that time but he knew what to expect). I wish I could still say no to those questions when we visit him again in a few weeks.

Along with the involuntary arm movements there is another problem we are experiencing. Terry can no longer deal with settings with large crowds. Even when the crowd is made up of family members.

We were finally able to take that trip to visit Terry’s family but being in the backyard with 20 other people, even though they were brothers, sisters, cousins, nieces and nephews, and her mother, she could not get comfortable. She couldn’t laugh or be happy. She wasn’t mad or upset, thanks to the new meds, but not happy either.

But once we got home she was laughing again.

My lifelong best friend recently walked his daughter down the aisle and thank God we were able to witness it. But once the ceremony was over and the major party began, we had to leave. Terry got to see a lot of old familiar faces that were like her second family for the first 30 years of our marriage and that part was great.  But the fact that we had to leave so early was just another reminder to me how I can no longer enjoy so many things.

But after a horrible month of May the summer gradually improved, and we were able to enjoy that. Even though it was the first summer in 50 years I was not able to see, smell or put my toes in the ocean.

It is funny the things you miss, things you take for granted until you can no longer enjoy them.

That won’t happen when it comes to my wife Terry. I can never take what we had, what we still have, for granted. I sure do miss her, though.

Until next time (hopefully I am back in the saddle again and next time won’t be three months), enjoy what you have and don’t take anything, or anyone, for granted.

Bud