Yesterday, Doug coerced me and the dogs into the car around 10:00 a.m. We started out on our “day trip”, as usual. I can usually go anywhere from 20 – 45 minutes in the car (destination unknown), and he is calm. Today he is directing me as I drive. Turn here, turn there. He directs me to get on the Interstate to Louisville. I ask him, where are we going? To Louisville, he says. (at least 2 hours away) What? Why are we going to Louisville? Have you ever been to one of those? (He says). One of those what? One of those chicken fights. Uh, no. Why? Is that why we are going to Louisville? Yeah, he says. Uh, no. I am not driving to Louisville for a chicken fight! Ok, he says. Turn off at the next exit!

Yesterday, still. I asked him at 3:30, is there anyplace else you want to go? No, he says. Six o’clock, he’s pacing. (Love Sundowner’s). “We have to go!”. Go, where? “We have to go check on Johnny, and Fred, and Jimmy”. Doug, I am not driving in the cold and the dark! I don’t know who Johnny, Fred, and Jimmy are, but I pray they will be okay, because I am not driving tonight. Major fit! “We have to go help them”! Yeah, no. This pacing went on until after 10:00. He basically has 2 speeds. I either medicate him to the point he is asleep by 6:30, or I back off and he paces and mutters until exhaustion takes him at 10:00. – 10:30. Either way, we both stay – exhausted!

I wonder what other people do for fun?

I have been lucky enough to hook up with a couple of online support sites, created for caregivers like myself. We have a very unique world, with very specific needs for ourselves and our loved ones. A few of these ladies have become friends. What is wonderful on these sites is the help, advice, and resources that these people gladly share.

Last week, I went on one of the sites to ask about a possible “fidget mat” that I could buy for Doug. Alzheimer’s people sit and “fidget” with items.  They tear a tissue into tiny pieces, run their fingers over beads, repetitively.  This activity calms them. In Doug’s case, he was running a length of rope through his fingers. You can also buy these or have them customized. The cost to buy them is not cheap! From $50-$90 is the norm.

While I was researching this, I came across a lovely lady in east Texas, who has a group of ladies who meet once a week and make these. Then they Donate the finished mats to local hospitals, nursing homes, memory care facilities, etc. I fell in love with that idea! I can share her email address if anyone is interested. She was very helpful on how to start a group like hers. I am in the process of starting my own group and, for the first time, in a long time, feel like I have a purpose again!

My days, obviously, revolve around Mr. His wants, his needs, his “moods”. He has been mad about something for three days now. I don’t know what made him mad. He doesn’t know what made him mad. But he’s hanging on to it! You would think he would have “forgotten” to be mad, but no. So, like the good little soldier I have become, I go with it. You want to be mad, we’ll do that. You don’t want to talk, we’ll be silent. Lord knows, I have other things to keep me busy. Busy work. Like sweeping the front porch for the fourth time today. Like cleaning up the broken plate in the kitchen that I threw against the wall last night. Because you were “mad” and refused to eat the supper I had actually cooked. It’s fine. I made a note of the day and time. I won’t cook again. I can’t afford to lose my cool. I can’t afford to get mad, or sad, or anything. I have to remain, if not “upbeat”, then at least calm, for your benefit. That’s the only way we can roll. My job is to make sure you eat (something), take your medicine, keep you relatively calm and entertained, make sure you are safe and sleep well at night. Oh, and do all the things you used to do, but can’t any longer. Yard work, car cleaning/maintenance, making sure I keep the car filled with gas. Taking the dogs to groomer/vet. Pay the bills, shop for groceries, drive you to doctor’s appointments, haircuts, dentist, It is exhausting for me, but this is my life. Love you, Mr. Moody Pants! Hoping for a better day.

I really wish there was A Book! One that you could read, that contained very personalized information concerning what was going to happen in your life and how to handle it. (for those of you reading this and thinking the Bible – uh, no. I mean layman’s terms. No thee and thou. Just – Marty, here is what will happen to You. And here’s what to do when that happens.)

My husband’s diagnosis of Alzheimer’s disease 2 years ago, blindsided me! I had been through this with my Mother, but it’s a whole different ballgame when it comes to live in your house, and sleep in your bed. This whole journey is trial and error. Not just by the doctors, but by the caregivers as well. Why? Because no one knows what causes the disease, no one understands it, there is no cure, and in the best of times, medication will sometimes slow it down; but not always. Every person is different and will not respond the same way to treatments.

You learn, pretty early on, to establish a routine, a schedule. People with Dementia have to have it. Everything is so confused in their thoughts, they have to have someone to help them. How to help is very personalized and is a daily struggle. A caregiver literally gives up their lifesyle for their loved one (spouse). It reminds me of being the mother to a toddler. Everything is about them; their wants, needs, likes, dislikes, mood, sleep, attitude, etc.  It is daily, ongoing, with no relief.  Having a caregiver’s support group is the only way to find  help on a daily basis. This is as close as I have come to finding “a book”.

 

Since I “retired” from my full time job, to be sole caregiver to my husband (who has Alzheimer’s), I never know what day it is. I bought a clock that says, in big block letters, ex. FRIDAY, Morning 8:30 A.M. March 2, 2018. So that really helps, but I don’t really know what day it is because one day bleeds into the next. If you saw the movie “Groundhog Day”, it aptly sums up my days. I wake up, go turn off the house alarm (necessary not to keep burglars out, but to keep Mr. IN), let the dogs out. Turn the t.v. on (for Mr.), bring Mr. a glass of juice. Make my bed, return to kitchen to start breakfast. Pancakes. Every day. Seven days a week. Pancakes. Feed Mr. Then me. Give Mr. his pills. Then take mine. Clean up kitchen. See if Mr. wants a shower. Go take my shower (for me). Get dressed. Check on Mr. and the dogs. “Everyone ok? Need any more to eat/drink?” Ok. Find Mr. something to watch on t.v. At this point I either A. sit down and pay bills (depending on the time of the month) B. make phone calls to people you need to call on weekdays (doctor’s, bankers, insurance company, etc.), C. start the laundry D. pack up the gang to run errands (the dogs go with us everywhere). Lunch is simple, quick. If God is present, sometimes Mr. will nap in the early afternoon. Most days, no. Afternoons are spent taking Mr. “home” (we have a specific route that we take, in the car, with the dogs, that makes basically a circle around the city, then back home) more t.v. until time for supper. Wine (for me), supper, pills, t.v., let the dogs out, set the alarm, the bed. I sleep until 2:00-3:00. Wake for an hour or so. Back to sleep until I hear Mr. Then, start again. Almost, without exception, these are my days. The days when there is an exception are worse than this. That involves him being angry/moody all day, wandering, or general, nonverbal sitting in one place. I had all these plans! We would join a gym! Tried that – Mr. kept falling off the treadmill, couldn’t manage the bikes. We would take long walks! He shuffles. Will not pick up his feet. We would volunteer at the Humane Society! Uh, no. People tell me, you have to take care of yourself.  Sure. Yeah. Hire someone to sit with him. He is too paranoid. Take him to Adult Daycare. They don’t allow dogs and the only time he will leave ours is if he has a doctor’s appointment. Very occasionally, about once a month, I make up a doctor’s or dentist appointment that I have and leave him/dogs for an hour to grab a quick lunch with a friend. But, basically friends (both his and mine) are in our past. Life, for them, is moving forward and Mr. and I can not participate in a future.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton