‘‘Tis the Season – Again

I remember, with fondness, back in the summer when I knew our grandson would be born – “Yay! We will get to have Holidays again!” For years now, we have gone through the motions of “celebrating” the Holidays; especially Thanksgiving and Christmas. Everyone agrees – these Holidays are way more fun if small children are involved. Prior to this new baby, our youngest grandchild was fifteen years old! I know that, as we age, our situations change; new people are added to the family, we lose some people. Family members move, traditions go by the wayside. Sometimes we have to adapt or change the way we do things because a family member has an illness, or disease.

I get and accept all that. For years, mainly because of Doug’s Alzheimer’s, we have done just the bare minimum and worked around him and his condition. We have adjusted and “made do” and rearranged, to the point I wonder why we even bother anymore.

But now – A BABY! Oh, the possibilities! Yes, we live 4 hours apart, but that drive is totally doable! The parents (my son, Brian and wife Bethany) have a designated bedroom in our home. I bought a crib. Visions of sugarplums and fairies and Santa Claus and early Christmas mornings were dancing in my head; as early as September first, when he was born.

What the Hell is wrong with me?

What on earth made me think a baby would bring the family closer? If anything, we are further apart, with a baby thrown into the mix! If my son (or actually, his wife) has his way, Doug and I will always be the ones to travel to see the baby. They won’t travel to visit us because everyone knows how hard it is to travel with a baby. Except…oh, wait! They Did manage to travel by car, with the baby and their 100 pound dog 1,680 miles (one way) to attend Her sister’s wedding! Thank God for FaceTime! At least, once a week, my son FaceTimes us so we can see the baby!

Christmas, this year was at my house. Low key. My daughter, her husband, grandson, granddaughter, my sister, her son and his girlfriend. My daughter refused any of the dinner because she is on a “new” soy free, gluten free diet. But that was okay because my nephew’s girlfriend ate four platefuls. I counted. The grandkids didn’t thank any one for their gifts. We FaceTimed with Brian and then everyone went home. Merry, Merry!

What is so sad, to me, is that if Doug has another Christmas, he won’t know any of us! This was probably the best one he will have. I hope he had a good one. I’m sure he didn’t notice the undertones that I am always aware of. He seemed happy. It’s hard to get him to smile anymore. Stay tuned.

My Days

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.  Stay tuned.

Snippets – Tuesday

It is almost a New Year. Lord, help me! This morning, 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!

Today, 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!

Snippets from My Week

Thursday Morning – we’ve been up for about an hour. Him – “What’s wrong? You’re not talking.” Me – (out loud) “Nothing. I haven’t woken up yet.” Me – (in my mind) Really? And who, exactly, would I talk to? Myself? The dogs? YOU? And what would we talk about? Do you realize. That question you just asked me? That’s the most complete sentence you have put together in over 2 weeks. I haven’t woken up yet because I have been awake since 3 a.m. worrying about bills, money in general, Christmas is next week, my phone calls are not being returned. YOU! Always, worrying about YOU! Yeah, not very talkative.

The Wanderer

This is my husband’s newest thing. He will simply open the door, and he’s gone! He used to go outside and mow the yard. Now, he has broken both the riding and the push mowers. He told me the other day that he wanted to rake the leaves. I found the rake for him and got him a box of lawn and leaf bags. He raked some of the leaves and instead of putting them in the bags, he put them into an old ice cooler and a cardboard box. He used to take the dogs for a walk (we have two small ones). One day, my daughter was on her way over to visit, and she passed him walking the dogs, in the middle of a very busy road, dodging the traffic! Now, we hide the leashes for the dogs so he won’t “walk” them.

In 2014, we bought a whole house alarm system. (This was a direct result of the year of 2013 – the worst year of my life – so far. He had daily paranoia. He had not been diagnosed yet with Alzheimer’s, so we had no clue). There is literally a siren on our roof! Very loud if a door or window is opened when the alarm is set.

Last Sunday night, I was exhausted! Had cleaned house and done laundry all day. Went to bed early. Max, the little black dog, sleeps between Doug and I in the bed. I believe this was maybe the first time since 2014 that I forgot to set the alarm before bed. Next thing I know, my front doorbell is ringing and ringing; at midnight! I jump out of bed, and open the door to two strange men. One of whom is holding Max (the dog) in a blanket! Very confused, I listened as one man introduced himself and said, ”We live in the neighborhood. As we were letting our dog out for the night, we found your husband, lying in our front yard, saying he thought he was having a heart attack. We called an ambulance to take him to the hospital and we’re returning your dog”. 😮 OMG!!

Went to the ER to get him. He did not have a jacket, (it was 39 degrees outside) he had on two different shoes, and no – he didn’t have a heart attack!

I am currently searching for tracking devices (Amazon sells one called Tile) and I will Never forget to set the alarm again! Stay tuned.

Reality Check

My husband of 48 years has early on set Alzheimer’s. I’m tired of saying that. Early, late, doesn’t matter. My 68 year old husband has Alzheimer’s. He was diagnosed 2 years ago, but has probably had the condition (disease?) for several years. What is still,  still surprising to me,  is how fast this is progressing.

I planned a trip for us to Florida, knowing this would probably be the last one that he would enjoy. His brother and wife and his sister and her husband own homes within 30 miles of our destination. We would visit with them, lie on the beach, work on our tans, drink fruity drinks. It’s Florida! What’s not to love? So, we boarded the dogs, got on a plane and 2 hours later, we (along with my sister) are in the Sunshine State. Ready to enjoy a much needed vacation!    N O T !

What I didn’t realize then, is that when you take someone, like Doug, out of their known environment (home) and displace the thing they cling to (his dog),  they become manic. He would lie next to me in bed and pat and stroke my arm,  thinking I was our dog, Max, who sleeps with him at home. At least twice a night, he would get up, out of bed and go tearing through the suitcases and would cry, ” I have to go! I have to get my dog!” Days weren’t much better. He couldn’t walk on the beach, because his balance is off. He could only lie on the beach for 15 minutes at a time before he got antsy. Fidgeting is a real thing for him. He was okay around his family; friendly, if somewhat withdrawn. Most days, to deal with his anxiety,  I would put him in the car and just drive.

It was a long week. I wish we had not gone, but I learned a lot. I am only working part time and will retire next month. Doug needs me, full time. I have hidden his car keys, so he has started wandering. He doesn’t like to bathe and eats very little. But, as long as I am with him, he goes where I go, and does what I say. So, this is our new reality.

Left to Right – brother Jim, Doug, sister Patti. 2017.

My Life

Okay, so.. I read a couple of my last posts, and they are downers. I started this blog to be funny, but here’s the thing. My 68 year old husband has early on-set Alzheimer’s, and my life is no longer funny.  I have lost my therapist, my friends are tired of me, and, you know what? I need an outlet. I have exactly three people that follow this blog, so here’s the thing.  Read this – don’t. Whatever.  I really don’t care.  I Have to have somewhere, someway, to vent. I don’t care if Anyone sees this. I am just putting it out there.

Apparently, going forward, my days, if today was an example,  will consist of Doug napping for two hours, and then, still, going to bed – for the night – at 7:00.

You know, that’s okay.  He needs his rest. And he takes sleeping pills, but, still…. I miss him.  I miss the companionship, the conversation, the Presence, of my husband, my best friend, my Guy!

So, I am going to quit my full-time job in December, to stay home with Doug, full time. I have worked, everyday, of my life, since I was18 years old. This will be a Major challenge.

So, this is my life – going forward.  And I am Not ungrateful. It is Not cancer. It is Not heart problems. It is Not stroke.  I get it!  God knows – it could be worse, and much more immediate.  But, the truth is – it is slow and agonizing, and very isolating.  But, I will find my way, somehow- to make our life as good as it can be, for as long as it can be, for my guy.

Stayed tuned.