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.
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!
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.
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.
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.
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.
So, I’ve started seeing a therapist. My good, sweet, loyal friend, Judy, did extensive research to find someone whom I would be very comfortable with. And she did an excellent job. Amanda is a very empathic, caring girl (she’s half my age). Seems to know her stuff. Although, I don’t know what her stuff is, exactly. I’m not sure what our purpose is. I basically, wanted a safe place to go to just talk, about me. Maybe to vent, or muse, or cry, or whatever the day called for. At first, I thought that was the agenda. I’m sure that Amanda is highly qualified (Judy would never accept less, on my behalf), and I know her patients (clients?) vary in ages and problems. First visit, she asked me what I wanted from our sessions. Since then, we seem to meander. Which is fine. I think. I, personally, don’t have an agenda. My “problems”, are ongoing, with no solution. I assume the only thing she might want to work on with me, is how I respond to my ongoing problems. At any rate, today, she asked me several “leading” questions – such as, what am I afraid of? What are my options? Etc. During some of the questioning, as I’m trying to articulate my answers, I began to cry. I won’t lie. It’s been a rough week. She let me cry for a while and then she said, “I’m going to let you feel sorry for yourself, today. But we are not going to do this again.” ????? What? Okay. Where else do I get to feel free enough to cry – if not here? I can’t cry at home, or work or in my car. I am Never alone. What is the alternative, exactly? There are no solutions, so….? I don’t know. I see her every Tuesday, so it will be interesting to see what next week brings. But, apparently, there’s no crying in therapy! Who knew? Stay tuned.