How do you prepare to be the parent of your own parent? I realize it sounds strange, but this happens most every day. In most cases, it seems we are thrust into it…out of the blue it came, but did it really come with no warning?I feel I can talk about this matter with experience on my side. My brothers and I felt as if we were thrust into this situation without any warning at all, yet when looking back, I can see the many signs we chose to ignore or explain away. If you haven’t guessed by now, I’m talking about the ugly invader of the mind called Alzheimer’s. By sharing our experiences, maybe it can help someone now or in the future. I pray this will reach families and caregivers helping them to cope with daily uncertainties that comes with Alzheimer’s…helping them to love…to learn and listen with their hearts, even when you know the details are scrambled up.
I won’t beat around the bush, many days there will be challenges, but if you let yourself go with the flow, with whatever the situation may be for that day, to ride the wave as it comes, you most likely will learn things you never knew about. It will help you to have memories to cherish, instead of guilt, which is kept in the hearts of so many of us caregivers, when our loved one passes away. I thank God that we were able to be there in both of our parent’s time of need. I can truly say I’m grateful, even honored, that God allowed me to go through this journey with them…to go back in time with my dad and mom as it played out in their minds each day. I pray that my brothers and I brought them a little comfort in a time of their life that didn’t make sense to them anymore…a time of everyday struggles and needs. I pray most of all, that they felt loved and had little fear, because my brothers and I had enough fear to go around.
There may be numerous books written about Alzheimer’s by famous authors, doctors and researchers of all kinds, but I’d like to offer a glimpse of what it was like from the view point of a family that lived it for over 12 years. This will be written in several part series, so not to overwhelm anyone with too much too quickly…to give you time to ponder…to digest it as it comes. I have no fancy words or medical jargon to throw out there; I only have real life experiences of a roller coaster ride, conversations and the raw emotions that go along with dealing with this dreaded illness.
First, let me point out the obvious; Alzheimer’s is a friend to no one. It doesn’t care who you are…it doesn’t discriminate. It doesn’t care if you are rich, middle class or poor, neither does it consider what you have or your social status. It feeds on the brain of anyone it can invade. We may have the belief that it only occurs to the elderly, let’s say, in their eighties, but it has been known to start in some in their fifties and in the case of a late cousin, he started showing tiny signs in his later forties. Yes, this is a very sobering thought. While there is promising research going on, currently, it’s an ongoing reality in thousands of families today.
Looking back, I mean way back, I can see slight changes in my mother starting to occur. One afternoon, after our annual get together at my cousin’s house for Easter, mom was ready to leave. Getting into her car to go drop off my aunt, she started up the engine and shifted the gear into reverse. Suddenly, at the mailbox, she slammed on the breaks and leaned her head out of the window. “Carolyn, do I turn right or left?” she asked. “I know I’ve been here many times, but for some reason I’m turned around,” she giggled. Not thinking much of it, because after all, who doesn’t have a forgetful moment now and then, I pointed out which way to go. Mom was in her mid-sixties when this occurred.
Little by little, her forgetfulness grew. Even though we saw it happening, we could always explain it away. Since it wasn’t an everyday occurrence in the beginning, we’d rationalize it and even joke about it at times. I recall the time mom couldn’t find her purse and we found it later in the freezer. I joked and said she had taken “Freezing Her Credit (Cards)” to a whole new level! We all had a good laugh about that one. Mom explained that it was dark, and she must have thought she was putting it in the closet. She was getting older and her eyesight was failing, especially in the dark. That’s how we rationalized it. Her explanation sounded logical because we wanted it to make sense. We didn’t want to acknowledge that these slips of the mind, had grown more frequent, so we simply swept it under the rug, I guess you could say. This happened almost a year after the driving episode at Easter. It wasn’t very long when I started noticing more issues when she drove. I’d often go with her to doctor appointments. Most of the time she wanted to drive. Little by little, I started to see she was having difficulty with directions; She had driven down these roads for decades, but now she found them hard to recognize. Questions began to flow through my mind, and I didn’t like the answers I was getting.
Mom showed increasingly, obvious signs for many years that we chose to ignore and explain away. We pretended nothing was happening and buried our heads in the sand hoping it would clear up on its own; but that didn’t change the harsh reality of “Dementia and Alzheimer’s.” I can’t remember how long I let this continue before approaching my brothers about it, but it was a very long time. If you don’t see your parent every day you don’t notice the changes that are gradually taking place. If both parents are in the house, it is likely explained away by the other parent until it starts becoming so often that they begin to confide in the children. No one wants to believe Alzheimer’s may be invading their loved one’s mind, so we put off thinking about it until it can’t be ignored any longer. Doctors can confirm it if this be the case. There are some promising medicines that can slow down progressive symptoms, I am told, if Alzheimer’s is caught in the early stages, unfortunately, most of us are too afraid to find out and wait too long. I totally get it. This is a diagnosis none of us want to hear!
More little signs that were explained away were: Burning dinner repeatedly. Putting clothes in the dryer to wash. Misplacing items time and again. Forgetting numbers and birthdays that had never been missed before, doing things they’d enjoyed and done for years becoming difficult to do. One day I noticed mom staring at the microwave trying to figure out how to work it…another one, just as my dad would do years later, she was trying to use the remote as the phone. Too often, we just brushed the signs we were seeing under to rug and didn’t talk about it…ignoring the obvious signs. Opening the freezer door became and adventure because you never knew what you might find in there. Luckily, mom never drank coffee like our dad did. Once he put salt in his coffee and another time dried grits, thinking it was sugar…talk about spitting…I almost got a face full if I had not ducked. We had a good laugh about it not realizing he was heading down the same road as mom.
Around age 73 or 74, it became unsafe for her to do the cooking and dad took it over. She was glad because he was a pretty good cook. Many days she’d be surprised to find him in the kitchen preparing supper. Dad, not understanding why she couldn’t remember this and many other normal things, he began to grow frustrated and would snap at her harshly. He was nearing 80 and sharp as a tack for his age, but mom’s illness, which we still had not admitted to ourselves how severe it was getting, was starting to take a toll on him, as well as the rest of the family. This illness effects the whole family. It can cause great stress if you let it and don’t know how to work through daily issues. Being prepared and not sweeping signs under the rug, like so many of us did who’ve gone through it, is the key to a much smoother journey with our parents. It’s no picnic for anyone, but there are ways of doing things and not doing things that will make all the difference in the world to your parent and the caregivers…and yelling at them is Not a thing you do.
I’m sure some reading this will be appalled and say, “I would never yell at my parent with Alzheimer’s,” but there will be times when you feel like you are at your wits end. Everything you’ve tried that day has been an absolute struggle and you feel like you are about to burst a vein! This is when you might scream out at them in a way you never thought you could, because you are so frustrated and worn down. This is when it’s okay to scream, but take it outside. Don’t scream at your parent because they are into one thing after another, having a hard time keeping them from causing a dangerous situation, when in their mind they are simply doing normal things, or answering the same question twenty times in a row…just go outside and let it out…scream and cry for a couple of minutes. You’ll be surprised how much better you will feel. It’s like letting a little water out of a dam to prevent it from bursting.
Your parent has gone back in time but feels like the present to them. They are now living in memory lane. Each day is a new day in a different time in their life, for instance…my dad could be in WWII one moment and later he is a young boy plowing behind the family mule Bessie. When he left to go join the army he said, “Bessie, I will never put a bridle on you again. I’m going away and don’t know when or if I’m ever coming back. I just want you to know that I love you and will miss you.” How sweet it was to here my dad talking so tenderly to his old mule that was really some object he was looking at in the room. Mom would do similar things. It all depends on what stage of the disease they are in as to the symptoms presented.
Please Remember This One Thing: Don’t Keep Correcting Them About Any Details or Trying to Convince Them That Something Happened Long Ago. Don’t Try to Bring Them Back to the Present. Once they are past the early stages of Alzheimer’s, their mind cannot retain present life events like they used to. It will cause your parent more confusion, tears, and many unneeded arguments that will be stressful for them as well as the caregiver. I’ve found that if you learn to talk with them in the time of life that they are living in, it will be a much smoother ride down memory lane. I learned many things that I never knew about and found myself asking lots of questions that they could easily answer. They were living it out a second time, but the difference was my brothers and I could be by their side this time around. It gave us a feeling of being part of it as they relived it and created precious memories in our hearts. I’m thankful to have been with our parents in this journey. Although it was a sad, difficult ride, it taught me a lot about myself…some good and some not so good.
I’m glad we were able to help them through it as they prepared to leave this life for their eternal one with our Lord Jesus. I’ve become a more compassionate and loving person that I don’t believe I’d be if not for this experience. You can let it destroy you or make you a better person…it’s all how you handle the challenges that may come each day.
I’d like to shed more light on this in hopes to help someone dealing with Alzheimer’s in their family right now, or even in the future. I’m no doctor. These are our family’s experiences that hopefully will help others. I wished I’d had someone to share some of these things with me beforehand. I realize there are great resources out there on this subject, but sometimes you need to hear it from someone that’s lived it recently, or from a different viewpoint, for it to make a little more sense.
If this has been of help in anyway, please check back shortly, here at Faithwriters, for my continuation of: “Facing Alzheimer’s with a Parent,” part II.