Someone recently asked me what it was like when I found out that my dad did, indeed, have Alzheimer’s. The question made me pause for a moment – on the one hand; the science-backed diagnosis meant it was real. It wasn’t in our imagination; my dad wasn’t going to suddenly go back to his old self. Things weren’t going to miraculously get better, in fact, this was as good as it was going to get and things weren’t good at all. “It’s all downhill from here” seemed very apropos!
An Alzheimer’s diagnosis is rarely “the beginning” – it usually comes in the eye of the storm.
In my experience and based on conversations I’ve had with many others, it’s something that has been happening for years. According to an article from the Alzheimer’s Association, “Changes in the brain related to Alzheimer’s begin years before any signs of the disease. This time period, which can last for years, is referred to as preclinical Alzheimer’s disease.” So the brain begins to change and decline long before friends and family notice.
Little things begin to stand out to those that know the person best.
Family and friends, those closest to the person, will then notice things long before someone who doesn’t know the person well. Little things start to happen that make you scratch your head… one memory I have about my dad was about a car. My dad loved sports cars and had one for as long as I could remember. When I was in college, he had a silver Mazda RX7 that he sold to my boyfriend who later became my first husband.
Long after the car was gone, he apparently forgot it. We were having a normal enough conversation and for some reason, which escapes me now, I mentioned the car. My dad, somewhat defensively said, “I never had a Mazda RX7.” Excuse me? Yes you did and I have photos to prove it. Since we were talking by phone I couldn’t find and show them to him right away but there was a seed of concern planted. I later mentioned it to my sister who also thought it was weird, and then my mom. Later still, I showed my dad a photo of the car and he still said that it wasn’t his.
It starts out with little things like that – forgotten things that you may or may not notice. Because cars had always been so important to him, it was a red flag for me. Had my mom forgotten a car I don’t think I would have thought twice about it.
As these forgotten memories and objects begin to pile up, you begin to ask yourself, “Is this normal aging or is this something else?” A small, nagging worry usually, most everything else seems ok…
Then more changes. Behavioral changes. My dad who used to be a great conversationalist, always talking and sharing about what he was doing but also very interested in what was going on with others, began to monologue. He would talk and talk and talk about himself and no one could get a word in edgewise. Now the question became, “Is he becoming a self-centered grumpy old man, is something else going on and how on earth am I going to sit through another speech about things I already know!”
Someone who met my dad at this stage might have thought he was a pompous windbag, but wouldn’t have thought anything was wrong with him. He still presented himself as a man who could reason, function and participant in everyday activities. We knew he had changed.
Things get worse and you start to ask a doctor’s opinion.
Eventually things get worse and you go to a doctor to see what they think. The doctor usually does some cognitive tests – where do you live, here are three words to remember – I’ll ask you what they are later, can you tell me what this picture is, can you walk a straight line… a series of questions and tests to get a feel for the cognitive abilities as well as checking balance and coordination.
These tests can be good and they can be misleading. The more intelligent a person was before the decline, the more ability they have to adapt to and hide what is happening. Some people are also better at taking tests than others. These tests are a good start, but not definitive. My dad passed with flying colors and came home angry that my mom dragged him to the doctor.
But the behavior continued so we pushed. We went back to the doctor – what else could it be. Blood tests were run. My dad was given vitamin B to see if it helped, it didn’t.
More time passed and he went back again – still convinced he was fine, still angry, his family still concerned and scared.
While we worried that it might be dementia, we held out hope that something, anything else would work. Some vitamin would be the answer, some chemical imbalance…
Eventually an MRI of my dad’s brain was done. The results were not good – the report said that my dad had vascular dementia. “Vascular” meaning he had dementia related to lack of blood flow to areas of the brain, so the brain cells were dying. The report also said that he did not have Alzheimer’s. We considered that the bright side… later we discovered the second part was incorrect and he has both vascular dementia and Alzheimer’s. (Want to avoid the 5 Mistakes People Make When Dealing with Alzheimer’s? I’ve created something that can help – and it’s free! Click here to get your copy)
Things continued to get worse. His behavior became more erratic and the once calm man who gave you the silent treatment if he was unhappy became outwardly angry. My parents had been living in Reno, Nevada up until this point and I finally convinced them that they needed to move to Oregon to be closer to me and my brother. I saw the writing on the wall – we needed them closer, they needed support.
We still wanted to better understand what was happening and what we could do. He saw a neurologist in Oregon who showed up the MRI images and explained the vascular dementia. She ran all the cognitive tests and was surprised at how well he did after seeing his scans. She said that she suspected he might have Alzheimer’s too and that if we wanted to know, she could do a spinal tap to see if there were beta amyloids and plaques in the spinal fluid. My dad agreed and the test was run.
We got the news that he had Alzheimer’s on my son’s 19th birthday.
So as you can see, the diagnosis was well into the process. We were well into the symptoms, the stress, the “how do we deal with this.” We were in the eye of the storm, our world changing at a rapid speed and unsure of what to do or where to turn. After talking about the Wizard of Oz I realized the cyclone scene was a pretty good way to explain it to someone who hasn’t been through it.
Our lives and our world isn’t what it used to be. (We aren’t in Kansas anymore!) but we didn’t know where we would land either. (We weren’t in OZ yet!) We were floating, disoriented and watching scenes of our lives pass by, knowing that things would never be the same.
THAT is what it is like when you find out someone you love has Alzheimer’s.
If someone you love has Alzheimer’s, I’m creating some resources to help. My goal is to help bridge the gap between feeling overwhelmed and empowered.
I hope you share this post with anyone trying to understand what this disease is like for the family and friends of the a person with Alzheimer’s.
– Tara Reed
I remember it well. Dad had so many symptoms for so long, we knew. But still, hearing the cold words…. He lived 8 years with it. Well, after Dx. He had it much longer.
Carol – it is so hard and YES – the diagnosis is by no means the beginning. Sorry for your loss.
This was heartbreaking to read and I know it must have been so hard to write. I’m watching a family member go through something(?) now – we’re not at the diagnosis stage yet. But when someone forgets how to use the ATM, you know something’s up. Thanks for using your journey to help others.
Katy – I’m so sorry… and you are probably right, when they start forgetting how to use things they’ve used for years or significant people or memories… it is scary. I would suggest keeping a log of things that stand out so you have information to share with a doctor – you think you will remember it all but rarely do. Hoping you are not starting down this road but if you do, I’m here!
My mother has moderate to severe dementia and lives 10 minutes away in a lovely new Memory Care facility. For several years, she refused to leave her adopted home state, California. So I was tasked with flying cross-country every month. My best advice to anyone giving care to someone with dementia is to find an eldercare attorney to get all the legalities in place. My parents long had a Family Trust, so there was a roadmap; but an eldercare attorney has the know-how to start the processes and work with twists or turns that come up.
After several/many years of traveling to see my mother – when she no longer had any idea where she was – I was able to move her close to me. I do my best to never, ever compare the Memory Care procedures in California to her new care givers here. Both sets do an excellent job treating their residents with kindness and attention.
Dementia seems partial to robbing those who once had brilliant minds. Doctors, professors, researchers and their lifelong helpmates are now struggle to remember if they have a toilet in their apartments.
Camille – I can only imagine what the travel was like! I was worried that was going to be my story and was so relieved when we convinced my parents to move to Oregon so they are close.
Also 100% agree about the Elder Care Attorney – it is definitely one of my first suggestions in my book!