My first indication that I might have a problem happened at school. I had an important meeting with a parent and our principal, and I forgot all about it. Even when I was called into the office, I couldn’t remember why I was there. To say that my principal was angry with me would have been an understatement, and I know I lost respect with that particular parent.
I hid it, however. My mother, who was still alive at the time, had severe Alzheimer’s, and her mother before her also had the same diagnosis before she passed away. I already knew the condition was considered hereditary. Was I to be the next victim? I determined I wouldn’t be, and I began eating coconut oil and standing on one foot to improve my balance. I didn’t tell anyone about my fears, however. I already knew how people with Alzheimer’s were seen by the general population. I didn’t want anyone to judge me. I didn’t want anyone thinking negatively about me, as I knew they would if the word “Alzheimer’s” was mentioned. And mostly, I didn’t want to talk about it.
I already knew my wife suspected cognitive decline. After spending 30+ years of her career working with adult neurological patients, I’m pretty sure it would have been hard for her to miss. When she began suggesting that I see a doctor, however, I refused. What could a doctor do?
When she saw she wasn’t making any headway with me about seeking medical care, she came up with a new line of reasoning. She suggested that perhaps a CT scan would rule out any type of potential brain lesion. This actually made sense to me, as my father had died of a brain tumour 25 years earlier. And so I dutifully went to the doctor who agreed to a CT scan.
She also did something else, however; something that completely dehumanized me. She made me take what she called, “a little memory test”. As it turned out, it was a common cognitive screening tool that even my wife was familiar with. I was reluctant from the beginning, and the longer the test went on, the more it revealed to me just how low my cognition had sunk. No, I couldn’t read the time on that clock! Yes, I knew I should have been able to! But who uses analog clocks anymore, anyway? And I certainly didn’t see the sense in having to actually draw one of those antiquated mechanisms! I’m no artist in the best of times! Why were they all concerned that my clock face looked funny? Didn’t they realize I was legally blind in one eye and things didn’t look the same to me as to everyone else? And then there were those four words I was supposed to remember. I already knew I couldn’t remember them. Why wouldn’t they let me write them down, as I might have done in functional situations? And come on. I’m a polyglot, one who speaks many languages. Why was it so “significant” that I couldn’t remember the names for those four pictures they showed me in English? It was over all such a humiliating process for me. I was already aware there were problems, why did the medical world see the need to “rub my nose in it”?
I already knew that people with Alzheimer’s ended up in nursing homes. Wasn’t that where my own mother was living even at that moment in time? I knew from her experiences what it was like to live in a nursing home, and I knew enough to know that there was no way in the world that I ever wanted to live in one! But the way my wife would look at me with — I don’t know — was it pity I saw in her eyes? How long did I have before she would put me away? I was really depressed about this one day. My wife didn’t know what was causing my depression, but she knew me well enough to know that when I refuse to talk about something, it is something that I really do need to talk about! She encouraged me to go out for a walk, and then she questioned me until I broke down and told her: “I’m afraid you will put me in a nursing home!” She lovingly reassured me that she wouldn’t. She promised that as long as she was able to take care of me, I would stay with her, where I belonged.
It should have brought me comfort, and on one level it did. But the fear continued to loom.
I was eventually sent for a PET scan. We had to drive to a nearby city for the test, and then, naturally, we had to wait our turn. We were placed in a waiting room with other patients and their spouses who were there for the same reasons. Being a bit more outgoing than I am, my wife quickly struck up a conversation with the spouse of someone who was also waiting for a PET scan. I couldn’t follow everything they said, but I quickly got the gist of the conversation. This spouse was extremely angry at her husband. She wasn’t coping well with his loss of cognition. She talked down to him as if he were a child, or even worse, a dog; sometimes talking over him as if he weren’t even in the room. She didn’t want to be there, she didn’t want a husband with Alzheimer’s, and she was angry that life had handed this to her.
The incident did several things to me. First of all, it made me thankful for my wife. Sure, she got impatient sometimes, and yes, her constant encouragement for me to find my words and to do cognitively-stimulating exercises wore my nerves thin; but she never made me feel the way I could tell this wife in the waiting room made her husband feel. Yet I knew that this was how the world at large viewed people with Alzheimer’s. Is this how they viewed me as well?
It didn’t help that my communication quickly deteriorated to the point that even a simple conversation was difficult for me to follow. Perhaps the hardest thing I had to deal with, however, was the overt shunning that I received from people I considered friends, even from members of the family. I will admit that when I say “overt shunning”, this was nothing more than the perception of my insecure mind. Nonetheless, it seemed so real to me. I felt completely alone, even around those who I knew did support and love me, despite my diagnosis.
Yet through it all, I wasn’t alone. Maybe all humans saw me differently, but God was still there. He still had His hand upon me. He still loved me. The more alone I felt, the more I leaned into Him. And then, one day, as I’ve told before, He appeared to me in my bathroom and promised my healing. That was the day I realized in the depths of my soul that I was truly — not alone!
If someone were to ask me what was the Bible verse I clung to the most in those days, I’m pretty sure my response would have been Deut. 31:5: “Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” (NIV). With this promise in hand, I knew beyond a doubt that no matter how abandoned I felt, God had not forsaken me. No matter how others treated me, I would never stand alone! Thank You Jesus!
If you are facing Alzheimer’s, or if you are facing some other type of trial, remember: You don’t stand alone! So don’t be afraid or terrified! God goes with you and He will never leave you or forsake you!
The next parts of this series will be contributed by my wife. Although this is a very tough journey for me, personally, it is a living hell for her to watch my cognitive decline, to have to take on more and more of the household responsibilities that I would normally have done, to have to be patient with my needs and my limitations and constant interruptions of whatever it was she was doing… No, it isn’t easy for her, and perhaps something in her story will encourage some other spouse out there who is dealing with a spouse who is going through difficulties!
In His love,
(To access the entire “Living With Alzheimer’s” devotional series, please click here.)