My Reality as the Girlfriend of a Man With Early-Onset Alzheimer's
Imagine the man of your dreams. The man you have waited your entire life for. The man that makes all the pain and regret in your past worth every tear – because it has all led you to him. Imagine meeting him in the most unusual way and falling in love with him instantly.
Now imagine that he tells you he isn’t perfect. That he has struggles. That he has serious medical issues. Medical issues that will dictate your future together. Issues that scare the hell out of you.
This is my reality. I will never forget the night he told me about his medical history and what he was facing. In the following year, I would stand by his side at countless medical appointments.
We would learn that his original diagnosis was inaccurate, and that what we were facing was far scarier. Throughout our research we were fairly confident we were looking at some sort of dementia. The symptoms were all there. We fought for tests, we pushed for what we knew he needed in order to get the answers we needed. I had told myself countless times that he had dementia and that this was my reality. Our reality. I was prepared. To live with, and to love completely, a man who has dementia. But the day that we heard the doctor actually say the words out loud, it literally took my breath away. Early-onset Alzheimer’s disease (dementia) and a secondary diagnosis of “dementia due to head trauma”; additionally, chronic traumatic encephalopathy (CTE) is suspected. Optimize the good days, the doctor said. I was not prepared.
I was angry. I was hurt. I was scared. I was heartbroken. I felt slighted. I felt guilty. I felt numb. There was a small part of me that hoped beyond all hope that there would be some other treatable condition that would explain everything. That we would be told he was going to be all right, and live a long, happy, healthy life. With me. As us. But that is not my reality.
My reality is doctor appointments, medications, and caregiving for the man I love. My reality is knowing that he will deteriorate right before my eyes. My reality is knowing that someday, and no one knows when – because we are not in control – he will likely not know who I am. He will not remember how we met. How we fell in love. Our happiest memories. He may forget his own children, and that is a hell I wouldn’t wish upon anyone. My reality consists of sundowning episodes that literally take all I have to get through. Reminding and prompting him to do simple daily tasks.
My reality is keeping him motivated to keep moving forward, on days when my own struggles have me wanting to shut down. My reality is a rollercoaster that I ride with him – and this disease is in control. My reality is needing a break from taking care of an amazing man with dementia. Needing to run to the man I love. The man who supports me and makes me smile. The man who is my rock. To focus on me, to find release and have time to not have to think about this disease. My reality is that those men are the same man.
My reality is knowing when I need him as my partner, and knowing he doesn’t have the capacity for that at the moment, and standing strong on my own. My reality is putting this horrible, unfair, nasty disease first. My reality is looking at this man – this strong, brave, amazing man – and one moment seeing him as the love of my life; my protector, my best friend, my everything… and the next moment seeing him as the most vulnerable man needing strength from me.
My reality is struggling with being both his girlfriend and his caregiver. Switching between roles and being both at the same time can be challenging. At times, when he is having a good day, we are partners, equals. Happy and carefree and loving our time together. These are the days when it is easy to forget that he is sick. It’s easy to feel normal. These are the days I wish would never end. On his worst days he doesn’t get out of bed. He doesn’t shower. He needs to be reminded to eat and take his medication. It is on these days that I am his rock. It is on these days that I am most grateful for the good days. It is on these days that I am starkly aware that there will come a time when the good days are less frequent.
My reality is finding happiness in the smallest things – remembering that I am blessed beyond measure. Knowing that every moment I have with him is precious. My reality, no matter how difficult it may seem, is not near as difficult as his reality.
His reality is being 38 years old and facing this cruel disease. His reality is not being able to function at the high level that he once did. His reality is no longer working, coaching, leading, and feeling like he is as strong, successful, and contributing as he once was. His reality is putting the cereal in the refrigerator.
His reality is not being able to read a book as he once enjoyed. His reality is frequently comparing his current self to his “old” self. His reality is missing relationships and colleagues. His reality is making this reality public. His reality is waking up each day and remaining brave. His reality is hating the hand he was dealt. His reality is feeling like a failure. As a son, as a father, as a man. His reality is scary. Far scarier than mine.
His reality is a world that I cannot imagine from his point of view. I can empathize with him. I can love and support him with every ounce of my being. But I don’t truly know his reality. And his reality, as well as mine, will be changing from this moment forward. With each progressive phase in this disease our reality will completely change. Our reality is perfect. We have each other and we know that
together we can face anything. Our reality is beautiful and our reality sucks. I have never been so happy and so sad at the same time. We face the same challenges that any “normal” couple does, and then our relationship is compounded by this disease. It makes communicating far more challenging. It requires additional patience. It means that I need to offer reassurance; sometimes constantly. And it also means that I cannot read anything more into that than it is part of his disease… not him questioning my love or our solidity. Planning activities as a couple is often impossible, and our social life suffers. This awful disease is in charge of our reality.
If there is anything I have learned in the last year it is to trust in God and His plan. He brought us to each other, and I have faith that he will continue to watch over us and guide on this journey. Together. As long as He deems that to be.
I am looking forward to connecting with others in a similar situation. Others who know all too well how impossible it can be to navigate the medical system. How medical appointment after frustrating medical appointment, repeatedly telling your story to yet another doctor, results in another referral. Another test. Another medication change. Those who have been up hours into the night in front of the computer researching for answers. Those whose heart literally aches while they hold on to their loved one as they want to quit. The ones who fought for the answers they desperately needed, only to be left with far more questions. I am looking forward to laughing with you, crying with you, leaning on you, and learning from you. This disease has bonded us together, and we need to support and love each other.
Cheers to this reality. My reality. Our perfect reality. Our life.