When Jim was first showing signs that something just wasn’t “right” with him, when he was driving me crazy and our marriage was feeling strained, when I knew deep inside that Jim was changing but I just couldn’t put my finger on exactly what was happening….when our life was the best and the most normal it was ever going to be…..we went to marriage counseling. We were both committed to working on our marriage, finding out what was really changing between us and fighting to keep our bond strong and intact. Little did we know the fight wasn’t between us but we would both be going to battle.
Younger Onset Alzheimer’s isn’t as common as other dementias and certainly not as common as Alzheimer’s Disease, yet it is so damaging and overwhelming. In our case, Jim was still working. We had young children at home. We had plans and a future spread out before us.
Even when we were trying to get a diagnosis, we were still not wrapping our heads around what was in store for us. Ticking off other calamities; tumor, HIV, sleep apnea, syphilis, depression, there were numerous tests, numerous doctors visits, counseling sessions filled with frustrations and anxiety. All while we moved closer and closer to learning that Jim was showing signs of the earliest stages of Younger Onset Alzheimer’s Disease. He was not forgetting anything. He could recall names, how to get places and what he was supposed to be doing. He wasn’t misplacing keys or wallets. He was still able to do everything, yet he was “off”. Comments weren’t making sense and he surely wasn’t the man I married and knew so well.
But Jim looked healthy and was handsome and fit and very active. His primary care physician initially assumed it was stress or depression. A form of dementia, even given his family history, seemed like a crazy idea. Yet, test after test came back normal. How awful must a disease be when you are actually hoping the test results for a tumor or a stroke come back positive because the alternative is far worse?
Jim was in his prime. He was working, he was engaging as a father and a coach and a PTA Vice-president. There was no way he could have something that only old people get. And so the education began. Learning doctors don’t want to give you a diagnosis when they can’t give you a treatment plan. Understanding people don’t mean to be cruel or rude when they tell you after speaking with Jim for 5 minutes that he seems and looks fine to them (sometimes I would actually spout back that they didn’t live with him). Breaking the news to our children that Daddy has a disease that killed his Mom, his brother and yes, eventually it would take him away as well. Growing impatient with Jim, impatient with myself, and most of all, impatient with our health system and our government which doesn’t support families dealing with anything that doesn’t fit into a normal box. Life became frustrating and hard and sacred. Yes. Sacred. Time became a bargaining chip. Yet, I was unable to fully appreciate and understand the precious gifts I received each day from Jim, from life and from finally understanding what was happening. I was too stressed and scared and overwhelmed with decisions to be made, dinners to be fixed, schedules to keep track of and trying to stay one step ahead of a disease that didn’t follow a path I could map out.
We began working towards getting our life in order, as much as one can, and focusing on the kids, Jim’s care and spending quality time together. Yet, I couldn’t fully appreciate the severity of what was coming our way. I had never been around anyone with dementia and like most people, I thought it was mainly someone misplacing items and forgetting names. How bad could it be?
All too soon, I began to understand that it was so much more. It was lawnmowers taken apart and extension cords cut. It was inside out clothes and endless meals. It was being responsible for all decisions for our family, including taking away Jim’s independence and his driver’s license. It was watching him lose weight while he ate multiple helpings multiple times a day. It was being a front row witness to his loss of dexterity, multi-tasking and decision making skills. It was watching his beautiful handwriting become shaky and unreadable. It was tears and late night sessions begging for answers and for help and wondering how we were going to survive. It was planning for a future without Jim while trying to take in the moments we still had together.
Younger Onset is still something most people aren’t aware exists. Even some physicians we had appointments with along the way made comments (in front of Jim) about how young he was and that he seemed too young to have Alzheimer’s Disease. I kid you not, DOCTORS telling us this. Not just one, but several.
There is still a stigma with a disease of the brain. Something you can’t see physically is not equal to something you can. It isn’t treated the same with health insurance and it certainly isn’t treated the same in society.
In the end, Jim was an amazing patient. He trusted me and my decisions and for that I will be forever grateful to him. He taught me a love unlike any other.
I learned patience and forgiveness, especially with myself. I was given the chance to show him that I would indeed never leave him, and I know he was comforted to know this.
Our journeys can take numerous paths as we travel through life, and sometimes those paths have many potholes, bumps and curves. Sometimes, we can relax a little and the path is smooth. Either way, no matter what the route, it is important that we all show compassion and understanding and love for each other. For we do not know what hazard is just ahead in our own lanes and it would do us each good to be humble and supportive for anyone facing uncertainties and in need of patience and understanding. The difference we can all make doesn’t cost a dime. It is showing up and being there for others. It is sharing stories so there comes an understanding which will lead to empathy. It is changing minds and hearts one smile, one gesture and one moment at a time.