Then that holiday season my Dad was diagnosed with stage 4 Non-Hodgkin's Lymphoma. Crisis had set in, friends starting calling concerned about Dad, but also shedding some light on their concerns with Mom. I was traveling back and forth as often as I could to help out. I remember one time when Dad was in the hospital, Mom got a message that his insurance had been cancelled. He was in the hospital, very sick receiving some very expensive treatment and Mom panicked. She was at a loss as to what to do. Thankfully I was there so I could step in. I started making phones calls and got the situation cleared up. I think much of my Mom's panic and inability to act was stress and the magnitude of what they were faced with. I could see myself reacting the same way if I were in her shoes. But looking back, I think it was a very real sign of her inability to make decisions… something very common in someone with Alzheimer's. She worked her whole career in the medical field. She KNEW her way around hospitals, insurance and medical jargon. She was at a loss. It was during this time that she was officially diagnosed.
Now almost five years later she is struggling. She has just about ceased communicating. At first it was because she seemed to struggled to find her words. Now it seems that she does not understand you. That may not be accurate, but that is what it feels like and looks like when you talk to her. Her eyes are often blank or distant. She does not know her name or her grand kid's names. On her last visit here, she looked right at me and asked "where is Jenny?" She needs assistance getting dressed, bathing and cutting up her food most times.
She is fortunate that she is still able to be at home. My Dad is her 24/7 caregiver. It is and has been an incredible burden and I am just thankful that Dad finally is getting some assistance with her care. Mom is now going to adult daycare a few mornings a week. While she is not happy about it right now (very upset, crying and scared), I believe over time she will get comfortable with the idea and feel safe (she does not feel safe unless she is right with my Dad). And, more importantly at this point, it will give my Dad a much needed break. He will be able to rest, visit friends… or hit a bucket of balls.
I dread the next steps my Dad will have to take. Having to face the decisions he has ahead are so difficult. His life partner who has been with him through life to help make those hard decisions is gone. He is left alone to decide. What is best? When is it time? I can not imagine the struggle.
To be in another state is both a blessing and a big burden. The blessing is that I am able to remove myself from the realities of what is happening to my Mom most of the time. It hits me in waves… like the time a few months ago, I called when she was having a really rough night. Or when Dad said he was actually going through with the daycare thing. I was in tears. That is my Mom. But I am not around to see the day to day struggles, and that is a blessing.
The burden is not being able to help… even if it would be just bringing them meals a few times a week so Dad does not have to navigate the kitchen. The burden is not being able to visit Mom face to face when she was more with it. That time is gone. I think of things to ask, but the answers are lost inside her. Like the other day when my doctor asked what type of cancer her Dad died from. I think I remember, but if no one in my family can remember for sure, that information is gone forever.
It has been an interesting journey over the last five or so years. Sad, aggravating, funny and scary all at the same time. Scary because I see my future. My Mom, her sister and their Mom… my grandmother… all have/had Alzheimer's. I think about not remembering my kids and tear up. I think of my husband and all the funny little memories that only he and I share that will be gone. It is a horrible disease. And the thing about it - there is not a damn thing I can do to change my fate. If heart disease ran in our family, I could at least change my diet, take cholesterol medicine, etc… at least do something to know I did everything to help my fate. But beside the typical advice to exercise and eat well and take fish oil, there is nothing. That is scary.
So as my Mom comes full circle… needing help dressing, going to daycare with a snack schedule and a change of clothes… I will do my best to remember what is important in the circle of life. A place to be safe and loved. A place that memories are made not by things or busyness, but with time and engagement. I will hug my kids harder, turn off the TV, computer and unplug the darn iPhone more. I will spend time with Chief. I will make changes to our life so whatever time I have left to remember, whether it is 10 years, 25 or 50, I will have made the most of it. My family will be able to say well done.
Well done, Mom. I love you.