Many folks interpret courage as being fearless like the Lion, King of the Jungle, and all it surveys. The lion is not courageous. It is born to be a top predator. Other animals are born to fear the lion. It is simply doing what it was created to do and existing as it was born to exist ~ on top!
Courage is not always about standing up and roaring in the face of life issues. Courage is the ability to say, “This terrifies me but I will not run!” Sometimes, courage is displayed through a whisper. A soft whisper, couched in a strength they may not know they even possess. Sometimes, women in particular, will stand and roar to prove they are strong. They may feel inadequate to compete, compared to their male counterparts, so they don this, ‘I’m better than you, stronger than you, and will do it better than you‘ attitude. And they may very well be able to do so. But I find this an unattractive quality for me, personally. It would never look good on me. I enjoy the softer side of the female within. Not all women do and I certainly understand. I also have had, and enjoyed, my own strengths, talents, but I love being able to lean on my husband. I turn to him for his opinion in everything. I consult with him on scriptures, prayer, budgets, menus, clothing, home decor, etc. Most of the time, he tells me to do whatever I like. He trusts my opinion and I trust his. This was not easy in the beginning as I had lived on my own and did what I wanted, when I wanted. But when I became ONE with my husband? It needed to change that ‘my way‘ mentality to ‘our way‘. It has been our way for over forty-two years.
And now…. While I am still married and head over heels in love with my husband? I am alone. Alzheimer’s is an isolating disease. No one tells you this fact. Mostly because there is basically nothing out there for the Alzheimer’s patient. Oh there’s plenty of info on the symptoms, what it does to your brain, what docs ‘cannot’ do for you yet, and then comes this massive leap straight to caregivers. I live every day, giving more and more details of my daily life into the hands of someone else. At least once or twice a week, I discover something else I can no longer do. But there is nowhere to turn, to find others like me, who can say, ‘yes, that happened to me a couple of weeks ago‘, or at least I can’t find them.
Even facebook groups which state they are formed for me, the Early-onset Alzheimer’s patient, end up being mostly caregivers posting. It is horribly depressing with many of them being hurt and bitter over being caregivers to a parent or spouse. I certainly appreciate they have the hardest job in the world but I am not ready to face that part of what’s ahead, yet. It feels as though I went from being a vital part of humanity to well, nothing. I instantly went from top RBI hitter in the game to just being third base. From greatest outfielder to just being the outfield. I told my son I went from contributing to being the millstone around the necks of those I love the most.
All the things I used to do? Gone. Singing. Teaching in a Christian School. Actively Homeschooling my children without use of computers. Teaching all ages in Sunday School. Teaching Young Married seminars. Teaching women how to be strong while embracing their femininity. Formulating new recipes. Sewing. Crocheting. Redesigning rooms in our home. Novelist of two books. Full-time Grammy. Writing poetry. And always FIGHTING for a cause! Now, retired from everything by force of Alzheimer’s. One thing sort of remains. That one thing is Homeschooling my grandson, Tristan. The sort of part is because I am just supervising his time. When he actually need help academically now, I must defer to others.
One recent incident stands tall still in my short-term memory. Last weekend, my hubs went to Ohio to spend a day with his father whose time on this earth is drawing to a close. Tim has traveled with his jobs over the years, and I dealt with those times. Neither of us sleeps much when we are apart, but I always filled my time doing things I enjoyed. Shopping, bubble baths, shopping, reading, writing, shopping, cooking, etc. I managed to fill the days with activity while waiting on his next phone call. This time was a far cry from those days. I was virtually paralyzed with fear. His one day away was extended to nearly four days due to flight delays and cancellations, no fault of his. I kept asking the Lord to at least give him one moment with his father that he could treasure so it would make this trip worth the pain and anxiety I suffered. God did honor that request exceptionally well, but I can still taste the fear when I think about those days. I cried for hours at a time. At one point, I realized my 14 year old grandson was kneeling beside me with his arm around me and his head on my shoulder. He should never have had to do that for me. I am supposed to be his comfort, his strength. I did not sleep the entire time Tim was gone.
Alzheimer’s changes everything. I was afraid I would forget something important about Tim while we were apart. And I did. Every night when he comes in from work, I have a cold drink prepared for him. I know what he likes. He always calls when he is leaving work to let me know he’s on his way. I wait about fifteen minutes, and then prepare his beverage. When he got back home after that weekend, I could not and cannot remember if he prefers crushed ice or cubes. This was something I knew. I know that I knew, but can no longer know what I knew. I still make his favorite drink after work but rotate between ice styles in hopes he will not notice.
There is nowhere to turn to find out if my new normal is new or normal to others, who are in my space in the disease, who have recently experienced this, or to let those behind me know what is coming. These changes that snatch away in a heartbeat who you are, who you have been and whom you will no longer see and know. I am forever changed, one day at a time. One lost memory at a time. It is a prison I will never escape.
In the still of the night, I promise myself, I will do better tomorrow. But it’s a losing game. No one will ever bet on me winning. The odds are getting higher every day as now one of the biggest pharma company has pulled completely out of research for a cure or a medicine that will work for me. They have decided it is hopeless. A cure is most likely never going to happen in my lifetime.
So, it comes down to wondering if I have anything left at all to contribute. Is there anyone like me who has found something we can still do, with the brain cells we still have left? Where are the people like me? Surely, I am not as alone as I feel. My family loves me and offers support constantly, but I know they really don’t understand. I see it in their eyes when I do something I shouldn’t do. I hear it in their voice when they try to respond to my lack of understanding or when I have forgotten something I should have remembered. I see it in their actions when they fix something I messed up. I tell them I’m sorry and they tell me to stop apologizing. But, it’s all I have ~ I’m sorry. I love them with all my heart and hate what this is doing to all of us.
Courage. Courage is trying to do something when the odds are stacked against you. Courage is not about doing something when the odds are in your favor. I need to find the courage to do something, anything, to be helpful, to contribute. So far? Nothing. I need people like me and I can’t find them. What do they do? Who do they talk to? Or have they just given up since their diagnosis? Are they just the outfield instead of playing the game?
God, please give me courage to find something to do that is good and productive. I feel so lost and alone here in this world.