I Can't Do This
I don’t know how many times I have said this, both silently and out loud. I am not a quitter, but there are moments where I just don’t think I can continue the course we are on and survive with my sanity intact.
Raising children is hard. I don’t think that is a revelation to anyone. There have been books and movies and much discussion on the perils of living through the infant, sleepless years on up through the teen chaotic years and beyond. I believe it is the consensus of the general parent population that no matter how many books you read or how many other parents you talk to, there is no magic guide to help steer you on the correct and easy path of parenthood.
It is the same with caring for a loved one with dementia. There are just as many factors to consider and deal with. No two patients are the same. Situations aren’t the same. Family dynamics differ. Personalities change. Dementias are different, and each brain they touch are changed in different patterns and there is no standard projection of decline. Now imagine trying to navigate both the childhood craziness and the dementia caregiver craziness at the same time….enough to put someone in the looney bin!
I find many people care and want to help. They offer, not knowing what to do, but knowing they want to do something. Most of the time I am grateful, but I just don’t even know where to begin to tell them how they can help. There are those that have been down this path and they know what is coming and it is hard for them to bear witness to what our family must endure. Sometimes it is just too close to home for them. Some see us and wonder how bad is it really? So he is a little forgetful…he looks fine when they see him walking the dog or sitting at a ball game; they can’t imagine the frustrations and the battles that are waged in our home. They can’t possibly see the lack of intimacy and the communication that is non-existent. They can’t see the crumbling of hearts as Jim’s children silently stand by as he forgets their names or that it is their birthday or can’t figure out how to eat a sandwich. They can’t understand how much it hurts to see him with his pajamas on inside out and backwards. How could they feel the frustrations of finding something you have been searching for at length in a place you would have never guessed? After all, you eventually found it, right? Just let it go and be happy he is still here with you….
Right? Right? Right?
No! It isn’t that easy when you are living this nightmare that has no ending and doesn’t have a trajectory or map to let you know where you are going and how you will get there. And how long the journey will be. Or what is just around the next corner.
This is our family. This is now our story. This is a childhood immersed in Alzheimer’s Disease and learning to become the parent of your father. Learning to ignore and learning to let go. Learning to accept our fate, his fate, their fate. Learning it is ok to be mad or embarrassed or wanting to escape. It is ok to need a good cry.
No family is “normal” and just because your father is sick doesn’t make our family any less “normal” than all of your friends. But you still need to help with the trash and the laundry and the yard work. And you need to understand when “your” cookies are no longer in the cabinet, and “your” socks can’t be found, there is nothing to do except try to think ahead next time and put them somewhere you will know where they are and won’t get misplaced or thrown out. Our family is now constantly trying to think one step ahead. And yet, no matter how proficient we try to become, we are usually two paces behind.
No, there is no magic solution and there is no easy road to take. It is ok to want to scream.
So I must replace those negative words with: I CAN DO THIS. I have to. I don’t have a choice. I will eventually be able to look back and my goal is to know I did the best I could.
We are all succumbing to this disease, the patient, the caregiver, the care providers….we all know the heartaches and the worries and the isolations….and we will have to forgive those who can’t possibly understand. Remember, we had no clue until we started living submerged with the burdens of care. Be kind; hope they never have to find out.