By Rick Phelps
“I hate my life.” This is something that you would expect a 13-year-old to say. Or perhaps someone who is going through a tough time.
You wouldn't, however, expect to hear it from someone who is 50, 60, 70, or even 80 years old. Typically, by that time in your life, you've settled down, figured out what is important to you and things are hopefully on some sort of schedule.
But you will likely hear a dementia patient speak of hating their life, resenting their circumstances. Anyone who doesn't understand this simply needs to talk to a person who has been diagnosed.
All of their future plans have changed in an instant. The first thing the Alzheimer’s Association will tell you to do is prepare. Create a plan for the patient’s care, see an elder law attorney, hold a family meeting and make plans to do the things you want to do while you still can.
But, what they don't tell you is that many of those new plans go right out the window, too. Dementia will constantly be throwing you curve balls and mucking up your intentions. Instead, I always say, “Have a plan, and then have another,” because, more often than not, Plan A will not work out.
You planned for retirement. You looked forward to your grandbabies—watching them grow, going to their school plays, taking them on vacation, and just having fun together.
You made plans for you and your spouse to take those vacations you have always talked about, whether they’re visits to far-off places or simple strolls around the neighborhood.
We all have plans, expectations, and a road map of sorts for what we will be doing in our golden years. Then comes the day when you see the word you want to say, but can't get it to come out of your mouth. Or you take a walk, where you have hundreds of times before, and you can't for the life of you remember where you are.
Names and faces cannot be remembered. Everything must be repeated to you... not because you didn't hear what was said, but because you didn't understand it. The job you have done for decades is like doing something you have never done before. The simplest of daily tasks become daily struggles.
Everything and everyone is taken from you. Sometimes for mere moments, but in the end, forever.
I wish I had a dollar for every time I ask my wife what day it is. It doesn't matter in the grand scheme of things what day it is for me, but every day of my life I have known what the date is. Until now. I haven't known what day it is for so long, so I just ask and ask. It's all I can do to try to make sense of my surroundings and have some semblance of control and awareness.
With dementia, you will lose everything. You will lose things that have been with you so long you take them for granted. But, everyone is different in how this disease affects them. Some deteriorate, you would swear, right before your very eyes, and some decline very slowly for many years.
The worst part is that no doctors, patient or caregiver knows what is coming, nor do they know if it will last. Normal is no more. Things can change in minutes. Someone who would never raise their hand to another human being now strikes out at those they love on a daily basis. They may say words you never even thought they knew. And they will do things that are completely out of character because they have a brain disease. Of this you can be certain.
Everything else is a guess. A calculated guess at times, but a guess nonetheless. I have no idea what tomorrow brings. As I sit here typing away, I have no idea what day tomorrow is or what today is, for that matter.
My only advice is to be flexible. Have a plan and then have another plan. Fighting dementia's twists and turns will only wear on you and your loved ones even more.