My Alternate World

I was a part time caregiver for my dad. He had dementia. My siblings and I took turns on the weekends caring for him, and during the week we had help from a wonderful agency. It was always his wish to stay in his home. We were very fortunate to make that happen for him.

On many Friday nights I would leave the real world, and enter into an alternate world. I called it Dave’s World! When I walked in the house, time seemed to stop. There is no clock to watch, or to even worry about what time of day it is. It doesn’t matter what time the clock would say, because you are going to do whatever needed to be done at any time. There was no schedule.

I’m talking about being at my dad's house. Most days he didn't know who I was. I believe he knew I was someone who loved him, but not that I was his daughter. We would sleep in short increments, an hour or two at a time. Then he would be up pacing or walking around the house, or just sitting and waiting saying “I want to go home.” (This had been his home for over 50 years). My siblings and I tried different tactics with him, distractions, eating, or drinking something, taking a walk, or going for a drive. Sometimes they worked, and sometimes they didn’t! We tried to keep him comfortable and happy. We wanted to ease his pain and frustration, even though we know we couldn’t

I have read a few articles about Alzheimer’s and Dementia. One thing I learned is to never tell them a loved one has died. I learned this lesson the hard way! Late one night my dad keeps saying he wants to go home. He says he needs to find his wife (my mom). I told him she was in heaven watching over us. This was a big mistake. He began to cry. He was inconsolable. We sat on the porch swing, and cried together. Eventually he calmed down. A little while later he said “I want to go home!” The reality is he didn’t remember the conversation we had a few hours ago. We talk about things in general terms. We never ask if he remembers someone or something.

So when I entered Dave’s World I had no expectations, nor did I worry about a schedule. We ate when he was hungry, slept when he was tired, and talked when he felt like it. We listened to a lot of music. He loved the Big Bands music, Tommy Dorsey, Glen Miller, and many others. He tapped his toes, drummed his fingers, smiling the whole time. Many times he would sing along.

I didn’t like the situation. I knew he would never be his old self again. It wasn’t perfect, but it worked for us.

I wrote him a letter shortly before he passed. It goes like this...

Dear Dad,

Please know that I will always love you no matter how difficult life becomes.

It's no one's fault, it's just a mystery of life.

I will remember the good times, and how well you took care of me.

I will do the best I can in taking care of you. I know that I am supposed to stay strong, but it's hard because I feel so sad.

I know you are lost and in a world that I don't understand. I know you feel scared, and I will be there to hold your hand.

I will try not to lose my patience and if I do... know that I will feel so ashamed. Please forgive me if this happens, and know that I will always love you.

I will keep a smile on my face, and happiness in my heart when I am with you. I know that you are still you deep inside.

Your loving daughter

You never know what the future holds! Live your life with no regrets... only experiences you learn from! Say you love someone every day!!