Dementia Caregiver’s Choice

May 6, 2010 by Holly

I like routines-predictable and comfortable. Since my husband, Dave, was diagnosed with Frontotemporal dementia 3 ½ years ago, my life has been anything but routine. The brain is our most complex organ, making it difficult for scientists to predict the exact progression of brain diseases, like Alzheimer’s & related dementias.

It took 2 years to realize that dementia is out of my control. The only thing I can control is how I am living with it. I have a choice. I can continue being sad and angry that life is turning out differently than I expected, or I can learn to accept and love life as it is.

Last week I went to a business course by Fabienne Fredrickson and she spoke about the Panic Point— better known as the ‘breakdown before the breakthrough’. These are periods in life when it feels like everything is going wrong–like you can’t handle one more thing. It may begin with a bad cold, eye infections, frequent arguing, blaming others irrationally for what is happening, or maybe technology breaking down around you.

This week happens to be one of my Panic Point phases. The tipping point came when our washing machine decided to quit in the middle of the rinse cycle. The buzzer on the machine is ringing, telling me that the intake valve is blocked. What is this all about? I pull out the manual which shows me how to flush the valves, scoop out the debris blocking the propeller, and clean out the filters. All I want to do is to sit on the floor and cry. I am begging for someone to PLEASE take over my job as caretaker of this house.

After my initial hissy fit, I realize I have a choice (once again). Either work through this problem rationally, or run away in anger and frustration. I choose persistence. I follow what the manual tells me to do and I am feeling pretty good about my troubleshooting abilities. But it is short-lived. After putting everything back together, not only doesn’t the machine work, but I can’t open the door to retrieve the wet clothes inside. Oh boy! I have had enough. I cry some more, feeling very sorry for myself and really fed up with these tests from the universe.

Then in a split second, I think of Dave. He is upstairs eating his toast, watching the weather reports and working on his jigsaw puzzle. What a simple life he seems to be leading. Would I change my situation and my brain for his? No. Does he complain about his headaches and his progressive physical/mental challenges? No. This instantly turns my attitude around. I know that if Dave could help me, he would. He used to be a handy man of the house and never complained when he had to fix a stove, a furnace or many of the other electrical/plumbing issues. I am discovering how much he actually did around the house-much more than I gave him credit for.

By the time I come upstairs, my pity party is over but I am still feeling heaviness inside. So I do what I have done for years to relieve my stress…I walk outside, surrounded by nature, and just keep moving. I walk until I feel lighter; until the tight band around my neck and shoulders loosens. After a while I begin noticing the bright green color of the spring leaves on the dogwood bushes lining the creek. I see and hear the small warblers singing and playing tag in the dense underbrush. It is amazing how quickly I feel grateful to be alive, and grateful for the reminders that these panic points are temporary.

Life isn’t easy, and neither is living with dementia. Every time I succeed in pushing through these panic barriers, there is more appreciation for the peacefulness and power I feel afterwards. It also reminds me how each experience builds on the previous ones which is preparing me to handle whatever the future holds for Dave and me.