Tonight's picture was taken in July of 2008, literally days before Mattie was diagnosed with cancer. We took him to Roosevelt Island to do our typical walk about. If you notice closely, Mattie found some sticks along the way and were carrying them with us. I will never forget this particular walk, because what did we see? Wild turkey walking along the path. It was a first! In fact it was the first and very last time we ever saw wild turkey on the Island. Of course, weeks later, I interpreted that sighting as an omen to come..... Mattie having cancer. To this day, I still don't like seeing wild turkey, as it reminds me of this moment in time.
Quote of the day: No matter who you are, what you've accomplished, what your financial situation is—when you're dealing with a parent with Alzheimer's, you yourself feel helpless. The parent can't work, can't live alone, and is totally dependent, like a toddler. As the disease unfolds, you don't know what to expect. ~ Maria Shriver
There is a great deal of truth to tonight's quote. As caring for people with dementia is a lot like caring for children. I always say that Mattie was my best teacher and I am NOT kidding. When you care for children you learn the art of balancing multiple tasks at one time, and coordinating schedules, driving around doing errands and the list goes on. I feel fortunate to have had these Mattie experiences because without them I am NOT sure I would be able to balance the care of my parents effectively now. I say that because on any given day, I am juggling many, many things. Thankfully I have had years to work on the skills needed to do what I am doing now.
Last night I had the opportunity to go out without my parents. I left them alone for three hours and when I got home, I found my dad totally asleep on his recliner and my mom worrying about how to get my dad upstairs. Fortunately I reminded her NOT to take him upstairs unless I was home, and she did listen. As she is in no sort of shape to be able to support and help him. On Saturday, I am going out with a group of friends to celebrate my birthday. Naturally I am honored to even have any friends right now, mainly because I am in no shape at this point to be a friend. I am thankful so many friends understand this, and yet I always have mixed feelings going out in groups. It isn't a phobia, as much as it is a simple fear.
Since Mattie was diagnosed, died, and now that I am a full time caregiver of my parents, I have and continue to view myself as DIFFERENT. I am not the norm and not that I don't know this reality, I do, but it becomes even more evident when in a group of women. Women who are productive and get things accomplished. Yet my greatest accomplishment some days is I have contained bowel movements! Not the best conversation to have at a luncheon. But yet this is my life and though it may appear that I have chosen this (so I should just suck it up and deal with it), I did not expect my parents to both have dementia and physical issues at the same time. Caregiving for one is hard, for two, it becomes a big WOW!
The main issue that I find people don't understand about my situation is why don't I have caregivers?! As they feel this would make everything so much easier for me. I believe that in theory caregivers help, but the reality doesn't always work out this way (remember I have insights from caring for my maternal grandmother who had a stroke and from my clinical hours helping family caregivers). It just adds another layer and complexity to the mix. Right now my parents are not stable. Or at least my dad is somewhat, but my mom's situation is tenuous at best and I really need answers from the neurologist this week on how to help her moving forward. Therefore, until I have a plan, I am not relinquishing any sort of control at home. From an outsider's standpoint, I know people view me as head strong and controlling. I don't care to hear this, but on the other hand I know my situation and the issues I am facing better than anyone. So when my mind is made up, no one is going to change it.
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