Obviously there have been major changes in my life since Maggie passed away 5 months ago. I am still adjusting to all of them and suspect I will be in one manner or another for the rest of my life. After caring for someone 24/7 for 20 years, it’s difficult to simply switch gears. Caring for Maggie and/or managing her care is what I did, it’s who I was. Now I have to define myself differently and figure out where I fit in a world without her. It’s difficult and I am still floating down the river waiting to see where it takes me. Sooner or later I’m going to have to start kicking toward some shore, but I haven't figured out where to land.
The big changes are easier to keep at Bay because people understand those. Everyone gets that losing a child is a life altering event. Perhaps what people don’t understand are the thousands of little changes that we face every day. These are like painful little reminders of the loss and the big changes. The little ones are more personal - not in a private kind of way, but more individual. I might be the only one that notices them. Steve, Eddie and Tim undoubtedly have to deal with these too, but the little things are not always the same for all of us. If we are together and something hits us there are small smiles – and maybe a few tears - exchanged. But generally moments are experienced when we are alone and they are very personal to each individual. A song on the radio can be paralyzing, coming across one of her scarves in a bag is like finding a treasure (and I have 100 of them.)
This weekend it was the soap in the bathroom. I washed my hands in there and had to really pump the soap dispenser to get any soap on my hand. I thought “ok, time for a new soap in here.” Mundane and uneventful. And then I stopped. That is the first time I’ve had to change the soap bottle in Maggie’s bathroom since she passed away. I used to refill it at least every other day and sometimes daily.
I bought those giant soap refill bottles at Costco - like 6 or 8 at a time. That would last me about a month to six weeks. Between all the nurses’ hand washing, and equipment cleaning and Maggie’s bed baths, that tiny sink in Maggie’s bathroom was going nonstop 24 hours a day and the soap would just disappear.
Now that bathroom is used much less. Much less. I changed that soap on February 15, the day she passed away and didn’t have to change it again until July 11. That’s about 150 days, or 75-90 refills I haven’t made.
Believe me I never minded using all that soap. Cleanliness was a key to keeping Maggie healthy. One of the nurses was a little unclear on this. No matter how many times I begged her not to, she often filled the soap dispenser with water in an attempt to stretch out the usable soap. That was aggravating; I would get a squirtful of bubbly water and have to stop mid hand washing to fill the dispenser with actual soap.
That aggravation is gone now. The nurses are gone, the tubes are gone and Maggie is gone.
A small change in the amount of soap we use triggered that entire line of thought, all as I stood there drying my hands.
It’s no wonder the big changes are taking longer. The little changes can be exhausting.
I am grateful that you're writing this down, taking notes, letting us know. This makes so much sense to me -- I think the twenty years of caregiving also gave you the ability -- a sort of laser eye -- on how to be mindful. I like to think, or hope, that this sort of mindfulness will carry you through. It's all about the soap and it isn't the soap at all.
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My sincere condolences. The loss is staggering. I also want to thank you for your comments on my own post about grief over the loss of my boyfriend. Yes, those little things just keep coming. I'm only at 7 weeks. Knowing you have gotten up every day for 5 months gives me strength.
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