Tonight's picture was taken in July of 2003. Mattie was a year old. It was his first trip to the Outer Banks of North Carolina. It was around July 4, and Mattie had his red, white, and blues on! We paused in the shade to take this photo, but right near us with Hatteras Lighthouse. I am a lighthouse aficionado, and I wanted to introduce Mattie early on to these great structures.
Quote of the day: Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another’. ~ Peggy Speers
Tonight's quote comes in many different forms and phrases. It is one of those platitudes that I despise. As if you need to remind a caregiver to take care of one's self! Given my personal experience with caregiving for both a child with cancer and older adults with dementia as well as my professional knowledge and research with caregivers..... I have to say that caregivers KNOW quite well that we need to take care of ourselves. We can feel the toll our daily grind takes on us physically and emotionally. However, the problem with all of this is what we do is crucial to the survival of those around us. Therefore, taking a break in some cases is just not reasonable or possible. As I say there are only so many hours in the day.
All I know is balancing the care for my mom and dad together absorbs my every waking moment. So much so that it is hard for me to have a conversation with Peter, I rarely walk Sunny anymore, and it is close to impossible to get Foundation work done. On top of which I am chronically exhausted. If all of this isn't bad enough, my mom keeps saying that they should just go to a nursing home because they are a 'burden' to me.
Keep in mind that I never use the term BURDEN. It is not a term I care for at all. When my dad hears my mom mention a nursing home, he gets very upset and at times tells her to just "shut up." The issue with working with people who have dementia is they really no longer have insights into their own situation, much less anyone else's. However, dementia makes you turn deeply inward and therefore one's needs are the only ones that seem to matter.
Should my parents be in a nursing home? It is a hard question to answer. Certainly they both would qualify and need around the clock care and support. With that said, I am abundantly aware that such a dramatic change in living environment, would cause significant decline in both of them. If I am willing to accept that this would be the beginning of the end, then I could move forward with such a decision. But I am not there yet.
What drives me crazy however is when my mom says that I view them as a burden. She will say this whenever I mention that I want time to myself, that I want to sleep later, or perhaps see a friend. None of these are doable and my expression and desire for freedom is met with the discussion of burden. It is a wicked spiral that at times makes me upset, frustrated, and angry. I remind my mom that what I am doing, not many other adult children would do. I have given up living in order to manage their daily needs.
I am not doing light caregiving. I am managing showers, dressing, toileting, cooking, cleaning, laundry, doctor appointments, therapy sessions, driving from place to place, bills, and the list goes on. Given my dad's issues with irritable bowel syndrome, I am constantly cleaning him and the bathrooms. Literally I could spend the day doing this and I have learned to eat quickly (which I do not like doing) because no meal is complete without a bathroom emergency.
Peter and I are trying desperately to get Sunny to take his antibiotics. But he is onto us! He knows that treats are typically filled with DRUGS, which make him sick. So he is holding out and is opting for NOT eating altogether. The vet's assistant says we need to open Sunny's mouth and pop the pills down his throat. I DON'T think so! As a result I am trying to sneak his pills in everything from cold cuts, sausages, pill pockets, and even cheese. Nothing is working. He will eat and spit out the pills. Clever fellow, who unfortunately doesn't like peanut butter, because that stuff covers the smell and taste of everything!
Early on after we adopted Sunny, we switched him off of dog food. I found that the kibble made Sunny gain a ton of weight. Because his vet was constantly on my case, I decided to STOP all dog food and cook Sunny's food myself. What did Sunny used to eat? Ground chicken, ground beef, ground pork, steamed string beans, and sweet potato. On the weekends, I would make him scrambled eggs with ham and the list goes on. Now though whatever I cook for Sunny he doesn't want it. My boy used to love to eat, and now not unlike Mattie, we are jumping hoops to get him to eat. Eat ANYTHING!
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