Just Holding a Floating Balloon

July 5, 2023

It is the morning after celebrating our country's freedom; a yearly reminder that our predecessors fought and won our nation's freedom to govern themselves as an independent country. A country that we love and appreciate. It is a yearly reminder, complete with fireworks and patriotic showings, that we are free.

As much as I want to sit back and reflect on how "free" I am as a citizen in my country, which I am very thankful for, I am also reminded that being a caregiver of this caliber feels anything but free. I am unable to do whatever I want, while being reminded that I should be able to have that ability.

I remember with my dad that I felt constrained and tied down. He had so many needs and a life of his own that needed cared for that it took most of my time. It took four years before everything calmed down enough that we, my husband and I, found a groove that worked for all of us. My dad was happy, had no more major health issues that needed addressed in a pressed amount of time, I was managing his medical needs and finances just fine, and his Alzheimer's was seemingly stable for the time-being. Then March 2020 started the snowball effect that we know of as the Covid-19 pandemic. I literally was able to get my dad his small birthday cake and small gift into the lobby of his assisted living facility, watched the nurse wipe the outside container and gift down with alcohol wipes, and then lockdown started immediately at 8am.

Now, life is much different with my dad's passing. No longer being a caregiver for my dad, after so long, had my mind feeling relieved, but my body refused to believe that I would not be tense or on call at all hours. It took a long time to start to feel back to normal, but my relative had other plans. I remember driving down to see my loved one and telling them about my dad passing away. I was expecting a hug or some type of comfort or consoling. Instead, they got excited and their eyes lit up as they said "Now you can take care of me!"

I still feel less free, but it is primarily due to my loved one's needs. I feel as though it is impossible, at this point in my life, to feel as free as I would if I was not responsible for another older adult family member's life.

While, for now, they are able to live as independently as possible, which is wonderful, we still are obligated to take care of their house and lawn, in addition to any of their needs that they feel unable to accomplish on their own. I am dreading the inevitable declines that will tether me once more. The ones I know my fellow caregivers-in-arms feel.

When they purchased this house near us, they also purchased some of the items from the previous owners, including some patio furniture. Out of the blue, now they are believing that they bought an outdoor umbrella from them. This is a point of fixation, of many fixations, that do not exist in reality.

As someone who is caring for a family member with health issues, it is always a delicate balance to help them maintain their independence while trying to work around their fixations. It is hard and a reminder that you are bound to these delusions that these loved ones believe to be true. It is not as easy as telling someone that they are mistaken or did not actually do what they thought they had done.

Another example of this is still occurring. My loved one is 100% convinced that they brought a piece of paper to our house and showed it to us, along with a birthday card envelope for our son's birthday. At the time, my husband and I were preparing for our son's birthday party, and my loved one literally held up the card, only the card, encased in a golden yellow envelope before putting it down on our counter. I later moved it to the table with the other birthday gifts.

During the party, my loved one became convinced that they also brought a piece of paper and began looking through all of our papers to find it. They were also convinced that I moved it. To this day, whenever over at our house, they look through our papers and anywhere else, to find that one piece of paper. It is now over two months of this. And now their story is changing to include that "the aunt," whose name that cannot remembered, had been reading the paper on our couch. However, all of the elder family members were sitting at our dining room table for more supportive seating and eating.

When we asked about the piece of paper's contents, my loved one said "It has nutrition written on the top." Alright, so it is a piece of paper about nutrition. We have literally never seen that at our house, but they are fixated.

Each time my loved one begins a new fixation, which have accumulated into a small collection now, each one feels like a string tied to a balloon that you have to hold because the idea of letting go and watching the balloon fly away is too much for the person for whom you are caring. They need this fixation for some control in their life, regardless of how controlled you feel and have to maintain your composure. There is no way to tell my loved one that we do not have the "nutrition" paper; we just say we have not seen it, which is true, and allow them to search our house.

And so it goes with the several other fixations: a quiet binding that began with you holding what feels like a strings connected to floating balloons that you are required to hold. At the end, you are tired beyond tired and want to let them all go, but you hold on throughout all the not-quite-feeling-free feelings for them, because you know this will not last forever, just until the stage where they no longer care or remember.

But for this week, I try to push those thoughts away and keep them at bay until they are, again, reality. Freedom is not free, in many differing ways for many different people. I am grateful to live in a country that allows me the freedoms I do have; at the same time, I understand what it took to be free. And I appreciate it all. The fireworks are just a lovely tribute.