Monday, August 7, 2023

Monday, August 7, 2023

Tonight's picture was taken on August 8, 2009. Just three days after we learned that Mattie's cancer had metastasized throughout his body. That day, we bought Mattie a big surprise. Something that he always wanted, but we never even considered purchasing for him pre-cancer. Mainly because we thought it was too expensive and he would lose interest in it! It was a big ride-on vehicle, basically a battery powered car! Mattie always had a fascination with anything that had a wheel! Any case, in this photo, you see Peter wheeling Mattie out to our patio. The big box with the vehicle was awaiting him, as this was his last wish, which we were determined to grant. I will show you the follow up photo to this scene tomorrow on the blog. 

Quote of the day: Experienced and recent caregiving daughters, respectively, showed an increase over time in depressive symptomatology and long-term depression. ~ Jamila Bookwala

I had the opportunity to talk to a fellow caregiver today. It is amazing how we talk a language that we immediately understand. As if we have been trained in the art of "caregiving" communication and reading between the lines. What I do know is caregiving for older adults, especially those with dementia is grueling, both physically and emotionally. Mainly because rationalization and empathy from the person with dementia toward another person are gone! The main focus becomes one's self and one's needs. It is not surprising that:

1. 80% of caregivers reported strains on their relationships
2. 25% of divorced caregivers said caregiving played a major role in their divorce

Relationship pressures from becoming a primary caregiver for an older adult come in a variety of forms, including:

• Financial pressures from medical bills, loss of income due to the time needed to provide care, or the need to help with day-to-day expenses
• The physical toll of caring for someone who needs help with daily tasks, as well as from spreading yourself too thin trying to manage other family obligations and an the older adult
• Time constraints resulting from added responsibilities
• The emotional consequences of not having enough time or energy to invest in your relationships

Do family members or people like me, for example, set out to be caregivers? My hunch is the answer is NO! Most people wouldn't willingly sign up to perform such selfless work day in and day out. Work that changes every aspect of your life and as a result sucks the freedom and control out of one's existence. NO, NO ONE willingly signs up for this! But the question is what do you do when faced with this quandary and a loved one needs help? There are always options and family members have to do what feels right for them. But what I do know is there are nearly 48 million caregivers caring for someone in the USA, and nearly one in five (19%) are providing unpaid care to an adult with health or functional needs. More Americans (24%) are caring for more than one person. So though my issues may seem unique, they are quite common, and yet the way I look at this is I have already provided the most horrific kind of caregiving. I provided care to a child with cancer, and then watched Mattie die in my arms (yes I heard the machine flat line, only after we had to put Mattie into a coma with propofol). 

I could ask why is this happening to me yet again, and can my life sustain yet another round of intense caregiving? The verdict is still out. But what I do know is from Mattie's care, I learned that I have to take it one day at a time. If I evaluate the full picture, it truly is overwhelming, depressing, and not sustainable.