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Caregiving: Playing a Brand New Theatrical Role

Well, much to my surprise, I completed my first week with Lisa and Joseph without any catastrophes. Despite the fact that I have worked jobs with much longer days, jobs that are more physically and intellectually demanding, and jobs where I communicate with people all day long; I have never come home each day so exhausted. Mentally and emotionally exhausted. I lie on the couch and stare blindly at the TV, reliving moments of my day in my head, simultaneously beating myself up for failures and basking in the glory of moments of joy that I have experienced with Lisa and Joseph. Within each day I realize that I am experiencing the gamut of my emotions: ranging from sadness to joy and fear to pride and many others. I also have to be fully alert at all times. The trick here is that while being on high alert for safety reasons, I have to pretend like I am not paying attention to everything and be ready to jump in to save the day the instant vulnerability begins to loom. This brings me to the title of this week’s post, “Playing a Brand New Theatrical Role.” This week I have learned that caregivers are incredible thespians who’s acting talents often go under recognized and underappreciated.

Perhaps the most difficult role I have taken on is that of an extrovert. Anyone who is an introvert understands the challenge of having to communicate all day long. It is not just a challenge; it is both physically and mentally draining. On top of being available to talk all day, I have to present myself as upbeat and supportive. This means that even if I wake up on the wrong side of the bed (which I do about 50% of the time; wait does that mean its actually the right side of the bed?), I cannot let Lisa and Joseph know. If Lisa or Joseph insult or frustrate me, I have to smile and act like I am not taking it personally (hopefully I will eventually learn not to take it personally). When Lisa reminds me over and over again that I am “lucky” to be here all day, I have to figure out a way to tell her that I am happy to be here. Don’t get me wrong, I am happy to be here, but it does get tiring having to repeat it all day long and hoping that Lisa will eventually believe me. Speaking of repeating myself, I have to act like I am not hearing the same questions over and over and act like I find my answers just as funny and engaging every time I give them. But back to being an introvert….perhaps the hardest part about acting extroverted all day long is returning to being an introvert when I get home. I find that I don’t have the energy or capacity to engage with my partner, other than to tell him about my day. Sadly, this is making me feel lonely. So, I am spending all day long communicating with two people who I adore, come home to another person who I adore, and yet I feel lonely at the end of the day. This is something I definitely need to work on!

The other arduous role I have taken on is that of someone who is not here to help. My main role in this household is to keep Lisa and Joseph safe and entertained. This includes cooking for them, making sure they don’t fall, getting them out of bed and out of the house every day, and helping them keep their anxiety and confusion to a minimum (this all sounds suspiciously like helping to me). Here is where the acting comes in; I have to act like I am not here to help at all, rather I am here to do my laundry or do my work (writing my blog), etc. and just happen to be helpful when needed. This requires acceptance, stealth and a few white lies here and there. I am fortunate because both Lisa and Joseph have been extremely appreciative of any help I give them. I count this as successful trickery!

I guess the main point I have to make this week is the importance of respecting Lisa and Joseph’s capabilities. As I mentioned last week, they don’t always know that they have Alzheimer’s or dementia. Thus, they think they are fully capable of caring for themselves. It serves me no good to insist to them that I am here to help because they need it. They are much happier thinking they are caring for themselves and are also caring for me. This also means I need to let them do as much as they can for themselves (even if they struggle), and let them think they are doing even more. And if I need to improve my acting skills in order for them to feel they are still fully capable, I can do that. Hopefully the Academy of Motion Picture Arts and Sciences will one day extend an Oscar to the caregiver with the most acting talent!

Because I believe in the importance of humor, I hope to end every blog with a story about the reality of dementia that we can all laugh about. Last Monday, Lisa and I were eating lunch. I made Lisa a turkey sandwich and was enjoying a ham sandwich for myself. Lisa was complaining to me that there was way too much turkey on her sandwich and she would never be able to finish it. I gently encouraged her to eat what she could and we would deal with whatever she couldn’t finish. Before we were finished eating, I had to leave the table for a few minutes. When I returned to my sandwich and took a bite, I found that my sandwich now had turkey on it - yuck! As I secretly inspected Lisa’s sandwich, I noticed she no longer had any turkey. I asked her if she gave me all of her turkey. Her response; she could not even see the turkey or my sandwich so how could she possibly give me any! This is when I acted like I made the mistake and ate the turkey as if I liked it.

Stay tuned for next week’s musings.

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