My dad’s day came in like a lamb, turned into a lion, and ended like a lamb. It began softly, continued throughout the day with gentle words, coaxing, raised eyebrows, and ended with a tiny blue pill meant to reduce agitation, fear, and a combative attitude, and induce calm and sleep. I learned of a new syndrome-Sundowner’s Syndrome, or Sundowning.
Sundowner’s Syndrome – ‘Sadness, agitation, fear, as well as other mood and behavior changes that occur just before dark are called Sundowner’s Syndrome, or sundowning. Caregivers might notice that their parent who has Alzheimer’s disease or dementia becomes more agitated at twilight.’
http://www.agingcare.com – Marlo Sollitto
My dad was eating lunch when I arrived at his hospital room with my sister. I noticed we both waited three or four seconds for a sign of recognition before approaching our father’s hospital bed. No one told us to do this, we just do. My father asked when we arrived, and we know he means when we arrived in Florida, not at the hospital. His eyes tell me the rusty wheels of his mind are working as he looks at my sister and than at me. I struggle to remember what I learned in anatomy class about the brain’s synapses, and I wonder which ones are firing up as he gazes at us. What does he think of when he looks at his youngest daughters? Does he remember walking us down the aisle? Does he remember an argument or a fight? We will never know. I then realize I don’t remember a thing about anatomy class which immediately worries me, so I put that out of my mind as I greet my dad with a kiss on the cheek.
I’m greeted with, “Where’s your better half?”
“You mean Chuck?” My father nods, his mouth slightly open as he waits for my answer. He and my ex-husband were good friends. “Oh, we divorced in 2007.”
You live alone now?”
‘Yes, I’m alone now, but I’m happy,” I add quickly. His eyebrows raise, and I mentally kick myself. I should just tell him Chuck is fine and not mention the divorce, but I feel guilty lying. Is it kinder to lie to this 84 year old man or tell him the truth, and possibly make him feel bad that he doesn’t remember? My dad and I have had this conversation dozens of times over the past four years as his Alzheimer’s progressed, and I still don’t know what’s best.
“Where’s he at?”
“He’s still in Belgium.” My father believes all women should be married and protected by a man in the sanctity of marriage. I have this conversation memorized. He’ll ask me if my ex-husband remarried, and then, we’ll move onto questions about what I’m doing to support myself. I tell my dad about my children’s current news, and that they send their love. My sister knows she’s next in the line for questioning, and gives me ‘the eye.’ We change the subject. I realize my sister and I have a silent language around our father. Raised eyebrows, big eyes, and tiny, lightning-fast shakes of our heads all mean the same thing-‘don’t go there; leave it alone for now.’ We also tell each other what worked with my dad when it was our turn to be alone with him-‘try this’, ‘not that’, ‘ignore that’, and ‘never say that to him in the evening’. I realize we don’t know what we’re doing; we’re only managing moment to moment, and putting out fires we’ll fight again in the next hour or so all over again. Why do we bother sharing what worked for us, then? Do we need those minuscule moments of accomplishment and peace when we had a bit of control over a potential situation with my Dad? You bet we do. Peace and calm must be managed, and we’re all for prolonging the hell out of peaceful moments. But, Dad is agitated today.
The new nurse’s aide tells us the surgeon came in earlier and said Dad can be discharged, however, it could take all day for the necessary paperwork to be processed. My dad says it’s a stupid system, and a bunch of incompetents run the hospital. Here it comes. The sweet Bahamian nurse’s aide pulls my sister and I aside with an eye on her patient, and tells us he had a bad night. My father’s OCD tendencies have been on parade all night and all morning. She tells us he won’t leave the bandages on his head alone, and is intent on removing his IV. The bandages are protecting a precious skin graft that now covers what’s left of my father’s ear-a tiny bit of earlobe and a bit of the top of his ear. The good news is that the surgeon has deemed the skin graft healthy; there won’t be another surgery. We are very relieved. Our prayers have been answered. The bad news is that if Dad touches or messes with the bandages and disturbs the skin graft, it will be a disaster.
And, my sister and I are in charge of taking our father home, and caring for him during his first night home while our step-mom takes a much-needed mini vacation away from care giving. We won’t sleep, we already know that, but we are not prepared for Dad’s outbursts, anger, fear, and agitation. He won’t allow anyone in the bathroom with him despite being a risk for falling. When he’s in the bathroom, the nurse’s aide opens the door a crack, watching him from the mirror. Sure enough he removes his head bandage, and she opens the door. What ensued wasn’t pretty, and to complicate matters even more, my dad thought I was my step-mom as we led him to his bed. As my step-mom, I received a closed fist near my face and a warning to back off. I instantly remembered my step-mom telling us about the nights my dad pounded on her door, threatening her before he was diagnosed with Alzheimer’s. Wow.
Minutes later, the nurse came in, removed the IV from my father’s thin wrist, gave him a little blue pill, and called for the wheelchair. Her parting words to us were, “Your father cannot be left alone for a second any longer. He is in the last stages of Alzheimer’s, and is very unsteady. You and your step-mom need to have a conversation about future care.”
My sister and I slept in two hour increments. My father had a restless night. He managed to push back the bandage on his head, but not remove it totally; he took two bathroom breaks which were thirty minutes each, and I could tell when that little blue pill wore off. We will have another day alone with our father today, Sunday. Monday, our step-mom returns, and Wednesday, we leave for our homes in Maryland and West Virginia. We absolutely must have that conversation with our step-mom…she’s not getting any younger herself. God bless them.