Alzheimers is a cold-hearted bitch. It leaves you anxious and confused; scared and lonely; frustrated and sad. So why is the word comedy even in the title of this blog post? For two main reasons. First and foremost, you have to find the humor. You must laugh. Second and for real, when you can step back and be impersonal, you can’t make this shit up … and some of it is funny.
And herein lies the rub. When Mom is having a bad day and I respond with humor in my voice and lightness in my spirit she responds in kind. When I am indifferent or anxious and respond with distress in my voice and negativity in my soul she becomes more anxious and sad.
A couple of weeks ago we had a “find the humor” day. Mom had a bad night and being unable to calm her down the nurse contacted my Dad first thing in the morning. Dad spoke to her on the phone but was unable to ease her mind so he finished his breakfast and headed over. Things eased up a bit but she remained frustrated and angry. She had a doctor’s appointment that day and when I arrived to pick them up for it Dad let me know she was having a bad day. Mom was in the bathroom at the time and hearing my voice she came barreling out of the bathroom and threw herself against me. She cried “Oh Jann, I’m so scared! I can’t see!” She was terrified. Like trembling and sweating terrified. I took a breath and put my emotions in check and said “Mom, you’ve been legally blind for 12 years. Did you forget?” To which she replied “Oh, hmmmm, well I kind of remember something about that.” I chuckled and said “Let’s make sure nothing has changed. Can you see what I have on and describe it at all?” She could tell it was a structured shirt with stripes, but was unsure of the color – exactly what I would have expected her to say. It took a good half an hour of asking vision assessing questions, reminding her of her eye disease and assuring her nothing had changed before she was able to get back to a calm state.
How horrible is that?!? She forgot she has a disease that gradually took away her vision years ago. She thought she had suddenly and out of the blue been stricken blind.
As you may have guessed Mom has taken another step down in the Alzheimer’s spiral. She has begun to prowl around at night, something quite common as the disease progresses, and something I am glad Dad doesn’t have to deal with directly. But sadly, he is not getting off unscathed. She often wakes up disoriented and thinks she is at home … and she can’t find Dad. She comes out of her room looking for someone to help her find her cheating husband. God bless the care workers who help calm her down, try to ease her mind, and get her back in bed. On a great night they are successful, she goes back to bed and doesn’t remember a thing come morning. On a mediocre night they can ease her mind enough to get her back in bed, but she’s restless until morning and still agitated at breakfast. On a bad night they hold her off as long as possible before giving my dad or I a call. So far that has been rare but if it becomes a problem we may have to restrict her calling hours, something Dad does not want to do.
And then there is Dad. He’s probably the biggest victim in this scenario. He knows exactly what is going on. He has watched his wife of 59 years leave him one day at a time. He goes to see her every day and then goes home alone with the echo of her words in his head. She wants to come home, she doesn’t like living apart, she’s afraid he is cheating on her. He used to say he would rather lose her than see her live like this. With this recent change he now says he looks forward to the day she no longer remembers who he is. You see, it will rip his guts out but he will know she is no longer in a state of agitation.
So, where does that leave us? In my mind it boils down to three choices:
- React with emotion. Wring your hands and gnash your teeth. The results? Everyone gets stirred up. Mom senses it and her agitation and anger worsen. Dad becomes increasingly upset and sad. I go home feeling like a rung out dish rag.
- React with no emotion. Remain detached and clinical. The result? Mom senses she has done something wrong and becomes sad and weepy. Dad shuts down. I feel like the ice princess.
- React with humor. Honest humor, not a plastered on smile and stiff ha ha ha. Lighten up, don’t over react. The result? Nudging Mom with a little tease makes her feel like everything will be OK and we will be here for her. It makes Dad feel like a co-conspirator as we make eye contact that projects “nudge, nudge, wink, wink” to each other. I feel like a successful tightrope walker – I made it to the other side!
It isn’t all humor. Sometimes I cry. Ugly, sobbing, messy crying. I often feel overwhelmed. I cringe when I visualize myself in her place in 35 years … please let it be 35 years … (Ryan and family, you had better find the damn humor!) Dad and I have serious talks and I look him in the eye and have compassion for his pain. I hold Mom’s hand or give her a hug and every fiber of my being is attempting to project comfort and support.
Do I wish things were different? Absolutely. Do I feel a pang of guilt when I giggle at the ludicracy of her forgetting she is blind? Every damn time. Do I realize that I am making things better for all of us? Hells to the yeah!
The lesson I hope that I am imparting is, find what works for you, for your family, for your situation. No matter what you are going through, be it caring for a loved one, a cancer diagnosis or just navigating your daily life. If you need to cry, cry. If you need to laugh, for the love of God, laugh. If you need sarcasm, channel Bill Murray (or insert your favorite deadpan comedian here) and think or say something that makes you feel a bit scandalous. If you need to hit something there are places called destruction zones where you can do that without fear of jail time or the expense of replacing some household item that you just broke!
Be true to yourself. Feel every emotion you have WITHOUT shame. Remember my journey and know you are not in this alone.