"Where's Shari?"

I didn’t think I’d be back this soon, but here I am. I belong to a couple of Caregiver support groups (all via internet since most of us can’t get out of the house). On Wednesday, I posted on one of them in an attempt to express something most of us (caregivers) have been through at one time or another. I am copying and pasting it exactly as it was posted…

Some days are good. Some days are not so good. And then there are days like today...
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm Shari, Dad."
"Oh."


Unless you have walked in the shoes of someone who loves and cares for someone with Alzheimer’s, you can’t possibly know how much this hurts. Nor can you imagine how painful it is to watch happen. Please understand this went on for most of the afternoon until almost dinner time. We had been at this for several hours when I posted. Please reread the first line of the post carefully. I wasn’t saying today was a good day or a bad day. I really hope no one else thinks I was implying anything other than it was what it was.

Someone I have come to think of as a friend was a bit harsh in their response and I will be honest enough to admit: I was taken back by their words. I completely understand that it must be the most painful thing ever to love a spouse as much as my friend loved his only to lose them to this horrendous disease. I can’t relate to that, and God willing I won’t ever have to but, I care for the only father I have had in my life for the last 20+ years. For me, this is tough enough to deal with. My heart goes out to my friend but anyone who is dealing with this terrible disease should have a right to occasionally be frustrated. I read and reread my own post trying to see where I had complained (as I felt he was saying to me). I am copying and pasting his response but I am removing his and his wife’s name as it is not my right to divulge personal information about anyone in any of my groups…


“The day will come when you will look at days like this as good days...the last two years for my wife were days that she was non responsive and hardly opened her eyes...I would have welcomed the exchange you report...”


Many of the comments that followed were supportive and loving but just as many were people talking to “my friend” (with no mention of the post itself). As a rule, I rarely post on any of the groups I’ve been involved with and I suddenly remember why. For every loving, supportive person out there, there are just as many people who want to knock others down or simply ignore them. Personally, I just plain don’t like the odds. I have a few people in my life (very few) that I DO talk to about my day-to-day world. While they can’t completely comprehend it, they support me unconditionally. Every caretaker needs at least one person who is capable of unconditional love in their lives, someone other than themselves. To be honest, I don’t think my friend intended anything other than to express his opinion but, at the time, I felt he negated mine. The downfall of being a caregiver is sometimes being too sensitive. I'm sure, for me, this was just one of those times.

Later That Evening
As many of you know, I work part-time as an over-night caregiver. For the most part, it works well with Dad’s schedule. I am able to get him settled for the night and I am home before he wakes in the morning…usually. After the day I had with Dad not knowing who I was, but asking for me constantly, I was already tired when I left for work.

The lady I care for was released from the hospital (after her second bout of pneumonia and a urinary tract infection this year) just hours before I arrived. When I got there, I was informed she was trying to decide if she needed to go back to the hospital because she was so weak and dizzy. It took me 2 hours to convince her she should be after being hospitalized for nearly a week. Between her falling asleep and 9am, she had to go to the bathroom 7 times. She had a very bad night which included wetting the bed 3 times (change sheets and gown, put back to bed, do loads of laundry) and wetting the floor twice (nothing like scrubbing the carpet at 3am). When she was awake, she wouldn't let me out of her sight but kept telling me to do things and get things that required me leaving the room. Then she would call out, "Shari, Shari, Shari, SHARI!" She doesn't even take a breath in between and gets louder as she calls me.

The Next Morning
When I got home Dad was trying to call the police because, he insisted, everybody lies to him and hides things from him and he wanted the police to come "put the dirty bastards" out of his house! Then he told me an elaborate story about Richard pulling a gun on him last night and threatening to kill him so he could "run things" (which, of course, never happened). It took me an hour to get him settled down and to get him to stop cursing at me and shaking his fist in my face. It was difficult trying to clean the kitchen, put together a meal for him, get him to climb onto the scale, take his blood pressure and pulse/ox, record everything and get his meds all while he ranted and raved.

When he woke up from his nap and he didn't know who I was again. As a safety precaution, I sent the kids downstairs to watch TV. I am so glad I did. He apparently had a dream that shook him up and became convinced that EVERYONE is out to get him (me included). He was angry and belligerent, telling me stories that made no sense. Like a fool, I tried to reason with him and explained as gently as possible the many reasons why none of these things could have happened. He yelled at me to shut up. I tried to reassure him and he brushed me off. He slammed his hand down on the arm of his chair and struggled to his feet. At that point, I decided a breather for both of us was in order. I cocked my head and announced I heard “one of the babies” (they are 3 and 5) crying and said I should go check on them. As I started to leave the room, he grabbed my ponytail and yanked it, nearly pulling me off my feet. When I stumbled backwards, he did, too. He landed in his chair with a “plop” and tears welled up in my eyes, the pain in my head secondary to the pain in my heart.

Concern flooded his. “Are you feeling ok, Sweetheart?” he asked as if nothing extraordinary had happened.
“I’m fine, Dad. I’m just tired,” I admitted with a deep, shaky breath. “I have to check on the kids.”
“I’ll be here when you get back,” he smiled so innocently. “Hurry back, ok?”
“Sure, Dad, quick as I can,” I replied before running downstairs and locking myself in my bathroom to cry for a minute…or two. And before I could even blow my nose for the second time, I heard him say, “Where’s Shari?”