Some days I’m Just Too Tired
A Perpetual State of Tired
Late nights, interrupted sleep, trying to help, being rebuffed, all takes a toll. Sometimes it is just misunderstanding. When our loved one loses their hearing, their vision, and on top of that processes what they do see and hear through a confused mind, our meaning is not clear to them. We say one thing, what they believe we said is often completely different. My mom interprets my words as criticisms, my dad as praise. They are so different. I wonder how to make it better and I’m tired.
What They Don’t Know
A study by the NIH cites caregivers, “…the backbone of our health care system are frequently hidden patients.” https://www.ncbi.nlm.nih.gov/pubmed/9432450
Our loved ones don’t know that we have spent hours on the phone trying to straighten out their insurance, their medications, and filling out endless forms. They don’t know we are paying their bills for which they no longer have funds–they would be horrified if they knew.
They don’t know how emotionally taxing it is being a caregiver 24/7. Yes, they took care of me when I was a child. They were in their twenties then, not past retirement age. When you’re not actually caring for them directly, they think you are resting or enjoying yourself. My mom often thinks I’ve gone out to dinner or been away with friends when she doesn’t see me for an hour or two. She’s forgotten the need for grocery shopping, cleaning, yard maintenance, a dishwasher needing to be filled and emptied, laundry, and she remembers cooking as a favorite activity. She forgets she often went out for dinner. Neither parent sees what’s behind the curtain anymore. They don’t know I spent the night staring at the ceiling, unable to sleep until early morning, I don’t know why– it weighs on my mind. Their world has narrowed to a single point–they are the center. This is not because they are selfish, they have lost the capacity to understand what is beyond their immediate need. They have lost the ability to empathize.
They don’t see their demands as intrusive or excessive because it’s all they see and all they have to think about. They no longer have a social calendar, work responsibilities (and the accompanying recognition), or even the self-care duties as they can no longer do them on their own. Their days stretch out long in sameness. The only thing punctuating their week is a different caregiver, meals, an and occasional doctor’s visit. My mom no longer even has doctor visits or trips to the lab to add variety to her life. Her caregiver gave her a “spa day” last week, soaking her feet and hands, putting on nail polish. Mom was inordinately pleased but then forgot it happened.
So why should I be surprised when they ask the same questions over and over? No wonder they call in the middle of the night and can’t remember why they called. Night and day are pretty much the same to them. It’s not surprising when a food they used to like, they suddenly don’t like. They ask for something else–something that requires time and ingredients to prepare, which I don’t have. They don’t understand why I can’t magically produce it. When food is one of the few pleasures left to them and it doesn’t taste like it used too because dementia and age have dulled their senses, it’s not surprising they suspect I either forgot how to make it or deliberately left something out.
Mom fell out of bed first thing this morning. Her feet were on the pillow, her head where her feet belonged. No wonder when she tried to roll over, she fell on the floor. My dad blames himself that she fell. It’s no one’s fault, just part of her disease process. She isn’t injured, just very confused. She thinks it’s time for bed instead of time to get up.
Last night she couldn’t eat. She managed a bit of mashed potatoes and some pudding. She kept asking for something, but couldn’t remember it’s name. We played the guessing game trying to jog her memory. It turned out she wanted Jello, which was all gone. She looked so defeated when I told her we didn’t have any, but I would make more. I’m sure the effort it took to remember the name must exhaust her. She’s in too much pain to walk back to her room, so I use the wheelchair. I tell her it’s time for bed. She asks, “What am I supposed to do?” I feel very sad.
But still, sometimes I am just so tired.