I never thought I would write a post like this one. Until recently, I didn’t think I would need to. But I’ve realized that, when it comes to caregiving, people who don’t do it have no idea what’s involved. And this ignorance (please forgive the word; at the moment I can’t think of a better one) recently sparked a couple of remarks about my perceived inability to handle things.

So I decided to share my typical day. I am not doing this to complain, but to help non-caregivers understand exactly what caregiving can be like. You may want to grab a cup of coffee first.

My day begins at five thirty. Since I have added going to school to my daily to-do list, I’ve found that this is the best time to watch one of my course videos. That keeps me busy until seven. Then I check emails, do some writing, and start my day for real.

I go out to fill our fountain at seven thirty. When I come back, Jack is usually starting to stir. I put water on for coffee and feed the cat. Then I start making breakfast.

My breakfast routine varies. Some days Jack dresses himself without much help. Other days, he can’t find or put on his underwear, pants, shirts and shoes. All his clothes are ‘gone’ or ‘missing’. I need to stop what I’m doing and help him ‘right NOW’. If I don’t, I am no help and I’m being mean.

On those days, I bounce back and forth between the stove and Jack like a yo-yo, getting clothes out, making coffee, helping him dress while the eggs are frying, dodging the occasional thrown object (he gets frustrated). He complains about my choices and insists he wants “THOSE pants”, which he has worn for five days in a row. He refuses to wear a clean shirt unless I put it on him. Then he has to organize everything before he sits down to eat. It is part of his dementia related OCD. I haven’t been able to change this.

By his breakfast time his sugar is low and he’s snarling and ready to fight. He complains about everything: my cooking, my housecleaning, my schoolwork (“You have to go faster. You’re not doing anything. You’re never going to get it done. They’re going to kick you out.”), the fact that I have to go to work. (“You already worked yesterday. Why are you going out again? Let someone else do it.”) He tells me exactly what I should be doing and why, and (on his worst days) tells me everything I’m doing wrong.

(Sometimes his mood improves after breakfast. Sometimes it doesn’t. I never know which Jack I’ll get. I have to prepare for both.)

I go out to work between nine and nine thirty, depending on how much help Jack has needed. Sometimes he follows me and wants to help, which requires time and patience on my part. Sometimes he comes out and watches me work. Other times he stays home. I never know which it will be, which means I need to plan the day several different ways. Sometimes none of the plans work.

I go home for lunch at noon. I feed Jack, then make lunch for myself. I catch up on phone calls and make inroads on any paperwork that needs doing while I eat. At one I go back to work.

My workday ends at four (usually). When I get home, I give Jack a snack to hold him until dinner. Then I try to spend an hour studying and doing homework. I say ‘try’, because many times Jack is already starting into sundowning mode even though it’s several hours until dark. Then I have to deal with his anxiety, irritability and paranoia. Which means after three all bets are off.

Dinner is at six. Then at seven thirty I go out and fill the fountain for the night. After that, I try to read and/or do homework until bedtime. By then I am usually too tired.

This may not sound like much to anyone who is not a caregiver. It may be why some people find it surprising that I can’t stay on top of everything. But the above is just the visible aspects of the day. There are many things that aren’t visible, like:

1). Being ‘switched on’ 24 hours a day. Jack’s dementia requires that I be constantly alert to mood changes, sugar fluctuations, tiredness levels, and comprehension. I need to make sure he stays safe. I have to be able to shift gears at a moment’s notice in order to work with him. If something is off in any of these areas, I need to fix it. Otherwise it will be a rough ride.

2) Sleep deprivation. Jack often needs to get up once or twice a night to pee. Often he is not fully awake, so he will have no idea where he is. Sometimes he can’t find the bathroom, even though it’s less than fifteen feet away.

Sometimes Jack has nightmares and will kick, thrash and yell. At times, he will push me out of bed because he’s fighting someone in his dreams, Other times he can’t sleep, so he will poke and tickle me to wake me up too. I start many days sleep deprived. It makes everything else harder.

3) Fibro flares. When I’m flaring, I feel like I have the flu. My entire body hurts and I’m more tired than normal. But I still have to look after Jack. On those days, I still get things done. I just do them slower.

4) Dealing with the ‘unmentionable’ things. Like my own anxiety and grief. The exhaustion that goes with caregiving. The days where I feel so overloaded that the least thing brings tears. The energy used to tuck it all away so it doesn’t come out in public, because public and caregiving don’t mix.

5) Dealing with Jack’s ‘personalities’—the sneery adolescent, the traumatized vet, the ‘angry toddler’, the paranoid husband, the (occasionally) happy go lucky little boy. Sometimes I get all of them in one day. And each one requires a different way of being and interacting.

6) All the little “extras” that go with caregiving. Appointments, phone calls, insurance paperwork, VA paperwork, state paperwork. Arranging in home care. The many ‘mini-crises’ that surface without warning. Finances and bills. End of life paperwork.

7) Did I mention housecleaning? I seldom get around to it, and I no longer care because Jack undoes it all anyway. It will get done when it gets done, unless it doesn’t. At this point I’m fine either way.

I still don’t know if I’ve adequately conveyed just how tiring caregiving can be, how much it takes out of you.  At bottom there aren’t any words. Caregiving has to be experienced to understood. As frustrating as ‘ignorant’ comments can be, I don’t wish anyone the experience.