I feel like whatever I do for Dad, it isn’t enough.

Dear Grassflower: I’ve been taking care of Dad for going on four years now, and I feel like nothing I do is enough. If it’s not Dad having a meltdown at the dementia home, it’s my sister explaining how to take care of him, or my brothers refusing to help out despite living only 20 miles away, or the fact that one won’t talk to me because he thinks I’m a control freak. Grassflower, I am doing the best I can. I feel I shouldn’t have to explain that to people who should know it, and I feel like the stress and exhaustion isn’t making Dad any happier. I feel guilty sometimes when I visit because I just want to get it over and go home to bed. Then I have to get back up and do it again tomorrow. What the hell? When does this end?

There’s a lot to unpack here.

Your responsibilities to Dad

First of all, as Dad’s caregiver, your responsibility is to see to it that he’s safe, that his needs are taken care of, and to the extent possible, that he’s relatively content with his situation.

If he’s not in any danger of hurting himself or others, you’ve taken care of his safety.

If Dad’s got access to food, clean clothes, and the like, and his meds are taken care of, you’re successfully discharging that responsibility. Not that Dad won’t have times when he doesn’t want to eat (usually as the dementia advances), doesn’t want to eat what the staff are serving (he’s NEVER liked green beans!), or doesn’t recognize food (toward the end, my mom called breakfast cereal “cold white soup”). Those things are bound to happen, but if you’ve done what you can, you can rest easy on the food issue.

Dad’s meds will change. Sometimes he’ll have anxiety issues. Other times sleeplessness problems. Sometimes he may exhibit psychotic behavior. You never know what cards dementia is going to deal, and sometimes there’s nothing you can do about it. Sometimes, Dad will respond positively, at least for a while, to certain medications.

Which brings me to my last point: if he’s relatively content, leave well enough alone. Who cares if he wears sweaters in June and they’re inside out? He’s got dementia and he’s never going to be “normal” again, but if you kind of squint your eyes a little, you can see your way to a sort of “new normal” where Dad is capable of enjoying working with you on a jigsaw puzzle, playing a card game you just made up where he always wins, sharing cookies (a favorite of mine!), or going to Sonic for tater tots or ice cream.

If you’re doing these things, you’re taking care of Dad.

Your responsibilities to others

Inevitably, one of your siblings isn’t going to see things the same way. Your sister the nurse will say you’re not on top of Dad’s meds, or you need to be trying to do X, or change Y. And maybe if Dad’s care were her responsibility, she’d have some say-so. But it’s not. Listen to your sister, weigh the merits of her advice, and make your best judgment. You are NOT responsible for doing what your siblings demand. THEY are not saddled with Dad’s care.

Or your brother might be upset with you for selling Dad’s house to pay for keeping him at a dementia facility because you can’t have him at home and get any work done. He doesn’t understand that Dad really does need 24×7 help with eating and bathing and so on, and can’t just sit in his living room watching TV while you’re on Zooms with the Regional Director of Operations. Maybe your brother thinks you’re squandering Dad’s assets and ferreting away the proceeds because you always were greedy and money-focused. You know that’s not true, so why does it matter what he thinks?

In a situation like the above, you ARE responsible for keeping a record of Dad’s expenses and for paying for his care out of those assets. For legal reasons, you may be required to produce those records if there is an inquiry into his care. But outside of showing that you’re actually spending Dad’s assets to take care of Dad, you’re not accountable to any of your siblings or other family for spending them in whatever way they dream is appropriate or imagine is affordable.

It is your responsibility as Dad’s guardian to make sure he’s not the victim of elder abuse. Legally, elder abuse can be physical, sexual, emotional, financial, or neglect. If Dad’s dementia care facility is engaged in any of those, it’s your job to make sure it doesn’t continue. But elder abuse can occur in more insidious ways. For instance, if your brother has access to Dad’s checkbook to buy himself guns or booze or vacations or lavish presents for his girlfriend—no matter HOW entitled he feels or how much he feels “Dad would have wanted it”—that’s financial abuse, you can’t allow it, and if it destroys your relationship with your brother, so be it.

Your responsibility is to your Dad and yourself, no one else.

Sometimes being the adult in the room means that you have to make excruciating tradeoffs on Dad’s care: for instance, stretching out his assets so that they cover the longest care, maybe at the price of having to accept that he can’t afford a private room at the dementia care facility.

Consider the information and situation you have in the moment, make the most informed judgments you can when you must, and walk away knowing you did your best.

So I’ll say it again: you don’t owe anything to anybody else but Dad and yourself.

You’re probably doing too MUCH, not too little

It sounds like you visit your Dad quite often, and maybe that’s burning you out a bit. Perhaps it’s the utter DAILY-ness of seeing him in a chair in a room full of old people, staring out the window with a perplexed look on his face. Maybe it’s the fact that you’ve watched him go from a mentally sharp former civil engineer to someone who gets frustrated at working sudoku puzzles or using the TV remote.

Sometimes you just need time away. Good mental health cannot be sustained in an environment that feels like a war zone. Dad’s dementia care facility has probably got his bathing and eating and meds covered, so skip a visit every so often. Go to the arboretum, or to a state park, or just go sit out in the yard with your husband and have a backyard picnic. Remember what the sun felt like on your face the last time you did that…in 1993? Go get some ice cream, buy yourself a bunch of flowers, and take a long, hot bath.

This can be a real problem if your own natural tendencies are to be “in control.” So here’s a news flash: you’re NOT, and you never will be. Dementia is like a plane crash: there are no survivors, and the best you can do try to keep things level until it plows into a grassy field and breaks apart. No matter what you do, it won’t make Dad better. The best you can do is make him comfortable and content. If he smiles at you when you show up with cookies, you’ve done your job, and then some.

Feelings about yourself

You probably don’t need me to tell you you’re doing okay. You don’t FEEL that way right now, but intellectually, I imagine you understand that you’re doing all that can be done, and the results aren’t much different from doing nothing, and THAT’s what bothers you.

My husband has a saying that stress comes from a partial ability to control outcomes. If you can’t change things, he says, what’s there to worry about but your feelings? If you’re 100% in control, what’s there to worry about? But if you can only do so much and no more, you have to reassure yourself that you followed your plan, did what you could, and had to walk away and somehow accept whatever happens.

It’s very, very important that once you do what you can to take care of Dad, you get enough sleep, rest, and time to yourself to get on with life, because in all likelihood, you’ll survive him, and you’ll have a lot of emotional mess to clean up if you don’t take care of yourself.

Some people are into meditation; some, prayer. Some, just quiet thought. But I DO encourage you that whatever your inclination, you find time to write down what went RIGHT with your day, not just when you see Dad, but when you don’t. When your siblings bring their attitude, try very hard to understand that Dad’s decline is causing them pain also, and that it’s very likely their lashing out at you is just biting whoever stuck out their hand.

If you can find gratitude in the little things, you can find joy, and peace, and even compassion for others who are still suffering and grieving Dad’s impending loss.

It’s a long road ahead, and best to make as much of the journey as possible in the light.