Notes to Self on Living With a Person With Early to Mid-Stage Alzheimer’s Disease


Breathe in, breathe out.

The light is on in the bathroom.

There are dishes in the dishwasher. Some of them are dirty, some are clean. Some have been washed three times now.

There are dishes in the drainer next to the sink as well. The wet ones are dripping on those that have been dry since yesterday.

Patience is a virtue; you are not yet sufficiently virtuous.

The light is on in the hallway.

There is laundry in the washer. It is a mix of darks, lights, and towels. It has been there since this morning, so smell them before putting them in the dryer.

Her glasses are on the bathroom counter. Her cell phone is in the living room, on the couch.

Breathe in, breathe out.

The light is on in the bathroom and the hallway.

The most common sentence you will utter now is “What are you looking for?”

Learn to pivot on a dime: you reactions, your emotions, whatever you happen to be doing or thinking. Be ready to switch to something else entirely; you’ll be doing it all day long.

When she asks a question, answer it. Then answer it again the next time. And again. In the same tone of voice, showing no surprise and no frustration.

When she shows you the cute thing the dogs are doing, look over and smile. Each time.

White lies are now acceptable in a marriage. Even necessary.

The pots are where the pans were, the pans are now on the lower shelf. The cheese grater is now in the other cabinet, not that one, the other one. The measuring cups aren’t stacked anymore; they are now in three different cabinets. The cheese slicer is gone again. The stockpot only has its strainer part, which means it’s useless. Throw it away. The vegetable steamer no longer has a lid; throw it away too.

There are mice in the walls.

Get your blood pressure checked. Breathe in, breathe out.

The lights are on in the kitchen, bathroom, and hallway.

The dogs are locked in the house. Let them out and make sure there is vinegar for the carpet. Don’t replace the carpet yet. This is going to happen a few dozen more times.

Her cell phone is in her purse, turned off and not charged. Her glasses are on the bathroom counter. The other bathroom.

You’re getting four Father’s Day presents. That should make up for no birthday present. Your anniversary present is somewhere in the house. It will turn up eventually.

The hand towel is hanging over the shower. Her bath towel is lying, wet, on the bed.

Practice nonchalance. Practice standing and waiting for the right word to come to her. Show no impatience. Don’t guess the word.

Take a breath before you respond to any question. Don’t let her see you take it.

Take her out to lunch at least once a week. It’s lonely at home even if it is difficult to be out.

Don’t worry about what other people think. Even if it matters, you don’t have time.

Exercise. Every day. You don’t have to want to; you just have to do it.

Find a moment to yourself. Ten minutes should do it. Back at it, slacker.

Breathe in, breathe out.

Your socks are in your underwear drawer. Those aren’t your underwear; they belong to your son. His socks are in your sock drawer. Her sock drawers (both of them) are overstuffed.

There are 43 socks coming from 29 separate pairs on the floors and the furniture of five rooms of the house. Some are clean, some are dirty. Don’t guess, just wash them all.

White lies are now acceptable in a marriage. Even necessary.

Her glasses are on the bed, under the covers. Her cell phone is on the coffee table.

Check her cell phone. There may be voicemails. Check her email too. Privacy is no longer an issue.

Buy the Christmas presents. All of them. Your relatives, hers. The kids you barely know; the kids you haven’t met yet. The relatives you hope to reconnect with someday. Keep a list so you don’t buy them twice.

Take the kid out to ice cream. Listen to him. He has fears and anxieties and no clue what’s coming.

You have no clue either. Accept that.

Accept that.

Stop trying to plan ahead. One Day At A Time.

Plan ahead. Call the lawyer. The one who couldn’t be bothered to reply to an email inquiry. Or, the other one. Who the heck knows?

Put some sodas in the fridge. They won’t be there when you want one, but you can always hope.

Caffeine is necessary. Not too much. (How much is too much?)

Talk to the doctor about your blood pressure. Breathe in, breathe out.

Don’t ask if she’s eaten breakfast. Just take her a cup of yogurt. Take it to her again when she leaves it on the table. Again when she leaves it in the bathroom. Throw away the yogurt in the fridge that is two-thirds full. You have no idea how old it is. Throw away the mystery substance and the other one and the other one.

Your keys are in the freezer. Keep that car key close; it’s your only one. Hers flew off the top of the car years ago.

Buy coffee filters when you go to the store. Just buy them. Buy coffee too.

Get a Christmas tree. Not the little one; she doesn’t like those. Pull out a manageable number of ornaments.

Fill the kid’s stocking for Christmas. Fill hers too. Pull the kid aside and explain to him that Santa fills his stocking, but mommy and daddy fill each other’s. And, he shouldn’t say anything if mommy forgot. Daddy doesn’t mind.

Work on not minding.

Laugh when you can, and when you can’t. Use humor, with yourself and with her. Employ dark humor as needed. Don’t worry about those who cringe and think it’s inappropriate. They cannot possibly understand.

Try not to envy their lack of understanding.

Fill her medications. Give them to her. No, don’t let her go back and get them. She’ll stop in the bathroom and forget. Put them in her hand.

Check her cell phone. There may be voicemails. Check her email too. Privacy is no longer an issue.

Check to make sure the Wi-Fi is up before leaving for work. If it isn’t, she can’t use Netflix.

Take her to the movies. If she goes to the bathroom, go yourself. Pretend you need to go too. If not, she might return to the wrong theatre.

Hug the kid, whether he needs it or not. He needs it. Tell him you love him. Remind him to hug both mommy and daddy good night. She notices when he skips her.

You have no idea what she notices. It changes every day.

Answer his questions; the ones you can. Tell him you don’t know. Because you don’t.

The life you thought you might have is gone.

Stop worrying about money. It’s just money.

You have someone who will tell you she loves you fifty times a day. Cherish that. It doesn’t matter why she’s saying it or if she knows she just said it. Say it back. Fifty times.

Fifty-one. Say it first.

Eat a vegetable once in a while. Think about getting therapy. Maybe get it. At least think about it. Breathe in, breathe out.

Take a break. Ask a friend for some help. Ask for advice. Maybe take it.