MY WIFE HAS DEMENTIA. Now what?

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What Do I Do?
My wife and I heard that diagnosis six years ago. It was the worst news of her life. And mine. So, here's what I know: your immediate future will illuminate for you, and her, what kind of husband you are.

I’m not a doctor or therapist of any kind. But I’ve trod this path and maybe I can provide you some helpful insight. Here goes...

One day in 2013, my wife was her usual, lovely self. The next day she was in the ICU, being asked every hour if she knew what year it was. A week later we were home. There was lots of hope for rehab and how “this diagnosis affects everyone differently.” 

The fact is, your future will be what it’ll be. You won’t know how it’ll turn out until it’s all over. For now, the only thing you’ll have is your conviction that you’re going to help her deal with it, no matter what. 

Mauricio Graiko @ Shutterstock

“I Do?”
You don’t have that conviction? Then these next words are especially for you. 

Pardon my bluntness here. Your wife needs to know if she actually married a guy who’s going to bail, leaving her to deal with her bleak future, all alone. The guy shuffling towards the open doorway of the plane yelling, as he jumps, “I never signed up for this!”

Mael Balland @ Pexels

If you’re that guy, you do need to bail, right here. I’m not talking to you. I’m talking to the guy strapped in upfront. The pilot. The guy who, when he was asked if he meant it, about ‘better or worse,’ said, “I do.”

Is She Someone Else?

Don’t listen to those who say, “She’s someone else now. You need to adjust.” You can deal with her dementia and love the woman, too. She’s still in there and she will often know you. 

She’ll always be the woman you fell in love with, even as she slowly loses the ability to tell you her most secret thoughts. And even to know who you are. You’ll soon learn new skills and how to effectively deal with the disease while still talking to her.

OpenClipart-Vectors @ Pixabay

Get Out In Front Of It

The best pilots fly a plane not where it is, but where it’ll be. So, first, get a handle on that: here, and here. These two websites can be your maps. 

Second, join a caregiver group. They’ll give you vital insights into local resources and you’ll meet people dealing with spouses in waaay more difficult straits than yours. That context can help you keep your balance. 

It’s not an act of betrayal to talk about your wife to strangers. It’s vital for you both, and whatever is said in there, stays in there.

After my wife passed, I attended a grief group where the common refrain was, “I wish I’d started dealing with all of this earlier than I did.” Everybody puts off the worst, hoping for the best. Don’t. Keep looking into the future. 

Finally, see an Elder Care Attorney immediately, and arrange powers of attorney, health directives, funeral arrangements, and every other vital issue while she can still discuss and sign them. It may seem kind, to delay. It isn’t. Especially if expensive living centers are in your future. 

End-Stage Tips...

Of the many, I’ll mention an unpleasant few. I’ll tell you why in a sec...

Karolina Grabowska @ Pixabay

Wandering
You’ll become concerned, as I did, that you’ll come out of the bathroom and she’ll be gone. These “confounding locks” can help. You’ll have to weigh the risk: locking her inside vs allowing her to leave unaccompanied. I only used them when I was in the house, too, and I doubled the number of fire extinguishers.

I also bought her a waterproof medical ID bracelet, holding a USB flash drive. I attached a Tile to the bracelet and wrote my name and phone number on it. Tiles allowed her to be traceable on my phone. 

Later, for insurance, we had the local police give her a non-removable bracelet, which was GPS trackable by their squad cars. You may not think they’re necessary at first. My advice: don’t wait until she's gone.

UTI’s

Paul Brennan @ Pixabay

As careful as I’d been when her incontinence began, one morning a chilling scream brought me racing to find my stiff, quivering beloved on our bed in a full-tilt seizure. Short story, 911, ER, UTI. She was wearing adult diapers by then, which I changed often during the day. 

But she was becoming confused about how to clean herself after bowel movements. She fought me as I showered with her. 

Here’s what the ER said: it's common in women with dementia for fecal matter to easily find its way into a woman’s urethra. Her brain, fighting dementia and other menaces, didn’t have the wherewithal to fight off a UTI, too, so it responded with a seizure.

I installed bidets and removed toilet paper from our bathrooms. I began checking her temp every morning when she woke. A slight rise and I’d sample her urine (caught in basins) with OTC UTI test strips. A positive result triggered a call to her primary doctor for UTI meds.

You Can Do This
Did I scare you? I meant to. But only to help you prove to yourself that, if you are committed to being her pilot, you can do these things. You’ll amaze yourself.

I learned how to handle all the things that terrified me at first, (probably the same shockers you’re imagining, too). I kept my darling wife safe, clean and happy until the end, when she drew her last breath in the arms of her children and me.

I made mistakes. But I surprised myself. Your wife will be infinitely happier with you at home, as she deals with this harrowing malady.

But What If You Can’t?
If you’ve read this far, I’ll mention the bigger terror.  What if, after you’ve given it everything you’ve got, you still have to put her in a care facility? You know she’ll hate that. And the money, my God...

I faced that fear, too. I worried about her. I felt the guilt. But I figured it this way: if, in the end, the best place for her is in a facility, at least I would know that with utter certainty. I'd know I’d given it all I had. And knowing that, my soul would let me sleep at night after she was gone.

Pixabay

So we visited all the local memory care units, chose one, submitted all the applications and had her admission accepted. Then, at a moment’s notice, she could be taken there.

Ilia Baksheev @ Shutterstock

Like, what if you have a heart attack? That’s right. The EMT’s who respond to you can call the care facility and they can come to get her as you go to the ER.  Luckily, I kept that in my back pocket but never had to use it.

Trust me, in the end, you'll have found new ways to be in love with the woman. By then, you’ll have done all the difficult things and you both can be floats down at last. And, someday, when your heart and hers are bound together again, you’ll both always know that were the husband she always dreamed of.

The Prostate Chronicles

Good luck, Ron

Here's some reading for men of a certain age...

Letters In A Helmet