Oliver: Different stages of Alzheimer’s require different levels of patience

Patience might be in short supply in the world, but it’s an essential quality for anyone who finds themselves as a caregiver. That’s even more true when one is a caregiver for someone with dementia.

What I didn’t realize nine years ago when my husband, Tony, was diagnosed with early-onset Alzheimer’s disease was how different “eras” of his disease would require different kinds and levels of patience.

Perhaps I mistakenly thought that since I had cared for my mother for almost four years that I knew a thing or two about patience. After all, as my mother’s vascular dementia worsened, I found my patience tested at every turn.

My mother and I had always had a complicated relationship. It became even more complicated as she accused me of taking her pills and when she constantly spoke of the “little people” who were out to take all her belongings.

When she refused to go back to bed when she’d get up in the middle of the night, it took creativity and patience. I didn’t have a good night’s sleep for almost the entirety of her time with us. To say I was stressed out and exhausted would be an understatement.

However, as bad as those years were with my mother, they are nothing compared to the last nine years with Tony.

At first, it took patience to remind myself repeatedly that the strange things he would forget were out of his control. It tested my patience when I couldn’t get him to do simple tasks for me, such as lifting one leg of a sofa so I could slide the rug underneath.

I often found myself losing my patience. I feel silly now because I really had no idea how much harder it was going to be.

When Tony could no longer cook, I had to have patience with myself to take over that job. Along with that came taking over all the driving for the family, which was something Tony did, as well as all the decision-making, which was a shared task.

When Tony stopped speaking over time, it required patience to figure out what he wanted. His patience also was tested as I struggled to do that.

Of course, when Tony becomes frustrated, that often means he lashes out in a physical way. To be hurt by the love of one’s life, who had never been violent in our previous 20 years together, required patience and understanding that I didn’t think I possessed. But even that patience could be developed.

Then there was Tony’s penchant for constantly moving around the house and hiding things. I used to get really frustrated and angry when things disappeared. I spent ridiculous amounts of time trying to figure out where Tony put things. In the beginning, it was his socks. If only it had remained just his socks.

I have learned that I need to prevent as much of this as possible or set things up so that whatever goes missing isn’t essential to the functioning of our household. For instance, Tony is fixated on kitchen towels, so I put out more than I really need so that he can happily hide some.

That I’m no longer getting as frustrated is a testament to the training in patience that I receive every day. Progress is being made.

Still, as soon as things seem to be going well, something changes.

The latest twist involves my usually silent husband becoming a bit of a chatty Cathy. The only problem is that none of it is understandable, and it often becomes louder and more aggressive when his Alzheimer’s disease takes over.

This babbling can be a single word said over and over again. The words “dill” and “bill” are among his favorites. Or they can be fully formed swear words on repeat. Tony’s neurologist tells me that swear words are stored in a different part of the brain, so they can be accessible when other words are not. Swell. It does make taking Tony out in public even more of an adventure.

This new wrinkle requires another level of patience. I’m sure the parents of toddlers can relate.

Still, I can see how far my patience has come since those early days. However, it’s still a work in progress.

Goodness knows, though, I’m getting a lot of practice.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.