When he was 55 years old, my husband was diagnosed with Alzheimer’s Disease. When he was diagnosed, he was determined to do as much as he could do for as long as he could do it, and the progression of the disease was slow.

On January 24^th of this year, he was hospitalized. On September 22^nd, I finally succeeded in getting him home again.

Prior to being hospitalized he had lost many of his abilities such as: being able to plan, to organize, to do his finances, to complete familiar tasks, to dress himself without help, to remember where he was—how he’d gotten someplace and how to get back home—which led to losing the ability to drive. During his hospitalization, he also lost most of his language, and the ability to toilet himself.

In December of this year, my husband will turn 70 and he will have lived with Alzheimer’s Disease for 15 years. Except for the period he was hospitalized, he has lived at home. I have often heard people say, “Living with someone with dementia is like living with a child.” It’s a common perception. But is it true?

Children are mimics. They follow adults’ examples (especially the ones you’d rather they didn’t see) and challenge parents to find ways to communicate with them that will encourage them to develop good life skills and protect them from harm. We try to teach them to be aware of their surroundings, to honor the sensibilities of others, to follow the order of law that governs our society, to question and explore. In other words, we strive to raise self-confident, skilled, empathic, honorable, engaged citizens. It’s a tall order. It takes every skill parents possess, plus the skills of the dozens of other ‘teachers’ who influence children along the way.

Unless a child is developmentally challenged, they develop on a continuum. They start out requiring total care and supervision. As they grow, they learn to do things for themselves, to think for themselves, their circle widens, and they may surpass their teachers in skills acquired.        

While children are busy gaining knowledge, learning how to plan, and to imagine possibilities and work toward a result by taking those possibilities into account, Alzheimer’s patients are losing their vast store of knowledge, and the ability to imagine. Like a fire that starts in one corner of a room and burns through a house wiping out a lifetime’s belongings, the storage rooms in Alzheimer’s patients’ brains are destroyed. Some belongings lost in a fire can be replaced, some things cannot. Alzheimer’s is like the things that can’t. When the parts of the brain that govern various skills and bodily functions are destroyed, in an Alzheimer’s patient, those things are gone forever.  

What that means in part is that no matter how many times one tries to explain some things to an Alzheimer’s patient, the patient will not be able to recall or relearn how to perform a task they have forgotten how to do. Nor will they be able to learn new tasks.

However, Alzheimer’s patients have spent a lifetime acquiring skills and opinions and have grown into their own ways of doing things. They have been a valued member of society. They cannot be solaced by being picked up and carried, or made to laugh by blowing a raspberry on their bellies. (Okay, that one might be up for discussion.)

In building his life, and in losing his abilities to control his life because his brain is dying, my husband is no different from anyone else who suffers from Alzheimer’s.

However, he often knows there is something he should be able to do, but can’t, which leads to incredible frustration. He still has his own opinions and ways of doing things, even if he cannot express it verbally. He takes in and understands far more conversation than anyone gives him credit for. And he remembers how what’s said to him made him feel, which leads to sadness on his part. That retention and understanding are often hard for caregivers to understand, and to accept, which often leads to regrets on the caregivers’ part.

Alzheimer’s is a disease in which the goal posts move. Things can change from month to month, or even hour to hour. Frustration is part of the package. There will be times caregivers as well as patients need to allow ourselves to vent and to cry. But we need to find ways to do this that don’t cause more pain.

In the midst of a difficult situation, taking deep breaths when the volume is rising, stepping away to collect one’s thoughts can help. Leaving a task and going back in 5 or 10 minutes to complete it is sometimes mandatory for success.

But simply wrapping one’s arms around the patient and soothing them with soft words or sounds, or putting one’s hand on their chest and asking them to take long, slow breaths might also help. We all need the closeness and warmth of physical contact. Sick and vulnerable people most of all.

Later, it’s important to take time to assess how things have changed, and how one can deal with the changes. Keeping a diary can help. Hearing or reading other people’s stories can also provide valuable insights.

And remember to laugh.

When Bill was still able to go to the bathroom himself, one night he did. For some reason, he put his pillow on the floor. When he returned and got into bed, he looked bewildered.

“Lose something?” I asked.

“Yeah. I think so.” He said and continued to look around.

“Lie down,” I said.

He did.

“What are you missing?”

His head swivelled. He spied my pillow. “A pillow.” He sat up and started to hunt in his covers for it. Eventually he spotted it on the floor.

“You know you’re fodder for a book someday,” I said, grinning.

He laughed. “Yeah.” His laugh is deep and rolls out of him. It’s infectious.

“Would you be upset if I did write about us?” I asked.

“Nope.”

“Good. Because I already have.”

We both laughed. “Consider yourself warned…again.” (I clear it with him every time I write something). “And sleep on your side, not your back.”

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