The Uninvited Guest: Series Introduction

2009-01-16_0058-2Some guests call first. A “Hi! We’re going to be in town, can we stay with you?”

Some are given an invitation. A “We haven’t seen you in so long! Come visit this summer!”

Now and then an unexpected guest shows up with little to no announcement – due to some mishap or other.

My mother was always hospitable to guests. She welcomed friends and family anytime, with or without notice. She never turned anyone away. She offered up a room and a bed to various people over the years: some who were moving and needed a temporary place to sleep; some who were having a rough time financially and needed somewhere to stay.

My mother was always hospitable to guests. She welcomed friends and family anytime, with or without notice.

In 1979, after my father had a grapefruit-sized cancerous tumor removed from his brain and was still in the hospital, my mom made friends with the man who was in the bed next to dad (he, too, had the same kind of tumor removed) and the man’s wife, Marge. Sam, like my dad, had been in the Army, and had to travel from South Dakota to the Army hospital here in Colorado to have his surgery. The four of them – mom, dad, Marge, Sam – struck up a friendship during the long hours of sitting in the hospital. Marge had been staying in guest-quarters on the base, but Sam’s recovery took longer than expected, and she had had to give up the room, and move into a nearby hotel. My mom would have none of it. Marge was promptly relocated to the guest room of our house, and over the years, when Sam had to come back for follow-up, for more radiation and chemo, another operation for a different ailment, Marge and Sam stayed with us.

When Pope John Paul II came to Denver for World Youth Day, my mom hosted a youth group from the parish she belonged to in Rhode Island. My mom is from Rhode Island, and after she retired, she spent several weeks (even months) each year in Rhode Island. For a time she alway stayed with my Aunt and Uncle (until they all had a falling out), and my mom joined the Catholic parish that was right next door to my Aunt and Uncle’s home. A total of twenty-three people (mostly teens, and three chaperones) stayed with mom. She’d spent weeks running around, buying bunk-beds at garage sales and Goodwill stores. When she couldn’t find enough, she went to Sears and bought a few more sets. Then there were all the new mattresses for the beds. And the carpeting for the garage – the kids couldn’t sleep in a room with a cement floor. While I was not living at home during this time, I did have a large role in getting beds put together, cleaning, rearranging. My ex, Ronn, and I referred to the group as The Pope People. The Pope People stayed for about a week. After they left, mom kept in touch with Marie, one of the chaperones, and, over the years has visited her in Rhode Island, or down in Florida. A month or so ago, Marie was in town for a convention, and mom went to spend the day with her.

Growing up, I do not ever recall my mom telling anyone they weren’t welcomed under our roof.

She’s even welcomed Age with all its inconveniences and aches.

There is, however, one houseguest who has moved in, uninvited and unwelcome: Alzheimer’s. We aren’t really certain when it started moving in. Who can really say if one forgotten word is simply age-related mental decline or something more significant? Was the forgotten appointment a result of age or dementia? There are moments when I wondered if the mental slowing was something more than age-related. But, then again, when you’re in your 80s and 90s, who doesn’t forget a thing or two along the way?

We can’t call Alzheimer’s a renter or tenant – that implies it can be evicted if it becomes problematic.

So, no. We don’t know what date to put on the deed. We can’t call Alzheimer’s a renter or tenant – that implies it can be evicted if it becomes problematic. Alzheimer’s moves in and becomes the owner of the house – it’s very presence permeates everything. The Title to the house is in mom’s name, but, in 2015, Alzheimer’s took over our home. Technically, the house is still ours, but Alzheimer’s controls everything within our house – who knew it was so invasive?

I’d known several people, a few of them relatives, who had Alzheimer’s, but it was always at a distance: they never lived with us, most never even lived close enough to go visit when they were in a nursing home. Mom’s Alzheimer’s is the closest I’ve ever been to the disease, and for all I knew about it (or thought I knew about it), I’ve learned that I know so very little.

Alzheimer’s is an infestation. It is slowly eating away at my mom’s mind, taking away this memory or that word. We had no idea that the infestation would spread to virtually every aspect of daily life. We know that mom’s mind will disappear into the fog – though we don’t know at what speed. I think Julian and I were unprepared for the idea that every moment, every decision, every action is directed or controlled by Alzheimer’s. It’s not just memory – forgetting a word or mixing stories together. Alzheimer’s touches everything: toileting, eating, drinking, bathing, mobility, interaction. Everything that is said or done in our house is filtered though the lens of Alzheimer’s. Lens is not the right word – a lens can be seen through, though it can distort the image. Net is a better word. A big, woven net. Everything gets caught and tangled in it. Just when you think you might be breaking free, another rope in the net wraps around you.

We are having to re-learn to communicate – words take on new meanings and implications. We are re-learning how to respond when we communicate. We are still learning to re-learn.

As 2015 ends, we are still learning, even re-learning. We are having to re-learn to communicate – words take on new meanings and implications. We are re-learning how to respond when we communicate. We are still learning to re-learn. Some of it we are still trying to figure out. Like: what is the correct response when your mother tells you that there is nothing wrong with her mind; when she says she thinks you are conspiring with the doctor to make her think she’s crazy when she’s not? There’s the normal, instant, knee-jerk response – but it serves no point here. What is the appropriate emotional response when you ask your mother if she really thinks you’re the kind of person who would work with the doctor to make her think she’s crazy and your mother answers “yes”? We are learning a new mantra to chant in those searing moments: “It’s not her talking, it’s the disease.” We chant, over and over. It hasn’t yet lessened the sting.

We are not the first family to deal with Alzheimer’s. Sadly, we won’t be the last. But, we are in this together, the three of us: mom, Julian, I. What Alzheimer’s has in store for us in 2016 is unknown.

All I know is that I have reached a point where I can no longer avoid writing about our struggle. Saying the word Alzheimer’s aloud took some time – it made it more real. Writing the word down makes it even more tangible. I don’t write about it because I want, need, or ask for you to pity us. I’m writing about this because words have power – writing helps me express and make sense of the things I think and feel. I’m writing because Alzheimer’s has no set patterns – the changes in the person with Alzheimer’s can be as unique as the individual is. There are commonalities, yes. And, that’s where we find strength – in the commonalities of our stories.

As 2016 starts, I need to document what is going on – with my mom, with Julian and I. They may be longer posts, or quick notes about this or that happening. There is no set plan – though I would like to try to go no more than a week without a post. This is our map – we’re making the map as we go along. Maybe our map will reach someone else who is dealing with the same struggles. Maybe our stories will reveal some commonalities with that someone else’s story.

“We tell stories in order to live”, wrote Joan Didion.

True.

And we tell stories to find commonality of experience, to find out how to live – it’s how we find strength.

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