Dementia…. A Love Story

“Did you ever have a fight that made you think about your marriage and wonder if this is going to work?” I ask my frail aunt living with the debilitating symptoms of dementia.

“Well.. it wasn’t really a fight, but I did have a confrontation with him about his job once”, she replied.

My uncle had a great job working on the ‘dew line’ a government position of defense up in the far north that required him to be away from home for long periods of time.

She continued, “he came home on one of his weeks off and I just told him he couldn’t go back up there, the kids didn’t know who he was when he came home, and I didn’t like that.”

“What did he do?” I asked.

“Well, I think at first he didn’t think I was serious and we didn’t fight about it because it was a fact and I just stated it,” she said quietly.

My soft-spoken aunt is so calm, I seldom have seen her angry, ever. These two people are my favorites, they have shown such dedication and caring towards each other, something I have not witnessed in other married couples. My uncle never had to do anything in the house, like washing clothes or cooking or cleaning. My aunt held down a full-time job as well as caring for four children which included a set of twins. I’m sure he did other stuff because it takes two people to make a marriage work.

My aunt always seemed to take a special interest in me. My mom (my uncles’ sister) had six of us to raise when she left my dad and I was the oldest at 12 years old. She probably felt sorry for me because I was always looking after my brothers and sisters, my youngest brother was only a baby and still in diapers. They lived close by and I liked spending time there (away from all those kids, maybe?). I also looked up to my Uncle, he is only 7 years older than me, but he was always my idol.

“What are you two talking about?” my uncle asks from the kitchen where he is making lunch for us.

“All your shortcomings!”  I retort with a laugh.

“You know” my aunt lowers her voice “he is so good to me,  I’ve told him he doesn’t have to do all this,” she says. “He won’t even listen to the idea of putting me in a home,” she said with such love in her voice. She is right, my uncle doesn’t even consider this an option. At each stage of development of this insidious disease, he tackles it singlehandedly with my aunt..  with dignity and such humour.

Maybe that is the saving grace, we laugh a lot during my visit. My aunt has a new development, there is nothing wrong with her eyes but the disease has short-circuited signals to her brain and she is losing her ability to see.

Years ago my uncle took up scuba diving and snorkeling, my aunt is deathly afraid of water. He wanted her to share in these new pursuits, especially snorkeling.  He patiently held her hand while in the water and never left her side. He also made sure she was comfortable beside him. Her eyesight was so poor that she couldn’t see all the colourful fauna and fish while snorkeling, because she couldn’t wear her glasses, so he figured out a way for her to see. He had a mask especially made for her with the glass finely ground to aid her eyesight. He cared that she should enjoy all that he could see.

“Okay.. are you two ready for lunch?” he calls out from the kitchen. He helps my aunt out of the easy chair and she puts a hand on his shoulder and follows him to the kitchen. “Think we should go to the bathroom first?” he says.

“Oh why not” she replies and says to me “we do everything together now” and she laughs. As we are seated she tells me how this once useless man, that never run a washing machine, now does everything around the house. “How does my hair look,” she says, “not good” I answer, and they both bust out laughing. I am kidding, of course, he washes and blows her hair dry every day.  She has shoulder-length blonde/grey hair.

My aunt is so funny and we laugh out loud about all the dumb things that pop up and some poignant ones as well. We reminisce about our younger days, I am growing older along with them and we remember the time she borrowed grandpas car. She took me to look for my friends to celebrate my 16th birthday because she thought I deserved to have a party, and she was determined to give me one. “Every girl should have a 16th birthday party,” she said. My mom lived on welfare because my dad never sent us support money so we didn’t have money for anything but basics I guess. We did eventually find a couple of my friends, and we went back to my aunts’ house and had a pop-up party for me.

“Was there any indication that anything was wrong or what was your first sign that maybe something wasn’t right?” I ask them now because I am curious.

“Well” my uncle pipes up, “I came home for supper one night and she has this wonderful casserole with a thick spaghetti-like sauce in it and I eat it.” He continues .. but I felt there was something missing although I didn’t say anything. The next day I asked her if there was anything else that should maybe be in that sauce. She says “no” and then she burst out laughing and said, ” gee, I forgot to put the noodles in.” We all laugh at that and I marvel at my uncle’s desire not to be disrespectful to her cooking, omg .. that is too funny. When this disease was first diagnosed my aunt and uncle decided to go, and do, and see everything they could before it would become too difficult.

My uncle took early retirement from the government and they decided to travel and see the world.  They took in many different countries either flying or cruising, traveling as much as they could and making incredible memories. They did it right I think to myself, enjoy today and just do it, don’t wait until it is too late and circumstance makes it impossible.

I share a memory I will never forget when I was 13 yrs old. A well-to-do aunt from my dad’s side had invited me back with them to Ontario to spend a couple of weeks on summer vacation, I was so excited! My mom gave me a flat-out “No” and said,  “we  don’t even own a suitcase and I am NOT sending you to her with your clothes in a bag!” (I think she was embarrassed )

The tears I shed, oh my, then my aunt came through for me.  She lent me her really nice suitcase and I think she even made sure I had something nice to put in it.  I only remember the suitcase and how happy I was that she made it possible for me to go. That suitcase came back worse for wear and she scolded me, she didn’t remember that but I felt sooo bad, but she also forgave me.

We settle back into the living room while my uncle does the cleaning. “So did he go back up north?” I ask my aunt.

She looked at me and said, “no, not even for one more rotation.. he stayed home and found a job back here.” Wow, it was just a fact and sometimes you need to make your family your first priority. I give my aunt a really big hug and tell her how much I love her as tears flowed from my eyes as they are right now.

“What were you two talking about in the living room?” my uncle asks me as I am leaving.

“Oh” I say ” I am going to write a story about you two,”  I tell him, “and I will send it to you.”  I give him a big hug and tell him how much I love him too.

On May 5th, 2015 my uncle Gary and Auntie Marilyn celebrated 52 years of marriage.

These two wonderful amazing people are gone from my life now but I will never forget them.  They live on in me and my stories.

 …this is a true love story

 A little update from my Uncle Gary

“…Although completely bedridden now…..She still knows everybody and is aware of what goes on around her. She hears everything and still laughs quite a bit, especially when the great grandchildren are over. She never gets grouchy and never complains, I am so very proud of her…”

I wrote this over a year ago and I also want to share what my uncle Gary said to me once. “I need her more than she needs me“. I  figured it’s time for another visit so I sent him an email, yesterday.