The plus side of Easter dinner with family

Before her onset of Alzheimer's mom’s favorite thing in the whole world was to cook dinners for 16+ people, at least 6 times a year. Every Easter, Thanksgiving, Christmas sprinkled with a couple birthday and summer parties. My mom loved to cook, love to entertain. She invited friends, friends of friends, and visiting friends of friends. My friends, their parents, and many times their parents parents. I invited people I worked with, people who were new to Vancouver, even people I had met that day on the Seabus (they became her life long friends). 

My mom would plan, prepare, and organize these dinners days, even weeks before the evening. Shopping, chopping, baking, cooking, freezing. These dinners weren’t fancy, they were “traditional”. Ham, turkey, corn, scalloped potatoes, sweet potatoes, peas, fresh sliced bread, cabbage rolls, key lime pie, mud pie, apple crumble. And they were good and fun. There was always too much food and too much wine. In essence my mother was expert party planner. She was fun, lively and generous, guests were always sent home with a few leftovers and handmade dishrags. 

These dinners usually turned into parties, the irony being my mother was not a partier. She was not a drinker, and had a bit of OCD. She was always in bed by 10, with the kitchen clean the party continued downstairs without her. There were so many dinners, for so many years - I thought they would go on forever.  

On this Easter weekend, I miss my mom’s dinner. Even though it has been 4 years since her Alzheimer's began (and you would think I’d be over it), it is the first time since her diagnosis that I have been living my own life. Until recently I had been swept up in the blur and confusion of her disease which kept me focused on her. Now, I am working on my future, and life (direction still unknown), the absence of my mother this weekend is a deep and unrelenting. 

If you are lucky enough to be invited to an Easter dinner this weekend with family - forget what your sister in law said last time about your hair. Forget your mom makes you crazy (mine always did long before she was really crazy...). Don’t be irritated your dad always pours his wine first, or that your brother’s wife puts her career before her family - enjoy it for what it is. Enjoy the meal (and hopefully the wine), enjoy the moment and enjoy the company. You are healthy, breathing clean air, and have an abundance of food in front of you. This meal was likely prepared with hours of effort and love by someone who cares, so enjoy the honor of being invited. 

They really do not last forever.  

Happy Easter. 

Meet my Mom - Before

This video of my mom was filmed about 3 years ago (4 months after her diagnosis). It reminds me how she used to be, I can't help but watch it over and over again. 

In the video she looks just like herself. Happy and relaxed (although she wasn't often in the 'relaxed' mode - she was more often in the 'high functioning' mode). She is engaged, and has make-up on! WOW. 

It has been just over 3 years since this video was shot. In that time my mom has gone from sitting on the couch with the dog - to living in a room where a code is needed to enter & exit, and has gloves sewn into her sleeves. 

I don't believe any amount of information or knowledge can prepare one for witnessing the decline of a person (especially a loved one) with Alzheimer's. Even though you know it is going to happen, you can't believe it happens. And it happens so slow, yet so fast. It is hard to reconcile in one's mind. 

the bright side of having Alzheimer's

There is something to be said about the gift of my mom's disease - at least in our case. There are many that suffer with Alzheimer's who are angry or distressed, my mom is not one of them. She is happy as a clam and you can tell by the big smile on her face.

She is easily re-directable, is always up for a walk, and enjoys doing arts and crafts. She delights over simple things like visits, puppy's and candy bars. That being said, you take away her TV and all hell will break loose. When I moved her, I set the TV up first - listen I'm no dummy.

Life can be hard, we all have worries. My mom certainly had worries, especially when a few of her friends started dying off. She used to worry about her company, her employees, she used to worry about me, she used to worry if she had enough money to retire. She used to worry about her community, about the state of Canadian politics, and why the paper hadn't been delivered on time. 

Now, she worries about nothing. Zip-Zero-Zilch.

She is happy - how could she not be? 

All her needs are cared for 24/7. Her meals prepared. Patricia, would you like coffee after your dinner? You would like a little milk in your coffee wouldn't you? Patricia, do you want to paint, color or take a ride on the bus today? You want to dance? I'll play some music for you. Patricia would you like a bubble bath or a shower in the spa today? 

All the doctors come to her, as well as the podiatrist, obstetrician, hairdresser, dentist and she can have in-room massages.

Then I come to visit and get ordered around: Tricia, move your head - I can't see the TV. Did you bring me any candy? Where's my dresser? When are you going to take me for ice cream? 

Sometimes I wonder where I can sign up...

do I save my mom's teeth?

Of all the stuff you have to deal with when you care for some someone with Alzheimer's, power of attorney, socializing, prescriptions, forms, taxes, family (or lack of) real estate issues, photos, personal items, dietary, medical, activities, the list is honestly endless, I never once thought about having to choose to save my mother's teeth....

But here we are.  

When I came back in December after a three month stay in Mongolia with Kyle, I noticed my mom's teeth were covered in gunk. When I began to brush them off with a toothbrush her gums immediately started to bleed.

You don't have to be a rocket scientist to figure out what that means, or where it might lead. 

If you knew my mom, you would know this would never have been acceptable to her (in fact she would be mortified to have dirty teeth). She took excellent care of them and great pride in them. She always had two cleanings a year and floss nearby because, truthfully, she had a little bit of OCD, and 'flossing' was one of her 'obsessions'. Suffice it to say - her teeth were clean.  

I have nothing but praise for the facilities in which she resides/d. There isn't a single instance that has made me (or anyone who has visited) feel uneasy. In fact I am in constant awe of how WELL my mother and the other peeps (my word for the other residents) are looked after, and cared for. The standards (in my experience), of both the facilities and the care aides/nurses have been superb.  

But oral care is not a top priority and I can't really blame them. They have enough on their plates with getting everyone up, dressed, cleaned, fed, toileted, fed again, active, medicated, fed again, undressed and into bed. Who has time for brushing teeth? And frankly, most residents have dentures. 

So I asked the nurse, what should my expectations be? Is it okay for her to lose her teeth? What is easier for the care aides - dentures or her real teeth? The nurse said it would be best if we could keep her real teeth as people with Alzheimer's/Dementia tend to lose their dentures, and it makes it hard to feed them. Thank god because I did not want my mother to lose her teeth. 

When I spoke with the head of the Special Care Unit (SCU) my mom's special section which requires a code to enter/exit. She told me oral care in long-term facilities is a provincial wide issue. So-much-so that in the past UBC (University of British Columbia) had "programs" targeting oral care in long term facilities (I wish they were still around). 

The head of the SPU and I made a deal. I would brush and floss my mom's teeth when I came to visit, and make a poster of instructions to be hung on the wall in her bathroom for the care aids. I would also provide the toothbrushes and Listerine (needs less water than toothpaste). She would ask her staff to take a extra few minutes (two times a day) to brush them. Not an entirely bad deal for improving my mom's oral hygiene. 

It's been a few months, her teeth look good - not perfect. But they look much better than before.  

The photo is of the poster I made. A few weeks later she ripped it off the wall and piled it up on the floor with the rest of her things. Another one of her futile attempts to pack and 'go home'.  

Well, you can only try right?  

always wear sunscreen

My mom has been doing well since moving her into her new home. Once she learned how to get back to her room the transition became easier. 

There is an unexpected learning curve in having my mom in a care home. It has taught me to live a better, more fulfilling life. It has taught me to choose my activities wisely, and ask the question - is this endeavor worthy of my time and energy? I was in a little bubble before, randomly living for the sake of it, without realizing the true preciousness of life, or just how finite it really is. Now after each visit I walk out deciding to live to my life to the fullest, engage with people I love and mostly, have fun. 

My mom was always proud of what I was doing (I know, only child syndrome). Be it a project, travelling, or some new and interesting adventure I had chosen. Even though we were often separated, I always knew what she wanted the most for me - happiness. She wanted me to be happy. 

It has been hard on me the past few months as I have been looking towards my future. Not that my future is hard, but there is an element of moving forward that is difficult because I feel in some sense I am leaving her behind. Somehow I get to go into the future, but she does not - not in the long term anyway. I have found coming to terms with this difficult.

I realized this weekend that the best way to honor my mom, and her dreams for my life, is to live life to the fullest. She would not want me to be worrying about her or burdening me with her illness. Of course it goes without saying that I will be there - but I am also trying to remember that she would want nothing more than for me to be happy - and so in this moment, that is what I am choosing to do. 

I feel inspired by Baz Luhrmann's - Always Wear Sunscreen: Don’t worry about the future, or worry but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum...

Give it a listen, I bet it will inspire you too.