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...

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. 

Moving Day

Looking back I realize my approach was a bit naive. Kristina had warned me it would be difficult settling my mom into the new place but I didn't believe her, or maybe I just didn't want to face it. I thought my mother had declined enough not to realize the implications, or that she would be happy about it, after all she has been wanting to move out of her place for months (all 8 of them in fact). But now, I realize until yesterday my mom had held out hope she would be 'coming home' with me. 

As I packed up her room she and Carolyn went for a walk. It took me 8 trips to get everything loaded. Why had I moved her in with so much stuff in the first place? Three suitcases of clothes, a TV, 18+ picture frames, a bedside table, a large chair, and a five foot cabinet I had to drag along the two floors, into the elevator, through a parking lot and into a truck myself. 

When we arrived at her new home initially she seemed fine, even introducing herself to the receptionist. Then one of the care aides extended a warm and gentle introduction - my mother's chin began to quiver and her eyes filled with tears. I remember this chin quiver from last summer when she was initially placed in care. I call it the "worst day ever" and swear I need therapy to get over it because the memories haunt me to this day. 

It's not that I don't realize that she is better off (I do). It's not that I don't know that she will be okay (she will). It's not that it hurts to see her cry (although it does). It is this particular cry, in this particular moment that - I know she knows. I can see it in her eyes that she knows, and I can see that she knows that I know as well. That is why she is crying and that is what breaks my heart. 

Yesterday she knew she had Alzheimer's. Yesterday she knew I had sealed her fate in a new "home", she knew she was sick, and she knew what it meant for us and our lives together. 

Fighting my own tears and a rock in my throat, I held her, and hugged her and told her that I know, and I'm sorry and that it was a great move for both of us. She told me she wanted to go home and I know it's not the "going home" part she wants - it's the "I don't want Alzheimer's" part she wants.  

I stayed with her the rest of the day. Kristina came later and the three of us had dinner in the new dining room with a very sweet lady Alice. Eventually my mom's crying spurts were fewer and farther between. She started walking around exploring on her own. The care aides, nurses and activity coordinators were all warm and gentle with her. 

Today I know I have done the right thing; I know it will be great for both of us; I just can't help feeling a little broken hearted that this is the ride we are on. 

we gotta transfer!

Mom has been on the transfer list to a facility closer to my house for 8 months now. It was my first choice but because she entered the system on an "emergency list", we had to take the next available bed wherever it came up. 

Monday I got the call that a bed had opened in my first choice which is less than 2K from my house. After carefully weighing (and agonizing) about what to do, I landed on being very happy about it. It will be much easier for me (and friends) to visit with her nearby. 

Having done this for a few years now, I have learned I cannot sign all the paperwork, move her things AND HER at the same time - without losing my mind. 

She can sometimes be like managing a 2 year old (not that I have one but I am guessing). One time unattended for less than a minute was able to steal a chocolate bar (sorry Shoppers). Unwatched there is no telling what she will get up to. She might run off on me, or try to go with someone else. She might also get into my purse, pull out my papers, photos, and wallet (or whatever else is in there). Then she might throw these things out, or hide them, like in her sheets or under her bed. You just never know, so you can't risk it. Many of my things have gone missing, been ripped up, covered in chocolate, or generally destroyed in the past 4 years. 

Having learned my lesson, I did the packing yesterday. I did the paperwork today and I will do the 'move' tomorrow. 

I'm a bit nervous about it, but I believe having her closer will be better for both of us. Plus it's an Italian place, so she will fit right in - with the culture and in height - ha - all of her 5'0 self. No disrespect to height challenged Italians ;-) 

Wish us luck settling into the new place. 

do I have dementia?

Often times when someone finds out my mom has Alzheimer's/Dementia, they tell me they are becoming more forgetful and are worried they have it as well. 

Here my 'sure-fire' test if you have it or not:

If you "remember" you forgot - you're fine. 

It's when you don't remember - you forgot - there is a problem. 

And trust me, if you don't remember, your family/friends will be like:

"Hey, you forgot" and you will say "no I didn't"

...because you simply won't remember that you didn't remember.  

So, don't worry.

Because you forgot your keys, what you had for dinner last night or that you had a meeting this week, it's okay. You're normal.   

You really will be the last person to know you have Dementia. 

BUT, if you are around someone, have noticed they are not remembering, and when you remind them they have forgotten, they disagree or still don't remember, consider consulting a doctor. 

*note: these are only my personal opinons, from my own experience. I would suggest medical advice if there are real concerns with family or friends*