Embracing The Journey of a Mom with Alzheimers

By Sophia Sarantakos

Hello #GoGetters,

I’m going to begin my story with one of my favourite questions ~ If you could wish upon a star, what would you wish for? I wish a lot of things: world peace, health, happiness for my family and yours, fulfilling dreams, making things happen, more travel, a kinder more loving humanity, a sense of community and contributing to it, and the list goes on. I’m a big Universe girl.  I believe in what you put out there comes back tenfold.  Its all about attitude, believing and trusting in self; being surrounded by positive people like my parents, and love.

I moved back home on June 1, 2015 to look after my parents. My dad, 85 years young and always 38 when you ask his age, has congenital heart disease.  My mama, 75 was diagnosed with Alzheimer’s in January 2016.  I am their full-time caregiver.   I celebrated my first anniversary with a hot tub soak reflecting.  I can pin point the exact years, of course in hindsight, that were red flags in regard to the changes within my mother: she stopped highway driving 10 years ago, 7 years since her cooking habits and meals began to change, 4 years ago showing signs of forgetfulness, the beginning of hoarding items, shopping in bulk which she always did but now purchasing what she already had plenty of.  The change in appearance, the way she dressed, just letting it all go and saying things she would never say.  This wasn’t my mother.  Each time I tried to talk to my father about the changes in my mom, he shrugged it off by saying, ‘we’re getting older my girl, what do you expect from now on?’  I never pressed further because I didn’t want to upset him or his heart.

I was hosting Christmas Day 2014, the family buzzing with happiness. I was cooking a feast and my dad came into the kitchen.  I heard him say, ‘something isn’t right with mommy’. He finally agreed with me.  Something is definitely not right with mom.  What we suspected all along is our reality.  I didn’t know anything about Alzheimer’s disease, which by the way is not curable.  Now that I think of it, Christmas 2014 is probably the last time my mother and I had a real mother-daughter exchange.  I went into pro-active mode looking into local services, discussions with our family doctor, the Alzheimer’s Society in Toronto, searching online to find out as much as I could.  I was shocked to find out that we could wait up to 16 months before she could get an appointment with the Memory Loss Clinic. How could this be? The demand for this care outnumbers the healthcare professionals available for this horrible illness, and it’s a global problem which will only get worse.

I have always loved my mother. I didn’t think I could possibly love her more than I did.  Guess what?  It’s possible!  The woman who moved the earth for her children, for me, for my children is teaching the family to love even more than you can possibly imagine.  She has brought the family closer together and is teaching us patience.  I’m discovering new things about my mother; things she never spoke about because they are her memories.  I think when she shares something new with me, she may possibly be in that time and I get to join her there.

The days are long and challenging.  My mother is a wanderer.  It’s not easy, and it’s not going to get better.  Some days are good, others not so good.  This rapid decline baffles her healthcare team.  I told them it shouldn’t because she has always done things in a timely fashion and quickly; she’s not a procrastinator.  She’s about 1 year away from Stage 3. Her short term recall is gone.  She no longer knows what day or month it is.  I cue her to do things.  I ask for her opinion, ask her to help me, engaging her in daily tasks and or decisions. I want her to feel independent and to know she remains the matriarch of the family.  I recognize she sees herself whole and healthy.  I can accept the reality of what my family is faced with. What I can’t accept is living the doom and gloom about it.  Despite the illness, we are a very strong family.  The focus is to ensure that Mary has an amazing quality of life each and every day.  Our home is filled with an abundance of love, incredible love and the support by our closest family friends. Make no mistake, we laugh and smile daily.

One of the hardest things I’ve ever done, together with my siblings, is plan the rest of my mother’s life and the care she will require.  I know in my heart I selflessly do everything I can possibly do to care for her, love her, keep her active, stimulate her brain,  to hold on to her as long as possible. One day when she needs the constant care and I can no longer look after her at home I will let go as painful as that may be.  Right now, today and each day, I look at my mom and think, ah, the gift of Mary.  How blessed am I to have an amazing mom, cheeky but amazing. I am so very proud to be Mary’s daughter.

My 5 things on my gratitude list for today:
1.  Grateful for the ongoing teachings my mother extends.
2.  Grateful my dad continues to be positive and does his level best.
3.  Grateful for the support network of friends who reach out to me daily on social media.(another reason why SOA family is amazing).
4.  Grateful she is #StillHere and knows us.
5.  Grateful she didn’t swear today (she could be a millionaire from her own swear jar as my sister puts it……please laugh with me).

If I could wish upon a star right now, I would wish for guidance in understanding why my mother, a breast cancer survivor is on a memory loss journey.  I just don’t get it.

Being a caregiver is a tremendous responsibility and very humbling. I’m told constantly I have to look after myself.  I can tell you it takes approximately 1 year to arrive to some sense of balance.  I’ve done all the hard stuff.  All I have to do now is keep loving my mama, and when she’s at her ‘club’ a couple of times a week, I can get to that hot yoga class and do something for me.  To all who have been through this journey and to those coming, my heart aches for you. Be patient, be kind to yourselves and love your loved ones ~ the blessings are there.  Reach out to me anytime: Twitter: @hoistingmysail  Instagram: @sophiafinalride
I’m more than happy to support you, listen to you, and hold your hand from afar.

Thanks for taking a minute with me.

God Bless You All
Sophia Sarantakos

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