Alzheimer’s is robbing me of my mother

I originally started this blog to chronicle our travels when we moved to Japan to teach English for a year. For the past several years, our family has also been on a journey of a very different kind as we’ve watched my mother gradually spiral downward and disappear into the depths of Alzheimer’s disease but I haven’t felt at liberty to blog about it until now. Until recently, my father, who is a very private person and also Mom’s primary caregiver, has been one of my most faithful readers. Out of respect for him, I didn’t share our journey publicly but now that his very old computer has died and he’s discontinued his internet service, I feel free to write about it.

I still remember the summer visit several years ago when I first had an inkling that something was wrong. I mentioned one of Mom’s grandchildren and she had no idea who I was talking about. Her question, “Who’s Jessica?” was for me one of those life changing moments when my entire world seemed to shift on its axis. I lay awake at night wondering what the future would hold and experiencing for the first time a deep sense of anxiety that has become more and more familiar to me.

Over the ensuing years, the mother that I grew up with has disappeared and parent has gradually become child. It has been a fairly slow decline. Many times, Mom would seem to slip very noticeably and then plateau for a time giving us a chance to get used to the changes before more drastic ones surfaced. Unfortunately, Dad seemed to be in denial for the longest time making it impossible for us to discuss the situation with him or to be of much help. It’s only in the last year that Mom’s condition has been clearly identified as Alzheimer’s disease and that we’ve been able to talk about it openly. The situation is made worse by the fact that my sister, my younger brother and I live in Alberta while Mom and Dad are here in Vancouver. Only our older brother, mentally handicapped and himself living in care, and our oldest son Matthew are here at the coast. We really can’t saddle Matthew, in his second year of a law career, renovating a house and parenting two very young children with the responsibility of watching out for his elderly grandparents. He and Robin visit as often as they can and do their best to keep us informed of any changes or problems that they notice.

The blessing in all of this, if there is such a thing, is the fact that Mom’s decline didn’t begin until she was over 80. Dad retired at 59 and they spent the next two decades following their dreams and travelling the world. They visited over 60 countries spending more than a year in Europe and 9 months in Australia. (I come by my gypsy blood honestly!) They took their last big trip 8 years ago when they flew to the Dominican Republic to celebrate their 55th wedding anniversary.

For the past few years, it’s been a chore to get Mom to leave their apartment. Now, at 89 years old, she is incontinent, legally blind and confined to a wheelchair. Though these infirmities are fairly recent developments, in Mom’s mind she’s suffered from them for most of her life and she’s constantly coming up with fanciful explanations that are in no way grounded in reality. Last night she told us that people are trying to poison her with peanut butter which has always been a favourite of hers! Sometimes all we can do is laugh. It’s either that or cry. She’s clearly in the sixth of the seven clinical stages of Alzheimer’s and needs constant care and supervision.

After 63 years of marriage, Dad refuses to allow them to be separated and insists on caring for her himself. He’s clearly wearing out and we don’t know how much longer he’ll be able to keep this up but he’s of sound mind and has the right to live life the way he chooses. There are those who suggest that we, as a family, should try to force him to put Mom into care but we are firm believers in the fifth commandment and we know of no other way to honour our parents than to allow them to live out their final years the way they want to while being as supportive as we can given our own circumstances.

This, of course, means more frequent visits. This is our third trip to Vancouver this year and each of my siblings has also been here. When we’re here, we thoroughly clean the apartment, a job that Dad has a hard time keeping up with these days, and try to provide opportunities for him to get out and have a break. This week, he even went on a forest adventure with great grandson, Sam!

Having Matt, Robin, Sam and little Nate here in Vancouver is indeed a blessing at this time in our lives. Visits to Vancouver would be much more difficult if we didn’t have them to stay with some of the time and, of course, grandchildren provide such wonderful stress relief!

Mom with her youngest great grandchild, Nate, in March 2011

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16 Comments (+add yours?)

  1. Deborah
    Dec 27, 2011 @ 17:10:31

    Oh Elaine, my heart hurt for you….

    Reply

  2. Norman
    Dec 27, 2011 @ 18:40:34

    Thank you Elaine for writing this. During my visit in September I had several very sweet and tender moments with Mom, where we were able to connect and love eachother. I am very greatful for this time, and all the years with Mom. Despite her confusion and difficulty I also saw her strong will to keep going, and to stand up for herself. I also saw the great difficulty and commitment from Dad, in looking after her. Through this I connected with Dad in perhaps a deeper way than ever before. Thank you Elaine for helping them, for giving Dad a break and something to look forward too. I am very proud of my family, at the same time I am having a cry.
    Love, Norman.

    Reply

  3. A Fine balance
    Jan 06, 2012 @ 12:55:30

    I cant even imagine what you’re going though :S goodness how hard it is to see the people you care about getting sick. My grandmother had ALS and we lived with her during her 10 years of illness it took a toll on the family, but my grandmothers husband did as much as he could to take care of her. in the end it did make him sick as he ended up suffering from multiple strokes.

    but sometimes when you love someone so much thats all you can do…be around them, love them, no matter how painful

    my thoughts and prayers are with you.

    Reply

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  12. Cathy Cook
    Apr 20, 2014 @ 16:43:50

    Hi Elaine

    It is your cousin from ontario, Cathy, marybeth’s daughter. Mom told me about your blog yesterday and I have been catching up since then. Email me when you have an opportunity.

    God bless,
    Cathy

    Reply

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