So much can change in a year.
January is Alzheimer’s Awareness month. I feel especially attached to this date because our Alzheimer’s journey began around this time last year.
Last year at this time I wrote an article about Alzheimer’s for our local newspapers. At the time we were in the thick of my mother’s dementia and delirium. We were uninformed and frightened. I felt like my mother had died – literally.
A year has passed and although her circumstances are still difficult and far from what we had ever hoped for her, I’ve begun to see that we haven’t totally lost our mom – we just have to look harder to find her.
This Boxing Day we got to experience one of those moments. Mom was well enough to come and have a meal with us. The last time that happened was the day we took her to the hospital, over a year ago. As long as Mom is still with us we will continue to seek out these sacred moments and cherish them for the miracle they are.
So in light of Alzheimer’s Awareness month, I am going to share the Alzheimer’s column that was published last year and the one that will be published this year. Where ever you are in your caregiving journey, I hope you are encouraged.
By: Sharon Osvald Originally Published in the Northumberland News and The Brighton Independent January 20, 2011
Sometime during the Christmas holidays I lost my mother.
Looking back I’m not really sure when I lost her. If truth be told, it started in tiny ways a long time ago, but it wasn’t until September that the signs became impossible to ignore.
The witty, extroverted, spiritual woman I’ve leaned on and looked to for support and friendship still exists in body, but her mind and personality are gone. In their place is an angry, frightened, paranoid stranger who can’t carry on a conversation and wants nothing to do with the people around her. While her long-term memory for people and details is still amazingly clear she can’t read a book, sit to watch her favourite television program or remember how to work the hot- and cold-water tap.
Dementia we call it, although it is so new to us that we don’t actually know the cause or have an accurate diagnosis. We just keep hoping and praying this fog will lift and it will all be some kind of terrible mistake – a simple medication mix up or result of grief and loss.
For a short time on Dec. 31 the fog lifted. She talked with us, joked reminisced and laughed. She hugged and kissed us, patted nurses on the back and told us how great it felt to finally be having a good day. Our hope soared. But when we left that day she looked me in the eye and with a frightening sense of clarity, told me she might not wake up this way tomorrow.
That was the last good day she has had so far. I have not been able to find that mom since.
Anyone who meets this new mom of mine now will probably not like her. She is unfriendly and does embarrassing things. She is not the welcoming former elementary school teacher and public speaker who used to preach and lead Bible studies and children’s programs.
I lost my mother during the Christmas holidays, but there will be no funeral. There will be no glowing eulogy or talk of happy memories as we release this beautiful 81 year old and celebrate a life well spent. Instead we mourn a little every day and say goodbye minute by minute while we watch her fade into a stranger.
January is Alzheimer’s month.
I am thankful a time has been set aside to shine a little light on the people that live in this darkness and their families. Special thanks to the caregivers, without whom we would be completely lost.
One Year Later: By: Sharon Osvald Published January 2012
January is Alzheimer’s Awareness Month. I have learned a lot about Alzheimer’s and related dementias since this time last year. In fact, a year ago I submitted a guest column to this paper sharing how I had lost my mother to Alzheimer’s disease.
I have experienced much since I submitted that column and have often felt the need to write a retraction of sorts. As it turned out, despite the loss, the grief and the changes to my mother’s personality and understanding, I did not lose her. Not yet. I learned she is still very much “here”.
I just need to look harder now.
I learned Alzheimer’s is a terrible disease. It slowly robs us layer by layer of the person we know and love. It often leaves them tormented, paranoid, afraid and unpredictable. There have been many ugly moments this past year. But, I have learned something else too. I have grown to admire and appreciate the amazing caregivers that exist in our area and the magnitude of the jobs they do. The love and care I witnessed while Mom was at the Trenton Memorial Hospital, Applefest Lodge and her current home, Maplewood is second to none! I’ve grown to recognize the value of our local Alzheimer’s Society and what they do for our community. I have met brave and encouraging spouses and children whose hearts are breaking – but still they visit and care for their loved ones faithfully. I’ve also been privileged to write about my journey at www.mymotherscaregiver.com and find a whole community of like-minded people.
Through all of this, I have learned to enjoy the good moments. You know the moments I am talking about. The days your loved one is well, lucid, funny and “in the moment”. Conversations are intimate and clear. You feel a sense of sacredness like you’re experiencing a little miracle and this might be the last time they are this good. This Boxing Day for the first time in over a year Mom was well enough to come to our home for a meal. It was a short but wonderful gift I am so thankful for. I resolve this New Year to enjoy these moments for what they are without pining for them on the days that aren’t good.
I’ve also learned to live without regret (ok, most of the time). Looking back at “What if?” and “What could have been?” is an exhausting and pointless exercise. I resolve to concentrate on what I can do and let go of the rest. I also resolve to share the burden- not just mine- but others who are carrying the weight of this disease. Helping each other just makes the load lighter.
The day may come when she doesn’t remember me and those little nuggets of sharing and knowing will be gone; it will break my heart. But even then, I will try to find “her” in a smile, a hug or the twinkle in her eye. After all she’s my mother.