Life was busy, wonderful, full and moving at a pace that was manageable for my husband Michael & me. It was filled with what life offers – family, friends, our personal faith in Jesus with a great church family, lots of bills, challenges, daily chores, work, action movies and more to fill the calendar each day.
Life was great but a slow weaving in of changes that made me take notice of Michael’s behaviour & actions began. There were hints of cognitive processing difficulties, forgetfulness in paying bills, a slow erosion of social skills and manners, repeating phrases in emails, driving skills, decision making and getting lost twice from familiar places. Michael never got lost and I depended on him to direct me home so many times because I was the one with a direction deficiency. In the beginning years of our marriage Michael would try to teach me North, South, East & West but to no avail because I would always say we are going forward.
I wanted to ignore these assortment of changes which seemed unconnected and one – off over a period of time. Was this change due to the normal aging process, life stress or what? I did not have an answer or where to look for an answer but I knew ignoring it was not the way or the right thing to do.
Well we prayed and God answered. We connected with Nira Rittenberg OT and Dr. Paul Verhoeff, Staff Psychiatrist at Baycrest in March 2016. After many appointments, a battery of tests, meetings mixed with a roller coaster of emotions and hoping Michael was going to be ok, the verdict came with his diagnosis - Semantic Dementia.
The journey with Dementia is not a sprint but it is a marathon.
My heart is broken, my spirit crushed, our immediate & extended family stunned and Michael is not understanding what this means for him & for us in the present and for the future. Living life in denial, feeling overwhelmed, struggling with a range of emotions including grief, an incredible sense of loss, losing what little control of life I thought I had -- this was the fallout for me from the diagnosis. I could live life by just coping for Michael and for myself BUT that is NOT how I want to live.
Life is to be lived despite the diagnosis Michael has received. The diagnosis, the disease can only beat you down if I /we let it. Michael & I made a promise when we got married “for better or for worse” and this definitive was for the worse but it will not win. We will choose to live victoriously and many times it feels like we are losing but it is a choice to fall and then get up again to fight which we believe is the help that God gives us.
I did not want a new title or role but with the diagnosis it came. I am a primary CAREGIVER which includes many sub roles such as, problem solver, advocate, teacher, helper, defender, protector. I noticed the many sub roles jockey to have a prominent position and I needed to remind myself that I was a wife above all these sub roles attached to the primary caregiver role.
It has been 2 years since our official diagnosis and the words of many professionals we met at the Road to Connection at Baycrest rings true, which is: the journey with dementia is not a sprint but it is a marathon.
Our marathon is 2 years young and on the way we have been touched and blessed by kindness, compassion, unconditional love & acceptance by many at Baycrest, Aphasia Institute, Kipling Acres Adult program & many strangers. Our immediate, extended, church family & friends have showered us with love, encouragement, prayers, and continue to cheers us on to run this difficult race.
Michael and I are confident that the God who created us, loves us, is with us in this journey and we know this by the blessings having family, friends & professionals caring for us.
God has the final say in Michael’s life – NOT DEMENTIA. Michael was diagnosed with Dementia but the whole family feels the impact in different ways and will continue to stand strong as individuals and as a family to fight for Michael and to live life to the fullest, despite the diagnosis.
How you can help write our next chapter
With additional funding, more programs, like Baycrest’s The Road to Connection can help people like Ruby identify resources available and support needed when a loved one is diagnosed with dementia.
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Our Next Chapter highlights the connections between our residents, patients, families and staff. These stories underscore the ways in which we are working together to fulfil a promise to realize our vision, and the important impact of committed supporters.