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Early Onset Dementia Alberta: EODA.CA

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 Dalyce and Glenn July 2014My husband, Glenn practiced as an anaesthesiologist in Edmonton and Calgary for over 30 years. We were happily married, working hard and living well until a diagnosis of early onset Alzheimer's disease just as Glenn turned 55 turned our world upside down. His medical license was pulled the same day and the cash tap turned OFF. A terrifying whirlwind ensued: we sold our Brentwood dream home and relocated to a small bungalow in the walkable MacKenzie Towne community; the long, paperwork intensive process of applying to collect on disability policies began (we liquidated most of our sellable assets to get us through the interim); we met with multiple specialists and heard over and over that they had very little to offer for treatment and Glenn started taking Aricept. We struggled to make sense of what was happening and both of us entered a period of significant fear and depression. We cried until there were no tears left. Glenn spoke several times of ending his life because he clearly understood the long term implications of his diagnosis. I had managed Glenn's practice and our busy lives for the past many years, but after distressing and worrisome meetings with a financial planner I began at 54 to search for full-time employment. Shortly thereafter Glenn had to surrender his driving license. As his increasing dependence put great strain on both our relationship and health so the search for practical support and emotional counselling began in earnest. We were immensely fortunate to find an early-onset support group where we found our struggles were far from unique. Everyone’s' efforts hit a similar wall: support services, day programs, counselling - everything was geared toward SENIORS. My young and otherwise physically healthy partner revolted at being lumped in with 70 and 80 year olds. Being bored or condescended to makes his every negative behaviour so much worse. Now as symptoms worsen so does the disconnect between what is needed and what is available. So with others I write and call and plead with everyone and anyone who will listen: to keep my husband at home and out of institutional care for as long as possible. I have hired care aids but he needs day programming that is appropriate and supportive and that takes into account the fact that I am working 40 hours a week; somebody has to pay the bills. And somehow I have to look after my beloved husband who poured years of his life into health care for Albertans. I'm losing him. A piece at a time. My former physician husband, the bright, funny, kind and hard-working love of my life, is now a very much simpler man. He needs support to be as independent as he can be for as long as he can be.

Update: 2016
In the last six years a pattern developed: a period of decline, some levelling off for a while, then another period of decline, but each time he leveled off it was at a lower level of functioning. Until you've actually witnessed it, it's hard to picture just how much loss of short-term memory impacts a person's ability to function. As Glenn's disease progressed, his need for support increased: first Home Care - someone to come in and spend time with him and help with simple activities like making lunch, doing laundry and getting out in the community biking or walking. When home care was no longer sufficient we switched to a program called Self-Managed Care in which AHS essentially subsidized the cost of hiring private caregivers. I continued working full time and needed to feel like Glenn was safe and well looked after so I could focus on my job. That led to contracting with a care agency who could manage staffing. A company called Granddaughters Personal Care, Inc. did a spectacular job of sourcing just the right caregivers for Glenn and worked with me as his needs increased. By Fall of 2015 he could no longer be left alone, ever, and while he was still continent and otherwise healthy, he needed cueing and supervision for every activity. Paid caregivers were scheduled with him ten hours a day while I worked and whenever I wasn't working, I looked after Glenn. We packed a lot of living into those six years. Lots of adjustments and accommodations were needed and many activities were not what they would once have been, but I did the best I could… until I just couldn't any more. December 4th Glenn moved into long-term care. It's been a positive transition for us. The facility meets all our needs: it's brand new and looks like a nice hotel, Glenn has a large private room with a big window, it's only ten minutes from my house and it's easy to stop in on my way home from work. The caregivers have been kind and accommodating, and the food is good!  Glenn is completely accepting of this new arrangement which makes things so very much easier for me. I sometimes wonder if it is the physician in him that just "gets" that this is where he needs to be now. He has never once blamed me, or given me grief about the decision to place him in residential care. I think he has periods of awareness that he is continuing to decline. It's sad and it's frustrating for both of us. While we see each other often, the harsh reality that "I can't fix this for him" is my daily heartache. After years of wishing I could just get "a couple of hours to myself," now I am home alone. And being home with Glenn away is very different from being home, alone, and knowing he is never coming back.

It was irritating to me in these past years how many people would say to me, "You need to look after yourself. I hope you're looking after yourself."  Whaaat? What does that look like - exactly? I "managed" very well for six years of looking after Glenn.  I put one foot in front of the other, I got things done, and I took very good care of him. What I didn't understand is that there's a difference between 'managing,' and 'coping.' I managed very well, but I didn't cope well at all… because my entire focus was on caring for Glenn and for me that meant denying or burying every emotion of my own. I just became numb. So I got brittle and one day I just imploded. Nothing big or dramatic; I just got to the end of my rope and I knew I needed some help. I have no idea what the process of reconnecting with my emotions is going to look like but now I'm meeting with a grief counsellor. I hope it helps.

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