As long as I can remember I believed that some day, when my mother became older, she would come and live with me.
I'm not sure why I held this conviction, since I have five other siblings, but I did. After I got married, my husband and I spoke in terms of "when" mom needed us, we'd be there. So after my father passed away, my husband, our two teens and I moved to a bigger home -just in case. In my imaginary world, Mom and I would get up and visit antique shops, go to women's coffee break and Bible studies. She'd help with the family and we'd help her - win, win.
Two years later, at the age of 81 my mom was bright, funny and active in her community. She was still driving, owned her own home and had no notion of needing my help or my home. That all changed and quickly.
Six years ago, in August she came to stay with us for almost a month's vacation. She talked about being lonely and began weighing her options, we offered her part of our house as a granny suite and told her when she was ready, we'd be. She made it clear although she liked the idea she was not ready yet. To our surprise, she went home and listed her house with a real estate agent. Although we were willing, we were surprised since it didn't match the time line she had discussed with us on our holidays. Being a four hour drive away I only had phone calls to gadge her behaviour. Word started coming from neighbours, church and family members that she was acting strange. She wasn't sleeping, seemed anxious and chaotic in her thinking and was getting things mixed up. Since she had shown no "real" signs of Alzheimer's up to this point - and no one in our extended family had suffered from this in their older years - we attributed it to stress, delayed mourning and too much change. Despite our efforts to get her to "take her time" with the changes, the house sold and Mom just came off the rails.
She began purging the house, not sleeping at all, barely eating and acting completely out of character. My siblings, their spouses and I staged a mini intervention and talked her into staying with my brother while the house deal wrapped up. He was close enough she could still be involved in the details. In the mean time, her strange behaviours continued. She wasn't able to bathe herself anymore or complete simple tasks. With a horrible sense of foreboding we prepared her living space, waiting and praying that all this would smooth over and that the dream of visiting antique shops and sipping tea by the swimming pool would see the light of day.
One week before Christmas, my mother moved in. The first day it was clear that she was in a psychotic state, wildly paranoid, terrified of everything, mixing up her nights and days and talking scarily enough about death and taking her life that something had to be done. Hoping it was just stress and a mix of meds, four days later we admitted her into the hospital. The months to follow included her running away, a failed week in a local retirement home (with more running away), more sedating drugs and three months hospitalized, most of the time strapped to a chair or a bed. Just thinking about some of these days still makes my stomach hurt.
Finally, thanks to a psychogeriatric assessement and the wonderful team (Providence Care) from Kingston, Ontario, Mom was evaluated and diagnosed with vascular dementia and delirium. Her brain scan showed signs of little spots from previous mini strokes which caused the dementia. Delirium (the root of most of her crazed behaviour) was based on stress, a bladder infection ( at least initially), dehydration and the cocktail of medications she had been placed on to manage her sleep, depression and escape attempts. Thanks to their treatment, little by little we began to get parts of my old mom back. The delirium and psychosis decreased and we were able to re-assess the kind of a care she needed.
That May she was accepted into a wonderful nursing home just a few blocks from my house. She is not the same woman she was three years ago. The best way to describe it is: it's like someone took all the cards in her deck and shuffled them. She still knows who we all are, but gets her timelines mixed up, forgets her parents have died and has trouble pulling out the right word when she tries to speak. She needs prompting to get dressed, eat and other simple self care. Some days she remembers better than others, she's still having mini strokes and when she gets any kind of infection the delirium returns and brings with it the paranoia and not so fun behaviours.
My mother did come to live with me - but it was not the way I imagined. This is life. This is what happens. I have gone from being the child to the mother - the cared for to the caregiver.
If you are visiting this page you probably have your own story. You are either in crisis or trying to avert one. That's why this blog came to life. The most difficult and frightening part of last year's dark journey was not having answers. Although there was help, it was difficult to find. What agency did you turn to for eldercare guidance, be it home care, long term care or even temporary support? Why was the advice from the hospital discharge planner different than the access worker? What was community care access? Who was right? What would it cost?
The things I learned in the last five years about eldercare and caregiving in Ontario were learned with blood, sweat and tears. It is my privilege to share them. Enjoy My Mother's Caregiver, an eldercare road map and observations from the journey. There IS help! You will get through this! Pass on the resources and share your knowledge and insights.
Let's learn together and help each other! :)