There is a line between sanity and insanity that most of us never see. When dealing with a parent with dementia, we take their hands and follow them to that very place.

My mom rails against the inequity of her not being able to drive, not being able to do what she “always did” (twenty years ago…but wasn’t that yesterday?). She is perpetually angry…no, VERY angry, that she is no longer 50 and driving and living her life on her terms. Who can blame her? I can’t fathom losing my ability to move about freely, to drive, and to make my own decisions. It’s a cruel, cruel reality. Mom can’t rationalize it, so she blames whoever is closest. That would be Libby.

My sister Libby took on the task of attempting to salvage my mom’s dignity by finding a way for mom to live with her, her husband and her children. She did it under duress, as some of my siblings were clearly not in favour of the idea. We all knew it was risky and some said it was ridiculous. But Libby had made a promise to our mom years before, that she would never allow mom to be put “in a home”.

In fact, that very thing had happened last summer when mom was summarily evicted from her assisted living facility because she was not coping well. She was put on our Province’s infamous “first available bed” list which meant that she could be put into any facility within the Vancouver Coastal Health Region…which stretches all the way up to a tiny village called Bella Bella in the northern part of this large province. Fortunately (depending on your point of view) she was placed in our own community, Richmond. The place is called Rosewood Manor, which mom soon renamed “Rose prick”. She HATED it. Libby went straight up and sideways and vowed to get her out of there.

After a staggering amount of work and negotiating we organized a purchase of a home that would accommodate both mom and Libby’s family. It had to be large enough to separate mom from the noise of her grandchildren. She’s not partial to children in general. This was done in consultation with family, not all of whom supported it fully, but went along.

True to form, mom has developed a hate for her current situation. She is “forced” to bathe with the help of an outside caregiver twice a week. She locks the helper out of the bathroom, screams at her and generally lets everyone know that she won’t have it. In response to her profound anger about this, she is finding astounding ways to throw poisonous barbs of hurt at Libby, her children and her husband. And just in case they’re not understanding, she loads it on me as well. When I ask her if she feels safe, she says she does. But she is adamant that no one will bathe her.

This is a woman who is incontinent and cognitively impaired. She is in full kidney failure. Her next bladder infection could kill her. I can’t understand how bathing twice a week is adequate, let alone once every couple of weeks, as she evades the help that is required.

So, over this bathing issue, mom has drawn her line in the sand. She has vowed to be moved back into a “HOME” (caps added to show how she says it). She means it in spite, but once she tells this to her social worker, she may get more than she bargained for. She knows she has greater freedom with Libby, but she is willing to give that up to prove her point about bathing…tragic, because she will be bathed in a communal stainless steel tub that looks like a commercial vat once she gets into a facility. That’s how it was at Rosewood.

This is only one of the horrible issues with dementia. Mom won’t remember from one minute to the next…certainly not an experience months ago. And, if she convinces the social worker to find a care home for her, she’ll blame Libby for “putting” her there.

This twisted reality is common to all dementia patients. There is no “right”. I’m fairly certain that the phrase “damned if you do and damned if you don’t” had to arise from caring for a parent with dementia. Their reality is the only reality. No amount of talking or rationalizing will make sense to them. What they see is the true reality and you cannot influence that no matter how clever you think you may be. You will be swallowed into the vortex of their madness.