Anticipating the next stage

April 4, 2017 / In Dementia Memory Loss / By Nadia Almaleh


Where can you live when you keep changing?

My mom received a call from the social worker last week, asking for a family meeting to discuss “care options” for my dad. Translated: Bryan isn’t a good fit for living here anymore because he is refusing personal care and becoming less tolerant when his routines change. Routines change in all of our workplaces, and for health care workers who spend their days caring and interacting with people living with dementia, a planned holiday or trip to the dentist, equates to a major ‘routine’ change; at least it does for my dad. With this backdrop, we will head into Thursday’s meeting with our eyes & ears wide open. We are advocating for my dad, yet we no longer live with him or see him at his ‘worst’. When we visit, he is generally happy to see us, or at least agreeable to do whatever activity we suggest. When he is at his worst, which is generally with someone new or someone who provides personal care who he does not trust, he is stubborn and agitated. These behaviours, although understandable, are not ideal and they represent a change in behaviour that will ultimately lead to my dad having to leave his current home where he receives tremendous care, and lives with peers of relatively the same age. We can not bring him home, so, the next “logical” step is that he will be on the ‘accelerated’ list for long term care.

I recall my mom spending time, agonizing about when would be the right time to move my dad from the family home into a care environment that provided more support. Now, two years later, we are facing the same emotions as we work with his social worker, personal support workers and nursing team, to figure out the next stage of living for my dad.

Mindfulness helps me to listen, digest and learn without judgement. Since I tend to create stories about what long term care is, and isn’t, I use mindfulness to reset. What we are meeting this week is all about exploring current living choices and care options, for today. I am sure we will also talk about options for where my dad will continue to live his life, but for this week, it’s about care options and how he can live life within his current environment.

When we do talk about where he will Iive next, I have decided to keep a running tab of the activities he seems to enjoy today. Not what he used to like, and likely not what he’ll like tomorrow…but what he likes today. I know he loves to walk, so it is important that he live in a place where there are long hallways that are safe. I know he loves to eat, so let’s learn about how the food is prepared, and whether or not he can smell the kitchen with a pot of chili as it cooks down for dinner. I know he loves visitors, so let’s find a place that is close by. Let’s learn about what the living provides and match that for what he needs. It’s time to take a new approach – let’s figure out what he needs today, and then look at the options that fulfill this. Next, let’s consider what he will need in 1-2 years time, and ensure our options can accommodate. Moving him again will be a major adjustment.

Even though he has dementia, he gets it. Change is hard for all of us.

Thanks to our Friend Carolyn Duckworth with Care2Care.

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