Road Maps : navigating a journey of transitions in dementia care

Life is full of transitions. Whether we are consciously aware of it or not we are in a constant state of subtle change, in activities we engage in, friends we talk to and clothes we wear. Then there are the BIG changes, graduations, marriages, births, deaths. Transitions can be expected and anticipated like a new home or a baby. They can also be unexpected like a illness or sudden job loss. Whether positive or negative, expected or not - change is hard. Many of us experienced that first hand recently with the springing forward of our clocks. Maybe its just me but that teensy little hour can throw me off for days.

The thing about change and transitioning, though we all experience it, we all have and need different road maps. When I worked in the hospital with families learning for the first time the their loved one has a irreversible form or dementia and that they are no longer safe to live on their own, it was devastating, shocking and overwhelming. Once they composed themselves they hoped I could give them a road map, a check list, a answer to “now what?”.  I was able to give them logistical resources, places to live or home health options, some information on the progression of the illness, but I knew that these pieces of paper were not the whole roadmap for the journey ahead. I could not in the single meeting fully prepare them for the emotional turbulence they were entering.

Elizabeth Neeld writes in her fabulous book Tough Transitions about how transitions are not a tidy checklist, its not a straight road with visible road markers, its messy, scary, unpredictable and eventually, as we ease into our new normal, there are new unexpected kinds of beautiful that can emerge, but it takes time, work and trust in the next step.

Working with families now I am able to give them more than a piece of paper. I’m able to help them emotionally navigate the fear, sorrow, anger and grief associated with watching a family member struggle with dementia. I am able to process the restructuring of the family systems as new roles come into place, new lines of support need to be built and healing connections become more urgent. Throughout the journey there are new unexpected challenges and joys. It has been a honor to accompany families on these journeys of tears, hugs and laughter.  

A few things to keep in mind as you journey through transitions:

• Allow yourself grace, acknowledge that where you are right now is hard but that YOU can do hard things.
• Remember your why, what values motivate you? who are you showing up for?
• Take care of you take time to grow strong and stay strong because if you don’t care for you, you won’t be able to care for them, you’ll be empty.
• Learn new ways to love your person, love is not always shown and received in the same way, reevaluate, try new things, new ways of connecting.
• Ask for help when you need it. Create a team to share the load of the physical and emotional journey together.

As I’ve mentioned before life is full of new opportunities to love and be loved. Approaching transitions as a opportunity for growth and renewal will not make it a skip in the park but it will empower you to scale mountains you never thought you could.