What They Don’t Tell You About Being a Caregiver to Someone Living with Dementia

Your loved one begins to feel scatter-brained.  They’ve lost their keys. Again.  They forget about the dinner you had planned with friends.  They forget the milk and bread that they went out to buy at the grocery store.  You dismiss these occurrences, because, well who isn’t busy these days?  Things progress.  They get agitated when they are confused.  They lose their way.  Dementia runs in their family.  They don’t want to talk about what is happening, for fear of a diagnosis.  Shame, stigma, labels all cloud these conversations.  The doctor’s appointment is delayed as long as possible.

Eventually that diagnosis comes.  As the caregiver, you implement coping mechanisms to help your loved one manage throughout the day.  You adopt a big family calendar to keep track of where everyone is going, and what important appointments cannot be missed.  You simplify your routines, by implementing processes that will simplify the adoption of routines- same white shirts for weekdays; leaving the keys in a dish by the door; setting reminder alarms on your phone to remind to take medication.  You focus on healthy eating, regular sleep, socializing and exercising regularly.  You become the keeper of the memories, and you discuss them regularly to encourage your loved one to remember.

The disease progresses, there are more unsettling outbursts when your loved one feels scared, confused and unsure of how or why they are losing control.  They may still have good days, or lucid moments- it is not a straight line.  What worked yesterday might no longer work today.  The processes and routines that worked for so long are no longer enough to get them through their day.  They need more interventions in the home, more care, and it is taxing on you as a caregiver.  Your own mental health suffers, as you are feeling more and more burnt out.  You are unsure how to continue to provide good care.  As these shifts in the disease pathway occur slowly, the changes seem incremental to you, as caregiver. Only when you look at a higher level do you notice the global deterioration.  As more and more of your day is tied up with caregiving, there is less and less time for yourself.  Soon you are feeling fatigued, stressed, and overwhelmed.  You don’t know where to turn for answers, and the whole process of fighting to get what you need is crushing. Your network of other caregivers sharing a lived experience dwindles as everyone focuses inward and tries to survive.

This is what, intuitively or through lived experiences, many caregivers feel and experience.  It brings on feelings of guilt, caregiver burden and/or crisis points.  But here is what they don’t tell you:  being a caregiver forces you to shift your focus to the here and now.  When your loved one is having a good day, you embrace that, and live in the moment, and spontaneously celebrate the little things with them.  You learn that as these events are more fleeting, you don’t have time to waste.  Being a caregiver is hard work, and nothing like what people’s dreams are made of, but it teaches gratitude and appreciation for the small things in life that are share and spread joy.  You learn not to take those things for granted, and live in the moment.

This is what led us to develop Tusk: the Care Navigation Tool.  We want to be there for you during the hard times, and free up your mental space to focus on the moments and live in the present.  Our tool helps you navigate the pathway, and access resources and information to help you better cope with the diagnosis, the disease and its changes, so you can focus on the quality moments with your loved one.  Sign up today for Tusk for a 30 day free trial as we help focus on you.  And comment below to share your special moment that made you realize to be more present in the moment along your caregiving journey!

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