Focus on Caregivers Sharing Their Experience

Every person experiencing memory loss is a unique human being. Every family caregiver for a person with memory loss is a unique human being.

Memory loss plays out differently for each person. Caregiving is unique to each person involved.

As I have worked with families, I am completely convinced of the richness and value in what you have to say about your unique experiences. Caregiving is an ongoing journey that you would not have chosen to travel if you could have spared your family member their illness. But given the reality, you are on this path with them, learning about their memory loss, more about the person you care for, and yourself.

No one has to tell you that this journey has its challenges and rewards. If the truth is told, how you thought it should be may be very different that how it really is on a daily basis. It may be hard to let go of the “good” face that you put on for the world and the portrayal of yourself as someone who is always “ok” and you’ve convinced yourself that this is how it will always be. Maybe you are afraid that if you say the truth – “this is hard”; “I will miss what I used to do”; “I had to give up my (our) dreams”; “I am lonely sometimes”; “we’ve lost friends”; “I am afraid of what may come in the future, so I don’t let myself think about it”.

If you say those things or vent a bit, do you feel like you are somehow letting your loved one down? Just the opposite! Talking about your own experience has multiple benefits for you and your loved one. You are the expert on how this loss is expressing in the daily activities and day-to-day life of your family member and you are the best reports for their health care providers and other service providers. You know what they are still able to do and what they need assistance with and can best observe safety issues as they arise. You are the advocate of their inclusion. You become their voice when they are no longer able to as clearly express themselves. Your honest information contributes to the best possible outcomes.

Equally as important and for your own well-being, expressing your truth allows you to process what is happening, may bring insights, be healing, and allow you to realize your own growth. If all the “shoulds” start welling up, you may also be able to acknowledge yourself as a good caregiver and find the meaning in what you are doing. Processing aloud may also help you identify the rewards that come from this changing role you are experiencing. You also provide the opportunity for others to learn from you.

Here’s the important thing: find those safe people and places where you can talk and give yourself the chance to tell your story. Ideally, this would be someone who is lovingly supportive, who doesn’t have their own agenda, and who will non-judgmentally hear you. Support groups may be very helpful for some people and meet this need. But if you are not in one, or you still need time to have someone listen to you, then reach out to make it happen. Your unique caregiving experience deserves to be told!


Beth Belmore  |  2014

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