Frontotemporal Dementia Caregivers

Thank you Emma Willis. You are an answer to our prayers.

While I am so sad that Bruce Willis has Frontotemporal dementia, I knew his diagnosis would bring worldwide awareness to FTD. 

And now Emma's book The Unexpected Journey is going to have a profound impact on the lives of dementia caregivers around the world.

~ There are more than 11 million unpaid caregivers for those with dementia in the United States.

~ Rosalynn Carter’s famous quote ~ There are only four kinds of people in the world ~ those that have been caregivers, those that are caregivers, those who will be caregivers, and those who will need caregivers.

~ 40 percent of dementia caregivers die before the ones they are caring for. It isn’t a disease or accident that takes these caregivers, but rather the sheer physical, mental and emotional toll of caring for someone with dementia.

Let me share a couple stories ~

20+ years ago, my husband and I were sitting around a table with friends at a backyard wedding reception. Everyone was asking Rick about his wife, who we could see surrounded by friends, celebrating the recent news that her cancer was in remission. 

Then one of Rick's friends asked him, "Rick, how are YOU doing?" Rick immediately started crying. No one had ever asked him that before. 

At that moment he felt seen, supported and safe to share his story as a caregiver.

I will never forget what happened next. I heard a voice in my mind clearly say "Linda, remember what you just witnessed. Don't forget to ask the caregiver how they are doing." And I haven't. I always ask.

I also will never forget going to church soon after I had placed Randy in a memory care facility. Two dear women came up to me, expressing compassion for me, asking me how I was doing. I affirmed them by thanking them for asking me how I was doing. 

But one of them was crying and kept apologizing for the tears. I told her, "No, do not feel bad for crying, because at this moment, YOU are carrying the weight of my grief. I am not alone in feeling the full impact of my sorrow, because you have entered into my heartache". And you know what, I wasn't crying like I usually am... because she was even carrying my tears. 

Caregiving is lonely. Isolating. We don't know how to ask for help. 

So show up. Ask them how they are doing. Listen to their stories. Share the weight of their grief. Let them see your tears. Pray with them. 

And bring them a loaf of sourdough bread. 😊

Love that I got to be Randy's caregiver (August 2016)