Emma Willis

wose · September 14

I know everyone’s journey is different and some of us are at different stages but I read a quote yesterday by Emma Willis when asked how they’re coping. She said caring for someone with dementia is like “ living in a constant state of grief “ That statement is stuck in my head now cause it resonates so profoundly. I know we all try so hard to put sunshine and happiness in each day and sometimes we accomplish that. But it all seems to come back to that profound grief even in the midst of sunshine.

Dan520 · September 14

I agree. Unfortunately.

persevere · September 14

My grief comes and goes. Mainly during calmness. Otherwise I have always appreciated the term hyper vigilance. That’s what I feel most of the time.

Biggles · September 14

i think that describes my existence really well. My DH and I do lots of things, lunch time picnics, Sailability, the dog park, Morning Melodies but I am always ‘just on the edge’ . One kind word, one understanding statement, a certain song, or even a thought and the tears well up, the sunglasses go on, and I turn away. It's a constant state of grief.

dcare45 · September 14

This is true. Both the grief and vigilance. Even on the "good" days when we play along and we're smiling and we are pretending we can handle this. I will look at my DW and it strikes me, where we REALLY are, where we are really going, and there is no changing it. Grief and vigilance with no relief.

RMremdler · September 14

https://alzconnected.org/discussion/77099/emma-willis

agree. There’s a piece of our LO that is gone. Never to return as the same person. I grieve with each thing or new/different behavior.

Barbie300 · September 14

I feel on the edge of tears at some point every day. Any sad movie, book, etc can put me over the edge. It’s also the reminders that I’m losing another part of my DH once again. I also find it disturbing that I get so little empathy from people I know, especially religious types that one would think would show some caring.

marier · September 18

I am hyper vigilant and the tears and sadness remain so close to surface. It truly is a "Long Good by".

pattymbr · September 18

My husband is in Memory Care now since February. I am finding it hard to visit as I was going everyday. I was going to go today but I’m not going to go. So this will be 3 days of not visiting. It’s extremely difficult not to feel guilty about not going. I’m trying to get out of this depression but it has been difficult.
thanks for listening!

blacksparky · September 18

https://alzconnected.org/discussion/comment/282527#Comment_282527

Like me you made the hardest decision of your life by putting your DH into MC because you knew he could get better care there than what you were able to do. Don’t feel guilty about not visiting everyday. I started visiting everyday and have now settled on 3 days a week. I originally felt that I needed to visit everyday because of my guilt. Now 3 days a week is working for me as I have time now to start figuring out my new life. I now am excited to see my DW each time. My DW doesn’t remember that I visited her yesterday or a week ago. Give yourself a break and try not to let guilt creep into your decision to place your DH. You’re an awesome person!!!

pattymbr · September 18

thanks so much!

Lucy'sMom · September 19

One thing that stuck with me about Emma Willis’s book was when she shared "stay here, don't go there". I have a daily alarm that tells me this. It helps me with the fear and the profound grief.

Emma Willis

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