Heidi here - Just in case you might not have seen this post from Gina yesterday:
Greetings, friends. There's no easy way to put this. The love of my life found her wings and is flying free in the big forest in the clouds. She left on her new journey late last night. I tried to surround her with peace, love, and comfort as she transitioned; I know she is feeling great relief free from her failing body. I am devastated; it came too soon, but I am glad she is no longer in pain and frustration.
It is snowing here this afternoon. I can't help but believe it is she spreading her love, one flake at a time amongst all of us who loved her, as she loved all of us. Give your loved ones an extra hug this New Year's Eve as we start afresh, but move on with a huge hole in our hearts.
Thank you for all your friendship and support. We really appreciated it all.
So, we had a bit of a scare on Christmas Day and had to have a hospice nurse visit about 10pm that evening. Vernie had not been doing well for several days; she was very fussy and since she was unable to tell us why (much like a 2 year old) all we could do was to up her anxiety and pain meds - which pretty much knocked her into zombie-ville. The issues have been addressed and she has perked back up a little.
Vernie is one of the "lucky" 5-10% of ALS patients who also get 'FrontoTemporal Dementia'. So, not only is her body failing her, parts of her mind are also (no Steven Hawking here). FTD affects the ability to understand or formulate words in a spoken sentence, among other things. So, not only does she struggle to communicate physically (see her attempt here), she struggles to find the right word, to spell it right, and to put it into the right context. It has made this journey we're on that much more challenging and frustrating. I made her a 'picture board' with photos of some of the basic things she may want, but that is limited to things like - bathroom, air, food, etc.
In desperation I reached out to Team Gleason for any recommendations for programs or apps that would be more pictograph oriented so she could just point to something depicting what she is trying to say. Gleason's foundation's mission since his ALS diagnosis is to provide tech support to ALS patients (see the movie - GLEASON). I didn't have high expectations, but the folks at Team Gleason (please see the movie!) did get back to me, and after a wonderfully supportive conversation, they are sending us a new SurfacePro with 2 programs preloaded that they think may help us! At no charge!! I am so thankful to the Gleason group for their support! (see the movie!)
Now that she's in bed, she'll have to stay put more than she did when in her big chair. We'll use a different type of lifter, called a Hoyer, which I need help to operate. It lifts her completely, in a sling. I'm learning how to roll her side to side, to change dressings and clothes, and how to move her arms and legs to try to keep them as limber as possible by myself. And, thanks to everyone who contributed to the Fundly account we can pay our pro-caregiver for 4 more hours each week, which will give me a little more time for some self-care so I can maintain my own health and strength so I can continue to care for Vernie.
I'm afraid we're now on the downhill slope of this path we're on. Not sure how much time we have left, if you think 'take each day at a time' is a cliché, it surely isn't! Take it, and make the most of it. Thank you, all, for your support and friendship!
From Gina and Vernie::
Thank you SO much for your donation! Please know that we appreciate everything our friends, colleagues, and family have done for us! They say ‘it takes a village’, and we surely know that to be true, thank you for being a member of ours! We hope you have a lovely holiday season! Hold all your loved ones tight - in your arms and in your hearts.
Can’t donate? Please share. Even a quick share on Facebook can help.
The average share raises $97.
Looking to raise money?