Sometimes I just cry....

I'm sorry if it makes you uncomfortable.  I can be mid sentence and tear up.  My heart is aching, its a heaviness all the time.  I will be ok but sometimes I cry out of nowhere.  

It's hard enough to know Jean's body is failing him...sometimes in ways he doesn't share with me. I have to ask him very specific questions or ask Makenna to ask because he's more open with her.  I don't know if he is trying to protect me or if he feels I'm over-reactive to his issues and will report to the doc (that's usually what I do as symptoms drive the disease and remedies for the symptoms). But this dementia thing with a man so young is cruel!!  Our youngest JUST graduated last June and here we are preparing to watch this long goodbye ending.  I'm really mad about it all!  Trying to prepare financially, socially, plan for adjustments to the house to prepare for wheelchair accessibility, all the questions of what will happen first, who am I now, who will I be in a few years, will my relationship with my kids always be cautioned about what to say to me so I don't get upset...gosh, all of it! 

Our daily is still pretty much the same, he watches tv most of the days.  He doesn't even go out to clean the fallen trees like he did all summer.  His arms/shoulders are weaker and he is falling into sedentary life.  He doesn't say much until after dinner when his stories of his youth come out to share with the kids.  "Did I ever tell you....."  The kids are so great about it all.  We do approach most of it with humor and it makes it so much easier they are here to distract him for those few hours at the end of the day.  I visit with him around my own work and sometimes we take a drive. 

I try to talk to him....our conversations are successful around current news stories but not much more.  His answer to most things now, "I don't know" and it makes me so sad....he was the one with the answers!  

He looks great, yeah!  He puts his best self forward when others are around and if I dont document the changes, he doesn't really either.  People ask him how he's doing and he replies "not good" now.  He chose to give up driving (don't worry we still take him for that 8am and 2pm coffee he needs).  His weakness scares him and he is adamant about not going into a wheelchair or using a feeding tube for his nutrition.  Right now he eats normal food but has had a few scary choking incidents so we don't leave him alone.  He eats only on schedule and doesn't snack so grateful for that.  He hasn't lost any weight, which is one of the things they watch in ALS.  We will meet with palliative care at the end of the month as his concerns around his decline are very concerning to him...he says he wants to be euthanized.  Its heartbreaking.  Maine has the Death with Dignity Act and if Jean can control the narrative of his own story, I've got his back on that!  I don't know anyone who would argue.  He is not in a winning situation and each day that passes, he sits and thinks.  I'm taking all the hugs I can get from him because I know what's coming. 

The girls sent me a clip of Mark Kopp who also had ALS and his story is/was so much like Jean's path.  Jean has no weakness in his legs so he is able to ambulate to the bathroom but the upper arms/chest/breathing/coughing are the concerns and it's scary for him.  Mark also could ambulate but he was on his bipap machine for 24 hours and lived in his recliner too.  Mark passed last week after difficulty with his breathing.  If you're interested, he's on TikTok @MarkKoppFoundation.  He was married to a beauty queen named Nova and she's so great about the posts it makes me feel less alone. 

So strange how the days just pass by....we are now almost one year into this!  I am fighting for him to get long-term disability and they are fighting me because he was fired one week before his diagnosis. Thanks to a dear friend who read my story, saw my plight, and hooked me up with Andrew Davis, Esq. a bulldog in the fight as he used to represent the companies we are up against.  Im grateful for all the help.  

Here we are at our nephews wedding last weekend.  I'm so grateful we can do these things!!

Is there anything you'd like to hear from me?  Thanks for being here!  I'm grateful for YOU!

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~Kel