Headed into Christmas...

Headed into Christmas and not taking this one for granted, that's for sure!  Its simplified...the tree has only glitter ornaments, none of the usual ones we hang every year...I have no reason why, only that I didn't feel up for going through the boxes and I had the glitter ornaments here at the ready from a Hobby Lobby trip a month or so ago. Kids decided that since they are all "coupled" up this year, exchange names by couples..one big gift for both with $150 limit!  Sounds easy...but my gift giving ideas SUCK!  My girls are so great at it...I always hope I don't disappoint!

So what's new here?  Not much I am happy to report!  Jean's progress is slow now since the bipap machine in January!   He has NO ALS/FTD medications and takes a THC gummy to help him sleep...which he does 10PM-6:30AM every single day!  His life is like clockwork.  6:30 shower, 7:00 treadmill for 20 min, sit for 10 after the walk to catch his breath (breathing is still rough to watch).  Breakfast is at 8AM, lunch 12:30 and dinner at 6:10 (he waits for Branden to come home from work).  His life is by the minute over here.  He doesn't snack between meals but hasn't lost weight.  That's one of the things they tell you first thing is do NOT lose weight.  I feel like we are so lucky to still have him and I really attribute it to the NO medications and the gummies.  He hasn't had an advil or tylenol since all this began either.  He's ALL-NATURAL (well, except he does take metoprolol for the HCM and I am told it helps his breathing by regulating the blood to the heart so we keep him on it as he doesn't seem to have any side effects. 

This was his last summer of physical work.  He was cutting the trees with a sawzall and slowly packing them into the wagon on the back of the 4wheeler but in August he noticed a lot of weakness in his arms so he had to quit.  It was scary for him and us! Since that time, he no longer drives and sits in the chair most of the day and watches TV.  On Friday nights we try to get over the Run of the Mill for dinner with his siblings.  He really loves that outing once a week!  I love that he can repeat all his news stories over again for them too!  Every person in our house hears the news upon arrival.  Its one of the FTD traits. He is still pretty independent otherwise and has graciously agreed to my home-made pot of coffee over the morning Dunks on these cold days.  If I'm going to leave the house for something, I have no problem getting his treat but now that things are slowing work-wise for the holidays its kind of nice to be cozy at home. 

Now the hard shit.  

Maine has Death with Dignity...Medical Aide in Dying (MAID) and Jean wants to go down this avenue as he progresses. When his arms started to really show signs of weakness to the point he struggles to wash his hair, drive the car, carry heavier items, it scared him so much, he wanted to end his life then.  His FTD makes his thoughts self-centered.  The man who did for everyone else first has put his own needs and wants first in his mind.  Its okay but not always easy!  He is adamant about not using a wheelchair, feeding tube and NO way a tracheostomy!  We have had MANY conversations about this since we've been together.  My dad's death opened the way to some hard conversations about what we wanted "if" something were to happen.  My breast cancer (I just celebrated 7 years cancer free!) brought it to the front of our planning and preparing and I will honor his wishes whatever they are! 

If you know about MAID, you're thinking: "but he has dementia and people with dementia don't qualify" but it really depends on the doctor you're working with. We were connected to wonderful doctors at Maine Health Palliative Care and they have heard every word we have shared.  They sent Jean to a psychiatrist for confirmation that he is sound enough to decide this.   He is not ready for this step so the process is on hold for now. When he is ready, he will tell me, I will tell palliative care and they will assess him one more time.  

FTD is so strange.  Its kind of been a blessing (weird for me to say, I know).  MY Jean, my hero, the one who always took care of me and the kids, would have a very hard time with this now that we are faced with it directly but FTD has given him the ability to think only of himself and what he wants in this situation.  I am actually grateful to not feel alone with this hard decision as he is adamant!  Yes, the kids help but the pressure to make hard choices are mine, they support it for me and for Jean.  I don't know if this is how his life will end but I feel good he has a say in it.  The Plan B part of this is that if they deem his dementia has gotten worse, he will have hospice assist with meds to help him with voluntarily stopping his nutrition (food/water) and the BiPap, which will put us back to one year ago when he was such a mess and stopped breathing.

For now, we love on him and try to keep him smiling!  Its so easy with this guy...he doesn't have a mean bone in him and he's always a pretty happy guy!   Please think of us as the January 1 anniversary of that scary day approaches.  He is easy to sit with if anyone wants to check in on him in person.  He talks mostly about the tv shows/news he is watching as there's no other outside things he retains but he does love to talk about the past and sharing stories!!  

One last thing....we had an attorney, Andrew Davis, look into the short/long term disability insurance and he came through for us!!  If you need and ERISA benefit lawyer, I cannot say enough good things..google him in Maine but he works nationwide, I believe!  Kelley Smith, I owe you a huge hug and a thank you for reaching out to me in the crazy times to explain to me that I NEEDED Andrew's help....I can't imagine if we didnt call him! 

Not sure when I'll update this again so for now, Merry Christmas/Happy Holidays to you and yours!  Make peace...however you have to!  

~kel~