Having 'the Talk' and other Christmas events

Jeff86

 For the first time in three years, all kids, partners/spouses, and dogs came home for Christmas.  Two live about 250 miles away and the other is on the left coast.  Everyone is vaxxed and boostered; Omicron notwithstanding, we made a decision as a family that we needed to be together again.

I’d indicated to one and all that we really need to discuss DW’s future care needs, but wanted everyone to have a chance to experience and understand DW’s progression first.  And I wanted to have this conversation at a time when there isn’t a crisis at hand.  DW is late stage 6.

The Good

We had general agreement, if not perfect consensus, on most major issues.  The kids are willing to defer entirely to my judgment as to if or when placement becomes necessary.  We discussed potential triggers for placement—among them, greater medical care needs or ongoing failure/inability to recognize me.  We also discussed potential stage 7 and end of life issues, and what interventions we would not pursue.  Everyone said yes to a focus on quality of life, not quantity.

On a separate note, DW was able at one point to address two of the kids by name.  Just once, but still.  And she told each of them that she loved them and that they are beautiful.

The Bad

We were enjoying a nightcap of coquitos on Boxing Day at around 11 pm.  Suddenly, to everyone’s surprise, DW appeared, seemingly out of nowhere.  I had put her to bed a couple of hours earlier, and she pretty much always sleeps through the night.  But for some reason or no reason, she didn’t, on this particular night.  Normally, she needs help with both transferring (especially getting out of bed) and walking (especially down a long flight of stairs).  So we were all astonished that DW managed to do this on her own…and this gave rise to concerns about being able to keep her safe at home, given fall risk or the potential to wander if she were to look for me.  (The next day I ordered a floor mat with an alarm, in case she were to get out of bed on her own again.)

The Ugly

On Christmas day, I was getting DW dressed.  She was cold, even though the thermostat is set at an uncomfortably high (to me) temperature.  DW turned to me and said, “I want to die.”  I asked her why, and she said, “Because there is nothing else.”  Chilling.  Soon forgotten by her, but not by me.

Not an hour after she was dressed, she had a massive BM that necessitated a total clean up and change of clothes.  Later, at Christmas dinner, she had urinary incontinence bad enough to require yet another change. 

All in, I’d call it a successful visit.  It was Covid free.  The kids got to spend time with my DW, who was mostly happy and upbeat even though she no longer understands Christmas.  The kids had a necessary brush with the reality of her progression that weekly family Zoom visits don’t adequately convey.  And I have their proxies as our AD journey continues and I have to continue making decisions for my DW’s health and safety.

M1

Jeff that sounds like a pretty successful holiday all around, "The Ugly" notwithstanding. It must have felt wonderful for you to have everyone there. The death wish must have stopped your heart, just like her nightcap appearance. But naming the kids will also stick with you.

Here's wishing you the very best in the New Year.

Joe C.

Jeff, I glad you were able to gather with your family for Christmas and also important to have a productive conversation about the future. Having these types of discussion with my family, especially my stepdaughter, made things go smoothly when the time came for placement. 

On another note, I have been thinking of reaching out to you about future travel plans. The placement really took the wind out of my sails for a while but know that the holidays are close to an end it is time for me to start making plans again.

Ed1937

Jeff, what a ride on the roller coaster! The fact that you were able to have the family together is as good as it gets. Sorry you had to experience the really bad episodes.

Beachfan

Jeff, it is so comforting to have family support when planning around this disease, especially as the late stages begin.  Two of our three kids and their young families live within walking distance of DH and me.  They witnessed DH’s progression up close; they also witnessed my slow deterioration as the caregiving years piled up.  When placement for DH was agreed upon, it was sad, but less painful than it might have been.  Your Christmas get together was productive, in spite of the glitches.

Joe C. and Jeff, if you do ever get to travel, keep us in the loop.  My young niece invited me to join her on a “road trip” in March from PA to TX where she will visit her daughter and family and I will visit my son and family in a city nearby.  She is a little crazy and I’m not far behind; Thelma and Louise, here we come!!!