Thursday, December 21, 2017

Pillows for Christmas-An Update on BB-December 21st

I posted an update on Instagram but since I keep that private I wanted to do a post here for family that is following our journey along.

Dad went to visit Mom last week and she was sound asleep. We both assumed it was the ativan (for her outbursts/myoclonus) and dilaudid (for her osteoarthritis) making her sleepy. She didn't wake up or realize Dad was there visiting. 

Hospice has ordered her a new reclining chair and it should be there by this Friday. Her current new chair does not support her head and neck enough so she ends up being slumped over. I am leaving first thing tomorrow to meet her new Hospice team.

They have requested we buy pillows, as many as we can to prop her up, keep her comfortable, etc. So, this year BB will get pillows for Christmas. 

Concerned over her increased sleeping I reached out to our team and while the update isn't wonderful, having a team in place to answer all of these questions is....

Mom is sleeping more due to the overall neurologic decline. Her mind is dying, and it is tired. It is partially from the drugs but mostly from her body and mind signaling a slowdown.

Tuesday we were informed she is no longer eating or drinking very much. Thickened liquids are just as difficult to take in and she is not opening her mouth for bites. They will try  pudding and ice cream to see if that works. We will not do a feeding tube because there are so many adverse reactions to that type of supplement. You can read about that here and here.

Most of Tuesday Dad and I called each other crying. Of course this is what needs to happen, but it doesn't make it any easier to comprehend. On Wednesday Dad went to one of her meals and she did take a couple bites of food and had some apple juice. So maybe not as imminent as we had thought the day before, but possibly soon.

Our amazing Dean Todd is coming Friday with us to give BB communion. We will sit down with her incredible team of caregivers and try to ask questions that they might not have answers to. 

I will try to update more frequently as this process happens. Mainly for family but also for the friends and friends of friends that message me weekly going through the same thing. I cannot tell you how often I receive an Instagram DM, twitter DM, facebook message, email about someone that knows someone that just got diagnosed. I am flattered they come to me as an expert, (which I'm not sure that I am) but I want to do all that I can to help people going through this disease. 

Beginning in 2018 I am going to post on her journey from the beginning, as requested by a dear friend. The warning signs, the differences between ALZ/Dementia, how we got diagnosed, what we did after...etc. 

This is a difficult time of year for so many. Please show each other grace and love. I think I got half of our Christmas Cards out and I'm missing gifts for so many, just know I love all of you very much and have thought of the BEST gift ideas ever, my execution is just off.


Jessica Bradley said...

I've been following along for a little while and I'm just so sorry. You and your family are in my prayers.

Lauren said...

I think and pray for your family frequently - love love love.


Kat, you have served BB well and lovingly in this continued record of her very sad journey. And you have helped Beano more than words can tell. I wish you and all of the family the lovingest of Christmases, although probably not the happiest. Love, Dee

Dina said...

Thankful you have been given a wonderful supportive hospice team. They carried my Dad and I through my mom's 4.5 week metastatic melanoma hospice journey. Hoping you are able to find some joy and comfort in your children this holiday season. They truly are a blessing everyday but especially during the hardest days.

Courtney Cortese said...


I sent you am message on instagram then realized you might not recognize the name Courtney cortese is Courtney Hambright :) Praying and thinking of your sweet mom and family. Id love to follow on instagram, I do check on your blog/mom very often.

mcompton said...

I am praying for you and your family, Please know that your blog is helping others who are going through the same thing.,