Friday, February 9, 2018

Tough Questions-An Update on BB February 9

I have debated posting about this but I want to stay true to my mission of being transparent about this disease and the process around it.

Mom is being spoonfed baby food, as she has since her swallowing issues began last Fall. Dad sent me a picture on Sunday that really just hurt my heart. She was almost asleep but still being fed her entire meal while wearing an adult bib. (see below)
This is nobody's fault. This is standard protocol. It is a horrific gray area in the course of this disease. Should she be being fed like this? Should she even be being fed? Does she feel hunger? Thirst? We know that if she stops eating she will die.

So making decisions about this directly affects when she will die. 

These decisions are hard. And guilt ridden. I have lost sleep. I have had dreams about these decisions. 

But we need to remember the most important thing. What would and what did she want?

It wasn't until yesterday that we looked up her advance healthcare directive (something we all need to have) and she specifically stated that if she has advanced dementia her directive is that her healthcare agent may withhold life prolonging measures/supplements.

And then you have to put yourself in her shoes. My parents used to joke that they wanted the pillow. If they were to be put in a home, just give them the pillow instead. It's a horrible and cruel saying but Mom worked in long term care for years and she saw. She knew. 

So at this point by feeding her what are we prolonging? She no longer recognizes us. She is in pain sometimes from her osteoarthritis so she has to be on pain medication. Smiles and "I love yous" are a rare occasion. I am so damn glad my kids got a smile from her last visit. She would not want to be like this. 

Hospice has been incredible. I reached out via email to ask them what they thought and they have this way of wrapping you in comfort with their words. They know these feelings, they have seen families beat them self up over even uttering these words. But they know in their hearts what is best for the patient.

I am thankful that my brother and father and I are so close throughout this process. We have a sense of humor that is helping us lighten the load. You should see how horrifically ugly urns are these days. If you can't laugh at a tacky airbrushed urn and how she would curse us for the rest of our lives if we picked one of those out........ then you aren't going to make it through this.

I am also thankful her sisters and brothers all agree that she wouldn't want to be like this. She is their baby sister and it hurts them just as much to see her incapacitated and frail.

I love you Beau and Dad. We have been planning quite the celebration. And there will be Cheetos and Scotch for all.

If anyone riding in Iris can send me some Iris beads I would be forever grateful. She rode with her sister-in-law, Jennifer Boylan, and said it was one of the most fun things she ever did. (It's on my bucket list)

All Hail BB, Queen of Aston Park.

5 comments:

mcompton said...

What are Iris Beads?

Lauren said...

Thinking and praying for you and your family often - what a terrible, horrible disease. I really admire how you are handling this - you're a strong, amazing woman, even if might not feel like it.

Kit McLellan said...

I love you, baby.

Timely Tales said...

Thank you for putting this out here for all of us to read. We lost my mother-in-law last March to this horrible disease. It was very hard. I thank you for writing this and I know it has to be breaking your heart to go through this. Continue to be strong and I will say a prayer for you and your family.

Dina said...

I"ve been checking back often to see how you are doing. Thank you for keeping us up to date and for discussing such difficult decisions and what you are facing. Thinking about all of you. Even though I don't know you, I feel like I do.