Tuesday, March 6, 2018

An Update on BB-March 5th, 2018

Hundreds of minutes on the phone and countless texts and emails and we came to the decision. Prayer and faith led us here, along with what we knew Mom would want. She would not want to be in this state. She would not want to be force fed baby food. She let us know this when she filled out her advance directive.

Yet is is still so hard to say out loud. To tell your hospice team, we want you to stop feeding her.

But the bottom line, and the thought that keeps me from a guilt avalanche, is that we need to do what BB wanted. BB would want you to stop feeding her. That is why her body cannot swallow, why her body is slowly turning off the computers, dimming the lights, closing the door.

And she did not want this.

As of yesterday Mom is no longer receiving food or water. They will keep her  mouth moist (maybe with Dewars?) and keep her completely comfortable. Being the court jester I have been for the past 7 years I told my Dad, "I'm the one that brought the morphine Mom!" Her doctors are all in agreement, they have seen this before and this is not agony for them, they know where she needs to be. And it is not on this Earth riddled with this horrible disease.

To Ford and Amelie and Max, please be the one to rush to this decision. It has been agony for us. But I'm telling you now (and updating my paperwork at Northwestern Mutual) that you SHALL withhold life prolonging measures if I have a terminal diagnosis. And especially if I am in depends, in a hospital bed, and away from my loved ones.

Alzheimer's is the cruelest way to go. And it is our duty to let her leave with as much dignity and comfort as humanly possible.

We don't know the timing of this. I'm a basketcase because I'm worried about the Alzheimer's Gala this weekend (we still have spots at our table!) and how I don't want to let them down. Or let my friends down that have bought tickets.Or let Ford down on his slime themed birthday party wishes. But truth be told I want to curl up in my childhood room and sleep while we wait.

But....I'm a Mom, and in this sandwich generation..... so I need to forge ahead with daily life.

I want to thank you all for continuing to read these updates. They are hard to write at this phase but I don't want to let any of my ALZ followers down. There is no manual for this and I want to be as honest as possible about how this all unfolds. If you think our decision is wrong, and that we should let her lay motionless in a bed all day, please keep those thoughts to yourself; especially if you have never witnessed a visit.

All of my love,

**Family I sent an email yesterday morning regarding this. If for some reason you are not getting those updates and reading here please send me your email.


mcompton said...

You are very strong, and your blog continues to help so many others. We all thank you

Spencer Butler said...

You are an amazing young lady and so courageous to have shared this with so many. I have no doubt that you have given great guidance to those who are enduring this same situation with their friends and family. Sending you and your family so much love, comfort and really big hugs.

MFAMB said...

all my biggest bear hugs. i'm so sorry.

Lauren said...

Prayers, hugs, happy thoughts, all that bullshit people say. Thinking of you and your family often.

Katie Kelley said...

Continued love and prayers for you and your family.

Anne Umphrey said...

Bless you and your family. It is usually easy as a parent for us to make decisions concerning the health of our children, but to make decisions on behalf of our parents is so very difficult. You are in my thoughts and prayers these days

Kit McLellan said...

I am so sorry, Katharine. This so hard and yet you are doing the absolutely right and compassionate thing for your beautiful mother, who we all love so much. God bless and comfort all of you. All our love to you, my lovely family.

May flights of angels sing her to her rest.

BKell83 said...

I've been reading and following your journey on this blog for a while now but feel compelled to reach out now and say thank you...my own mom is in the earliest stages of ALZ, and its terrifying beyond words...thank you for sharing all of this. From a random reader in New England, my thoughts are with you.

Laura Mccue said...

Love you and your parents. BB will always be special to me and my family. Trust that you are doing what she would have wanted you to do.

Laura McCue

Allison Scott Berkheimer said...

I'm 35 and lost my Dad three weeks ago at age 72 after 10 years battling with Alz. The end, it's indescribable for those who haven't been there and witnessed the decline, the weight loss, the emotional rollercoaster. I wish you peace in the coming days and weeks.