Monday, August 28, 2017

Update on Mom.


Mom has a dedicated PA taking care of her now since she has declined so much. The outlook isn't good, but that's what happens with this disease. We are past the point of playing music for an "awakening". We are past showing photos. We are past stuffed animals and face-timing. Eye contact is rare.

Her PA called Dad to give him an update on Thursday. Mom is declining rapidly. She is pocketing her food. Mom is a chipmunk. If that makes you smile at all. Mom is one of the Chipettes. She is having problems swallowing and likely already aspirating. She is losing weight, and her mood is flat. Soon eating will be too difficult. Most people familiar with dementia/Alzheimer's patients recommend AGAINST a feeding tube. What exactly, at this point, are you prolonging? Your selfish desire to see this person? The feeding tubes can become infected and agitate the person more than they already are. So at this point she will continue to lose weight and possibly aspirate, or pneumonia, or stroke...etc.

I'm guessing less than six months. It's probably much sooner than that. We know. We know it's coming. We know she is dying. But to have someone tell you it's closer is hard. I bawled. I wanted to drive up and brush her hair and feed her pudding and hug her. But she doesn't know me and I wouldn't be a comfort. She winces when you rub her head. She winces when she tries to swallow her favorite frozen frappuccino. And I have a job and kids and First Grade and well, responsibilities. Epitome of the sandwich generation right here. I feel like I'm failing both slices of bread.

I read an article recently about how you need to be there for people more after the funeral. I imagine that to be true. The pomp and circumstance is over and they are truly alone at that point. But with a disease like this you need people all the way through. It feels needy and selfish and horrible for saying, well yeah I need your support. Still. Year 5. Still need you. Hey, I'm still here, grieving. Hello? I hate it. It's an unfair burden to my loved ones to have to feel like they should support this marathon of grief. But it's not my fault. And it's not Mom's. And it is a MARATHON. Nancy Reagan called it the long goodbye and she couldn't be more correct. 

I'm sure my husband is sick of it. Updates turn me into a blubbering mess. I'm already a Pisces so I'm doubly screwed. People say I'm handling this with grace and courage and I don't think that is true. The only kudos I will give to myself is that I am telling the truth, and being authentic. And hopefully showing a REAL representation of what it is like to lose your Mother to Alzheimer's.

8 comments:

RATTBOOKS BLOG said...

Kat, you have been courageous and loving and are so important to Beano, you've been a real life saver. And, clearly, your family is not suffering from lack of love and attention. I think everyone who loves BB and Beano and your family wishes there were more to do to help you all through this, and the best I can do is send tons of love. I just noticed this entire post is filled with love--as are you. XO

mollie lowe said...

Oh Kat, my heart is breaking for you and your wonderful family. Please call on me to help in any way. Love, Mollie

Lauren said...

So very very sorry girl - I can't imagine. What a struggle this must be for you and your family. Prayers, happy thoughts, good vibes, and strong cocktails for all of you...

MFAMB said...

as far as i can see the fact that you are maintaining your life, family, job, not drunk by noon every day (and even then i'd cut you some slack), enjoying things, breathing, eating, smiling and laughing (occasionally), crying, sending me dumb and awesome snaps, i'd say you are handling it as best if not better than most people would. my heart goes out to you. there will be peace soon. i wish i could hug you. xx jaa

blue hydrangea said...

Ugh!! So sorry! I feel your pain. My mom is in year 10 with dementia and it is starting to get messy. Really messy, and sad and exhausting for everyone. Sending prayers!!

bluehydrangea said...

Me again! I just left a comment but I think I was signed in as my daughter...why does she change things on my computer!! Doesn't she know if confuses me??

Nat said...

Hugs, and wine, and chocolate and bourbon. I wish I knew the right words to say but I know there isn't really a right thing to say to anyone in this situation except that it sucks. I'm thinking about you constantly and I'm always around if you want to chat with someone or share a virtual glass of wine. Despite what you might think you're doing an amazing job bringing awareness to this disease and think sharing your truth is the best thing you can do.

mcompton said...

You are being very brave, and helping many people along the same journey. I wish I was close enough to give a hug. But I will send one to through the internet.