Tuesday, May 9, 2017

Sixty-Ninth Birthday: An Update on Mom.

I haven't blogged in forever. As I said, Christmas was tough. My birthday was tough. Easter was tough. And now, like several of my dear friends dealing with the same, comes the double whammy of Mom's birthday and Mother's Day.

I have always tried to go home for either one of these events. Mom's birthday always coincided with Christ School Alumni Weekend which is by far one of my favorite weekends in Asheville. Or it used to be. There is just such a missing piece for me when I go home now. I know that will heal over time.

I set off early on Wednesday with sparkler candles, plates, napkins, presents, a scarf to dress her up, a lighter, the most gorgeous cake from a Rockbrook friend, pictures and a birthday hat. 

We took advantage of this day and set up an appointment with the staff at Mom's facility. At this point there isn't much to discuss. They have increased her Divalproex from 150mg 3x a day to 500mg 3x a day. It is an anti-seizure medication but it is also being used to calm her down. Being stuck in a wheelchair and being almost non-verbal is (as one can imagine) insanely frustrating and she yells out in the hallways just wanting someone to come talk to her. She does this even when we are there. If she sees someone she recognizes she is determined to make eye contact or get their attention. You can read a great article discussing this medication therapy here. She is on prn Adavan for her outbursts, Namenda (which I believe is useless) and citalproam to keep her moods happy. 

She is on a mechanical soft diet and while we visited I noticed she would wince when she swallowed food and refused her Coke Zero which she usually inhales. I just got off the phone with Dad and they are going to get a speech/swallow therapist involved as the nurses have noticed the same. Swallowing issues usually happen in the late/end stages of the disease.

End stages.


Dad and I walked over to another hallway and set up the family dining room for her celebration. We didn't see her yet but could hear her in the hallway upset and angry. She was kicking another woman in a wheelchair because she felt her space was invaded. She was happy to see us. Said she was "_____ to cry." (Going to cry...but she couldn't say that).  There were less of her famous "I love you's" and more frustrated partial words. We facetimed my brother which we probably won't do again. It confused her and she would look past the phone and was confused as to why Dad and I were carrying on a conversation with someone not there. I am thankful that he and her siblings are all visiting for Mother's Day.
We sang and ate cake and she did not eat much of hers. Normally she devours  her food. Our dear friend Alice came and brought her goodies. When we left Mom got agitated again because someone she knew walked by. It was her group's lunchtime and I think she was frustrated she wasn't in there.


It was by far the hardest visit yet. I saw her 6 weeks ago and she was much more lively, happy. I know that we might have been there on an "off" day. But there are so many off days now.

We ended the day at my parents' home having an intimate round table conversation with Dr. Dean Hartley who is the Director of Science Initiatives at the Alzheimer's Association. It was a fascinating conversation about how to approach Alzheimer's disease. A Vaccine? A three pronged attack like HIV drugs? Trials? Amyloid PET Scans? There was another ALZ daughter there, also Katherine, and she and I were like sign us up. We will sign up for any drug trial we can.

I dread this Sunday. I am thankful that I am a mother myself and can hold my two babies tight all day. My therapist suggested I do something to honor my mother. I believe this blog is a way to honor her. To not sugarcoat this disease. To help other people in my position. 
And I will arrange flowers. Just as she did. Just as I did for the ALZ gathering. Flowers and family and friends and her beloved dogs. BB's favorite things.

BB at 69 up top, below 65, 66, 67, 68. 

Alzheimer's is NOT normal aging. 

4 comments:

RATTBOOKS BLOG said...

You have a great mother and you are a great mother. Love to you both.

lmcimeyers said...

Oh Katherine - this post got to me. Your mom and I are the same age! I am so glad you are blogging again! The pictures are SO TELLING and a bit scary. You certainly are doing a fabulous job for ALZ Association making friends aware and raising money. SO PROUD OF YOU!
Lynn

Lauren said...

Glad to hear an update, even if it is a depressing one :( what an incredible job you are doing handling this, and what an honor to BB, to have you advocate the way you do. Go girl.

Debbie said...

Dearest Katherine, Roberta shared your blog with me a while ago. I'm sorry this horrible disease has afflicted your beautiful mom. You are a wonderful daughter! Thank you for advocating for your mom and sharing your journey with us!