Showing posts with label Krewe BB. Show all posts
Showing posts with label Krewe BB. Show all posts

Thursday, July 9, 2015

When She Could No Longer Dance


Over Easter Weekend we celebrated my daughter Amelie's Christening. Afterwards we had a luncheon at my parents' home in Asheville. Traditionally at these Boylan gatherings we end up with Van Morrison on the speakers and copious amounts of singing and dancing. My father grabbed my mother to shag/jitterbug as they always do but this time was different. My mother was lost. She just clung to my father and shuffled her feet. It was at this moment he realized his dance partner from the past 40 years no longer knew the steps.

I asked my father's permission to use this photo. It is pure and raw and emotional. This is what he lives with EVERYDAY. It is what my brother and I live with everyday; albeit from afar. This is why I devote so much time to helping the Alzheimer's Association. They are our lifeline. They provide us with support groups, events, networking and message boards. The people I have met through the Alzheimer's Association (and through blogging about this topic) are the most empathetic listeners to our story. 


This will be my fourth year walking to End Alzheimer's in Charlotte. My mother has changed so much since her diagnosis in 2011. I would stay she is Still Barbara, like the movie "Still Alice", but she is not. I know that she is still here with us sometimes but the inner workings of her mind that made her so uniquely her are almost gone. 

I ask that you join me in the fight against Alzheimer's. Every slipped fact or missed detail of my life sends me into panic mode that I will develop this dreaded disease. I don't want my children to go through what I am experiencing. I want to spoil my grandchildren. And I want my husband and I to enjoy our golden years.

My personal page is here. Please consider making a donation or walking with us.

Love,
Katharine, Beau and Robin (and all that love BB)

Thursday, April 16, 2015

An Update on Mom

Since I began blogging about  my Mother's Alzheimer's diagnosis I have met several people (real and through the internet) that have come to me for advice about their own struggles with the disease. I am by no means an expert but if I can help anyone with resources, advice or just be someone that will listen (or a shoulder to cry on) then hopefully life will be a little bit easier on them. I worry sometimes that I might share too much about mom's personal story but with my Dad's encouragement I believe that knowledge is the best weapon we have against this disease.

When my daughter was born my parents made it there 20 minutes after the was delivered. They had hopes of being there for delivery but things progressed a little too fast. Mom loves to look at her and coo at her. She keeps calling her a "he" and can't remember her name but she does like to look at her. We can't let Mom hold her because the arthritis in her hands is so bad and for safety reasons it is just not a good idea. Here she is holding her briefly on the day she was born.



We had a better Christmas than I expected. We had our entire family in town and while I was nervous that would make her stressed out she really enjoys my niece and nephew since they are old enough to interact (and listen) to her. My son is still a little too young (and wild) and seems to exasperate her and since she can't hold Amelie or can't help put her pacifier back in...etc, well it seems my kids in general stress her out. That being said Christmas was wonderful. 

Christmas Day 2014

We all left Asheville the day after Christmas and Mom and Dad went to an early afternoon party for a friend. When they came home Mom had experienced a pretty typical sundowning episode (Mad at my father, goes to her room and shuts the door). My father went outside to walk the dog and when he came back inside Mom was face down in a puddle of blood at the bottom of the steps and unresponsive. Dad called 911 and Mom was taken to the ER in an ambulance. She had a subdural hematoma and a concussion and of course absolutely no recollection of how she fell. Most people try to break their falls and she didn't have any broken bones in her arms so we can't figure it out. We have since taken away all of her heels (she had on low kitten heels) but still can't figure out what happened.


Since the fall it seems like she has declined even faster. She has started to shuffle her feet a little and is having a hard time feeding herself. The feeding issue could be her hands and the arthritis but she also looks at her fork sometimes and gives up and uses her hands. She doesn't remember most people's names but says "your husband", "the kids"...etc. She does somehow still remember all the words to her favorite songs and that Days of Our Lives comes on after lunch.

Our next step is to get Mom into daycare. She isn't going to do this willingly so we are trying to work with the facility to let her know she will be there as a volunteer helper. (a cruel but necessary trick) The irony of all this is my mom used to work in long-term care so helping seniors is truly her passion. She was actually on a team that opened the first memory care facility in North Carolina.

We are now in Stage 6, Severe Cognitive Decline. Sometimes I get glimpses of my mother. When I was sick on my last trip home she laid in bed with me and kept telling me to just take deep breaths. That has always been her trick to cure anything. She does still have moments of being BB, but they are few and far between. Below are the traits of Stage 6. There are a few that don't apply to her but for the most part this is where we are. 

Severe cognitive decline
(Moderately severe or mid-stage Alzheimer's disease)
Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may:
  • Lose awareness of recent experiences as well as of their surroundings
  • Remember their own name but have difficulty with their personal history
  • Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver
  • Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet
  • Experience major changes in sleep patterns — sleeping during the day and becoming restless at night
  • Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet
  • Experience major changes in sleep patterns — sleeping during the day and becoming restless at night
  • Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly)
  • Have increasingly frequent trouble controlling their bladder or bowels
  • Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding
  • Tend to wander or become lost
There are only 7 Stages of Alzheimer's.