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:
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.
I love you for doing these posts. As always my thoughts and prayers are with you and your family on this journey. You are a beacon of light for others in this situation.
ReplyDeleteThank you for sharing your journey. Seeing all the pictures on instagram over the holidays - I didn't realize the other side of things. You are a wonderful daughter. I'll keep praying for your family. It was great to see you Saturday, maybe we can grab coffee soon!
ReplyDeleteI am so sorry for all of you. This made me cry as I am a very old friend of hers and our families go way back. I care about all of you and have you in my prayers. You have truly been a terrific daughter to both your parents and they are so lucky to have you. Blessings .......
ReplyDeleteMollie
I just want to drive to Charlotte and hug you. I'll have a bottle of good bourbon in my hand of course. It's such a heartbreaking disease and she's so lucky to have you and your daddy taking such good care of her and advocating on her behalf. xo
ReplyDeleteI don't know you, but I just wanted to let you know that there's someone out there thinking of you and wishing things were different for your mom. I hope you know that you are touching people's lives with these glimpses of your life (the good and the bad both).
ReplyDeleteI don't "know" you, but I can't tell you how much I respect you. You are such a strong wife, mama, and daughter. Thank you for sharing this journey.
ReplyDeleteI don't "know" you, but I can't tell you how much I respect you. You are such a strong wife, mama, and daughter. Thank you for sharing this journey.
ReplyDeleteMy mom is experiencing this and it is heartbreaking. I will be following and reading every word of your blog. Sharing really helps people to relate. Thank you!
ReplyDelete