Month: September 2018

By: Betsey

I thought this was a good time to tell you a little bit more about my mom.

My mom is one if 5 kids. She has three brothers and one little sister who she adores and who is also her very good friend.  She and her sister were known to dance on tables at church New Year’s Eve parties… 😊 My mom also revered her dad, a very strong Italian man who stood up for everything he believed in.

My mom is beautiful. She had long jet-black hair and awesome style.  She used to make her own clothes and has always been the best dressed one in the room.

She met my dad in high school in a garage party.  Rumor has it that he was dancing with another girl and my mom told her to scram and the rest was history.

My mom had three daughters all four years apart (very organized of you, Mary).  She didn’t work when we were young but as we got older she served as a teacher’s aide at our school and worked at a decorating store in our home town. She later worked at Pottery Barn and even took on some small jobs helping people re-decorate their homes using items they already had.  My mom had a wonderful talent for decorating and she could make everything beautiful.  Our home was always clean and cozy and it was an amazing place to grow up.

When we were young, my dad would travel for work sometimes. When he was gone, she would make us breakfast for dinner and I got to sleep in bed with her. She was always there to take care of us when we were sick.  She was the true captain of our ship and kept all of us girls organized and gave us everything we needed. We always had nice clothes, great birthdays, and she made Christmas magical.

She could cook! It seems like every night we had a  huge homecooked meal and it was delicious.  She was Martha Stewart before Martha was a thing.

Something many of you who know our family already know is this very key detail about my mom: she loves the song Celebration by Kool & the Gang. Word on the street is that this was the song she and my aunt were dancing to on the tables….  At weddings when Celebration would come on and everyone else would quickly leave the dance floor, my mom would be out there shimmying around.  She didn’t care if it was just her dancing or who was watching. If her song came on, she was going to dance! Her love of music has remained constant throughout her disease. Up until recently she would still dance around with us during dance parties.

She was excellent with older people and volunteered with Meals on Wheels. I remember her really going above and beyond for a particular woman who was lonely. She was always going back by her house and dropping off slippers she bought her or a little treat. She always volunteered to clean our church, help make meals for funerals, or assist as needed.

Here’s something else about my mom – she is tough.  She was no wallflower.  She get’s that from her dad! She beat uterine cancer without blinking an eye. She has had early on-set Alzheimer’s for almost ten years and is still fighting.

It is very difficult to see her now, unable to care for herself, and sometimes it is all I can see when I look at her – this very different version of who she really is. I know it is hard for her friends and family  to see her this way too.  We have all had a rough time lately, so for today, I think I’ll stop talking about her disease and how she’s doing, and I’ll choose to think of her on the dance floor – just her and Kool and the Gang…

As my sisters and I have stated previously, we so wish that we had better documented stages and events since Mom’s diagnosis.  This is our advice to you if you are dealing with this disease or something similar. Dad says he doesn’t want to document it– doesn’t want to remember.  

I found some old notes about Mom that give some indication of the progression of her PCA over the years.

July 2013 Mom was incontinent at a 4th of July party, which is the first incident I can remember.    She did not know she had done this, but just seemed annoyed that her pants were all wet. We had to borrow some clothes from a family member and Mom required assistance to change her pants and underwear.  

For a few summers, my boys and I would often pick Mom up and take her with us when we went to parks, the zoo, and swimming.   It kept her busy and gave Dad some time off. As time went on, it became more difficult.

Summer of 2014?

Me: “Do you want to watch a movie?”

Mom: “Do you have anything left?  I don’t think so.”

Me: “I do, let’s go see.”

Mom: “Bullshit!”  

 

She was becoming increasingly agitated.  She didn’t like to be away from Dad and the new situations we were putting her in at restaurants, parks, etc., were too stressful.  

 

Me: “Let’s go to the bathroom.”

Mom: “Why?  In this little one?  It’s little kids’ stuff. This is yours. These are your shorts. Creepy.”

 

This one is memorable– We visited the Magic House with my Aunt and some cousins.  We were having lunch on the outside patio and some chocolate milk spilled onto Mom’s shorts.  She was very angry and gave me a death stare. She said I was rude and asked how many times I was going to do this to her. Mom said she was leaving and tried to do so. My Aunt calmed her down with some Michael Buble songs.  It was quite a scene. We have become used to scenes over the years. We are pros.

Another:

Me: “Mom, let’s go to the bathroom.”

Mom: “I can’t pee in these little shorts you gave me. I don’t like them. They’re full of shit. They’re creepy.”

Mom then stormed out and said “I’m done.”

October 2017  

Mom cannot care for her daily needs.  She can sip from a straw if you hand her the cup.  She can hold some foods and bring them to her mouth.  She will often try to eat the tablecloth or utensil. She can walk but needs help to get in and out of a seated position.  She mostly shuffles. Her feet often look purple and are swollen.

November 2017

Dad and I decided that he would no longer be picking my boys up from school.  He had been picking them up two days per week. It was just getting too difficult to get mom in the car.  She was really just dragging her feet and unable to walk.

December 2017

Mom can’t walk anymore.  Her feet just drag or she goes up on tiptoe when dad lifts her out the wheelchair to change her depends.   She is sleeping a lot more.

Lately, Mom has developed a couple of pressure sores— one on her inner calf and one on her outer thigh/hip.  They seemed to appear overnight and formed large pus filled blisters. The first seemed more alarming and we ended up taking Mom to the ER a few days after Christmas.  It was very difficult to get her out of the house since it’s all just Dad lifting her into the wheelchair and into the car. Of course it was very cold and miserable outside.  My Dad’s sister and her husband cancelled their dinner plans and helped us get to the hospital. They sat with us the entire time. We are so fortunate to have them on this team!  That’s a tip for you– get a team. Luckily, the wound was not infected and home health care has been coming out to monitor and to treat the wounds. The doctor said that these wounds can form easily if the skin breaks down where the bone presses on an object for too long.  In the first case, Mom had been crossing her calves while sitting with her feet elevated and the friction from slightly shaking her legs caused the sore. Something for caregivers to be aware of. We are learning as we go…

March 2018

Right now I’m sitting at Dad’s while he is out at the store.  Mom is watching I Love Lucy and alternates between laughing maniacally, yelling at the TV in annoyance, and grimacing as if she’s in pain.  What’s going on in there?

 

From here on out, I’m going to try to post about changes in Mom’s condition as they happen.