Christmas. Who doesn’t look back on it with great memories? I have many.
I have memories of going to Mass at midnight on Christmas Eve and then waking up to the most amazing Santa presents ever. I got an E.T. cuddly toy one year. He still lives, though these days with my niece and nephew.
Then of course there’s the Christmas cakes and Christmas puddings! My mom would start making them for weeks before Christmas. She was kind of famous for them and made them for several aunts and uncles. It became their Christmas present from my mom.
I remember when I lived in England and came home one year for Christmas with my English boyfriend. We got up early Christmas Day. I made him breakfast and coffee, then my mom went over to him with a bottle of Baileys and a bottle of Jameson, and asked him which one he wanted a shot of in his coffee. For breakfast! He thought I had the best mom ever…
Nowadays, Christmas is a little different because my mom has Alzheimer’s Disease. This is the third Christmas we are heading into in the world of Alzheimer’s, although we started to notice the differences in her a few years before. My mom cooked dinner every Christmas, and our house was a busy place because we had a steady flow of visitors. Now that I think about it, my mom was a pretty popular person.
One year, mom wasn’t much interested in cooking the dinner. I was still living at home at the time, so I stepped up to the plate and cooked. Mom helped some with the meat and the trimmings. I had no concept of servings, though, and when my sister and her family arrived, they were like, “How many people are you cooking for?”
A year later, dinner got moved to my sister’s house, and as is now the Christmas tradition in our family, I drive to my parents’ on Christmas morning and get them to go to my sister’s to spend the day. My sister, brother-in-law and I will decide who’ll be the designated driver, and that person will take my parents home that evening.
Since my mom was diagnosed with Alzheimer’s Disease, we take it one year at a time. The first year, not a lot changed (we received the diagnosis in November). This year, it’s very different. I need to be up early (well, even earlier if I want to get a Christmas morning run in. I’m running the Boston Marathon in April for Alzheimer’s). I have to get over to my parents to help my mom get dressed.
My dad, who takes care of my mom full-time, does it on a daily basis, but we bought mom a nice new outfit for Christmas Day, so I need to get over and make sure Pops knows where it all is.
Mom gets a lot of Christmas cards, too. I stayed over one night, and the first one arrived the next morning. It was from one of my cousins in Australia, who sends my mom a card every year. But on this morning, my mom got confused and upset because she didn’t know who these people were and why they were sending her a card. I tried to explain that it was her sister Maura’s son, and she seemed to udnerstand, but then she said, “Well, why are they sending me a card NOW? Do they think I’m going to die?” It was a tough day. I needed to make sure my mom was okay, but I also had to get to work. All a part of life’s juggles.
We’ll go to my sister’s for dinner and then between us, we’ll do our best to give my mom a good day. My niece and nephew are brilliant with my mom, so like last year, they’ll take turns to show her what they got from Santa Claus. We’ve learned to try and keep it simple and not bombard my mom with too much.
Mom will be a little bit out of her comfort zone, since she’s not in her own house, but she visits my sister once a week, so she kind of knows it.
I can’t predict how the day will go. No one can, when dealing with Alzheimer’s. We always plan the day beforehand, but we’ll have to see how the day pans out…
We heard about my mom’s diagnosis on a Wednesday, and initially my world fell apart. I was working late when I got the call. I work in a male-dominated industry and went to the ladies’ room and sobbed for about half an hour. I got in the car and sobbed the whole way home. When I got home, I opened a bottle of wine (I’m pretty big into my training and nutrition, so I don’t drink during the week). I called my sister to talk through it; she’d opened a bottle of wine, too. Then I called my mom and dad. Mom had opened a bottle of wine, too. Hey, we’re Irish.
The next few days, I looked like a nut as I cried my way through my runs. Through my running, I processed.
Since I only take care of my mom part-time, I visit my parents every Sunday and every Tuesday. I stay over on Tuesday nights. We are in our routine now, but I had some challenges when we were first starting. Saturday night was a big night on my social calendar. I really don’t like drinking and driving, and don’t even like driving with a hangover. Before my mom was diagnosed with Alzheimer’s, if I wasn’t too hungover, I visited my parents most weekends, but if I was too hungover, I’d call and say I wasn’t coming. After my mom was diagnosed, I learned the importance of maintaining a routine for an Alzheimer’s patient, so as time progressed, my Saturday nights out changed.
On Tuesdays the biggest challenge for me was ensuring I got out of work early. I have a flexible job and can mostly come and go as I please, but sometimes something can come up and I can get delayed. I was a very private person and shared very little. I had to go to my manager and say, “Look, no matter what, I have to be gone by 4 p.m. on a Tuesday.”
Now on Sundays, I head over, spend a few hours with my parents, and take my mom out for a walk to give my dad some space. On Tuesdays I go straight from work and cook dinner for my parents. On Tuesday evening, my dad can do whatever he pleases because I’m there to give him a break. During the spring and summer, mom and I go for a walk, come home, watch some TV and maybe have a glass of wine. During the winter, we don’t go for a walk, but instead try baking at home.
The rest of my mom’s week includes spending Thursday with my sister and Saturday with my brother. After mom was diagnosed, we got together and agreed that, if we worked together, it was manageable.
Honestly, I would say my mom’s diagnosis has made me a better person. In the last few months, I’ve grown into the role of Alzheimer’s advocate. I am playing my part in trying to raise awareness and educate others on this disease. I’ll also be raising funds in the New Year, running the Boston Marathon.
I know it will be too late to save my mother, but if I in any way can help ease the burden for others on their Alzheimer’s journey, then my mother’s battle will not have been in vain.
I recently tweeted “Sometimes we don’t choose our path in life, sometimes it chooses us!” That’s how I feel about this Alzheimer’s journey. I wanted to give my life some real meaning, aside from the usual bullsh*t, and through this I feel maybe I can.
I’ve found amazing support among the Twitter Alzheimer’s community. I feel like I’ve found a new family because we help and support each more. More importantly we share the same goal of raising awareness and hopefully finding a cure for Alzheimer’s.
I’ve recently started blogging – Purple Nellie – combining my training for the Boston Marathon with my new role of Alzheimer’s advocate. It’s been an interesting journey for me because I was a very closed, guarded, private person.
I initially started sharing a little through Twitter, and the incredible, positive feedback I received helped me find a way to open up more. I felt maybe my sharing can help others on this journey.
I’ve always been a fitness fanatic and exercised in some shape or form over the years: gym and team sports (basketball, soccer and rugby). In latter years I began to try running and cycling. I have developed a very special relationship with running. It’s hard to describe, but for me, running now helps me keep my sanity. If I can run, I can get through anything!
Aew months ago, I decided it’d be cool if I could put my love for running to good use, and so began the birth of #RunningforAlzheimers, where I have challenged myself to not stop running until there is an end to Alzheimer’s or I die, whichever happens first. Check out my first blog entry.
I’m just on the start of this journey, but so far I’ve mentioned to a few people I’ll be looking for sponsorships in 2012. More importantly, though, I’m pretty much telling everyone I meet “Hey, I’m running the Boston Marathon, and I’m doing it for Alzheimer’s,” then giving them a few facts about the disease. It’s still early days, but once the New Year gets here, I’ll step it up. I’m working on getting some running gear designed, too.
After Boston, the New York Marathon is also on my agenda, then I’ll drop back to my preferred distance of half marathon.
I don’t think of it as such a big deal – I love running anyway so if I can put that to good use all the better. I’m not typically a marathon runner but then Alzheimer’s is no easy battle either, so it was important I set a challenge for myself that people might take notice of.
No walkers are allowed in the Boston marathon. I tell people it’s a true runners marathon!
If you’re on Twitter and want some information on Alzheimer’s, search for “AlzFacts,” and you’ll get a few results. The first Friday of each month on Twitter, we’re swapping #FollowFriday for #AlzFacts. Also if you can, tune into #AlzChat on Mondays at 3 p.m. ET.
A lot of us on this journey are not experts, we’re just sharing our own experiences and how we got to where we are today. Sometimes our own experience can offer insights to others.
About Samantha Howe
I’m the youngest of four children. I am a software engineer by profession, and a sports fanatic and fitness junkie in my spare time. A few years back, I made plans to take a break from corporate life and travel Latin America, once I had completed my Masters degree studies. Before completing those studies, my mom was diagnosed with Alzheimer’s Disease, mixed with Vascular Dementia. My travel plans were shelved.
Today, I am part-time carer for my mom, supporting my father in the full-time role of carer.
About Samantha’s mom
My mom was a nurse, until I came along! She and my father have been married for 47 years. She raised her own four children, along with pretty much three other kids for a family friend. She also helped look after my sister’s two kids for a few years, while my sister and her husband worked. She opened her door to a visiting family from abroad.
She is a woman with a big heart and a lot of love. No matter what, that’s how I’ll always choose to remember her.