Tuesday, July 29, 2014

Alzheimer's Resources

Blogging is therapeutic. I had a guy friend tease me saying "oh wow you have a blog you must be so legit" and while yes, blogs don't make you a NYT writer, I use this spot as a place to dream, vent, scheme, organize, request help, and post things I want to remember. As any blogger knows comments are the best part of the day either agreeing with you on the trials and tribulations of motherhood or helping you find that desperately sought out paint color you cannot remember. Lately my comments have turned into emails requesting my help. There is a small but quickly growing population of people in my exact position.....a younger generation with parents that have either been recently diagnosed with Alzheimer's, or they believe Alzheimer's or another dementia might be the case but don't know where to start. For most of my friends this is typically a disease they see in their grandparents, but for some of us it is hitting our own parents early.

What these emailers are asking for (mostly women) is advice. They need a shoulder to cry on, an empathetic ear and heart to hear their story....but overall they need some place to turn to.

When we received the official diagnosis of early onset Alzheimer's disease the first thing I did was go to the Alzheimer's Association website. I signed up for updates and news from my local chapter and as soon as it was available I signed up for the walk.
I can remember going to the walk kick-off in 2012. We had a breakfast at one of the Assisted Living communities here in Charlotte and I sat at a table of former walkers and people in the industry. When they asked how I was connected to the disease and I said that my mom had been diagnosed the floodgates opened. I could have felt embarrassed but it wasn't necessary there. Those were now my people. They understood. And they hurt for me. They all had first hand knowledge of the hard road my family was going to travel and mostly offered love and encouragement. It was mind blowing and wonderful and sad all at the same time.

Walk day the first year was a sea of flowers from the memory garden and an ocean of emotions from me. My Mom held up her blue flower to signify she had Alzheimer's and she held it up proudly. 
There weren't many blue flowers there but for her it showed she understood what was going on and to have thousands of other colored flowers there supporting her made her feel like she was part of a community. 

My Blondes vs Brunettes to End ALZ Team in 2013

The Alzheimer's Association is an amazing organization. If I didn't have a pretty good gig I would seriously consider working for them for the rest of my life. Besides the Walk (and Blondes vs Brunettes powderpuff football league which was so fun!) they have support groups that I haven't yet started but my father has and he cannot say enough wonderful things about his meetings. He didn't know what to think of his first meeting in Asheville but the stories and advice and (again) empathy are soul healing for him. And I guarantee if you know my Dad he has the room laughing as he puts a slight comedic spin on his narratives of mom.

Our next step was Memory Care. We had to get a recommendation before going there but once her former Neuropsychologist made the diagnosis we started looking around for a better fit doctor wise.

Memory Care is in Asheville, NC and is a non profit organization for patients and families. They do not only treat the patient but they treat the caregiver. We visit 2-3 times a year with a Dr and a nurse. While Mom gets her overall health and cognition checked, Dad and I meet with the Nurse (I would call her a life counselor) and get advice on where we go from here. I want these meetings to last forever. We have so many questions and so many stories and what if scenarios. The information we gain from these appointments is invaluable and I will post some below.

The last step is research. These are the books I have read/am reading. If you think you might be dealing with a form of dementia I would order all of these on Amazon right away.




Two I want to read:


My techy advice would also to follow these organizations on twitter/facebook/blogs...etc so that you can see their updates, attend events, and follow their stories.


Follow Maria Shriver. 

Read other blogger's stories.

Sign up to be an ambassador through the Alzheimer's Association. 
I was able to go to a meet and greet with Congressman Robert Pittenger last year and tell him our story and voice my concerns through an event planned by the ALZ Association.

I guess you could say as a family we doing okay. We have seen a rather steady decline in cognitive function and while we have hired help and set up schedules and done as much as we can to keep her comfortable and happy in her life the next step is always on the horizon. In home daycare? Out of the house daycare? We aren't sure where we go next but we have made sure we have someone to hold our hand along the way. I would say she is in good spirits most of the time but my father bears the brunt of the sundowning/mood changes. These are daily now and can range from pouting to serious screaming to complete lost control. He is who I worry about the most. 

Last but not least here are some bookmarks/pins for you. Social media is truly a great way to start learning and you can visit my Alzheimer's board on Pinterest here:





Safe Return Bracelet ordered here:

I know this post is lengthy but I hope it helps some of you in your own fight against Alzheimer's. And lastly to my Mom...
You go BB! Want to walk with us this year? Here is our page.

Love,
A Caregiver

2 comments:

Mike Good said...

Katharine, it's so great that you are sharing you knowledge & strength with others. Don't let your father stop attending support. I see so much love and friendship in these groups. And it's always best when there is at least one joker in the group; otherwise, things get too serious. So I'm sure he is a huge asset to the group.

Playground Prepster said...

Wow. This is so much information. My grandmother passed away almost a year ago from dementia and my mom and her siblings were so lost in how to care for her. It is wonderful you are providing such a well of information for others. I am really sad that you are facing this though - and your father too. You are such a rock. I was not.
And I don't think I realized you were in the QC too.