Talking Alzheimer’s and Caregiving on Late Night with Karen Taylor Bass Podcast

I was honored to have a “naked chat” as she says with Karen Taylor Bass, award-winning PR Expert, Author, Speaker, Yogi and the list goes on; on her podcast “Late Night with Karen Taylor Bass”. Our chat was about Alzheimer’s, Caregiving, parenting our parents and our own wellness. People are living longer, senior care is at a greater need and when it comes to Alzheimer’s and Caregiving, not only is the cost for care getting higher, and women are at the forefront of all of this.

I hope by sharing my journey and offering information, it will begin to remove the stigma and allow people to feel open enough to have these very important conversations. I appreciate if you would listen, comment and if you have any questions please feel free to contact me. These discussions, especially for women and women of color need to be had, who cares for the MASTER CAREGIVER?

Link to the podcast interview:

Karen Taylor Bass: EP59: Alzheimer’s: Confessions of a Master Caregiver

Advertisements

A Note to Caregivers From Leeza Gibbons

leeza-gibbons This is a previous post that Leeza wrote for Confessions. After her win on Celebrity Apprentice, I figured it would be great to share again with my readers.

Leeza’s words:

How are you? Thanks so much for your advocacy in the Alzheimer’s community (and for your Twitter support!)….I thought maybe I would provide this little tidbit…for your blog. Again, we are all appreciative of your voice! Thanks Pamela!

“Especially during the busy holidays when stressors are maxed out, caregivers need to find their “sanity sanctuaries”. These are the places, people or things that bring you back to calmness and control. They are non-negotiable. For me it’s a five minute walk, a cup of coffee away from the phone and computer, my bath at night. Come up with your list and protect if fiercely. Figure out what you can do to mitigate that dreaded sense of overwhelm that you know is coming and plan for it. Remember that you can change your psychology by changing your energy through purposeful breathing. So slow things down with 10 deep breaths which can lower your heart rate, pump some oxygen to your brain, lower your blood pressure and put you back in control of your thoughts. THAT is the only thing we can control anyway, right? Why not release the rest? Show up, do your best, let go of the rest! Know that even if you get off track, your Sanity Sanctuaries are always there for you to reclaim yourself and move forward”

Ever Forward,

Leeza

Janette From Two Sister’s and a Demented Mom On Christmas And A Cookie Shooter

Screen shot 2013-12-19 at 2.16.43 AM
Voyageur, Dream Quester & their mom. Photo Credit: Two Sisters and a Demented Mom

Ever find yourself reading something and getting a good chuckle out of it, so much that you forget that what you read was also about a serious topic? Well that’s what you’ll get when you read the posts on the blog, Two Sister’s and a Demented Mom blog run by Janette Chisholm and her sister aka Voyageur and Dream Quester (don’t you just love those names?!)

Two Sisters is is a blog about their mom who has both Frontotemporal Dementia and Alzheimer’s Disease. They blog about the things dementia professionals don’t tell you, as well as how they are coping with their mom’s disease. Aiming for touching, helpful and funny, please make sure to check them out!

From J. Voyageur:

Have yourself a wonky little Christmas, may your days be bright….”

The holiday adventures continue ~ oh my….

After work today I went to mom’s house to visit with her, but more importantly to give my sister a break from hanging with mom continuously…we needed some sister time anyway.

So we go to the same coffee shop unwinding in each others company over coffee and chocolate/peppermint bark – yummy.

During the conversation my sister tells me that mom wants to make Christmas cookies tonight and asks me to join them.  Sure!  How many of these opportunities do we have left, really?  Time to indulge and recreate fond Christmas memories.  Sure……  Our turn to bring the happy.

About two weeks ago mom bought a “cookie shooter” from the local Salvation Army Store.  She shops there to honor my dad who said that when he was young, they provided Christmas for his family once or twice.  That’s the sweet part.

*Giggling almost uncontrollably here*

The funny?  The “cookie shooter”.  She’s been jokingly threatening me with the cookie shooter since she bought it.  Cookie guns, high noon….gauntlet thrown.  CHALLENGE!

We go back to mom’s and declare our desire to make cookies with her AND decorate the house a bit.  Let’s just go full tilt for a moment shall we?! How many holidays will we have with her still…her?

I ask mom where the infamous cookie shooter is.  “In a box” she replies.  Oh dear gawd – “where’s the box mom?”  “Around somewhere” the comic shouts.  Thanksgiving redux…Gotta love her…..Found it somewhere weird – the family room by dad’s chair.  Made sense to her at the time I’m sure.

We decide to make the spritz cookie recipe that came with the directions thinking it SHOULD turn out well.
Dreamer, mom and I start gathering ingredients.  None of the baking ingredients are together in one spot.  So the scavenger hunt begins, all three of us in different cupboards.  Dreamer calls out “Flour” we all move things out of the way in search of the elusive flour.  “I’ve got it” mom calls out.  “Wait…no it’s confectioner sugar”.  She’s put dry goods in see through plastic containers, not all of them marked with a label.

And so it goes, call and comical response, one ingredient after another until we have all of them . By now, Dreamer and I are giggling and can’t stop, just punchy and falling into our natural sister roles in mom’s kitchen. Dreamer and mom start measuring and combining ingredients while I assemble the shooter.

Now I have to find batteries….but it’s just me looking for them, a tad easier…and I know where to look haha!

Mom and Dreamer are now teasing each other about how much of what to add.  Mom pulls Dreamer’s hair at the nape of her neck like she’s always done when she teases her.  We all bust out giggling.  This is the kind of holiday we know and love.

I notice something is missing from the cookie shooter – the rod that cranks the “pusher” to get the dough out and into the cool shapes.  This renders the shooter inoperable.  Poopy.  Now what?

Throw chocolate chips in the dough and call it good, chocolate fixes everything.  Mom reaches for a container that looks like it holds granola, it has nuts.  Dreamer exclaims “I don’t want nuts in my cookies!”  Mom had pulled out the chips already and had them on the counter, but forgot she did that.  When I pointed to the chocolate chips  you would have thought I found the monolith in “2001 A Space Odyssey”  – “Ohhhh!” we all gasped, and just dumped a big ol mess of them into the batter…which I noticed was thinner and runnier than I expected.  What the hell, we followed the recipe, Dreamer read it out loud, checked the measuring.

We spoon it onto cookie sheets, hoping they will turn out.  Mom sets the timer, Dreamer and I start decorating.  I’m running some poinsettia garland along the stair railing in the front hall, Dreamer’s putting Dad’s village on the mantle, setting up the lights for it too.  All of a sudden Dreamer says “Alright, I just have to say this – the cookies don’t smell good!”  They didn’t.

As caregivers one of the things we do is check the refrigerator for spoiled food.  Dry goods have expiration or use by dates too?  How about Crisco? The cookies did not smell right, but mom thought they were just fine.  Tomorrow she’ll wrap most of them up for me to take home, and I’ll throw them all out.

And we’ve had fun making our first weird batch of cookies.  It’s the time spent together and the fun we had that counts, cherishing each other and the love we share.

Oh, and I threw out the cookie shooter.

Charlotte From Charlotte-Emily On Alzheimer’s Awareness

Screen shot 2013-12-16 at 9.10.13 PM
Charlotte Emily photo credit Charlotte-Emily.net

Another gem of a blogger and love-giver that I have met from across the pond in the UK, as they say, is Charlotte Murray known in the twitterverse and blogasphere as Charlotte Emily. Please read and follow what “Charlotte says” at Charlotte-Emily.net.

Her story:

Alzheimer’s Awareness – My Story.

Some of you may not know this but my beloved Grandfather has Alzheimer’s disease and has had for many years. Watching him deteriorate before my very eyes has been a real learning experience for me and one I’m so very grateful for.

Before he was diagnosed with Alzheimer’s I knew nothing of the disease other than that it caused memory loss and was often the point of many comical jokes. I also associated Alzheimer’s disease with insanity and it was something that scared me.

I remember as a child my Great Auntie – My Grandfather’s sister – developed Alzheimer’s. Well I don’t remember her developing it as I could have been no older than 7 but I remember going to visit her in the nursing home she was in and being terrified.

From what I remember of my Auntie she was just sat in the chair mute and didn’t speak or even acknowledge any of us but that’s a faint memory compared to the rest of that experience. I still remember to this day and if I’m honest it still frightens the child within me a lady who I now know also had Alzheimer’s sitting in a chair shrieking continuously in a high pitched tone that I can still hear echoing through my mind and another lady who had taken a shine to me. I was a shy child so having a lady I didn’t know being very in my face and trying to hug me constantly and play with my hair despite my protests scared me.

I carried that fear and impression of Alzheimer’s with me right up until the day my Grandfather was diagnosed.

My world fell apart the day they told me he had Alzheimer’s. How could it be that the man that had been almost a father to me my entire life was one day not going to remember me? How could it be that he was going to end up like those women I just told you about?

I was terrified. But when I returned home I sat in front of my computer for hours reading every bit of information I could find on Alzheimer’s. I wanted to know if there was a cure, how long would it be until he forgot me, was he in pain, most importantly I wanted to know if he was going to be okay.

I still continue to read all I can about Alzheimer’s because I believe you can never know too much about things like this. Information really is key.

With the information that I had I was then able to help my Grandmother and talk it through with her. I found it really helpful knowing everything that I did. I understood the phases he was going through. I had a certain amount of knowledge about what was and indeed still is happening to his brain. I was really grateful for the information.

A few years on and my Grandfather is in a care home and to me that care home has become a home away from home for me due to the amount of time I’ve spent there, the friendliness of the staff and also the other lovely residents.

Often when we enter the Alzheimer’s wing there is a lady stood near the door. This lady has the disease but is always friendly and always offers a hug as you walk in and greets you like an old friend. I find that over time it’s become easy for me to get on and communicate with all of the residents. Without fear or confusion. I’ve learnt the importance of just agreeing with them and just going along with whatever they say. I’ve learnt that they aren’t scary people or even insane.

These are regular people who just got sick. It happens. All of the faces in that home have stories behind them, families, amazing life experiences. These are people’s Mothers and Fathers, Grandparents, Sisters, Brothers.

My Grandfather travelled the world with the merchant Navy, he’s been happily married for 56 years and has a son and three loving grandchildren. He’s the kindest most generous man I know. He’s not somebody to be feared. None of them are.

They’re not something to be ignored either.

I don’t believe enough awareness is raised about Alzheimer’s and consequently I don’t think that enough is being done to find a cure or adequate methods of preventing it.

I’m not an expert and it’s not for me to tell you all what to do but I urge you all to do some research, learn more about the disease, maybe together with a better understanding of the disease we can all raise awareness and maybe one day they’ll find a cure. Just something to think about.

© Charlotte Emily Murray and Charlotte-Emily.net, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Charlotte Emily Murray and Charlotte-Emily.net with appropriate and specific direction to the original content.