Tomorrow June 21st is the Longest Day…Post, Get Active or Wear Purple

 

I go purple all of the time, purple has been my favorite color since I was a little girl and I guess you can say that now for the month of June I bleed purple. I’m sure my fraternity brothers of Omega Psi Phi are going wait a minute?,  (That’s one of their colors), but for Alzheimer’s I live it.

June is Alzheimer’s and Brain Awareness Month. One of three months (the others are Sept. – World Alzheimer’s Month and Nov. – National Alzheimer’s Disease Awareness Month) designated to further highlight this growing disease. Over five million Americans are living with this disease and that number is expected to jump to 75 million by 2050 and over 47 million people are living with dementia Worldwide.

  • It’s the 6th leading cause of death and the only one without a cure.
  • In the United States someone develops Alzheimer’s every 66 seconds.
  • In 2017, Alzheimer’s will cost the United States $259 billion. This number is expected to rise to over $1 trillion by 2050.
  • 15.9 million family and friends provide care to people with Alzheimer’s and other dementias in the United States.
  • The annual global cost of dementia is $818 billion in U.S. dollars.

Sadly, this illness is becoming a growing silent epidemic. Silent because it scares people to talk about a disease that can take your mind, have you forget almost everyone and everything that you know, decrease your ability for self-care and one that currently has no cure. But those of us who advocate for the afflicted and their caregivers, as I once was, are fighting every day to remove the stigma, to provide hope and compassion and work every day to end alz.

So what will you do? Will you add the “I Go Purple” frame to your Facebook profile picture? Will you send one tweet, or share one Facebook or Instagram post that you stand with those who are fighting against Alzheimer’s? Will you participate in an activity tomorrow June 21st, that benefit’s the Alzheimer’s Association’s The Longest Day? Will you wear purple?

Your life doesn’t have to be affected directly to advocate, but I’m sure you know someone whose life has. Stand for and with them.

Tomorrow, June 21st, the  summer solstice, join in on one of the Alzheimer’s Association’s largest fundraisers, The Longest Day. The Longest Day is a day about love. Select any activity you love — or an activity loved by those affected — and team up with the Alzheimer’s Association to raise funds and awareness for care and support while advancing research toward the first survivor of Alzheimer’s.

All across the US there will be activities beginning tomorrow into the weekend. Lead, join or support a myriad of activities, from dancing, bowling, BBQs, and baking to card games, dinners, running and biking all in an effort to raise funds and awareness. If you would like to participate in a local activity or start one of your own click here.

To learn more about Alzheimer’s, caregiving, the Longest Day and/or fundraising, please feel free to contact me at mizzriv@gmail.com or visit the Alzheimer’s Association’s page.

If you’re posting support use these hashtags #ENDALZ #aworldwithoutalz #thelongestday.

And don’t forget to wear purple.

It’s Was Time To Change The Tag Line….Back

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Three years ago I wrote a post about changing my tagline from The musings of a daughter’s journey as an unexpected caregiver, to The musings on life post Alzheimer’s, caregiving, and new OMG moments, here’s a little snip it from that post:

“In my life that is continually full of change, I realized that it is time, perhaps past time to change the blog’s tag line. The original tag was: The musings of a daughter’s journey as an unexpected caregiver, well I will always be a daughter and my journey shall continue, but life as a caregiver has sadly ceased. And those who have been following me or know me, understand that my role as caregiver was not a cake walk, but I’d gladly take it back to have my mother again and that is why I say “sadly ceased”, because she was the one who was taking care of. So the role changed, but the journey is my journey and there are still many things to share….”

I found as time went on that I was struggling with the new tagline, it didn’t feel like me. That may sound weird to you, but as a writer we think, we feel and if something seems off, we have to change it. That was me. I knew my life changed, but did my tagline have to? I was still writing about Alzheimer’s, caregiving and the new moments and experiences in my life, but somehow the new tagline didn’t feel right. I realized that no one said I had to change my original TL just because my role change, and there I sat with that line for about a year. Last year I decided to change it back to the original; The musings of a daughter’s journey as an unexpected caregiver. 

Once I changed it back, it felt correct. I realized that aside from the news and resources that I provide, the posts are still my musings. I will always be a daughter and though I may not be a caregiver now, I was once and hope that people can learn from my experiences, stories and tips. I was deep into caregiving as my mother’s changes were happening unexpectantly. And like so may of you who fall into this role and have to show up, and learn on the fly, I speak for you, I am learning for you, I am in action for you and for caregivers to come.

 

 

National Family Caregivers Month and Caregivers Tips

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Bringing awareness to Alzheimer’s and Caregiving never ends but it is the last day of the designated month where the Alzheimer’s Association focuses its attention on an important intersection between National Family Caregiver’s and Alzheimer’s Disease Awareness, by raising awareness on each individual campaign and how they intertwine. National Family Caregivers Month honors the relatives, friends and neighbors involved in caring for family members needing assistance in the home.

Lets say you are a new caregiver, what do you do first?

I’m honest, you may need to cry and let it out because sometimes all that you can do is stand, be uncomfortable with the moment and then release it. Once you’ve let it all go, it’s time to move forward because nothing is changing yet everything you’re dealing with is changing. In the beginning of my mother’s changes, I didn’t have a plan, making it through each day was my plan. But when I was able to get her engaged into a TV program, listening to music or even helping me out with a chore, like folding towels which was her favorite. Helping me out made her feel good that she was still needed and viewed as able person; those moments were my time to make lists, make appointments, plot my best course of action in order to be the best that I could be for her. As well as take stock of what my needs were in order to be the best caregiver to her, our home and our dog.

A family caregiver provides countless of unpaid hours that can eventually take effect on you physically. In a later post I will get into the physical effects, but this post is about the recognition of caregivers and if you are one, what you can do to start organizing your life.

Start with a check list and list, which will serve as a guide to get you thinking about papers and information you’ll need at the ready, what information you currently don’t have and should and making sure everything you need for your loved one is in a designated location where you can go to grab it. I highly recommend using folders, I used an accordion style folder to keep all of my mother’s papers together and it provided a section for each subject matter, doctors, financial, medical, etc.

Here is a recommended checklist to get you or someone you know started:

  • Birth certificate
  • Social Security records
  • Health and life insurance records
  • The names and phone numbers of your primary care doctor, as well as significant specialists
  • Advance directives. If you don’t have an advance directive, start with your family doctor, attorney or long-term care facility
  • Medical documentation
  • Military records
  • Pertinent marriage, divorce, death certificates

Financial documents:

  • Trust and Will documents
  • Assets and sources of income
  • Bank accounts/safe-deposit box
  • Mortgage and/or property and land ownership papers
  • Investment records
  • Credit cards
  • The most recent income tax return
  • Loans, payments and balances

Other resources for caregivers are:

CareGiving.com

Leezas Care Connection

National Alliance for Caregiving 

Alzheimer’s Association

 

 

Seeing through Alzheimer’s Colored Glasses 

 

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I’m not writing this piece as one who has Alzheimer’s, but as one who has cared for a person with Alzheimer’s. The title hit me yesterday, for no particular reason, other than thinking about how Alzheimer’s has changed the way I worry and how I view things.

Something as simple as forgetting, where I once would easily laugh or joke about having a senior moment, becomes a pause in my life. A pause on whether I find it funny, because my forgetful moment could be the start of Alzheimer’s and so goes the dialog until I stop myself midway and reel my thoughts back in.

Learning new things has become of greater importance to me, what I do at work, what I do in play, I choose apps where I am challenging myself with words, always keeping in my mind, “to never forget.” I want to take up Spanish again, and other than the few words I do know, I want to get fully immersed in Cherokee; talk about challenging your brain!

I start to question down time, moments when I’m alone, am I eating the right way, am I doing enough to keep my brain as active and busy as I need it to be?, “oh why can’t I remember xyz,”, until BOOM. The worry and release comes out in tears, and then I can begin the self-talk of, “Pam you’re OK, now stop.”

Pictures and making memories are important to me, because I know what Alzheimer’s does. It takes. It takes the who, what and where away. My mom always talked about her childhood friends the Cottons. Thelma Cotton-Johnson or Aunt Tid as I called her was one of her best friends. As her Alzheimer’s got worse she’d ask for them more and more. I decided to take a chance and pull out one of her photo albums hoping not to get her upset, but to see if she could recognize her friends and sadly she couldn’t. The images weren’t familiar, not even my dad’s picture most times, though she always knew who she was married to. Perhaps it’s a familiar feeling the person is left with instead of an image? If anyone’s seen an Alzheimer’s test, one of the things they are asked to do is to copy a simple round clock with hands and it was amazing to see as my mom got worse, so too did her perception and drawing of the clock.

To look through Alzheimer’s colored lenses I guess you can say is like seeing a blurry picture that you can’t quite make out what you’re looking at. Often it’s something, someone, or someplace familiar that you’d never know until that one moment where the blurriness goes away, a moment of clarity hits only to be in the fog again. It’s viewing a world unfamiliar, unsecure, and scary leaving its victim at times for a loss of words and perhaps a loss of action.

So for those who cannot speak, who can no longer remember or act, I choose to do so.  If you asked me five years ago if I would be writing, posting and/or walking for Alzheimer’s, perhaps a little here and a little there as it has touched my family, but God knew I needed a bigger thing to tackle and boy did He find one. This girl is getting to work to make life for those with Alzheimer’s as good as if it’s being seen through rose colored glasses.

And if one day I’m seeing life through Alzheimer’s Colored glasses, then get ready to hear all about Charity, Sharon and Fontella and I’m sure a Roller Castle reference will be in there too.