Speaking on Caregiving, Alzheimer’s and My Journey

On March 24th, I was invited to speak at a Mental Health Symposium hosted by the Nassau Alumnae Chapter of Delta Sigma Theta Sorority, Incorporated. The Theme was “Real Talk about the Elephant in the Room: Eliminating the Stigma of Mental Health with Facets, Education and Resources.” 

The focus of the day was to address different areas of mental health and discovering ways to eliminate the stigmas that keep people from talking about or taking action such as shame, phobia, anxiety, rejection, depression, stress and more. While I always intend to be timely with my posts, and yes, this one comes two months later, in all honesty, I needed to take care of a few of my health concerns that were and are draining and hence sometimes delaying what I want to do.

I have been very fortunate to educate and bring a smile or laughter to people through this blog as well as having the opportunity to write for a national magazine and websites, but on that day, as the first speaker and with it being my first foray into public speaking about Alzheimer’s, caregiving and my journey, I wanted to make sure my words were informing, well received, impactful with some fun.

This opportunity allowed me to show others that it’s OK to have discussions about Alzheimer’s and caregiving. I shared how I became an unexpected caregiver and that the sooner I learned to meet my mom where she was at and to communicate in a way that was better for her, was in turn better for me. I shared that as a caregiver it’s important to make your loved one feel validated as Alzheimer’s is changing them. Include them in house duties, dinner choices, after you’ve narrowed it down to a small few, or sing songs, play music and make activities as stress free as possible. And when unkind words are spewed at you or daily care is a struggle you have to remember that it’s the illness and not the person.

I can’t express enough the overwhelming feeling of joy that I felt in knowing my words, my tips and advice were wanted and needed. As I answered questions after my segment and later that day, it further reaffirmed that conversations about Alzheimer’s needs to find a place at the table and messages such as mine and of the other panelists are ones that need to be heard more frequently.

My cause is Alzheimer’s, it is an unforgiving disease, and I have chosen to be unforgiving too in my fight for resources and information. Alzheimer’s may not be what you or your family are facing, but there are many other forms of mental illness that need a champion and to remove the stigmas, we must first begin to talk. Talk to family, to friends, to counselors, to lawmakers, to one another and to continue these conversations until they are no longer needed.

As I’ve mentioned, I’m not a professional, but I am versed in life, in care and compassion. While I’m still growing in my advocacy, I can speak to so much from my own experience and if anyone has a question, needs advice or other please reach out to me. My mission is to be a support, a voice for others and a source of information and we will either find answers and solutions together or we will create a new thing.

I greatly thank my Soror Angela Banks Jourdain for inviting me to speak and in believing that my voice and story is an important one to be heard.

 

With my Soror Angel Banks Jourdain

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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The D Word

Since November I’ve been dealing with bouts of depression. Yes, that’s the D word people often do not want to speak on because the stigma of it all. I don’t want to speak on it because the ‘ole, what will people think comes into play, as if it screams something is wrong with me. I deal with it in waves, but most recently as a freak of an injury started getting worse, so too was my depression.

I had a boot on my foot by December and it felt like a boot on my life. The more pain I had, and less that I could do, the more I let it affect me. Then add in the holidays and regular life stressors, I was a big ‘ole bag of emotions. When depression hits, it affects what I need to do for myself and what I like to do, such as my blogging. I start procrastinating, I often feel tired and I’m searching for words that won’t come. Then I feel bad because I haven’t posted in a long time, that I’m not doing more in my advocacy and BOOM, I’m the hamster on the wheel.

But one day I needed to remind myself of why I started this blog. It wasn’t for me to be perfect in how I run it, but to inform, to provide resources, and most importantly to share my journey. Warts and all, whether as a caregiver or not, depression has been a thread through it all.

When I was caring for my mom, I started seeing a therapist. I knew I needed to speak to someone other than my friends, and my dog. I needed  coping skills, but most importantly I needed to talk and release. I didn’t think I was depressed. My therapist said I was, I disagreed, she was right. Depression doesn’t always manifest in being sad or down. Even though I wasn’t those things, being mom’s caregiver was all consuming, and in moving forward towards those things that I could move forward to, I didn’t. I was stuck and that feeling of being stuck is a form of depression.

I still deal with the loss of my mom, my Polo, my dad (even though it’s been 22 years), and the loss of the life I had. I allowed myself to fall into the gloom of feeling less than because my life isn’t what I wish it to be, and it’s taken a toll. Most days moving from the fog appears be a bigger challenge that I care to tackle. I’m uncomfortable where I’m at and yet challenged to get unstuck….oh depression. But they say, “your thoughts become things” and for change to happen, I have to work on how I think about things.

Now I won’t dismiss anti-depressants because I’ve been on them too, they work and I’m considering them again. I’m addressing this because there are some people who are of the “no drugs for me” policy, but I say one shouldn’t judge and you have to do what gets you feeling good and functional.

A big difference for me these past years is that I can feel the wave of depression coming on. I can’t always stop it, but I acknowledge it, and ride it through and let the emotional chips fall where they may.

Thankfully, as I write this today, I am in a lighter place. Pains have started easing in one area, and though I’m still dealing with other health issues, I’m working to get out of my feels and into a it’s now or never mode. I also intend on getting another therapist. It’s been years since I’ve gone regularly and it can only help as I move forward. I recommend therapy for anyone whether you’re going through something or not. It helps to have another opinion, another outlet and/or voice of reasoning. It’s important to take any steps you can for optimal mental and physical wellness.

I wish you well on your mental health and wealth journey.

 

 

 

If you have questions about mental health issues including:

  • Symptoms of mental health conditions
  • Treatment options
  • Local support groups and services
  • Education programs
  • Helping family members get treatment
  • Programs to help find jobs
  • Legal issues (the NAMI Legal Resource Service can connect individuals with attorneys in their area but does not have the resources to provide individual representation)

Contact the National Alliance on Mental Illness (NAMI) who  can be reached Monday through Friday, 10 am–6 pm, ET; 1-800-950-NAMI (6264) or info@nami.org.

or

National Suicide Prevention Hotline (open 24/7): 1-800-273-8255.

Samaritans 24 Hour Crisis Hotline (open 24/7): 212-673-3000

United Way Helpline (which can help you find a therapist, healthcare, or basic necessities): 800-233-4357

Bill Gates’ newest mission: Curing Alzheimer’s

Last week Alzheimer’s got a huge boost. Billionaire Bill Gates said he is investing $50 million of his own money into the Dementia Discovery Fund, a private-public research partnership focused on some of the more novel ideas about what drives the brain disease, such as looking at a brain cell’s immune system. It’s the first time Gates has made a commitment to a noncommunicable disease. The work done through his foundation has focused primarily on infectious diseases such as HIV, malaria and polio.

Alzheimer’s is the most common form of dementia and the sixth leading cause of death in the United States, where a new case is diagnosed every 66 seconds. More than 5 million Americans live with the disease, at a cost of $259 billion a year. Without any treatment, those numbers are projected to explode to 16 million Americans with the disease, at a cost of over $1 trillion a year, by 2050. And for Gates, this mission is personal having people in his family affected by this disease.

With his donation, Gates hopes to spur research into more novel ideas about the disease, like investigating the role of the glial cells that activate the immune system of the brain or how the energy lifespan of a cell may contribute to the disease. He believes that it will be a combination of mainstream and out-of-the-box thinking that will lead to potential treatments in the near future.
For those of us in the Alzheimer’s space, any and all awareness and financial resources are greatly welcomed, but to have a financial and philanthropic powerhouse such as Gates now in the fight, we’re most optimistic.
For the full interview with Dr. Sanjay Gupta, go here.

Women’s Alzheimer’s Movement’s Challenge 66

On November 1st the Women’s Alzheimer’s Movement launched Challenge  66, a month-long campaign to encourage you to leading a brain-healthy lifestyle.

Every 66 seconds a new brain develops Alzheimer’s. This challenge asks you to take 66 seconds to do something that stops the clock on Alzheimer’s. Get moving, get friends to join in, spread the word, share your story on social media with #Challenge66 and have fun. Lets work together to #endalz!

Women’s Alzheimer’s Movement™, founded by Maria Shriver, is a global alliance of individuals, organizations, researchers, foundations, influencers and industry leaders committed to finding out why Alzheimer’s discriminates against women. We believe that by answering the question of why women are disproportionately affected by Alzheimer’s, we will unlock the other mysteries surrounding this mind-blowing disease and that will lead to a cure for all. Learn more about them here.

To download the challenge, click on the link: Challenge 66