June is Alzheimer’s & Brain Awareness Month

Alzheimer’s Disease (AD) is becoming increasingly familiar because of the growing number of people living with it and other dementias. There are 5.7 million Americans living with Alzheimer’s disease and without effective treatment, prevention or cure, the number of people with Alzheimer’s disease is expected to increase to 13. 5 by the year 2025.

The month of June, has been proclaimed as Alzheimer’s & Brain Awareness Month, where national awareness is given to the crisis of Alzheimer’s, the available resources, the family’s that are impacted by it, and how you can get involved to support the cause.

Unfamiliar with the disease? Here’s an overview on Alzheimer’s and Dementia.

*Dementia is caused from damage to the brain cells and is a general term for a decline in mental ability, memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s and Vascular Dementia (i.e. resulting from a stroke) are too common forms of Dementia. There are many other conditions that can cause symptoms of dementia,  such as thyroid problems and vitamin deficiencies and while symptoms start out slowly, they gradually get worse.

Types of Dementia:

  • Alzheimer’s Disease (see below)
  • Vascular Dementia – Occurs because of brain injuries such as microscopic bleeding and blood vessel blockage.
  • Dementia with Lewy Bodies – Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop in a part of the brain called the cortex, dementia can result.
  • Mixed Dementia – Characterized by the hallmark abnormalities of Alzheimer’s and another type of dementia
  • Parkinson’s – Degeneration of the nerve cells. Problems with movement are a common symptom early in the disease.
  • Frontotemporal lobar degeneration – People with bvFTD generally develop symptoms at a younger age (at about age 60) and survive for fewer years than those with Alzheimer’s.
  • Creutzfeldt-Jakob disease – Believed to be caused by consumption of products from cattle affected by mad cow disease.
  • Normal pressure hydrocephalus – Caused by the buildup of fluid in the brain.

*Alzheimer’s – The most common form of Dementia, that’s not considered an illness of old age, but is a progressive disease that causes memory loss, and problems with thinking behavior.

Symptoms of Alzheimer’s is remembering newly learned information and as it advances it leads to increasingly severe symptoms, such as disorientation, deepening confusion about events, time and place; mood and behavior changes; unfounded suspicions about family, friends and caregivers; and difficulty speaking, swallowing and walking.

7 Stages of Alzheimer’s:

  1. No impairment (normal function)
  2. Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer’s disease)
  3. Mild cognitive decline
  4. Moderate cognitive decline
  5. Moderately severe cognitive decline. Gaps in memory and thinking are noticeable, and individuals begin to need help with day-to-day activities.
  6. Severe cognitive decline. Memory continues to worsen, personality changes may take place, individuals need extensive help with daily activities and they lose awareness of recent experiences and their surrounding.
  7. Very severe cognitive decline. Individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement.

* Information from the Alzheimer’s Association.

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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

National Alzheimer’s Disease Awareness & Family Caregiver Month

Another November is here and another November where advocates and families of loved ones with Alzheimer’s or those serving as Caregivers to someone with Alz is in the continues trenches for a cure. We’re always at work, but November, our dedicated month is time to shine brighter, walk further, and  advocate harder.

My day one was spent doing social media outreach, networking and letting people on those outlets to look out, because I will be bombarding them with information. But not bombarding you all mindlessly, but to hopefully to provide information that will be enlightening, empowering, and of course mixed in with some fun.

I also listened to most of the Women’s Alzheimer’s Movement’s live stream today ( I was at work so I had to listen when I could, LOL). Great panelists, great information, some I was able to jot down quickly and for what I missed, I will go back and get. If you missed it I caught it on Maria Shriver’s Facebook page.

It’s only day one, and I know how I can get, I want to keep going and going as ideas and to-do’s pop into my head. I’m in full-on information overload, which I need to sort out to bring you the best information that I can. And in the meantime, I wish you all a healthful brain day and month.

 

 

 

Why?…. A Revisit

*** November is National Alzheimer’s Disease Awareness and Caregivers Month. While I’m gearing up to be my best next month, I wanted to share again, from seven years ago, on why I started this mission. My post appropriately is called “Why”.

Why?

In the past two years my life has seen some incredible changes, losses, gains, opportunities and harsh realities. And being a writer, yes I can stand firm on that statement now; several people have said I need to write about my life experiences. Mainly about what has become the hardest thing in my life; being a full-time caregiver to my mother who has Alzheimer’s.

I was given the great idea by several people to write about my experience, but when it came time to put pen to paper or rather fingers to keyboard, my head would start swirling and I couldn’t find myself to do it. I LOVE to write, I believe I’m good at it and Lord knows I always have something to say or to contribute, but I couldn’t find it within myself to write about this.  After some self-analysis, I realized it was hard for several reasons. For one if I wrote on how I truly felt, some people’s feelings may get hurt in reading my blog, secondly, my emotions were too great most times and I’d find myself, upset, angry and crying; all things which have made me a heck of a poet, but was a block and I wasn’t sure if I wanted to write about what has been all consuming in my life. I needed an outlet away from caregiving and writing about it put me right where I didn’t want to be. But they say the best thing is to write about what you know.

After more whispers from people, I decided to take their advice and convince myself to do it. I’m still angry. Alzheimer’s is a hell of a disease, and I know there are many great programs such as the Alzheimer’s Association for information and advice. But I’m angry because in keeping it real, too much is sugar-coated and there is such a lack of true help (physically and financially) for caregivers. That latter part is why I decided a few months ago to form a foundation for caregivers (details forthcoming).

As I’m stepping my toe into the water, I hope I can be a voice of strength and a shoulder to lean on for other caregivers and that this blog can grow to be an outlet of information and a place for understanding. I’m not here to bash anyone or any organization, but in keeping it real, maybe I can give some light to those who say they understand and have empathy, but truly don’t know how life is because they haven’t experienced being a caretaker.  Whether it’s caring for someone with Alzheimer’s, cancer, aids, stroke or other health related issues, I know my experience is and will be different from someone else’s, but there are several shared experiences and emotions and hopefully this will let others know we’re not alone. Hang on help is here!!

Thank you for taking this journey with me…until my next post.

xo