The Beginning, The Middle, My Now… (repost)

Portsmouth, NH

11/1/19 ~ With November being National Alzheimer’s Disease Awareness and National Family Caregivers Month I wanted to share this post that I originally wrote a few years after my Mom had passed, as I say the beginning of my new normal. Seven years into this journey and I’m still raw, yet still learning, and for those who are on this walk of caregiving or have been there, my wish is that by sharing our powerful and personal stories, we can make a difference and create solutions together. (Original post 2014).

As I pondered on what I wanted to write for this post, the title is appropriate to my thought process. Do I discuss where I was as a caregiver (i.e. the beginning), the middle of that journey or where I am now and you know what I’ll give a little of all.

You see I am on the other side of caregiving, as my mother passed two years ago. I miss my mom terribly and would give anything to have her back, even those crazy, tough and teary caregiving days. Some people who are in the midst of it may say “I understand you’re missing your mom, but the caregiving part too?!”

Yep that part too! In my posts I often talked about the tearful nights, mom’s behavior changes, challenges with getting financial assistance for a person who wasn’t rich or poor, lack of sleep and sadness, as I navigated new territory wondering when I’d have time to move forward in my life, because doing anything else other than caring for her and giving her 110% felt like a guilty thing to do. It seemed there was always some obstacle to tackle.  As with anything new, I learned how to manage that life. Caring for mom, making sure she was on a daily routine or making sure that I was on a daily routine rather, keeping up with errands, and taking her to doctor’s appointments became my norm, but also learning how to meet her at her level was a huge step for me.

I often blog about meeting a person with Alzheimer’s at their level because once this really clicks for you, it does give “you” the caregiver a better sense of control. It makes the role easier because you learn not to sweat the small stuff, you learn to make better decisions because you truly realize that no matter how much you want the former person you knew it’s not going to be. You have to find ways to present decisions to them easily that will make them feel engaged and that they matter. Basically you make the decisions on the decisions they are going to or going to try to make.

Trying days yes, but now that I’m on the other side of the coin so to speak, it’s been challenging, but in a different way. Two years later and I still cry. I cry for my mother and my father. He didn’t have Alzheimer’s, but it’s the emptiness of having both parent’s gone and I struggle with my next. Funny isn’t it, when I was a caregiver, I knew all of the things that I wanted to do when I was able to get mom secure some place and now that I am no longer a caregiver it’s all escaped me. I have new challenges and another new mindset to conquer.

When I see something or do something that I want to share with my mother, it hurts my heart that she is no longer around to share in those things with me. Holidays aren’t the same. I felt so lost that first Mother’s Day. I tried to get cards for friends and family members and couldn’t do it. Stores where’d I go to buy items for mom gave me major anxiety when I’d go in after she passed. Who knew? No one prepares you for that! I knew there would be a great loss, but I never expected not being able to handle going into a store.

Caring for a loved one with Alzheimer’s is very much like the quote from Forest Gump, “…it’s like a box of chocolate, you never know what you’re going to get”. You get mood swings, the eating challenges, the bathing challenges, and for some, the wandering challenges (thankful that I didn’t), but you also get times when funny things are said, you learn how to grocery shop quickly, and to think very quickly on your feet.

When you’re in the midst of it really is the unknown path. I turned to blogging because I am a writer. I wanted to give a voice to my experience, once I got over feelings of embarrassment and not wanting to relive tough moments with mom, with learning financial systems and so on, but I knew there was a bigger picture, my experiences could help the next person.

I didn’t know where that would lead me, I just hoped someone would read my posts. And someone did and eventually my voice was becoming a bigger voice that started out for Alzheimer’s and is growing to be a big voice for the unsung hero…caregivers.

I don’t know my next, I have a list that I’m ready to conquer. I just hope that I can make a difference in someone else’s life.

To learn about my beginning, click here.

Women and Alzheimer’s

Women let’s chat… we know both men and women get Alzheimer’s hence the need to have those uncomfortable conversations about the disease and how it’s affecting our lives. As a new brain develops Alz every 65 seconds, women are developing this disease at a disproportionately higher rate. Of the 5 million or more Americans living with Alzheimer’s Disease two-thirds are women and studies are showing that it’s more prevalent in women compared to men because of lifestyle factors.

It’s not a disease due to old age as once thought to be the reason why women, who live longer than men, are at greater risk. But the early onset of Alzheimer’s may come about because of biological or genetic variations or social reasons such as differences in life experiences and choices, many which can be modifiable.

“Healthy lifestyle factors promote beneficial gene activity, while unhealthy lifestyle factors have the opposite effect. For example, women have higher rates of obesity and are less physically active. In addition, women have more mental health disorders, higher rates of insomnia, lower levels of educational attainment, and less mentally challenging occupations. All of these risk factors may be exacerbated by women’s lower socioeconomic status which is itself, a risk factor, ” notes Dr. Marie Pasinski.

Here are some facts from the Alzheimer’s Association:

  • In the US alone, about 13 MILLION WOMEN are either living with Alzheimer’s or caring for someone who has it.
  • Almost TWO-THIRDS of Americans living with Alzheimer’s are women.
  • Women in their 60s are more than TWICE AS LIKELY to develop Alzheimer’s disease over the rest of their lives as they are to develop breast cancer.
  • MORE THAN 60% of Alzheimer’s and dementia caregivers are women. More specifically, over one-third of dementia caregivers are daughters.
  • Women take on MORE CAREGIVING TASKS than their male counterparts – and care for people with more cognitive, functional, and/or behavioral problems.
  • Nearly 19% of women Alzheimer’s caregivers had to QUIT WORK either to become a caregiver or because their caregiving duties became too burdensome.

Another risk factor to consider is serving in the role of a caregiver to a loved one with Alzheimer’s or Dementia. The majority of primary caregivers are women who are providing over 40 hours a week in care which cause many women to quit their job and/or face other negative impacts such as those listed above, including having economic insecurities, weight-gain, and depression.

When I was caring for my Mom, I remember asking myself when I fell ill or was beyond exhaustion, “who cares for the Caregiver?” I didn’t think I was depressed. I thought my inability or lack of enthusiasm to move forward with personal goals was due to being tired from my everyday duties. I decided to seek therapy which I highly recommend in general, and through talking with my therapist discovered much of what I was feeling and how I was handling things in relation to my life was brought on by my depression. One may not often know what to call it because depression’s symptoms mirror those of other conditions.

Here are facts on depression from Mental Health America:

  • Approximately 12 MILLION WOMEN in the United States experience clinical depression each year
  • About ONE in every EIGHT women can expect to develop clinical depression during their lifetime
  • Social factors may also lead to higher rates of clinical depression among women, including stress from work, family responsibilities, the roles and expectations of women and increased rates of sexual abuse and poverty
  • Women experience depression at roughly TWICE THE RATE of men
  • Fewer than half of the women who experience clinical depression will ever seek care experience depression at roughly twice the rate of men

These are our numbers ladies so what’s next? (and men too… we need all hands on deck)? We must have conversations about health and keep records of family medical history. Next let’s work to remove the stigma of mental health and Alzheimer’s by using your voice and advocating for and supporting our sister-caregivers.

Some may wonder how can they help. It may be fearful to ask, but help can come in the form of assisting with housekeeping, watching their loved one by keeping them entertained or fixing a meal which allows them to have a brief respite. You could offer to bring them groceries, a meal or medical supplies or be a support by talking with them, giving them a laugh; anything to lift their spirits and get their mind off of their duties will be appreciated.

You also have to continue the education on the relation to brain and physical health and learn to be the best version of ourselves. Remember a healthy body, our root, begets a healthy mind, our leaves. And we need to be our sister’s keeper by checking in on one another and as I always try to encourage, we need to share our stories. Knowledge is empowerment.

If you would like more information about Women and Alzheimer’s and the resources and support that’s available please visit the Women’s Alzheimer’s Movement.

For caregiver assistance or support, find tips here.

For depressions assistance go here.

Brain and Body Health Connection – A Personal Moment About Gut Health

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I updated my original post because it felt empty after reading it. I provided my story, I needed to give you more of the why? Why is gut health important and what steps can you take to begin to get there. Starting with my own accountability to doing better.

The original…

I’ll be standing firmly on two feet soon (old pic) and while my foot’s healing, my system needs to as well. I’m speaking about “gut health”.

I have an intolerance to gluten. I’m not allergic, I can eat it, but it’s better for my system if I don’t. When the discovery was made years ago, I shared this with my then nutritionist, and she explained how this is a contributing factor to the slowing of my metabolism. I’d start off well, finding new alternatives to wheat which led to my love for Whole Foods and Trader Joe’s, but sure enough the old habits started coming back. Now years later having developed other issues, it all starts replaying in my mind.

Gluten isn’t the sole cause of my issues and being older ….and wiser, I’m discovering my on-again, off-again digestive issues such as Gerd and non-acid reflux, coupled with an inflammatory illness, can no longer be chalked up as a thing that happens after I eat certain foods. I’m learning how certain foods that I put into my body over time (along with hormones, and environment) have affected my system. I’m seeing a change with dairy products as well. I’m see that I’m headed towards being lactose intolerant; OK, who am I kidding, I’m probably there, but in denial.

I’ve come to accept that implementing change is more than reaching a goal on a scale, it’s about implementing lifestyle changes, that include getting educated and being consistent in what I do and eat. And I admit, I haven’t been good with consistency. Repetition begets a habit and I need to get into a habit of eating what’s healthy for my root, a new term that as I’ve learned. 

To paraphrase Dr. Vincent Pedre, a gut health expert; “in comparing our bodies to a tree you wouldn’t heal a tree by putting medicine on its leaves, you tend to it from the roots. Our digestive system/gut is the root of our bodies and that’s where our focus should begin. He says, “our gut lining is the biggest absorptive surface exposed to the outside world through what we eat. If we’re eating inflammatory foods, add in stress, GMO’s, food additives and coloring, it’s cooked up a leaky gut that leads to toxins, and more entering our system.”

The added…

Studies are showing the link between gut health, mental health, autoimmune diseases, endocrine disorders, skin conditions, cancer, and the immune system.

We’re in a new space of learning that our bodies have evolved to live in harmony and depend on bacteria, fungi, and viruses in and on our bodies—especially gut bacteria. And that there’s both good and bad bacteria that affects our guts. Bad bacteria can come from external influences such as food, environmental toxins and even from effects of stress on our bodies which can lead to an unhealthy gut impacting your mental health, weight, mood and a number of other digestive disorders. Good bacteria which our bodies depend on for essential metabolic functions, helps to:

  • combat obesity
  • improve symptoms of depression,
  • Improves mood and mental health
  • Boosts energy levels
  • Improves cholesterol levels
  • Regulates hormone levels
  • Reduces yeast infection occurrences
  • Improves oral health
  • Contributes to longer life
  • reduces or eliminates gloating, gas, constipation and diarrhea.

So if you’re like me, wondering what can be done to improve not only my gut health, but my whole-body health, as there is so much information in the universe to absorb; I’ve discovered a few tips that can be used as a baseline that will help as you continue to do your own research and easily incorporated into your everyday practice. And remember if you are having continual stomach and/or inflammatory issues it’s important to see a gastroenterologist.

Food Tips for Good Gut Health

  • Eat more veggies
  • Eat more fiber (whole grains, nuts, legumes)
  • Eat Pre-biotic Rich Foods* which are found in non-digestible foods such as:
  • Bananas, onions and garlic,
  • Jerusalem artichoke
  • Apple skin
  • Chicory Root
  • Beans

Eat Pro-biotic Rich Foods* – which are found in fermented foods such as:

  • Yogurt – but avoid those with high fructose corn syrup, sugar, artificial sweeteners
  • Kefir – a fermented yogurt-like drink
  • Sauerkraut
  • Miso soup
  • Kimchi
  • Pickles
  • Kombucha – a tea-like probiotic drink
  • Soft fermented cheeses (like Cheddar, Swiss, Parmesan and Gouda)
  • Cottage Cheese (only those labeled “Live active cultures”)
  • Buttermilk
  • Reduce junk, fatty and sugary foods
  • Drink more water

*There are also pre and pro-biotic supplements you can take but do your research first.

I know this is a marathon and not a sprint, but after going around like a hamster on a wheel, I say if now when, otherwise I’ll be continually discussing my issues instead of taking my conversation further into how I’m doing hence my changes. Taking it one step at a time.

 

World Alzheimer’s Day 2018 – Eliminating the Stigma

Today is World Alzheimer’s Day a day that may only be important to someone who is caring/cared for a loved one or knows someone with the disease, but it’s a day dedicated to raising awareness that nearly 50 million people worldwide are living with this disease and to challenge the stigma surrounding it.

I’ve had a brief writer’s block a lot due to life stuff, but I’m here and what better day to inject my words and address the stigma surrounding Alzheimer’s and dementia related diseases as well as to bring awareness to people of color on the high risk that we face.

There has been a shift within the past few years towards removing the stigma around mental illness and though Alzheimer’s falls under its own umbrella, those in this fight to end Alz can attest that it’s even harder to get people and businesses invested in, and talking about a disease that currently has no cure. But in rising awareness this is not a sprint it’s a marathon.

What keeps the stigma going?

Embarrassment, fear, culture, not speaking on illnesses, but it’s those fears that keep us close and stuck.

I’ve personally never had a fear of Alzheimer’s perhaps because I faced it with my maternal grandmother, but early on helping my mom, I definitely had moments of embarrassment where all I could do was to stand in that moment and react as best as I could. As I grew in my role as her caregiver, the embarrassment subsided, I had no time for it. I had to use my brain, my mind for the both of us and help her as she was experiencing changes that she had no control over.

As a caregiver you know that things are going to happen; I had to let them happen, I had to be as prepared as best I could be and when they (changes, words said, etc.) were going to happen, I knew that how I handled those changes was going to be key an most important.

I felt sorry for my mom and that empathy turned to my figuring out how to better help her and other caregivers. To begin to remove the stigma it began with talking and sharing and writing and becoming a voice for the voiceless.

As a woman of color, specifically a Black woman where our community doesn’t speak about health crisis as much as we should, raising awareness became increasingly prevalent.  Too often we sugarcoat things, or have feelings that something will subside; now bring in Alzheimer’s disease; a disease with no cure that changes the brain. Just because we don’t speak about something doesn’t mean it’s not going to show up in our lives and it also doesn’t mean that you or a loved one will get it, but we must begin to have conversations.

By staying silent about our medical history with love ones it only hurts ourselves. For instance, there is a link between hypertension and diabetes and the risk of Alzheimer’s disease. Blacks and Latinos are two times at risk for developing Alzheimer’s. And while genetic factors aren’t known to explain a higher-risk, conditions such as high blood pressure, diabetes do. Even socio-economic disadvantages (income affects healthcare) also plays a role. This awareness on how physical and heart health is linked to brain health shows that we have to support one another and encourage each another to get support services and available treatment when needed.

How can you spread awareness and help to stop the stigma?

  • Use your voice and have conversations.

 

  • Use appropriate and respectful phrases.

 

  • Correct misinformation regarding Alzheimer’s disease.

 

  • Help someone you know who may be a caregiver to a loved one with Alzheimer’s disease, it’ll give you a first-hand view.

 

  • Encourage the individual to pursue hobbies, perhaps offer a list of activities they can do at home.

 

  • Consult a physician.

 

  • Attend an event or fundraiser.

On this day even if your life or a loved one’s life hasn’t been touched by Alzheimer’s perhaps you can say a prayer for the person living with AD, for a caregiver or former caregiver or contact your local government office to ask that resources are increased for research and medical care, and to keep everybody lifted whose life has been affected by Alz.

For more information on Alzheimer’s and Women and Alzheimer’s here are a few of the many organizations that I support:

Women’s Alzheimer’s Movement

Alzheimer’s Association

Us Against Alzheimer’s