In less than an hour we will be ringing in 2021. I’m still in disbelief of that and that I haven’t posted in over a year. On my Instagram page I wrote in November of how I felt badly about being an advocate for caregivers and Alzheimer’s and couldn’t get the words from head to the page. And I quote “…all that thought of was what I hadn’t done all year in that advocating space. Overwhelmingly I felt I have been letting caregivers down. I was motivated yet blocked….”
As this holiday season and year winds down, I am preparing to be better in my advocating space. and yet remember a quote that I saw “You don’t have to have it all figured out to move forward.” I’m moving forward and reminding myself to figure it out as I go. Cheers to a better, brighter, healthy New Year!
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.
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.
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.
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.
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?