September is international Alzheimer's Awareness month so you already know this is near and dear to our heart’s here at ALCIB.
This month we’ll be unpacking, de-mystifying, and encouraging those of y’all wrestling with a diagnosis or those who simply want to learn more about what Alzheimers is and how to cope with it. Basically how to be a baddie in the face of dark times. And there will be dark times.
“How do I get home from here?”
That’s what my mom asked when she was at the store one day. We were on the phone (we were always on the phone. I called her before work, during lunch and on my way home—she was my best friend and I was OBSESSED).
It wouldn’t have been such a weird question, except that she was only three blocks from home. And for the fact that she kept asking it. I thought it might have been stress. But it wasn’t stress.
It was early onset Alzheimer’s. My mom was just 56.
Turning away from the doctor’s office after they diagnosed her, I had no tools or information and I could feel my soul shaking. The glitter and vibrancy that I tend to carry around with me was wavering; it wasn’t so sure about this.
The doctor’s main advice was to get her will in order.
She was another number to them, but not to me. As a nurse who cared for people with dementia, she was the one who needed to be cared for now.
She’d always told me, “When you lose your memory, you lose yourself” and worried about being put in a home one day. So I quit my job and I made her a promise. “It’s gonna be you and me, Mom. We’re a team. We’re going to have a different lifestyle but we’ll still have a life.”
Now this was no overnight task, honey. We went through months of learning, researching, and trial and error. Ten years in now and I think we’ve got our rhythm down, but boy, there really is no guide book on this thing. That being said, I could probably open a dang clinic at this point with all of our learnings.
Here’s ten things I now know, that I wish those doctor’s would have told me as we left our appointment on day zero:
- There is life after the diagnosis. Doctors may make this feel like a death sentence by encouraging you to get “financial affairs in order”, but there is a whole life in between shuffling through your doctor’s office visits. Creating a sense of purpose for my mom was imminent to her overall wellness and mental health. Having the hobby of jewelry became her purpose, but it was one of the last things we tried! There will be some trial and error so don’t give up hope after a few shots in the dark.
- “Dementia-proof” your home. Similar to an expecting parent who baby-proofs their space, you can begin to create a dementia friendly home as well. The sooner you do this, the better! Understanding the disease helps to understand the best setup for your environment. Sundowning is a major issue with Alzheimers so changing my bulbs to daylight LED and investing in an Amazon Echo to "assist" with turning lights on and off was a major help.
- Grooming and mealtimes matter. Create space and time for things that might seem like mundane everyday events (like with grooming or eating meals). Making these things special can really help with engagement. For some reason, these were huge ordeals for mom. Other people could be different, but for mom, playing music during these times created an exciting moment she did not want to miss.
- Personality changes. I wish the doctors would have elaborated more on the change the disease would have on her personality. Simple things seemed like the end of the world. Even though she still looked like mom and even acted like mom in so many ways, inside there was a whole world of confusion and frustration happening. This is bound to have an effect on someone’s willingness and ability to participate in really any task at hand.
- Mood-swings and forgetfulness - I know this seems more obvious, but even I would forget sometimes that she was prone to forgetting. Helping someone remember everything they need, all the time, every-time they leave the house is a full time job. Again, similar to a new parent carrying around a diaper bag, invest in an Alz bag, with anything crucial like glasses or medication. Earlier on, mom and I would go out and she would forget to bring something like a coloring book or pen and then have a bad attitude because of it. Be prepared and pack extras.
- Have regular conversations with family about the condition of the person diagnosed. I know this isn't a contagious disease but family members really started to undermine mom’s diagnosis. They would joke relentlessly about her forgetting all the time or repeating herself. I wish I would have been offered a family support group to attend. Eventually I learned to be upfront and call people out when they were doing too much, but I wish I would have been more mentally prepared for this earlier on.
- Simplify everyday routines. Approach things with a more minimalistic style. Confusion is bound to happen, so laying out only the basics and putting away all other clutter add to a more calming, successful experience. A clean space = a clear mind. Really a good practice for anyone, not just those impacted by Alzheimers. I mean Marie Kondo made a whole dang show about it, shoot!
- The importance of independence. Creating boundaries for independent moments will ensure the diagnosed person is able to maintain their individuality and ability to complete certain tasks on their own for as long as possible. Initially I did EVERYTHING with mom, including going to the senior centers with her and participating alongside her. This created codependent behaviors very quickly and soon she didn’t want to go anywhere without me. I wish someone would have explained that risk to me.
- Diet and healthy socialization. At the center of the choices we started making was the food we put into our bodies, and the people we surrounded ourselves with. Even on days when I would have normally shrugged off a commitment, we got up and went. We switched to a vegan only diet and began to see positive results from skin and hair, to memory and attitude. All across the board, we were healthier and happier.
- Depression after diagnosis. This is really no joke. I’ve always been a silver linings kinda chick, and so is mama, but this diagnosis took us in a direction we had never seen coming. We both spiraled a bit and you know what, that is SO okay. There are bound to be dark, and even desperate times, so just prepare as best you can and let the rest wash over you. There is hope at the end of the darkness, there are little moments of joy, especially when you’re forced to keep your eye out for them. Losing a loved one, or yourself, to this diagnosis is no easy thought to wrestle, so wrestle it baby! We can do hard things.
Regardless of where you are in your journey with Alzheimers, or maybe you’re just here to learn (love that queen!), there is a lot I’ve learned about mental health in general through this process. I think the first of which is to just slow down, and give people the benefit of the doubt. We can be so quick to judge and in a world of flippin’ through a feed, hopping on a subway, and running between meetings, who could blame you? You never know the situation another person is in: be patient and gentle.
That goes for you too: be patient with yourselves! If it’s one thing I’ve learned from all of this it’s that people can do incredible things! Stop to admire yourself for a second: take in all that you’ve done and set out to do. You’re impressive, honey! Self-care and self-love go hand in hand boo. Believe that!
Whether you're impacted by dementia or not, we can all benefit from slowing down a little and reprioritizing our lives. It doesn't have to take a scary diagnosis to treat yo-self to a little reality check.
Yours in self-love,
Nikki and the ALCIB Team~