Sometimes we get buried trying to stay afloat when our brains are fighting the constant fatigue and the brain fog sets in, sometimes we have to not fight it and go to bed, its self-care, its frustrating, but we learn that if we keep pushing we may end up doing more harm to ourselves and then recovery is even longer.
These days, I think about so many who are struggling on many different levels. The world is a different place right now, for all of us whether we have dementia or not. As we go through unprecedented times with Covid 19 and all that it entails, as we see very abnormal weather patterns affecting the world, as we see our local and global economies changing, its at times hard to look for and find the silver linings. Especially given the fact that life doesn’t stop, people still get sick, get diagnosed, wait for surgeries and procedures. People still have to put food on the tables. Yes life is still happening, but the silver linings are still there, we just have to focus more on them than the hard stuff. We will manage the hard stuff, it won’t be easy, we at times will feel like giving in and giving up, but we in the end will come through the other side.
What we can hope for is that as our new world emerges, its a little softer, a little kinder, that we see those silver linings and grasp onto them. The simple things, like being able to hug your children, to go for a walk or hike in the woods, go for a bike ride, enjoy the sound of children’s laughter, enjoy each other’s company. Take more time to help each other, help the neighbors, check-in on those you may not have seen or talked to in a while.
Our world has been turned upside down, everyone lives with a level of fear of the unknown, so acknowledge that we are all a little more on edge, give each other a little more grace and forgiveness, patience, and understanding. Something as simple as a warm hello can make the difference in someone’s day, its true that kindness matters. I talk to many and most if not all are feeling just a little off, some can’t identify why, others feel like they are on such unsteady ground, they don’t know how to maneuver through it.
Staying connected is harder with social distancing, but we should still be reaching out, have a social distance coffee in the park, don’t be afraid to open up and share the fears worries, and concerns.
For those of us with Dementia, who by nature of the illness ( although I don’t believe that, I believe it is by nature of people choosing to make it ok, to walk away, to not work to include then to accept and understand the person living with dementia) (but that’s for another blog), end up being more isolated than many of us would choose. Our support groups become increasingly where we feel connected, and understood, where we don’t have to work so hard to be, it was said at one of our meetings today by someone that they don’t want talk to other people anymore because they except me to be the way I was before and I’m not, so I’d rather just be here where everyone excepts me how I am today. That’s a big statement it speaks volumes to how people with dementia feel. it’s sad, however at the same time but not at all surprising. Those of us that do a lot of advocating are often heard to say ” I have Dementia, but I am not Stupid”. So our get-togethers with our friends and colleagues whether they are on zoom, video calls, messenger calls, video calls, are extremely important. We need the connection. The loss of our ability to go to conferences and to work with the various Research groups we work, which provided us stimulation, purpose, and social interaction all ceased, so our actual social interaction ( face to face) for many of us is very very limited.
We must keep striving to stay connected during these coming months, even though things are challenging us. If there’s one thing that those of us living with dementia are good at its adapting. And Adapting to an ever-changing world at the moment doesn’t have to mean bleak and despair, we can and should look to the silver linings, things like our DAI online support groups, and webinars and most are learning zoom, we have been using it for many things for a long time. It’s one instance where we don’t have to adapt we are already there. Silver linings just look they are there.
Chrissy's Journey 