Perpetual Grief is discribed as something that is “Occurring repeatedly, so frequent as to seem endless and uniterupted”. This describes life living with Dementia.
I actually made a whole presentation called Unattended Sorrow, it was supposed to be rolled out to the long term care staff for the Health Authority I worked for, cut backs stopped it from happening. It was meant to address the often many losses that the workers deal with and its impact on their well being.
I think about that often as I move through all the losses I face on my dementia road. Maybe in some way it actually helped me be able to understand the losses and the importance of addressing them.
( Wow at times I forget how capable I once was), still am just in a different way know.
No we are not all depressed, but we most certainly wake up feeling changes within ourselves, feeling the frustrations of finding one more thing that we can longer do as we once did. This creates a sense of loss and grief.
I felt this again today, as I scrambled not being able to keep straight what day it is, then deciding to attmept to make muffins, and as you can see in the pictures, it was a disaster and another reminder of what is not longer working in your brain (despite that fact that I look just fine). No idea what the missing things were, or to much of or too little, regardless they are all in the garbage. And I am left with the realization, that very little of these kinds of things come easy for me anymore.
I was an excellent cook, I created and baked many delicious items, I loved to experiment in the kitchen, I use my kitchen very little these days, and this is one example of why. even trying to put together what would seem like something very simple like a salad can be daunting.
These are the bits and pieces that people don’t see, these are the losses that we have to manevuer through, and it is perpetual.
This doesn’t mean we shouldn’t try, sometimes it works sometimes it all comes out right, and anytime we are attempting to do things is good for our brain, maybe not for our self esteem, but good for our brains.
Most of us can go through our days very aware of the many things we come up against that are more challenging than yesterday or the day before, and some days we get up and everything works, like there is nothing wrong, we don’t control it, we can’t control, becasue if we could I don’t know any of us that wouldn’t be running to sign up and get back to doing things we always have. I no longer have people for dinner, to difficult to figure out if I could pull it off, to humilating to have a big dinner flop, easier just to forgo those things, yet they are things that I used to thrive on, barely finished one dinner party and planning the next.
I have learnt to just ebb and flow with the changes, it doesn’t mean it easy, it doesn’t mean there isn’t days like today where the reminders and the losses to hit you like a ton of bricks.
It is important to remember that if you know someone with Dementia, their losses and grief are very real, it comes at different times, most to live in it, but they do have to live through it when it hits, having the capacity to have the empathy and undersanding can help them immensely.
Ok today is a real mixed bag of stuff, but another picture of what my ife looks like, alot of notes, that likely make no sense to anyone, that I look at and have to try to figure out what it is or was referring to and the context around it. So I’m going to try to have a little fun with all of these things here, I may have written about them in the past ( this is likely), or spoken about them, but here we go.
Age Matters in Diagnosis – why did I write this down, I have no idea, but I do know its important, and to me its important because, when a diagnosis is handed out it should have alot of consideration given to the age of the person, we will deal with accept and handle the delivery very different at 45 or 50 than at 80 or 85. Why? Being at different stages of life, what we may want or not want to do with the diagnosis, and how we handle it emotionally will also be impacted by the age we are at. Are we at the end of our life journey, at the middle of it, at the peak of what should be our best years? All these things matter and they need to be considered when delivering the diagnosis.
Relationships – Recieving a diagnosis can and often does change the relationships between spouses in a marriage. When people are frightenend, because we have yet come to a place where a diagnosis delivery is done in a way that promotes the hope, and the tools as to how to continue to live instead of going home to die. The dynamics quickly can change. I dislkike the term caregiver, we give to spouses, and it happens almost immediately after diagnosis, ( we need to change this), the spouse is still a husband or wife first and should be made to feel that way, but we ( society in general) immediately starts to refer the undiagnosed spouse the care giver. Taking care of each other is part of being married, we should’nt label people they are the husband or wife of someone living with Dementia. Lets try to remember that first and foremost, lets help them thrive together in their uncharted waters.
These labels create unneeded and for the most part unwanted feelings of making the person living with to feel less of a person, our person hood is important, it effects the self asteem, our sense of self, our sense of being a partner, leaves on feeling somehow inadequate.
It can also instill the feelings of regret, guilt and anger, within the other spouse. Labels – I disagree with them.
Perceptions to Reality – Sometimes its like people are mad at us, at times thats what we precieve. When in reality its sometimes that people are walking in terrioritory that feels like walking in quick sand, they don’t know how or what to say to us. They are going through their own sense of loss although many don’t or arent aware or refuse to accept that, they are griefing thel oss of a spouse as they knew them, or a friend as they once were. So at times what we percieve or what they precieve may not actually be the reality and if we are lucky we can have open and honest conversations with people that will allow us to help each other move beyond perceptions that can damage relationships of all kinds.
Making Decisions are a Different Process that those by people without Dementia – If we make decisions that are not the same as you would or that you think we should, it does not mean we are not qualified to make decisions , its just we are making them from a different place than you are.
This is because we live with a terminal illness, it changes how we precieve life, how we precieve the world. It doesn’t mean we aren’t capable it jsut means it might be more difficult for you to understand our thought process that makes us arrive at the decisions we do.
Ok I could give you a ton more of my notes, thoughts etc. but that’ ll do for know. You see when my brain is struggling to do things like make muffins, it takes me to that place, which by the way wasn’t there before my diagnosis, it is one of the silver linings of my dementia, it sends me to my writing desk. my brain relaxes here, it quiets, it is happy here. I can no longer remember ( actually thats been on going for a long time) rmember what I write, but it does allow me to write, for this I am grateful