First, there’s denial, This virus won’t affect us. Next, there’s anger, why are they making US stay at home and taking away our activities? And then there’s bargaining: Well, okay…. if we social distance for just those two weeks everything will be better, right? Now, enter sadness: I don’t know when this is going to end Im kinda scared. And finally there’s acceptance. This is happening; as a family, lets figure out how to get through this.
During this time, there is a great deal of uncertainty, that’s for sure. I am truly empathetic to the life changing aspects this whole pandemic has caused. My heart hurts as much as anyone seeking the images from Europe, NY and hearing how COVID19 is spreading throughout communities far and wide, including mine.
This post is not about COVID19. In this writing, I’d like to explain the grieving process I myself went through, as well as, perhaps, your loved ones, or you yourself are going through having being diagnosed with Dementia.
Although the first paragraph is truly quite an eye opener, I’d like to show how the 5 steps, or stages of grieving can apply to people as you or your family member live through the stages of grieving their own selves. Just a note: Dr. Elizabeth Kübler-Ross added 2 other steps in the chart for grieving in her later research; the shock stage and the testing stage, I am using her first published conclusions using the 5 stage method in this writing.
In the example of COVID19, as above, there is a collective grieving that is taking place world wide, it is a common thread that again, perhaps to some unknowingly observed, that unites us as one world, one people; it places no boarders, no exemption, no religion, no creed: we are one human race all trying to heal. There is a lesson right there.
This process of the 5 steps also happened to me, its still evolving in me; I am not quite sure what “stage” I currently in , but I do believe I am a mix of all the stages.
With this disease, there is a constant and ever changing development of symptoms and loss of skills. So is it realistic to grieve each loss individually, or to wait for a group of skills to completely go away and grieve then? I have no idea.
I do want to let you know that I constantly am in a state of Anticipatory Grief, but I do not have the anxiety that is normally associated with that. I have, thankfully, found a good balance between the future and the present. I choose very much to stay in the present trying not to anticipate what is to come. I do my best to practice mindfulness through meditation and healthy thoughts. I allow myself the feel all the feelings I am going through, acknowledging them and letting my family know just whats going on, it helps so much. My anticipation comes from subtle changes…..they all lead to other things, bigger things. That’s hard to shake.
I can only suggest that we all, those who are diagnosed and still recognized to be “of sound mind“, “still able to function” to coin a phase (arrgh) (that honestly is overused in my opinion) are in this perpetual state of grief. I would also suggest that this constant and ongoing “state” may not be recognized in your loved one, or yourself, as we, they, just keep going. We are amazing, yes we are.
Laughter and humor eases the tension, but in reality, I am losing so much of myself. That is the stark reality I face.
So in the pretense of grief, I’m enveloped by it and have been for a very long time. In reality, it is an intense and damaging thing that I find when I think about it, and it can be overwhelming. But I, with all honesty, am doing quite well, at least I think that, and I know that’s important. However, it can loom heavy no matter the way I twist it…..somewhere way in the back, behind a closed door that I do not dare open fully, only peek into once in a while; its a picture I choose not to look at, not right now.
The first stage of grief, I guess happened, at the first MRI results I received (2015) I formed a change in my life denying the results, almost eliminating them form existence. Denial.
Anger. It happened in tandem with denial. I absorbed myself in a new career. I remained in denial and anger; really didn’t visit my doctor for nearly 2 years, angry that she had no more information for me, no real follow-up, no real care……like it was normal, this kind of shit happened to so many people, its no big deal. I hated that time in my life. I just said ” fuck it” . I took on the “mood” of my doctor and sluffed it off, took an opportunity to dive into a new career, a new “life”, moved away, isolated myself from family and friends, all the time burning inside with anger & denial; unanswered questions, that made even me more angry, I just stayed so very angry inside trying hard not to show it on the outside, but I couldn’t hide it; it leaked out of me like a nasty smell, like the one you blame on a dog, everyone knows the truth, you are not the same. I was in denial and angry and now I was trying to bargain my way out of it. Overwhelmed, alone, and angry. So awful.
Bargaining. WOW! did I bargain. I bargained with excuses, I bargained with reason. I made excuses that bargained reasons for my ever-changing self. This stage was exhausting, both mentally and physically.
Sadness. This happened during the time away from my family, I had moved to another city for my job. It happened as all the first 3 stages joined together in a internal explosion. Even though a confirmed diagnosis had not yet been rendered I knew what was happening. I was so messed up. Being alone allowed the first 3 stages to culminate; join forces together and unleash the 4th stage of sadness, it totally render me helpless; I cried my eyes out moving into that stage of great sadness and longing. It was brutal.
Once I received and “official” I moved into stage 5, Acceptance. But with that acceptance came great relief. I had through those years remained in the crux of grief. Thankfully now, I am through the worst of it, that is how I felt.
I still move through the stages, as my body and mind changes, I lapse into small moments of grief, like when I found my small motor skill were not allowing me to do certain things, but I moved quickly through it, healthier in mind although silent and passive.
With any type of terminal diagnosis there will be all the stages, perhaps with some, as with me, they now become almost fleeting as the initial term of grief ends and acceptance of your own current life, skills and pursuit of happiness starts to kick in.
COVID19 remains a complete unknown to us all, there is no getting past that. I believe in the goodness of everyone, even those people who remain defiant ( in stage 1) of the truth of what needs to be accomplished, I believe they will come around. I have hope for that.
If you are reading this and have been recently diagnosed with Dementia, please know that the despair you may be feeling right at this moment will be made right. You can get through this. I say this with the most certainty as I have been where you are. I have met so many wonderful people who too have gone through the same funnel of pain and anguish, and are happy and as healthy as they can be, living well. It will happen.
If you are caring for someone, as always, be patient. This is a hard process to go through, being given a terminal diagnosis. My grief stages lasted for years. Its a big thing.
I do not in anyway dismiss the changes and loss happening to me. I acknowledge it but no longer grieve in the same way. I , as do so many, strive with the changes and instill new skills to live well.
There is no sugar coating this diagnosis. There is no cure. That is quite sobering and effective to our daily lives. As we, those diagnosed, go through our ever-changing daily lives, we go through it with courage, immense fortitude, ingenuity and invention. To say that we “cope” is an understatement, we strive, thrive and survive.
Grief remains within us every single day, some days small, some days big. For me, I am have an acceptance of the changes happening now and those forthcoming. I believe my perpetual state of grief actually rockets me forward in some way. It kinda lights a fire under my ass to never fall back to the more morbid stages I have previously experienced. I don’t ever want to be in that state again.
I take the loss and turn it into creative new ways of living well, some maybe even better than my life before diagnosis. I personally remain resilient, and as I said above, inventive and choose not to have my daily changes overwhelm me, I believe it has become a conscious decision and that is an impressive choice for life, especially with a damaged brain.
Next…………..
Well, I have recently become quite impressed that I can write a blog. I’m a mess of unfinished thoughts.
When I was younger, I wanted to write. I wanted to write something, anything. I guess I’m getting that done. Yeyyy ME!
Hoping by the end of the summer, maybe before, we can all be singing this song and dancing in the streets! Happy Listening! https://music.youtube.com/watch?v=PGZBUHT5ZUs&list=RDAMVMPMbzP5-VNAo
Stay well my frends xo Jan xo
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