It's~A~Resonating~World
Grieving for Myself
Click here to see 36-minute video
A person feels grief when they lose part of themself such as their health, lose a capability they had before, or lose their future as they were building it. These are Grieving for Myself, which is different than grieving other losses.
I have dementia and am disintegrating physically, mentally, socially, and functionally. Since my diagnosis with dementia I've been Grieving for Myself. I did not relate to my feelings and actions as Grieving for Myself immediately after the diagnosis, and the constant severe changes in my life did not allow me to see the flow of grief that resulted from what was happening. This would be even stronger for people like Caregivers and Families, who can be grieving for the person they are caring for and grieving for themselves.
Like many things in the surrealistic world of dementia even the word "grieving" has a different meaning than what is usually used. "Grieving" means that what was, isn't, and what wasn't, is. In the descriptions below "grieving" includes both loss of old and creation of new -- grieving in dementia is very deep and often un-understandable changes that are happening in my life, of all kinds.
From where I am now I can see the flow of Grieving for Myself that I've gone through and am going through:
-
The Initial Shock -- no thought or feeling could help me during the first period after the doctor said to me the word "dementia". What had been a reasonably normal life turned black and tiny, and the only two words I had became "death" and "dementia" and my activity became minimal. My functionality was very reduced during this time. At this stage Grieving for Myself was for my whole being, and I felt it even though I hadn't defined it and wasn't "thinking" it.
-
I'm Dying and I'm Living -- the initial shock started to give way to the next stage as I realized that even though dying had become so enormous for me, I was still living. This was a very large realization, because I'd always thought of the process as born > life > die > death and my reality became Living<>Dying together as described at Living~Dying Duet. At this stage Grieving for Myself was for losing the world as I knew it and having to figure out my new reality.
-
My Brain Isn't Working Right -- the doctor put me through a lot of brain-tests and declared that I have MCI Mild Cognitive Impairment, meaning that my brain is working less than it had before. At this stage Grieving for Myself was for losing part of my thinking capability, and my ability to think well had always been a strong part of how I felt about myself. It was at this stage that Grieving started to take on an additional meaning: Growing. As my Cognitive capabilities shrank I felt that this was leaving room for Emotions to have a larger role in my life, and so next to "MCI" Mild Cognitive Impairment I created the label to use for myself "MEE" Mild Emotional Enhancement as described at MCIandMEE. The emotional increase led to Breaking Barriers in how I related functionally to the world, and at the same time the cognitive decline led to Breaking Rules that had limited how I related socially to the world.
-
New Words in a New World -- together with grieving what I was losing I started to recognize and explore things I was gaining. Also, I started finding myself in new feelings and situations that didn't even have words in the English language to describe them so I created a new dementia Vocabulary. The vocabulary continued to expand, for example after the phrase "MEE" I developed the word "Feelingfulness" to provide an additional aspect next to the commonly-used word "Mindfulness". At this stage Grieving for Myself was the fear and confusion of trying to find my way in a surrealistic world that was unfolding as my condition continued to develop. I felt this strong fear and confusion at the same time that I started feeling Dementia as Release and grief as an opportunity for growth as described at Grief-Growth, and did things like Creating My Tombstone. These all very much distanced me from the world I recognized, as did my now-frequent feeling and use of the phrase "I need help" in various situations.
-
??? -- a set of physical, mental, emotional and social changes and challenges that hadn't appeared before, that may be the result of the dementia, of Grieving for Myself, of unrelated causes, or of a combination of these causes.
-
Options to Avoid Dementia -- having dementia as a growing part of my life has been part of Grieving for Myself from the beginning. This grieving for what my future would be brought me to feel and think of the choices I have for my future as I feel I'm disintegrating because of my dementia. Timing is a tough topic -- based on the action I choose, the action will need to be taken "too soon", while I'm still lucid and capable.
-
My Family -- as Grieving for Myself has become clearer I am able to look at how my feelings and actions would affect my family and what they are going through. In some cases this changes the things I choose to do, and in other cases changes how I do them. Whether right or wrong, I chose to decide by myself what actions I would take rather than having conversations with others about actions I was considering. Nobody else has a role, responsibility, or ability to change any action I choose to take. I choose this approach out of very deep love for my family.
-
Grieving+ -- Grieving is very heavy, as it must be. I can't change Grieving, but I have paid attention that there are other feelings that have become present next to Grieving. Alongside Grieving there is now Celebrating good things that were and are in my life even with my dementia, there is now Letting Go of things I have been Grieving but accept that they are gone, there is now Discovery of things I hadn't felt before (for example taking a Trees-Walk, paying attention to the magnificence of the trees during my daily walks), and there is now Music that I've discovered can have quite an effect on my Grieving. Grieving for Myself now includes these feelings and others, alongside the sad and scary and separating feeling of grieving from my dementia.
-
Forms of Remembrance -- Grieving for Myself continues to develop and entered a new phase for me as I felt how I would prefer for others to grieve for me and remember me as described at Creating My Tombstone. I have dealt with this by developing ways of grieving/remembering such as Epitaphing which is active remembering, seeking religious guidance on dealing with my dementia, and adopting the I-Have-Now approach, all of which may well be ways in which I am dealing with the feeling of loss of myself that I am continually going through as I feel the increasing effects of my dementia.
Grieving for Myself has been very present and a strong influencer on my feelings and actions throughout what I am going through, even though it has not always been obvious or easy for me to recognize.
And I already know what the end of Grieving for Myself will be, because there are days that I already feel it. It is an incredible feeling of completeness and readiness for what I have planned and prepared to come next.
Grieving for Myself is part of