Grief, Forever!

I just wanted to clarify after a recent post.
(CLICK HERE TO SEE POST. Opens in a new window.)

Having gotten some new insight into what it is like to live with Dementia/ Alzheimer's, and feeling badly about some of my past behaviors with Gregory because of having not known what I now know, I wrote that, "I will probably grieve until I die."

My niece, who loves me dearly and whom I love dearly in return, send a comment which said, "Heavy.  Grieve forever? ☹️ I hope you can forgive yourself someday.  Greg has."

She and I talked about this on the telephone after I had given it some thought. I thank her for enabling me to write this!

I tried to explain that I have forgiven myself for the most part but when something new comes up, it brings along the next round of grief and therefore the next round of forgiving.

But more importantly, I really do believe that I will grieve Gregory's death for the rest of my life. I will probably love him longer than that if I am correct in my thoughts of the afterlife!

It is NOT like the traditional wedding ceremony says, "Until death do you part." It goes on and on, even after death.

GREAT LOVE brings GREAT GRIEF!

I have previously addressed the idea behind the bland statement, "Grief gets easier." My theory is that because I continue to live (and Gregory does not continue on this physical plane) I continue to grow and become larger in my understanding of life and death. (Not all people are able to do this for themselves!) 

Because I am larger in my understanding of what it means to me to be alive, the grief I carry for Gregory is proportionately smaller! It becomes smaller if only because it is fixed in time and does not continue to grow the way it used to grow when Gregory was alive.

In one way the good times are fixed and get smaller when compared to the continued good times I experience without him. Also the difficult times have ended when every day there were new losses to grieve and to anticipate so they are fixed as well.

Every now and then something triggers a return of grief: a song, a place we visited, a favorite restaurant, a season, holiday, birthday, etc. For a brief period of time (and the time lengths vary with time as well as in intensity) the growth I have made in the past, and "being larger" quickly unravels and I am back to where I was when that memory was fixed in my experience.

Because I no longer exist at that moment, after the brief period of grief's return, I am able to quickly return to my new, larger, current moment in time and continue on. Recognizing the grief and sitting with it helps that brief period of time resolve itself more quickly, sometimes with greater understanding, and allows that memory to continue as either a good one or if a difficult one which has become a better one!

A few other soundbites:

I have learned to carry GRIEF on one shoulder while at the same time carrying JOY on my other shoulder. 

I no longer fear GRIEF, I have learned to sit with it as a FRIEND with a message.

What would it mean about Gregory's and my relationship if there was no GRIEF?

Never tell someone else HOW to GRIEVE or WHEN to stop GRIEVING. 

GRIEF is a very individual activity.

The most you can do to support a loved one with their GRIEF, is to sit there with them quietly. Allow them to TALK if they want to, allow them to CRY if they want to, allow them to REMEMBER if they want to. HUG them if you ask and they agree. You may speak when asked to join the conversation but usually, a conversation about GRIEF is between the person still alive and the person now deceased. 

If you share grief over the same person, it may be part of your conversation as well but you will have to get support when it is your turn. Do not add it "Me too!" to the conversation when it was initiated by the other person first.

Co-dependence and Dementia: Revisited

In reply to a post by Kate Swaffer: 
http://kateswaffer.com/2016/01/30/co-dependence-and-dementia/ (opens in a second window.)

Kate, your comment says it all: "A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners."

Kate, I feel that the problem with Dementia/ Alzheimer's itself is that in the end there are no winners, only people trying to live their lives as well as possible with a disease that even kindly can only be called insidious!

There will always be 1) people trying to help and succeeding, 2) people trying to help but ending up hurting, 3) people trying to hurt and succeeding. With Alzheimer's Caregiving Partners, whether family or professional;  we see self-serving people and altruistic people, giving people and taking people, informed helpers and uninformed helpers, quality of care people and bottom line financial budget people.

Perhaps closer study and research; using comparisons of  how people diagnosed with other life threatening and life ending illnesses are treated and supported by family, friends, professionals, agencies, governments, etc; could help clarify the dementia caregiving partner model and create one which would be more equal to and more appropriate for the nature of supporting people with Dementia/ Alzheimer's!

I believe that contributing factors to this care giving partnership thinking are more complex than the Dementia itself. In healthy, functional relationships, living life can be easier. In unhealthy, dysfunctional relationships, living life can be harder. Either way life itself can be at the same time a "fight" right beside a "dance" and the Dementia complicates it. This is true not only for love relationships but also family and health care organizations and governmental agencies. Functional vs non-functional!

Finally, with Dementia/ Alzheimer's, eventually the person diagnosed will need to have someone make all of the decisions about meeting their wishes, care, treatment. Eventually the person with Dementia/ Alzheimer's will not be able to make known their needs, wishes, discomforts, pains, desires, etc.

Perhaps the best way to deal with this is for the Caregiving team to try to talk about or put into writing, the details of how the Caregiving Partnership Model might look for the person needing such. Attempting to clarify how they want to be dealt with when the time comes that they are no longer able to coherently deal with life's major as well as day to day decisions can solve a lot of decision problems for all members of the Caregiving Team. Often families and/or the people with Dementia are not emotionally able or willing to be open and honest about the disease and their wishes for the future.

Hopefully in time, with more awareness, the "RIGHT" people and ideas and approaches will win out. I think the best way to continue aiming in the right direction is: "NOTHING ABOUT US, WITHOUT US!"