Caregiver, family & friends …Grief & Beyond.

It is called “grief”, but I believe that what I feel, watching my Mom slowly slipping away, goes beyond that.

Mom is now in the late stages of Lewy Body Dementia and I am constantly searching for ways to improve the quality of her life. I have come across suggestions like the use of dim lighting, soft music and a calm quiet environment.  But how do you accomplish that in an institution?  Mom has been extremely bothered by loud talking or noise for a couple of years now, but there are residents that can’t help the behaviors that afflict them…tapping, clapping, chanting, singing, etc. All I keep thinking is that there must be a better way for these people to live out the rest of their days with some privacy, dignity and personal care that more resembles how they would look after themselves if they were capable.  My parents taught me to empathize with others, put yourself in their shoes. I do that with Mom trying to figure out how she sees the world and if there is something I’m overlooking that could make a difference in her world. But right now I am at a loss.

I have done a lot of reading about dementia, caregivers, caregiver stress, how to best look after your loved one with dementia and the importance of looking after yourself.  But what seems to be left out of many articles, is how this disease will make you feel.  The effect it will have on your mind, your heart and your soul.  Sometimes the sadness, helplessness and grief I feel is so deep that it seems to be in a place I didn’t know existed.  Deep in the depths of my soul … the core of my being. Where there are no answers, no one to make the hurt stop, a bottomless pit.  It is an endlessly dark, lonely, confusing place. No one seems to talk about the fact that you may be so busy caring for and trying to figure out each change in behavior of your loved one that these feeling can build up slowly, sneaking in, until one day they find their way to that place… deep within you.  And even if you are able to escape briefly,  you know it’s there and the wave of emotion will hit you again and again and again…like when you are alone or see a reminder of the person they once were or walking out to your car after a visit.  Mom looks like my Mom and my mind tells me she should act and react in the same way she had in the past. But what my mind expects and what actually takes place couldn’t be further from each other. It doesn’t make sense in my mind.

There just isn’t enough known about this disease. We do know, without a doubt, that it is cruel and relentless whether we choose to accept it or not. And how can we accept it? Acceptance is suppose to come after we feel we have done everything we can…and we let go. To me acceptance feels like I am giving up on my Mom and I am not ready to stop looking for answers. 

I have also been reading about grief.   According to Paula Spencer Scott
….The friends and family of someone with dementia experience two difficult psychological states at once… Anticipatory grief (coping with the very real feelings of loss for someone who is still alive) and Ambiguous loss (interacting with someone who’s not fully present socially or psychologically). Although there is truth to both of these, I personally feel neither come close to describing how some caregivers, family or friends feel in this situation. This roller coaster of emotion can be seen in the eyes of other families visiting their loved one. The knowing glance of compassion for your similar situations. Why does the depth of these emotions seem like such a well kept secret.

The word grief makes me think of death, not of what a person may experience living with the slow loss of a person who is still a part of their life. Upon death, those left behind start the grieving process. With dementia you grieve every day and then it continues in a different way after that person passes. I think a new word needs to be invented to properly describe what we are going through and more information needs to be available to help prepare the families of those with dementia.

I will use words from the TV show “Grey’s Anatomy” because I feel it is very well said…
“Grief may be something we all have in common but it looks different on everyone. It isn’t just death we have to grieve. It’s life… it’s loss… it’s change. The worst part of grief, is that you can’t control it. The best we can do is try to let ourselves feel it when it comes… And let it go when we can. The very worst part is the minute you think you’re past it, it starts all over again. And always, every time… It takes your breath away.”

♥We are all just walking each other home♥

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