Just to lighten my mood [!], I've been reading Andrew Holleran's novel, "Grief". It's a Platonic exercise in which a rather thin plot exists to enable various archetypes to hold forth on their particular experience of or views about Grief, so that the book ends up investigating the subject from many different perspectives. I know, I know... it sounds like a real riot. For me, it's a return to a writer I used to venerate in my 20s.Anyway, there was a statement midway through the book which caught my attention, since it brought to mind something that I've often thought about since my Dad died:
"When your parents die, you know, your audience is gone. You really have no one who cares about what you do. But I think somebody has to care about you - someone has to think you matter"
When my Dad died in 1999, I was already writing in my journal that it was the end of historical certainty for our family. I already knew that my Mother could not be relied upon to recall events from our childhood or even from the minute before. She was no longer a reliable Witness to our lives. I didn't yet understand the reason for that in those days, but I knew for sure that Truth had died with my Father. And for that I grieved. Now, of course, the situation is closer to what is described in the quotation above. Even though my Mother is still alive, she is not there to care, in any real sense, what I do. There is no point, indeed, in even telling her things that would only serve to confuse her. She's not even sure who I am, sometimes, unless the staff have been reminding her all morning that I'm on my way to see her. I visit her as I would her grave. *
There's also another pertinent remark, in the final pages, which I won't quote other than to say that it points out that a Carer can potentially make an expiation of their lot, assuaging some guilt through a situation which allows them to act selflessly. This idea hit home, hard. All along I've felt a degree of unreality about the way I've cared for Mum. My actions were outwardly those of a loving Son, but I felt cold inside and experienced a growing guilt about that disparity. It has slowly become easier for me as I've done more for Mum. Maybe I feel that I am a slightly better person for having done all this for her, or maybe I've just got better at presenting the facade and it's comfortable to hide behind it, a small mean unworthy thing rattling around inside a shell.
At some point, does it even matter any more what motivation, or lack of one, lies behind a caring action?
*[I'm shocked that I wrote that]
8 comments:
I've read this entry a few times and am still trying to compose what I'm thinking...
Our family history is now a mystery to me as well. My parents never really talked about our history and now it's buried forever(literally!).
I know exactly what you mean about feeling like you're visiting a grave. I sometimes had that thought when visiting my mom and quickly beat myself up and told myself that I was terrible for thinking that. And hey, now that you've wrote it, I don't feel so evil for thinking it.
It is hard to be the carer for an Alzheimers patient. I think it is very different from other diseases because the mind and memories makes the person and once that starts to go, then it's almost like caring for an object instead of a person.
Someone once said to me that my mom didn't just die this summer; she's been dying for 16 years and I've been grieving for those 16 years (while having to be strong and caring on the outside). Now that she has finally passed on physically, I am a bit of a mess. I am exhausted and drained. I can finally collapse into a heap and bawl my eyes out. I did just that last night. Came home from work (where I appeared with-it all day) and sat in my living room by myself and bawled my eyes out. God, it felt good.
This isn't one of my most thought-out entries. I usually prefer to work towards an epiphany, but this one is a parcel with a few layers of wrapping still to go. However, some of these that I've thrown out there over the past year have provoked more of a reaction.
I'm so relieved that you recognise some of the ways I'm feeling. Yes, my parents never discussed our past (except on the rare occasion when they entertained a guest and I would sit at the dining table mesmerised by tales of the Far East and eccentric ex-pats). Now that my Mum makes up stories about what happened 5 minutes ago, I can't recapture the past through her any more.
I think what you say is true about how the mind and memories are what makes up the person we know. That person is disassembling before me, but she is still a person - just a different one, with different needs which, thankfully, are better met where she is. And I'm glad that we've achieved this transition soon enough for me to have confirmation and thanks from my Mother - she's obviously grateful and has expressed that gratitude at several points over this year.
It sounds to me like you've made a breakthrough in being able to cry. I haven't cried nearly enough yet. I didn't after my Dad died and I'm still so messed up about Mum that I don't even know what I feel. Which is why the entry above is so under-cooked, I suppose.
Thank you so much for responding, as always
G x
I feel like crawling up and sitting in a folding chair at the outer edge of this circle. My mom has had vascular dementia since a large stroke in 2001. I think the cold/distant/unreal feeling inside is a type of protection for the caregiver. I think caregivers need that barrier to continue doing what they need to do. Its like a critical medical situation where you need to NOT pay attention to your feelings, but only pay attention to the immediate crisis. Afterwords you get to fall apart. After I've visited Mom, it takes me hours until I can talk and interact with people again.
And Mom is in a great care facility; close to me. Its clean, cheerful with very caring people. For a bad situation, the circumstances are quite good. But after a visit, I feel like someone scooped out my chest with a grapefruit spoon.
Its like I'm trying to talk to her through a hole in the wall and the hole is getting smaller and smaller. She can still talk. She can't make sentences, but we can still interact on a very vague level. Most of what she talks about doesn't exist.
Thank you for your joining us, Anon. Your explanation of the necessity of that cold/distant/unreal feeling makes sense and I will try and find comfort in that. And your simile about the hole in the wall is the most precise and perfect description I've read about this situation. Thank you so much for your comment.
Greg
Greg, I never know exactly what to say when one of your entries touches me so much. I guess I mostly feel really grateful that you're posting this stuff. It seems so vulnerable, but so incredibly helpful to read. XO to you.
X's and O's always gratefully received and returned.
G xo
Greg,
I have struggled with my own guilt with H, my partner, about whatever might have happened or did happen or didn't happen or what I did or not....
All I know is that while there may be other motivations, caring for someone you love in the way that you do...where you pay attention and act as their advocate when they cannot...is an act of love.
I often feel numb and cold and uncaring...I have to or I will go nuts squarely facing this 10+ year's of grieving that I've been doing. It's just a series of losses with no real end in sight...except death or H becomes completely delusional. Usually, when I feel my coldest it means that I'm not attending to my needs.
We caregivers have to care for ourselves and one way to do this is to try to protect ourselves from the pain that we have from watching them fade away, slowly, and, in some ways, watching our history and parts of our identity go away as well. (I am no longer a partner, but a caregiver; I no longer have a partner, but a client, a job; I remember our history, but he doesn't or just revises it...without someone who's witnessed it with you, nostalgia is just sad or at best irrelevant.)
Having said all that, I am a big fan of having a good cry. I've struggled with this because I am tired of the pain, but what else can I do with it...let it sit and fester so that it affects my health?
But I can't just cry at will...it doesn't come so easily for me. But I can tell when I need to: I just become angry, cold, and so sad, despondent.
My therapist gave me a great trick: find a safe time and place & play the saddest songs you can find or watch the saddest movies you can (Longtime Companion does it everytime for me predictably, for example). And then at some point, you don't need to cry at those scenes anymore.
It's not pleasant, but once I'm done with crying and wailing, I feel like I can go on.
Guilt is part of the territory that we have to navigate, along with grief, regret, anger, and a whole smelly pile of other emotions when caring for declining loved ones.
But, at the end of the day, what we DO for others is what matters and you are doing your best to make certain that your mom is well-cared for in spite of some of the costs to you. And, in my book, that is an act of consummate, unconditional love.
xxoo
asm
Four days later and I still can't think of anything to reply with other than 'Thank you, asm'. What you have written is all so true and there's nothing more I can add.
I shall try and take your ideas onboard but forgive me if the self-recriminations return at a low moment.
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