Grieving(5)

Jewelsrr

This week has been so painful. Knowing can be such a relief but no I cry more. I had to laugh honestly though yesterday when DH was looking for the salt while it was in his hand. He didn’t seem offended.

All my anger and frustration is now resolved with tears and regret. Maybe anger now at how the search for diagnosis took my attention from the last couple of years. Two long years I was  frustrated  and scared by his behavior. 

Now we are at this weird stage of telling some people but not everyone. I feel less alone telling but feel Like I need it tattooed on my forehead since I am so preoccupied and feel so lost in this world right now. 

Trying to get lost in my clients worlds, forget about my own All day as much as possible but sat in in DH frustrating psychiatrist appointment where he back pedaled on his anxiety symptoms and minimizes everything else so I have to tell how much he complains of being anxious and not sleeping. I think he finally took melatonin tonight as suggested since now he is sleeping and I am not.

This sucks, all of it. Thinking of everyone going through it.

Marie58

Jewelsrr, I get it. I believe we go through the stages of grief over and over and in random order throughout this dementia journey. I never know what will trigger the tears for me. I think I'm cried out and then out of the blue the tears start to flow. 

I'm glad you and DH can see some humor in things. That was the case for us for quite a while, but it's been months since DH was able to smile. He's so expressionless now.

I also understand the preoccupied part. I tried to figure out how to not have it on my mind at all times. I just don't think it's possible. 

Blessings to you and DH.

Joydean

I agree with Marie, you never know when the tears will fall. We feel at different times just about all the emotions that a person can have because this is a very long and hard road we are traveling. My dh and I could laugh in the very beginning of some of the little things. That’s been years ago. He seldom smile’s now and speaks very little. But life goes on and we all just keep trying to do the best we can.  Sorry this is so hard for all of us.

storycrafter

We become all too well acquainted with grief and mourning, don't we. I have learned that grief is its own unique, often baffling process, and going with its flow is all I can do. For me that means accepting and embracing it, honoring it, practicing it like a daily meditation routine, as I hope to become more and more adept at processing my thoughts and feelings.

The intensity and rawness of initial diagnosis is especially hard, and the earth-shaking, crazy turn-the-world-upside-down-ness of it was something that eventually passed for me. It takes time. Now I'm in a sort of maintenance mode following general adjustment to the shocking reality.

I'm finding it's a massive opportunity to learn and practice better self care and self compassion on levels much deeper than ever before in my life. Healing old conditioning from family and society, identifying and changing unhelpful previously unconscious assumptions and beliefs has become my life task in this season of caregiving. I have a growing awareness of the ways in which I abandon myself and am working to incorporate a true resilience and self compassion into every minute of daily life.

The above includes learning things like...asking for help, building a support system, discerning what to share with whom and how much to share, noticing when I need extra support and rest, acknowledging it instead of ignoring, finding creative ways to replenish and refresh, learning new strategies for dealing with challenges as they arise, developing "sea-legs" for managing the wild stormy ocean of the world of cognitive impairment and the clueless medical system, recognizing my fatigue and depression and learning how to more thoroughly meet my own needs and those of my loved one, navigating the torturous path of letting go of being a spousal couple, seeking information and ways to continue learning how to move within this very strange new life, finding creative ways to take mental mini-vacations each day (jigsaw puzzles, kenken/sudoku puzzles, reading, playing music, comfort food, TV, calling a friend), practicing gratitude no matter what, crying a lot.... The list goes on forever.

I could not do all of the above without the capacity to grieve well. Befriending Grief is an ongoing effort for me. It ebbs and flows, brings lots of disconcerting surprises and also some unexpected gifts, which are all the more like priceless jewels, bright blessings in the murk.

I've gone on and on long enough. All this just because I wish I could give you a heartfelt hug offering strength. I wish I could take your pain away. Thank you for posting and for the chance to think about how far I've come. I wish you comfort and all the support you need on this difficult journey. Give yourself time and much patience and tons of tenderness and know you're never alone.

Jewelsrr

Marie58 thank you for validating me. That’s the biggest thing I need to give y self right now, is just permission to feel how I do, to cope how I do, and know that it’s going to just be up and down.

Sorry you have moved on to that next place. I am trying to be grateful for where he is right now even if he is clinging to me too much.

Jewelsrr

Joydean, sorry you are at that place too of no more emotions!

Jewelsrr

Storycrafter, I really appreciated all of that!! I am going to  jot some of your suggestions down to remind me what I am gaining. I have been giving that a lot of thought. How much more I am appreciating friends, emotions, Life in general despite the fact I feel I am stuck in this groundhog day that feels so heavy and overwhelming.

I hope that possibly you are writing something about this period as your name suggests? I have begun to do that as well. It been very cathartic. I have had may ideas for books in my mind at various times, maybe that is something I will give more attention to when he can no longer engage.

Ed1937

Storycrafter, what a helpful post! I've seen a lot of posts by you, but nothing to compare to this. Thank you for sharing this with the world.

Jewel, I'm sorry this is so hard. I really don't think you have anything to regret. We do what we think is best at any given time. When things change, we might think if....if....if. But we have to get over that kind of thinking. There is no positive in it. When my wife passed, I thought about the choices I made for her, and if....if....if crept into my mind. But I knew I had to let that go. I did what I thought to be best at the time, and nobody could expect any more from me or you.

MaryG123

Beautifully put Storycrafter, “letting go of being a spousal couple” is my grief right now.  I put on music, clean something, pull weeds, and let the tears roll.  Hugs to you Jewelsrr.

T. Slothrop

Storycrafter,

A fine piece of writing; thank you!  I wish you would say more about “befriending grief”.  Like you, and many of us here, I am trying more and more to take care of myself, to enjoy the moments of respite, with puzzles and gym and friends who know. 

Lately I am investigating MC places, trying to imagine (and failing) how DW might fit; and how I might miss her.  Your essay inspires me to search for those jewels, even in those (mostly distressing) settings. 

Tyrone

T. Slothrop

Jewels,

Your story is heartbreaking, what I infer about it from your young age. I am 72, but so is my demented wife, so somehow it seems fairer, that we each drew our separate short straws. And I feel lucky to have my problems rather than hers. 

I hope you are able to build an independent life, now, parallel or perpendicular, if you want to. 

Tyrone 

Pat6177

Thank you for your post storycrafter. May I ask when you refer to “Befriending Grief” if you are referring to the support group? I googled “Befriending Grief” and the first hit says “Befriending Grief is an open support forum for bereaved persons.” Is this something that you used to help guide you through your journey with grief?

Jewelsrr

Tyrone,

Thank you yes with my younger age I think it’s crucial that I remind myself that I need and deserve to still live. In the past few years I have learned to ask myself how much time I can and want to spend with DH. I try to balance doing some of the things he MIGHT still enjoy, noticing his enjoyment seems minimal at times and I end of up feeling distressed so now I am asking myself how important is this activity to me before trying to include him. Thankfully his daughter has been doing more with him since we presumably confirmed diagnosis. So I am using that time for me. 

When home I just try to do the “things” redact to help him as needed and he seems ok to just have me here doing whatever I need to. For now!

Jewelsrr

Pat, I am assuming she was not referring to a specific group but rather just the concept. I talk to my therapy clients all the time that our Western culture is very grief adverse but grief is all around us, endings, unrealized hopes and dreams, in addition to doing our loved ones. I am trying to allow those feelings to come myself. I am only 51, recently began a new career. Have just been feeling really excited and confident in my career, my stage in life. DH and I just started traveling together more after buying a camper a few years ago. I canceled the longer trips that I couldn’t be sole-driver for this year. All of the acknowledgment and more needs to go into my befriending grief efforts.

Hopefully if there is indeed a group or such she will add to that.