I don't even know what to say --- I think all these things to write and then I stare at the keyboard thinking --- what? What do I say?
All I know is I'm not in a good place --- and it sucks and it's stupid.
I am not dealing with this so well. And few people even comment here, anymore -- I feel so alone, I feel like no one cares. I wonder why I even blog ---
And I know, everyone thinks I am "so strong" --- oy
I'm not. I guess I'm just supposed to "pop up" and "go on" -- shoot. That's not happening. Sorry.
I have been grieving for so long -- it's stupid... "Stupid" seems to be my new word. Everything is stupid, these days. My whole life seems stupid, right now.
But back to grieving ---
I have been grieving for more than 4 years. I grieved the loss of Bob -- Bob pre-stroke (old Bob), the man he used to be, before the stroke - I'm talking about the charming, articulate guy with the 145 IQ, who used to make me laugh. The guy (pre-stroke) who fixed things and loved to dicker for deals when we were antiquing -- the guy who used to drive The Green Machine, his arm around me, windows open, going for a day trip. Damn, I missed and mourned that Bob. For so long after the stroke.
And I went through those grieving steps, you know, the Denial, Bargaining, Anger, etc. finally getting down to Acceptance -- which I finally did about a year ago, Acceptance that Bob (the new Bob) would never fully recover and, OK, we would deal with wheelchairs and immobility and feeding tubes and aphasia and but still, cognitively, he was getting better, so I had hope and plans for "new Bob" ---
Plans for a therapy room here at the new house (because we finally had money from the settlement) , buy a NuStep and put in bars and hire a PT for at-home therapy, also putting in a pool for aqua therapy, hoping this would make him stronger. I would have been happy if he could just get to a pivot and stand sort of mobility. It was worth working toward. And having the Bobmobile so we could go out and about, do something fun now and then. Trying to get that new power chair more comfortable so he could tolerate being up for more than an hour --- just got a RoHo cushion approved by the insurance (no small feat, took months!) and was still trying to get adjustments to the chair, etc. I actually thought that I could get an OT here to figure out how to get an art easel that he could reach from the power chair as he stopped drawing because of his neck issue which caused him so much pain but thinking maybe in the chair, instead of in bed, it might be a better position and I thought we could maybe figure something out to get him drawing again. And I had so many plans and hopes for him. I even found a group that exhibits art from disabled people and thought that, maybe, we could do that and wouldn't that be great? I had so many plans -- what we could do or try to make a new life for Bob and me.
And then he died. In his sleep. And after all of that, it seems so stupid. And fruitless.
Damn. And now I am grieving again, I'm now grieving for "new Bob" and also "old Bob". So I'm grieving two Bobs -- and I know, that sounds really really stupid....
Everyone seems to think I should get over it. Be over it. Go on etc.
And I am sorry that I am not over it and I am still lost now. I don't even know what to do. I am a mess. I don't know what to do -- everything I planned, everything I worked toward (the lawsuit, the new house, the wheelchair accessibility renovations, etc.) was for Bob and now he's not here and I don't know what to do now because everything came to a screeching halt and -- I don't know where to go from here.
And I just thank God that Ripley and Kona are here -- giving me a reason not to jump off a bridge.
If you are reading this, and care, please leave a comment. I stupidly need comments/support right now.
And sorry to be so needy...
34 comments:
My heart goes out to you. Like you, I miss my pre-TBI husband and am still struggling to accept why God allows a random attack to a good man on his way home performing a charitable errand.
Take care of yourself and live one day at a time. God bless and hugs!
Of course I will comment....I am so sorry for everything you have gone through. I am so sorry that life is so hard for some of us more than others. Boy do I feel a bit of resentment when I see healthy couples out together...I resent that they have no idea that it could be taken away from them in one minute....
You my dear, were handed a double dose of this bad deal...and you have been strong and positive and kept your sense of humor and you have shared your story and it has had lots of meaning to very many. Thank you for continuing to blog - even if it s blog wondering if you should continue to blog...yes please do continue to blog. I would love it if you commented back sometimes too. sometimes I wonder if you have read my comments...have a better and better tomorrow and the next day and the next day...
Oh Lauda, I always read the comments, I usually don't respond unless someone asks a question. But know I always read and it always makes my day to get comments.
thanks for all you your comments!
Hi Diane,
I don't think your grief is at all abnormal. People grieve in various ways and for being lengths of time. This really hasn't been very long. You mentioned earlier you were going to a grief support group. Did that help? Not that it would right away but do you think it may, eventually? I was reading recently an article about grieving which I wish I could put my hands on...if I do think of a way to retrieve it, I'll try to send you the link. It struck home because it talked about the ways of dealing with an overly long grieving process...which I don't think you have done yet...but you don't want to do that if possible. I was stuck on grief at my sister's death for ten years. And the article made me realize that had been unhealthy and that I should have gotten help...which I hadn't. I think you need to reach out to try to find people to connect with..too..regardless of the grief, I'd possible though derision might make that very hard to do. Church? Writing group? A job? That could help.
You had a beautiful love for Bob..one of those rare (5%, I read at some point) marriages that was of soul mates. Most people don't have that and maybe that's what makes your grieving process and intensity so difficult to understand...especially when caring for him was such an intense and non-ending job which you had no significant help with. I think many people would see his death as possibly freeing for you. But many of us are hardwired...maybe most people, so that it is good for us to be caring for others. It is a giving of ourselves for someone else and despite how hard it sometimes is, it gives life meaning, purpose. So what does one do when that is taken away? That seems to be another issue...and I don't have an answer but to even look at your situation that way might help YOU find YOUR answer. You are a beautiful soul and a talented writer. Don't give up. Life will get better. The world would miss you terribly if you gave up.
Hi,
I'm reading, I've been reading. I'm going to be honest now with you. I feel like since I didn't "find" you and Bob until early this year, after my David had his stroke, that I really don't "count" much as far as being on your radar. Like I'm commenting, but my comments may come across as more for me than for you. Does this even make sense?? As I'm typing all of this, I'm thinking I sound like I'm trying to make stuff about me...And often when I've commented on your blog, and shared stuff about my hubby and I, I honestly am sharing it with you, because you've shared your life, your experiences with me, with all of us.
But then right before I hit the enter button to post my comment, I debate with myself...
I think, "Diane doesn't know you from Jo Schmo..And why does your comment matter? Does it really matter?..".
But then I always think back to January 30, 2015. 37 hours after I'd called 911, and David and I 1st arrived at the hospital. The moment my world shifted. When a Dr, (yet another new one, as it's Hospitalists that see a person these days) came into the room and said, "Um, I'm sorry, but I've looked over your husband's records, and I just called the Radiologist who read his MRI, and your husband's had a stroke. I asked the Radiologist are you saying it looks like it COULD be a stroke?... The Radiologist said, I'm calling it a stroke, a left cerebellar infarct.".
So, I heard that Dr. I saw my husband's face, and the bewilderment. And inside a big part of me was screaming. Like that painting by Munch. But outwardly I was calm. Because the man I met at 16, married at 18, had our son with at 21, and was fixing to celebrate our 32nd anniversary with the next month, was looking directly at me. Into my eyes. Brown eyes to green eyes. The man who has been my quiet strength, my rock, my cheerleader, was now the ocean, the waves crashing...And I now was the rock...
You know, I can't even really tell you what exactly was said. Except after the Dr left the room, I took both of my husband's hands in mine, green eyes to brown eyes, I told him I loved him, and we were going to be ok.
As soon as he had drifted back to sleep, I did something I rarely do. I got online, and your blog was one of the 1st I found.
So every time I post a comment, and I hesitate before I hit the "enter" button, because I tell myself, Diane has so much going on, she doesn't know you, you don't really know her, etc... My mind drifts back to January 30, 2015. And I hit the "enter" button. And I post my comments. And I hope when you read my comments that I've been able to convey even half of what you're able to convey.
I will not say I know how you feel, because I don't. But I want you to know, please know, your blog, your story, Bob's story, your stories together, have touched my husband and I more than all of this long "novel" of words I've just written can ever convey.
You have a gift for writing. And not just putting words on paper, but conveying feelings through your words.
I pray things ease for you...And I'm sorry if this seems rude, but anyone who says you should be "over this" needs to learn sometimes it's better to not speak. Grief is an individual process. And I would never presume to tell anyone how they should grieve. I also don't think a person "gets over" the death of a soul mate. A person grieves, learns how to move forward..maybe...maybe has a few steps back...then forward. Learning how to get through...even be happy...but "get over"? I think not.
With regards and prayers,
Kandy and David
I have to add to my above comment, as it was too long (did I mention I talk quite a bit? Haha).
During those 37 hours prior to finally finding out my hubby had the stroke, I'd been telling any and every medical personnel, and some that probably weren't, that, "No it's not an atypical migraine, or an Addisons crisis, or an MS exacerbation..".
And in some cases, that old saying, "Ignorance is bliss" just may be true. Because my degree is in OT. I've worked with many stroke survivors. And Diane I know you know that 37 hours is a long time when blood flow has been restricted to any part of the brain...
I will hush for now. Please know many of us care about you, and your 4 legged family members.
Take care,
Kandy
I have a link to your blog on my list of favorite blogs on the right side bar of my blog so I can check every day to see if you have posted. I haven't commented since Bob died because it's hard to avoid platitudes at this difficult time. A grieving support group would help you see your grieving process is not abnormal and other people don't "just get over" a deep loss.
Stick around. You've much to do. I'll call you after work today (Saturday). Love you!!!! ❤
Diane-- I am here and have been reading for some time now. Thank you so much for continuing to tell your story. You truly are so strong (even if you don't feel that way), and I have such admiration for you. My father had a severe left side ischemic stroke in January 2013, and is now in assisted living. He was so smart, had his own dental practice for over 40 years and was still working every day, was so independent and self-sufficient, and it is so painful for me to now watch him in his current state being so dependent on others for absolutely everything. I hate it, and I hate not knowing whether things can ever get better or how long this will go on for. Stroke is so cruel.
I am sending you hugs and good wishes that you pull through this rough patch soon. Seeking professional help to talk through all of this grief has been so helpful for many people in my family over the last few years. If that's something that's available to you, I would definitely recommend it.
Diane,
I am so sorry you and Bob had to experience such heavy struggles. As usual, your post touches my heart. You are an amazing woman. The love you and Bob have for each other shines through in every post. Please don’t stop writing. You are an inspiration.
I wish there was something I could say to help. Grieving takes as long as it takes. Be as patient with and accepting of yourself as you were with Bob. You deserve the same love and care you provided.
Thank you everyone, sorry for my pity-party. It's been a tough week, waiting on electricians to fix our generator and a tropical storm barreling this way and issues with my health insurance, etc.
I start a grief support group next Thursday. Hopefully, it won't be flooded out.
thank you again
Hey Diane - I've been following your blog for a year or so now. I pounded my fists when the lawyers were dicking you around. I jumped for joy when the settlement finally came through. And I sobbed when Bob passed in his sleep. The internet can be so misleading in its anonymity. But, like so many, I have quietly been here as you continue to share your story with us. And like so many, I am quietly rooting for you. Praying for you. Looking up into the sky and thinking about you. Please keep writing to us. The story has so many chapters left.
I'm so sorry you are going through this. I know its so hard to see someone you love go through the horrors of a stroke and to deal with the damage that is left is just horrendous. What you have been through has been quite a journey and I know that this new road that you are on is going to be so different than where you have been. I am glad you have Kona and Ripley there to be your partners through this new stage.
Diane, Most of us do not know what are you going through because you are the owner of your emotions and feelings but sure if make me sad to read you feel so lonely and empty, I wish we were closer so I could stop by and visit you and hold your hand, I worry about you, please be careful and let us know how you feel, we love to hear from you. Keep us updated with the grief support hopefully helps you in the ways you need to be helped.
Hugs,
Yadira
Diane, there is no time limit on grief. Like the stroke journey, a journey through grief is very individual and intensely personal. It is natural for you to feel lost and alone. The love of your life is not there to spend your days with. But I truly believe that Bob is still with you. He will always be within your heart. I wish I could say something to help you feel better. I hope the grief support group helps. Please know that I think of you often and sending you vibes of peace and comfort. I wish we were closer so I could give you a big hug, sit on your porch with you and cry and laugh a little too. Please know that I am here and that I care. You have been such a warm, welcoming person along our stroke journey. The love you have shown others has truly made a difference. Please never forget how wonderful you are.
You were the first person I met on the stroke site and I liked you immediately, tho we have never met in person. I connected with you because your loved one had a stroke (mine was my mother-in-law) however now I connect with you because your husband passed away. My first husband passed away in 2007 from brain cancer. I did not much about the internet, nor blogs, and I had one good friend to confide in. So now we have two things in common, but sometimes I still do not know what to say. Please be strong. Cry - when you need to, but you are alive and need to go on with life. One day you will be putting one foot in front of the other, you will be making decisions, you will laugh when you are alone. But these things will only happen at your speed and when you can handle them. That IS NOT STUPID that is your healing time. Luv ya - Trudy from Texas
Diane, I too hate being considered the strong person, it's hard to get someone to acknowledge that these people also need a quiet hug and a 'I'll be there for you when you need to talk.' That's all I have.
Dean
Diane, a friend/fellow widow sent me this on FB this morning. It might fit your sense of the absurd..https://medium.com/keep-learning-keep-growing/i-m-sorry-i-didn-t-respond-to-your-email-my-husband-coughed-to-death-two-years-ago-9e12c93c92fa
If it dost not, feel free to delete this comment.
Diane, I always check to see if you have added a blog. When you don't I begin to worry. Having no other way to contact you. You are not alone. You are loved by many of us who you gave hope and strength to. I only wish I could repay what you have given me now. Losing the love of your life is impossible and to tell you not to grieve is insane. However, I wish you could find one thing that would give you an interest. You are such a good writer, maybe put your life with Bob in a book. Please take each day and keep going. Kona needs you and so do we.
Love
Peggy
Diane, you are the first blogger I ever "met". You are one of only two I follow. You are in my heart every day, as I juggle my feelings of loss #1 (widowed by bladder cancer), loss #2 (my second love's stroke). Your struggles are shared with such candor and vivid description that I cannot imagine navigating without your voice in my head. Please keep on, even if it feels vapid, or repetitive, or needless, or any other negative emotions that prevent you from writing.
Your writings on therapy gave me hope and information. Your writings on loss and coping/not coping give me insight. Please keep on sharing with us.
Don't let anybody make you feel like you're doing it wrong. You are the expert on you. Those people have something else going on, and it's all about them, and has nothing to do with you. Trust yourself. You got this.
Get over it....hmmm. That's like telling someone who's depressed or has some type of mental health issue to "come on, your fine, let it go".
Seems as though your life has had one focal point for years now. It had a purpose and it brought challenges that you fought through. Then in one night it all changed and there never was a plan for that. Easily you breezed through all that was to be, like it was still in the works. Therapy room and equipment still fresh in your mind. Day trips, the green machine, the Bob mobile, plans to escape the four wall and have some freedom and fun.
I'm no doctor Diane but to me it's not just the loss of Bob and mourning that loss which affects you.Every morning you woke up to his voice and it was "game on". The list of things to do was longer than the day itself. Finding a new purpose for getting up in the morning is going to be the challenge and that's different that mourning the loss of Bob.
Change is hard. Your going to need help with that. Making new plans for the future, whatever that looks like will be hard to do. You now have the time to get the help you need. It's no different than the help Bob needed to get better and you worked hard to get that help so find it for yourself.
My wish list list for you is still enact and I hope they all come true.
mike
D, Read the link Stephany Harvey sent. It's excellent.
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Diane,
It's not stupid! "Getting over" it is hard and not something we want to do. Did you read my email? You are not alone in this grieving process. It hasn't been that long since Bob died. It will take baby steps forward to be among the living again. It's not some place you've been in years, just like me.
I still grieve my own stroke--and my wasn't nearly severe as Bob's--and I didn't lose a beloved.
Grief isn't stupid. It's a process (maybe never-ending?). It's messy. You are entitled to your grief.
Love,
Grace
Thank you everyone, I so appreciate these comments and need them right now!
Stephany -- great link, thanks for sending it. Only hope I will get there in two years!
Kandy -- your comments DO matter! I love them, keep 'em coming!!!
Just to know that our struggles have helped or inspired people --- means so much to me.
Jo -- I e-mailed you back. thanks.
And thank you again, everyone!
My apologies for not commenting for awhile. I've been doing some traveling and have had limited access to the internet while doing so. But know I've never forgotten you or the situation you are in.
I should probably write this as an email to you, but perhaps I can help others with a long comment here.
I know the difficulties in losing a loved one after years of caregiving, and though I was able to move on fairly rapidly, I know of others like you that had extreme difficulty in doing so. Like you, I went through all the grieving steps, basically twice. Once during the years of caregiving and the realization my wife would never be the same and particularly when she started her serious downhill ride to her final days. And again when she was called by our good Lord. I have to admit, the first grieving process was the most difficult to deal with.
Moving on can be extremely difficult, but it is something we need to do. But moving on can take place in many ways and over different time periods. First, is dealing with the grief and the loss. I believe it is important for you to join a grief support group, or see a grief counselor to begin that first step. I'm glad you are doing so. Second, and equally difficult is to begin removing the "assist/medical" devices from your home. It doesn't have to be all at once, but perhaps one device per week until they are gone. Third, though right now everything of Bob's is special and important, normal clothing and effects need to be boxed up and donated to a good charity as soon as you can tolerate it. For me, I left the house and had my daughter take care of clearing out the closets and chest of drawers about 3 months after my wifes passing. Her power wheel chair I donated to a local handicapped man that I learned couldn't afford one and insurance wouldn't cover, with his promise to pay it forward when/if he could no longer use it. Items that were very close to her have been placed in a curio cabinet for special keeping.
It's been 2-3/4 yrs since her death, but there isn't a day that goes by she isn't in my thoughts. She was part of my life for 35 yrs, but I know she wanted me to move on with my life and live it to the fullest. I suspect Bob would want you to do the same.
I am now volunteering some of my free time in helping other new caregivers locally. Most do not know of agencies and assistance that is available to them. Some need help with meals, cleaning, or shopping, and I try to do some for them on occasion. With your experience in caring for a stroke victim as well as being a long term care giver, share that experience with others. Become a speaker at caregiving events, be an advocate for stroke victims on the local and state level. Become active in activities that get you out of your home. Help others that are now in the situation you were.
Just know you are thought of and as you can see from the comments, many, many people have been touched by your blog and experiences. Don't ever give up.
Thoughts, prayers, and hugs,
Dan
I'm not going to pretend to know what you are going through and I hope I never do. You totally did everything you could to make things comfortable for Bob and you should be commended for that. You said that people rarely comment anymore? I've try commenting anonymously (which I'm sorry, honey. It is an option) and you chastised me for that and asked that I come forward with my real name. I quit commenting.
You are commended for the soldier in you while Bob was with you and now it is time to take care of self
Hugs from Ohio..... be happy I am not sending snow
Quit crying you little bitch. Not the only one to loose someone (in your case pretending) to love someone. We know the amount of the monetary value you cheated the State for....Stop this joke of a blog before we contact the other side............ hmmmmm.......Cry baby Cry....You never gave a crap about him or any one else.,:P
What's the name of your medium?????? Your time is almost up.......watching you....watching what you spend.............you can run but you can't hide.
Hi Diane~
Can you have lunch next week?
Miss and love you~
Tiffany
Diane, Threats need to be reported. No needs to live looking over their shoulder.
Mary Ann
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