I have deleted my post of this morning. Last night was very scary time for me. Beth was getting worse and I was feeling helpless. And when I am feeling helpless I either try to escape or control. I tried a little of both last night. But ended up still feeling helpless, scared and frustrated. So I tried to figure out how I was feeling by putting my words down on ‘paper.’ I published it because I wanted ‘a voice’, I wanted someone to hear all those screams of emotion going on inside my head. I loved Beth very much
The bleeding in Elizabeth’s ear scared me a lot. It was an ‘automatic go-to-hospital’ event. And yet Elizabeth wouldn’t. And she kept using q-tips when I told her not to, because I was scared and just wanted it to stop. Cheryl and Beth determined that it was likely that a spike in blood pressure ripped the eardrum. But all I could see was the blood that was coming out.
Beth didn’t take a break when we got up from the nap; she wrote emails. The worse she got the more emails she wrote. As time passed and there were even more emails, more passing out, her actions made me frustrated and angry. But the anger went away when Beth told me that she needed to let people know because she was scared she was going to die. She was on oxygen, and I had to use the ambi-bag but she wouldn’t go to bed. She was scared that if she died people would never know that she was thankful for their help, or that she cared. I knew she had already sent emails telling people these things, but with her memory and brain damage she did not. She could feel my frustration and asked, "Am I a BAD person for being scared?"
I kept a close eye on her as her hands turned black, as she had to use the oxygen re-breather but I didn’t stop her as it was important to her to leave these messages. But my feelings of frustration and helpless grew until I needed to write them down. To have someone, anyone listen to me.
Beth finished, and I pushed her to the bathroom. She had wanted to write a note to Cheryl but forgot, so as I helped her she kept say, "Tell Cheryl I love her. Tell Cheryl I love her."
I will be with Beth today as we promised each other than if Beth woke up, we would have an ‘us’ day. I am sorry I ended up deleting the comments from the other post, but that wasn’t the story, that was my scream of frustration. And to leave that up, would only hurt Beth, because being sick isn’t her fault. But it sure is hard to stand by helpless.
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17 comments:
Oh, that explains why I wasn't able to send my comment.
I'll just say that I am thinking of you, too, and hoping you allow yourself some rest and self-care.
For goodness sake, there's no need to apologise to us. You are going through seven shades of shit right now, and if posting your frustrations makes you feel better, or deleting 'em makes you feel better, you go ahead and do that.
Don't feel you have to answer to us!
I didn't read your post, but I can only imagine how terrified you have to be. I so wish there was something I could do to help you.
I just wanted you to know that my thoughts are with you and Beth. I don't know how you feel, or what you are going through, since I have not had to face losing the love of my life, but my heart aches for you.
I didn't catch the other post - at work - but sometimes you have to be frustrated, to let out some of the pressure that has to be building. You're dealing with hard, terrifying things, watching someone you love get worse, and there's not much you can do. You are in a very hard place to be.
I know the words don't mean a lot, but if there's something we can do, tell us. I sent 5 books for you today, all from OR or WA, so hopefully they'll be there by next Friday.
I hope you find time to scream into a pillow or something, that you get a chance to let it loose a bit. I'm sending you lots of good wishes.
You need to be able to scream and yell and get your frustrations out. That's what we're here for. Not that we can DO anything, just to act as a sounding board.
I don't know what else to say. I know, I am male and males like to fix things, and this can't be fixed.
But like I've told Beth, I'm here. I'm not going the way yet.
I think you probably got a chance to see my other comment on the deleted post, so I will just say this briefly: I'm scared, too, and I understand how hard it must be to stand by Beth's side and be unable to do anything to stop this disease.
It is hard to stand by from a distance, too, when all I want is to snatch everyone from the blog family up and take them to an island where MSA doesn't exist and beautiful cabana boys and girls serve pina coladas on the beach all day long, and Beth would find a racing chair that can wheel on sand and hold races with everyone.
The strength of your love and your relationship never ceases to amaze me and leave me in awe.
Sorry for being human? Frankly, you're nearly superhuman as it is. Even super heroes must need time to scream.
I'm just posting to say that I think you are being terrific just now - and you're allowed a whole range of emotions. Beth needs a human being caring for her - and that means someone with real emotions, not a Stepford carer.
My thoughts are with you.
Like Jack said there's no need to apologise. Whatever helps!
The things that are frustrating you are also part of the reason you love Elizabeth so much.
Must be so hard to keep a straight head and I don't think anyone expects you to be some kind of wonderwoman! So difficult to know the best things to do and both of you are having to react, and feel your way. Where's that handbook when you need it?
Don't waste time being sorry -- you're in a scary situation. It's good you're spending time with Beth. Thinking of you both a lot and hoping things will start getting a little better again... or at least, stop getting worse.
Hello other beautiful person. Scream into a blog, scream into a pillow, post your frustrations, post your screams of terror and agony, delete them as needed, or leave them up. We're here for you, Linda. Do whatever you need to do to stay alive and sane for Elizabeth.
You're not bad for being scared; you're human. You're going through the worst part of being married: losing your spouse. And you shouldn't have to be going through this stage for 35 or more years yet. I dearly wish that you and Beth didn't have to go through this now.
But if it's Beth's turn to fly, your being there is helping her. Hold her hand, comfort her, then scream in terro to us if you have to.
I'm here for you AND Cheryl as well as Elizabeth.
Love and hugs,
Neil
I am sorry, seems lame to say that. It's good of you to explain, but you shouldn't have to.
I don't meen this in a touchy way, I just want to know so I can do the "best" thing. Can I send Elizabeth emails monday to thursday, or is it causing her more stress? Because if it's stressful I won't do it.
I hope that you to will have a good "you two" day, I agree with some of the others, your love for eachother is amazing.
Take care and please be as scared, frustrated, angry or anything on your blog, that's what blogs are for.
Anything I can do, please let me know. Not a lot, at this distance, I don't expect, but if there is...
And no need, for goodness sake, to apologise for posting your real feelings... or for then taking the post down. You and Beth are both immensely courageous to be sharing your feelings with all of us (and with many who, sadly, are the opposite of supportive.)
Beth's not the only one who's got guts, you have too, sister.
Love & peace.
Dear Linda.
I am so sorry for what you & Beth are going through. It must be so hard on you, wanting to do the best thing for Beth and yet trying to follow her wishes.
If I e-mail Beth, I don't want her to feel that she needs to reply. I just want her to know that I care & am thinking of her.
I hope things are better today for both of you.
Sharon
Please please please feel free to say anything and share anything. I can't imagine what you three are going through now and the least I can do is listen and send good thoughts your way.
hugs to all of you...
Wishing you both have a good 'together' day... the best it can be. And that you can rest somehow too...
So sorry I missed the howl. Or rather, sorry I wasn't there for you. Completely understandable that you needed people to hear it - I can't imagine how frightened you must be. Scream and howl and rage anytime you want.
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