...but I can't. I'm too exhausted. What is it about hours and days spent in the hospital that are so draining? Not really doing anything physically difficult...but feeding and entertaining and advocating for my mother-in-law. Trying to meet the needs of someone who can't communicate at all but is awake and alert.
I told my dad-in-law this morning that I don't know how he does it day after day. I'm only 37 and I was plum petered out last night. He says "I don't know but I can tell you, I sure sleep well at night". What a trooper. Not that he has a choice...but still.
Dad said a meeting with the neurologists this morning was not very encouraging. But I have a feeling she's gonna fight and win this. I just FEEL it.
She was more "there" today, making more direct eye contact and even smiling a little. And she can SING. In TUNE. She has always loved singing, and has a beautiful voice. Yesterday and today when Dad sang hymns with her, she sang right along...only getting about 5 word strings before returning to jibberish, but then picking it up again here and there. She was great at Jesus Loves Me and Amazing Grace.
Later today I had a CD on of, oh I don't know, but music she likes, like old romantic tunes, and she was singing along with one of them, all by herself. I didn't know the words to it, and couldn't tell what she was saying, but I could tell she was right on key and tempo. When they say music is good for the soul, I would agree. Lifts her spirits, for sure.
I combed her hair today. She has had a variety of "scans" and a 18 hour eeg, which required diode whatchamacallit's glued all over her head. Well, they didn't shave her head (which I'm glad), but just glued right on top of her hair. So combing was a 2 hour effort involving detangler spray, a comb, and lots of elbow grease. (You moms - think gum in hair times 100. )But we did manage to get most of the glue out (just wait, now they will want to do another eeg). She really seemed to enjoy it overall, except some protest when I pulled too hard. A couple times she even patted her head like she was fixing her hair. And she "talked" to me the entire time, just like we women do to our hairdressers.
She's IN THERE. I tell you. There is some disconnect somewhere, but she's still in there.
Well, Jim, you wanted "real life".
This be it.
I told my dad-in-law this morning that I don't know how he does it day after day. I'm only 37 and I was plum petered out last night. He says "I don't know but I can tell you, I sure sleep well at night". What a trooper. Not that he has a choice...but still.
Dad said a meeting with the neurologists this morning was not very encouraging. But I have a feeling she's gonna fight and win this. I just FEEL it.
She was more "there" today, making more direct eye contact and even smiling a little. And she can SING. In TUNE. She has always loved singing, and has a beautiful voice. Yesterday and today when Dad sang hymns with her, she sang right along...only getting about 5 word strings before returning to jibberish, but then picking it up again here and there. She was great at Jesus Loves Me and Amazing Grace.
Later today I had a CD on of, oh I don't know, but music she likes, like old romantic tunes, and she was singing along with one of them, all by herself. I didn't know the words to it, and couldn't tell what she was saying, but I could tell she was right on key and tempo. When they say music is good for the soul, I would agree. Lifts her spirits, for sure.
I combed her hair today. She has had a variety of "scans" and a 18 hour eeg, which required diode whatchamacallit's glued all over her head. Well, they didn't shave her head (which I'm glad), but just glued right on top of her hair. So combing was a 2 hour effort involving detangler spray, a comb, and lots of elbow grease. (You moms - think gum in hair times 100. )But we did manage to get most of the glue out (just wait, now they will want to do another eeg). She really seemed to enjoy it overall, except some protest when I pulled too hard. A couple times she even patted her head like she was fixing her hair. And she "talked" to me the entire time, just like we women do to our hairdressers.
She's IN THERE. I tell you. There is some disconnect somewhere, but she's still in there.
Well, Jim, you wanted "real life".
This be it.
erin- it's perfectly understandable that you feel exhausted after days like that. i think emotional fatigue runs deeper than the physical kind.
ReplyDeleteyou're a great daughter in law! and a great wife!
you're not a bad friend either ;-)
Yes, Erin, I did want "real life", and I found more God in your post than in most theological drivel I read. God in your mother-in-law singing. God in you combing her hair. God in the fact she's ALIVE, so there's hope, because you're right, she's still IN THERE.
ReplyDeleteAnd I say none of that glibly. It must be terribly hard and sad and frustrating. But your post also made me truly want to pray for her, and your father-in-law, and your husband, and you. Not because you asked, but because you made me CARE.
May the Lord bless you and keep you (all). May He make His face to shine upon you (all) and be gracious to you (all). May He lift up His countenance toward you (all) and grant you peace. Amen.
Erin
ReplyDeleteI'm so sorry you're having to deal with this. It just makes me cry envisioning you taking care of her and knowing she's in there somewhere but can't connect with you. I know that it must bless her greatly to know that you're close by.
Michelle
Oh sweetie, you are such a blessing.
ReplyDeleteYou know what I just thought of, reading your account of what was going on? Life from Death. Thought about your back, and all the pain that went into that and now something beautiful is there. I thought about all of those living vines coming out of that dead skull and thought about your mom and how the collective love of all of you (especially Abba) is bringing the life out of there, something that would appear to be dying but instead springs forth with beauty and life. It's like someone took a hairbrush to a dead skull and yanked and pulled and released the life that was trapped in there. I had a stroke when I was 27 years old, and I know what it feels like to be trapped inside a skull. Smart, but stupid, dead but alive. You have no clue how much it means to have someone touch you when you feel like that because the warmth of love is the only thing that still makes sense.
I know you are tired, but you are going to be just fine, I can feel it too.
But I still wouldn't get a tattoo ;)
Thank you Erin. Lots of Love.
ReplyDeleteThanks Cindy. I'm really not that great. I haven't been very involved with MIL since her surgery, because with the kids it's just so complicated. But they are at the beach with my mom, have been since Saturday, so I'm trying to make it up now.
ReplyDeleteJim - I was just teasing you, in a sense.
ReplyDeleteThank you so much for the encouragement.
Michelle - I told her last night that I didn't think she and I had EVER spent this much time together and that I was really enjoying it. She raised her eyebrows at me and looked at me like I was crazy.
ReplyDeleteSee, my inlaws and I have had a rocky relationship. I won't say more than that on this blog, but in 18 years, some of it hasn't been pretty.
But this is the kind of thing that knits a family.
Thank you Tyler. I didn't know you had a stroke. That's how it is...like she's all in there...but trapped and can't get out. Thank you for sharing that about touch, too. It's helpful to me.
ReplyDeleteXmplufi/my husband - You're very welcome. After all, she raised you.
ReplyDeleteLike Cindy said, emotional fatigue... In my experience, it wears you down far quicker than physical. Oddly enough, some form of physical activity interspersed in the day might actually help - bleed off the build up emotions. Just a thought. :-)
ReplyDeleteMy thoughts are with you and your husband & DIL & MIL. {{Hug}}
wow erin wonderful description of the time spent with your mil Could feel and visualize all just as you spoke it I can imagine you would be ttoally emotionally drained but also energized by hearing her sing, feeling her respond to the muaic, the hair combing,your presence with her. I hope it enriched you alot erin as i know it has me reading about it. You were and are jesus to her in a geuine way, not some abstract way Bless you erin!!!
ReplyDeleteOh ... Erin ... please ask the nurses if you can wash her hair. Or make arrangements for a hairdresser to come in and do it for you. I've had many eegs and those diode things make your head feel sooooo gross and icky. They don't hurt at all, but you feel yucky. That will lift her spirits so much to have a clean head. You are such a wonderful woman ...
ReplyDeleteThanks Katherine. Thanks for the tip. Actually, this hospital, OHSU consists of a whole bunch of buildings up on a hill that are all interconnected. It has been expanded so many times it makes no sense anymore.
ReplyDeleteMy point is, to get from mom's room to the cafeteria one must take one elevator from floor 7 to floor 2, walk down a hallway, cross a 1/8th mile skybridge (which puts you on the 9th floor of that building), walk down another hallway, take another elevator to the 3rd floor and walk down another hallway.
So if it's exercise, I'm getting it.
Thanks Robert. I guess being Jesus isn't all about doing fancy things, huh?
ReplyDeleteSonja - I agree with you, and we will, except there will probably be eeg's every couple days, and until we are sure they are satisfied, because she's immobile and non-communicative but awake and alert, I don't want to put her through the trauma of trying to wash her hair.
ReplyDeleteBut we will get to it as soon as we can.
erin, that you combed her hair almost made me cry. i would definitely want someone like you by my side if i were in her shoes. peace, sister...i'm praying for you.
ReplyDeletekari
just a wild idea i had... is there anything we could do to help lift spirits during this time? would cards be appreciated? flowers? another cd of hymns?
ReplyDeleteanything we can do?
seriously. if it would mean anything to her or you or your family to know in real physical ways that you are being lifted up half a world away, just say the word.
we're here for you.
Hey babe, I have a great experience with this. My Dad had a massive stroke in 1999. He was 59. He is also a stubborn SOB, and he would not let the stroke beat him. He worked at his recorvery 40 to 50 hours a week. He continued until he was as good as new.
ReplyDeleteBut, what he had, was what he called a disconnect. He still thought the same thoughts. I tried to communicate as he always had, but he couldn't make his mouth make the right sounds. So when she is sounding like jibberish. That normally means that she is thinking normally, trying to talk like normal, but the brain pathways are marred and needs to create new ones before the mouth will do the brains bidding again. Hopefully this is the case with you MIL.
Yeah, what Nate said. My speech centers weren't damaged but it was like I had two brains, the smart one inside, and the dumb one that wouldn't allow my thoughts out of my head. It was very frustrating.
ReplyDeleteThanks guys.
ReplyDeleteJon - you're so sweet. I can't think of anything at the moment but I will let you know. Prayers are the most coveted thing, any you can spare.
Nate and Tyler - Thanks for sharing your experiences. The situation is complicated...she had 10 neurologists working on her case last week. Now it seems she didn't have a stroke most recently...she did have one back at the time of surgery but we had thought she had another and that seems to not be the case. Instead they say she's having seizures as a by-product of the surgery.
I don't know, we have many many unanswered questions still.
I am sorry that I have been away as of late, but three disjointed and barely relevant things come to mind but at this late(early?) hour I feel compelled to share.
ReplyDeleteFirst, my wife's grandmother is in very late stage alzheimers so I resonated with the "she is in there somewhere" concept thinking of her. My grandmother and grandfather who took the same path are deceased, but she is the present incarnation of my experience with that.
Second, the EEG glue comment resonated. You are a new addition to my blog, so if you haven't surfed the archives you don't know of the multi-year search to figure out what neurological malady I had which included an extended hospital stay attached to the perma-EEG. You may or may not have picked up on my wife having MS which has included similar tests for her until the diagnoses. So when you mention that one, having combed her hair and mine, I understand too keenly.
These notes wouldn't have helped if they were provided in a timely fashion, less so now, but as I said, I felt compelled.
Steven - I did know your wife was ill but I don't think I knew what she has. Did they ever determine what you have going on? Or did it turn out to be nothing?
ReplyDeleteThanks for sharing those thoughts. I do appreciate it. Yes, that glue is nasty!
They just put a brain shunt in on Friday because she was retaining fluid, so now we have that to deal with.