A Caregivers' perspective

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A Caregivers' perspective

Postby soupandboop » Sun Apr 05, 2009 6:15 am

It was July of 2006 when I found my wife unable to move and in need of immediate medical attention. I had to carry her to the living room and call 911.

We weren't sure if it was a stroke or what had happened.

The Neurologists were called in and the initial diagnosis was Guillone Barré.

Various treatments were given, including a Plasma replacement treatment that she "bottomed out" on, and after a number of weeks of tests, (MRI's and so forth), she was transferred to a physical therapy hospital. Paralysis, lack of feeling in her lower extremities, catheters and much more, were a part of her life when she finally came home.

Since 2006, various Neurologists have been seeing her, and it went from the original diagnosis, to an undefined " Atypical Demilinating Disease," and then finally to "M.S.."

Lesions on her brain and spine, and bands in her spinal fluid, numbness that comes and goes; incontinence; multiple medications; sleeplessness; extreme leg pain; anxiety; depression at times; .....all of this makes up her lifestyle since 2006.

As "caregiver" after 30 years of marriage, I have gladly and proudly taken on the role. We sleep in seperate beds now (since 2006) because she is so restless that she doesn't want to disturb "my" sleep (not by my choice).
"Relations" are non-existant, and that's understandable and ok.

She has a survivors polyianic spirit most days, and yet every so often has a deep depression day.

So...........I'm here.........hoping for some sort of comfort, some sort of understanding, some sort of clarity to all this.

Admittedly, I come as a "caregiver" and not a "sufferer," and so perhaps I am in limited company. But just the same, I'm here.
-Soupandboop

"I was so much older then; I'm younger than that now." (Dylan)
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Postby jimmylegs » Sun Apr 05, 2009 7:57 am

plenty of caregivers here s, i'm sure they'll chime in :) welcome
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Postby catfreak » Sun Apr 05, 2009 8:40 am

Soupandpoop,

God bless you for being a care giver to your wife. I could not make it with out my husbands love, help and support.

You are her Angel.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Lyon » Sun Apr 05, 2009 8:43 am

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Postby cheerleader » Sun Apr 05, 2009 9:28 am

Hey Soup-
I'm a Connecticut girl, born and raised. Welcome. Sorry you find yourself here. Come and rant or look for support any time. This place has become my support group.

I guess I'm a "caregiver" but I prefer to think of myself as a team member...makes it less overwhelming. My hubby's still mobile and active, so I don't feel like I'm needed by his side all the time. My husband's been dx since 2007, but his MS probably began as depression about 10 years ago. He always had restless legs, too. It was tough on me, because we've been together 25 years now, and I watched him change from the energetic, upbeat man I married, to a sad, hurting human being.

His MS manifests as daily leg pain, fatigue, urinary urgency and depression. That said, we've done alot together to get him up and moving and hopeful. He is on an antidepressant now, and that's been a huge help. He takes provigil for his overwhelming fatigue. He also has changed his diet and takes about 25 supplements, which have calmed the night time spasms (look into magnesium for that) and he keeps exercising. It was a puzzle figuring out a program for him, I write about it in the blue highlighted paper below.

He has made great strides accepting his diagnosis and dealing with the daily pain- and practices meditation and reads alot of in the moment books...like Eckhart Tolle. Seems to help us stay focused on the present, instead of worrying about the future. We make time for our physical relationship (sometimes during the day, when there's more energy), but I try not to push or guilt him if it just isn't going to happen. I let him know I love him, no matter what his body can or cannot do.

All of this said, you need to take care of yourself. Make sure you eat well, exercise and see your friends. You can't stop your life because you feel guilty for being the healthy partner. Talk to friends about it, post here, but don't shut down. Your wife needs your positive energy. Together-rent movies that make you laugh, listen to beautiful music, sit in the spring sunshine, have a nice meal out. Find what brings you both joy. She's still the woman you fell in love with....let her know that you see her.

wishing you all the best-
the aging cheerleader
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Sun Apr 05, 2009 10:00 am

Soup,

Welcome to the board. You are among friends here and compatriots. Your wife is incredibly lucky to have you. Your attitude will help her more than you will ever know. I imagine, and this is imagine keep in mind, that on her dark days sometimes she is feeling depressed more about the impact of MS on you and your marriage than on herself personally. So knowing that you are there for her and committed cannot, by ant stretch, be underestimated.

Welcome and God bless you for being on board fully for your wife, who I can guarantee is not only hurting physically, but scared as well. There is no single greater emotional boost for an MS'er that to know there spouse still loves them and wants to be there for them. Believe me on that one.
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Postby Loobie » Sun Apr 05, 2009 10:03 am

OK, I'm trying not to use my magnifiers today. So for today, ant = any, there = their, and that = than :lol: :lol: . Ok, they are going back on now!
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Postby Lyon » Sun Apr 05, 2009 12:53 pm

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Postby Loobie » Sun Apr 05, 2009 1:34 pm

I had never paid it any attention. I will use it now!
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Postby Lyon » Sun Apr 05, 2009 1:37 pm

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Postby soupandboop » Sun Apr 05, 2009 1:54 pm

I'm certainly overwhelmed by the positive feedback. Thanks so much for taking the time to respond in meaningful ways.

What I take away from this experience, even in its ongoing status, is that it is a disease that will not go away, and most likely will get worse. Of course that's obvious to you who have been dealing with it for longer than I, but I had to come to the place where I switched from "ok, how can we lick this thing," to "Ok, how do we find balance together."

For "my" it has meant, learning to PATIENTLY walk slower; to view obstacles through HER perspective, and to continue to be forward-thinking in my approach to each day.

I have to ask myself honestly what it is that I need from THIS particular web-group. She has a ton of support (not only from me, of course) from the medical community, and yet I don't want to miss out on something I can tell her of that she hasn't learned about. If there was a medical breakthrough or a different medical approach, ....I'd want to be able to bring it to her attention to help her. So that's part of what I wanted from this site.

The other is purely selfish, and I readily acknowledge that. It would be helpful to me to know that when "I" am discouraged......when "I" am feeling as if "my" world is too much, .......then to have other "care-givers" to talk with is helpful.

It is not normal or common for me to have self "pity parties" and I don't LIKE that feeling when it hits, for two reasons......one reason is that I don't believe that a person does themself any good by being an Eore (sp?). It is better, I believe, to face life as a Tigger, (Winnie the Pooh Characthers, whose names I never really learned how to spell).

Secondly, I have learned that it doesn't do any good for the others around you, and in this case, it is counter-productive, and contraindicated, in my wife's life to see me struggling.

So I suffer quietly, without complaint, and carry a double load at home. Much of what she was able to do, I now do, along with my own duties at home, and add work to that, and the "caregiver" is a real busy beaver!!

Arguments with "God" about this whole thing have yielded only silence. He has offered no explanation, no reprieve, ........As a "Preacher's Kid" I can recite all the verses about hope and His care, memorized years ago, and can intellectualize the responses that are patently appropriate, but they just don't seem to be enough.

Our grown daughters who have recently both had sons, have been reserved in their allowance of letting my wife babysit, of late, since it is quite clear that "mom" can't do for them as well as she would like. My wife's joy at being a Memeré is boundless, and she was very upset when she realized that she was deemed a "risk factor" in her grandson's lives. (Our daughters and we are close, so this was an especially difficult issue in our family lately). They feel only comfortable about leaving their sons with us when I can be there.

My wife and I both understand the limitations that have presented themselves because of this disease, including the limitations with our grandkids, but it is not an easy thing to face for either of us.

Someone jumped into the thread and spoke about typos or spelling errors, and I'm sure you'll find a few badly constructed sentences and perhaps some spelling errors in my OWN words, and if so.......I apologize before hand.

One of MY pet peeves is the use of the word "pleaded" (as in "he pleaded guilty"). The correct word is "pled".......and Judge Judy is the only person I've heard use it correctly, in YEARS......lolololololol.
-Soupandboop

"I was so much older then; I'm younger than that now." (Dylan)
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Postby Lyon » Sun Apr 05, 2009 2:16 pm

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Postby Loobie » Sun Apr 05, 2009 2:59 pm

Soupy,

You are already OK in my book because you're the only other guy on here who uses "quotation marks" and CAPS in most posts. I love it!! :lol: I just can't help it, it's how I see it in my head! For real I am very glad you are here. Bob and Cheer and Harry Z are the big three caregivers that come to mind. I really, really like your attitude and how you understand that her MS affects you just as much. So great job being proactive and trying to stem off issues before they become problems.

It was me that jumped in and talked about the typos. I have been trying to not use my 'cheaters' so much as I think it has actually weakened my eyes. I gave up and grabbed them, then read my post to you and it had three typos in one sentence! At any rate, I hope you stick around; this is a great place.
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