Caregivers Sharing Thread #9

This is the last post on the old Caregivers Sharing Thread #8,

from gypsy1313:

Hi Im new to the thread,,where do I begin,,my husband got hep c from a blood transfusiom in the 80s,,,jump to 2003 now chirosis,,jump 2010 esld,,may 13th varisis bleed life support and coma 5 days put in the tips,,was in hospital 20 days has HE,takes lactalose,,been in the hospital 3 times with HE since may,,he has adema, nose bleeds,,bad bruising,,shoulders are tiny chest isnt there anymore,,I give him morfine shots for the pain in is wrist ,,he lost is right eye in 1999 to cancer,,,he has diabities I give hime 4 to 5 shots a day,,because of the diabities which is so hard for me to control,,he is now bleeding inside the eye,,he is going for lazer treatment and needles in the eye,,unreal,,The good thing is hes on the transplant list,,the bad thing is he is type O blood,,We are moving at the end of the month ,,and just before I gave my notice to move,,my car rolled into the side of my landloards van 1600 in damage to his van,,thank god for car insurance,well thats my story,,oh ya I get 6 hours a week from red cross so I can go shopping ,,they send someont to sit with him,,and thats all the help I get..never thought in a million years life would end up this nuts,,I have to say we have been married 40 years hes the best husband never complains ,,Im thankfull for that,,thanks for listen will be back when I can

RESPONSE TO ESLD POST MOVED TO CAREGIVERS THREAD

Gypsy1313
I feel for ya, gypsy. I know that melt down thing. Where any direction you go, there are road blocks. Sometimes it's easier to just do it yourself instead of trying to arrange the "help." Been there! Spent some of last several days crying off and on.

But, I had to laugh when I read the part about getting your hair done...I haven't been to salon since my hubby was diagnosed in Feb of last year, so it is now grey and every couple of weeks, I trim it myself. (My old beautian would scream!) I feel lucky if I get it washed... :)

I'll have early morning or late night coffee with you. Just set a time and date, meet you on HW and we'll both drink coffee from our homes (best I can do) and post. :)

(Just an aside: Love your moniker...gypsy...my hubby has a fasination with gypsy culture and has all kinds of books on gypsies. He has worked with gypsy families in some of the circuses and considers himself to have a "gypsy soul". His dream is to own a Gypsy Vanner driving horse and pull a true gypsy wagon.) Sorry, off the subject.

Hope your day goes better today.
Angie1953

Yes, thanks Connie. I wasn't sure how to do it.
Angie1953

Carol,
Thanks for sharing info on how you handle the going alone places. The last line is what I would like to tell everyone.
"yes, I would love to come, but don't count on my 100% and then decide the day of the event." I guess I feel it's "FLAKING OUT" and not keeping a committment....but you are right, my friends will understand..I just need to give them more credit.

It is amazing how I will feel like doing something I was invited to, then will get a call from Hubby who is at B & B crying, and the next minute I know I can't go without being in tears the whole time  ..not much fun for the others there. Having the "opt out" flexibility would be wonderful. I will use that sentence. Thank you...good idea.
Angie1953

PS: Hubby wants me to put an application in to work at the B & B, so I can be there 12 hour shifts so we can be "together". Made me feel sad. I had to explain to him that I am not really qualified, ...and don't think I can take care of other sick folk. I take care of him because he's my hubby...but it certainly is not my line of work.  The way he explained it is that this would help our marriage. 

Post Edited (Angie1953) : 2/9/2012 8:23:16 PM (GMT-7)

We are 350 miles from Omaha....across the state.
Angie1953

Gypsy, I had never considered that liver transplant recipients who are NOT type O can receive a liver from a type O. Of course, as you mentioned, size, condition of donor liver, tissue matching all come into play. I found a good site that addresses this:

http://www.surgery.usc.edu/divisions/hep/patientguide/donor.html

I still maintain that being type O means a greater chance of transplant by virtue of there being more type O livers than other types.

Hugs,
Connie

Emma, have you seen a neurologist? I think it might be a good idea to get a head CT or MRI. And you know this is the place to vent, so don't apologize! So sorry you are feeling poorly.

Hugs,
Connie

Dunno, Emma. I can see my post above your last one.

You might want to get a 2nd opinion--or let the first neurologist know that the treatment isn't working. Because YES, you do need to take care of yourself.

Hugs,
Connie

You probably did, Emma. I'll e-mail you.

Hugs,
Connie

"I emailed my neurologist today to tell him that I need more tests, alternate treatments, whatever...that I just want to be better!"

Glad to hear it, Emma, and also that you figured out how to unblock me.

Hugs,
Connie

Gypsy, please do not post in caps. It's considered shouting on the Internet.

It sounds like your hubby has diabetic retinopathy. I do hope they can save his eye. If he has a caregiver (you) to make sure he takes his meds and follows instructions, I doubt that he would be taken off the list if he goes blind. However, that's something you may want to mention to his hepatologist.

Please keep us updated.

Hugs,
Connie

Hi all,
This is not a vent. I want to share some of the good times with all. For Valentine's Day, my hubby's best friend and some of his relatives came from Michigan to spend several days with us and visit hubby. They surprised him and we brought him home from the B & B (nursing home) for two days and nights. We had a huge slumber party and everyone slept around him in sleeping bags in our living room. (Including the dog and 7 cats.)  The "guys" took care of his every need. Held him up so he didn't fall and teased him merciless, which he loved. He in turn regaled them with stories from the nursing home. (...the best he could remember.)

The guys fixed some of my fencing, fed my horses for 2 days to give me a break, bought all the meals and for valentine's day they took us out to dinner and bought me a long red water hose which I really needed as mine had holes and little mini fountains when I watered horses. They fixed my front door and did little odds and ends that I hadn't be able to get to. Can't tell you want a wonderful 2 days it was for both of us.

Hubby was so excited he didn't know what to do with himself. He so loves the guy jokes..which seem to partially consist of insulting each other and then laughing like crazy. (GUY THING?)

He did pull a joke (??) on me. In the night he got up went the frig to get a coke, and I got up and walked behind him to make sure he didn't fall, as he is wiggly on his feet. In the light of the frig, I wished him Happy VD and gave him a hug and he started violently shaking all over....and I thought "OH NO..HE"S HAVING A SEIZURE." So I held on to him real tight and tried to lower him to the floor and was going to get my phone to call 911 once I got him to the floor. (Didn't think about yelling and waking up guys, as I have done it on my own for so long...just went into panic mode.) After what seems like an eternity, hubby starts laughing like crazy...and I realize he is "punking me".

Oh, that was so NOT FUNNY, at the time. I can see the humor in it now, but......
Anyway, was a great two days and two nights. Helps so much to keep going to just have a good time, even if it's short lived. Hope all of you caregivers and those with ESLD get a chance to laugh in the next couple days.

Angie1953

Post Edited (Angie1953) : 2/17/2012 9:24:58 AM (GMT-7)