Caregivers Caring Thread-Renewed=#5

Starting a new Caregivers Thread, since #4 has gone to 4 pages.

Moderators-will one of you please lock the other thread?  Thank you.

How's everyone doing out there?  Are children back in school?  Are you finding ways to slip in a few moments for yourself amid all your responsibilities?  How is your loved one doing?

Emma

Post Edited By Moderator (hep93) : 8/19/2011 11:39:14 AM (GMT-6)

hey emma, hows things with you? hope all is still going well for you both?
children here do not return to school untill 6th september, has been a really good summer here though, with the exception of the usual english rain at times!!
hubby continues to decline very slowly, he is still not drinking so we are hoping that he will gradually get better.
i have sadwife in my thoughts a lot, very sad that her hubby has taken a bad turn so suddenly.
connie, i think of you often too. i look forward to coming here and reading you have a date to go in for your transplant!!!.
thoughts and prayers to you all.
xxnatasha.xx

Connie-can you correct my spelling in the thread title?
Thanks. ;)

Pam-glad to hear that Ron is doing so well. Are you a teacher?

Emma, correction is done.  Funny...I didn't even notice that.  I must be slipping. 

Blonde..."custom came shop "  That took me a minute.  I'm sure you meant cake shop.  I like to bake, also...but don't like having goodies around, as I'll eat them.  And after all, you have to taste them to make sure they are good, right?

Natasha, very good to hear from you and it's great news that hubby is still abstaining from alcohol.  I don't exactly "get a date" for transplant.  A call will come out of nowhere...could be 3 AM on any random day...to say they have a "possible match" for me.  So I'll grab a bag and someone to drive me to Mayo.  And it might not be a good match after all--too big, not healthy enough, etc.  These are referred to as "dry runs."  Then I would come back home and wait some more.  I hope this doesn't happen...that the first call will be THE one that will give me a transplant.  I really don't expect this to happen before Oct./Nov.  There are currently 33 people on the waiting list with my blood type--15 of them women.  This number is always in flux as transplants are done and new patients added to the list.

When I was in school in NYC, school always started AFTER Labor Day weekend.  I truly don't understand them starting earlier here in FL.  They do finish up the school year in early June--used to be late May.

Pam, is a biopsy at 6 mos. post transplant the norm?  I seem to remember David G. having one then, too, but I think it was because his enzymes were elevating and they found the hep C had returned.  Or maybe it was at one year.  I did overhear a TP patient at Mayo say that a yearly liver biopsy is done routinely for post transplant  patients.  I'm not looking forward to that.

Hugs,

Connie

Hi all

So excited to hear from Pam. Ron had his transplant 3 months before Mike.  I read her posts and blog and wept with each bit of good news and even some set backs.

So glad he has done so well.

This caregiver has semi retired. Mike is pretty much better. Just week by week for changes in meds.

It wasn't the hard work that got me. It was the emotional stuff day after day.

Best to all caregivers still in mid-crisis. My heart goes out to you.

Carol

Post Edited (MamaLama) : 8/19/2011 5:27:43 PM (GMT-6)

All the emotional things I was going through while Dougie was first sick...he doesn't remember at all. Doesn't remember me spoon feeding him...getting him to the toilet during the night...getting him dressed...driving to appts...helping him back into bed...counting how long a small cut would bleed...checking the color of his urine...holding his hand...kissing his cheek while he slept. He doesn't remember anything. But I do. And the fear that I was feeling, well while the fear and his health have an inverse relationship...I still recall how scared I was. So in that way I agree that it can be harder on the caretaker. And the thing is, I know that Dougie was no where near as sick as most of the loved ones that are spoken about here. I am still counting our blessings.

Carol and Pam-so so very happy for you both. When I read about Mike and Ron's progress I always get a smile.

Emma

This is my first post on this forum.

My mother died very recently (7/28) from complications of Alpha-1 Antitrypsin Deficiency. It was a very sudden death, it took only 5 months from her date of diagnosis for her to deteriorate enough to be taken off the transplant list.

I agree that it is very hard on the caregivers. I am 20 years old (as of only a week ago), and I live alone with my father now. He works 70 hours a week between his two jobs and in the brief periods of time my mother was home from the hospital, I had to keep an eye on her. I can't count the number of times I came home to find blood all over my house. I could follow the trail of droplets and it would lead me right to her. I had to help her get dressed and scrub up her accidents (she had IBD and the Lactulose she was prescribed for her ammonia levels made it very difficult for her to control her bowels, and her 2 fake knees made it difficult for her to make it up the steps). I can recall taking care of her in the E.R. because her nurses seemed to be too busy. I would suction the blood out of her mouth when her gums were bleeding and clean her accidents off her legs with a damp towel. I had to make sure she didn't fall asleep on the toilet or O.D. on her pain medicine, since her ammonia levels made it difficult for her to remember when she had taken them and her quack doctor prescribed her a medicine she couldn't process properly (before she was deemed terminal and no one cared if she got liver-processed meds).

And she couldn't remember most of it. She could recall me taking care of her in the E.R., but she couldn't remember walking around without pants or having an accident in the hallway. She didn't know how scared we were when she'd become listless and lie on the couch with a fleece blanket in 90 degree weather, half-hanging off the couch because she was too swollen and weak to get her legs up onto the seat.

But I didn't mind that she didn't remember. Because when she was lucid, I could breathe. She would go on and on about how helpful I was when she could remember it, but I never liked hearing that kind of thing. She'd been hospitalized so much it just comes with the territory I suppose.

I am left with those images now. People tell me to remember the happy moments and use that to help me get through this. But its so difficult. Once you see these things, you can't unsee them. And they re-visit me at unexpected times. I don't suppose that will go away any time soon.

My mother didn't like to know about those times she couldn't remember, either. What she could recall was embarrassing enough for her. And after the first few times I tried to bring it up, I got the message.

I'm happy to hear about your loved ones doing so well. I know what the worst of it is like, so if anyone would like to send me a private message I'd love to talk. I've been searching for a place like this since shortly after my mother's passing.

Hello all. Welcome to HealingWell Jess. Please accept my sincere condolences on your mom's passing. You were a wonderful daughter to her. Take comfort in that.

As far as only remembering all the caregiving.......it will fade with time. Oh I still remember those days.....but it's like another time, another person. At least it that's what it has become for me. I took care of my husband for years before he died. And if I had to do it all over again for him I would. Even that was better than not having him at all. It's been over 4 years now....not a day goes by that I don't think about him. I don't cry hardly anymore.......just think about him with great sadness in my heart. Life goes on and you find a new normal.

One thing is that I have found. Some days it's hard to see others going through it. Knowing how hard it is......it breaks my heart seeing others go through it.

Thoughts and prayers to all.........

Hello all

Jess, your post was riveting; I am so sorry for the loss of your mother.  You are a good daughter, someone I respect very much.  I don't like to remember what it was like, to care for Ron when he was so sick; he doesn't remember at all.  I guess that's the way it should be.  When people are at their weakest, we're there to help; and hopefully should I come into bad health my children will do the same.  Again, I am so sorry.  I would be happy to correspond via email [email protected]

Emma, Connie and Carol, we were told during Ron's work-up that he would have a biopsy at his 6 month mark.  His blood tests have been perfect - we really don't expect any problems (fingers crossed).  Ron's had 4 or 5 biopsies (spelling?) over the past couple of years - Connie, he said the worst part - he has to lay several hours in the same position (because of the chance of bleeding).  Pain has not been an issue.

Natasha, we all are here to support you - we know what you've been through, and your small children - personally, I think you've made the right decision.  You need to be able to give your children a normal life. Don't beat yourself up. Hugs!

We appreciate all the love and support we've received through this group of very special people.

Pam

Well my husband had the bone marrow biopsy today ..he said it was the most painful things he's been through ....we hopefully get results back on Monday and it helps figure out his blood issues .....crossing my fingers the doctors can figure It out before he gets any worst!

Natasha, I totally understand your concerns, knowing what you've been through with him previously.  Just prepare the children by telling them that he is really sick and that he is going to need a lot of sleep; that he may do and say things they don't like, but that it's his illness causing it.  A week isn't forever.  I'm sure his sister needs a break at this point.  Hold your ground.  Make sure he knows there will be NO drinking while he is with you.

Hugs,

Connie

Natasha-I am sure that you will find the right words to communicate with your boys.  You have worked so hard to bring a peaceful environment to them, I am sure that you will continue to provide them with that.  Since your husband has been out of the house so long, they may all enjoy each others company for the time period that he is awake.  Maybe this will boost husband's mood and reinforce the beauty of life that he is fighting for.  You don't sound like a hard nose.  Never apologize for taking care of your family.  We all gotta do what we gotta do.  It's still a month away...time for you to make a plan and maybe to talk to husband about what your expectations are while he is home with you and the kids.

Emma