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Posted 3/25/2012 5:49 PM (GMT -5)
Time to start a new one...

My mom is still in the hospital...day 33 or so.  Not much progress...but just baby steps.  She is having clear liquids now and her pain isn't as bad as before.  For those who don't know...my mom has pancreatitis.

Dougie had his banding follow up on Friday afternoon.  There I sat as a good wife in the waiting room.  I was a very good person on Friday.  Good employee...worked half a day...good daughter...left work, went to the hospital to spend a couple of hours with mom...good wife...left hospital, picked up hubby...off to our medical center for his banding follow up.  Waited 3 hours.  Only to be told that he was ready to go home, but they COULDN'T DO THE PRCEDURE.  He had the max sedation medication, but he was still fighting the doctor and the tubes, etc.  Not safe to continue.  They will call us Monday to reschedule.  He may need to have a general.

Ugh.

I am exhausted.

I hope everyone else is having a peaceful weekend.  Angie-how are you doing?

Nathasha---is you ever check in---I am thinking about you.

Emma

Posted 3/26/2012 3:43 AM (GMT -5)
Emma, thanks for starting the new thread. Also for updating us on your hubby and mom. No wonder you are exhausted with all the running around, plus it takes an emotional toll. Remember to make "me time." If I'm ever put under again, I'll probably be fighting to. I've had it with procedures and surgeries.

Hugs,
Connie
Posted 3/26/2012 9:55 AM (GMT -5)
Emma,

  Thanks for asking.   Things were peaceful here at my house this weekend.  I have been grooming ponies, as it's  70 and 80 degrees and cleaning house {Spring 2011 and Fall 2011 and Spring 2012 cleaning all in one.  :) }  Hubby still in B & B and is having more and more pain, but doesn't want to up his painkillers, as he is already hallusinating a lot.  I talked to him Friday about stopping all meds, but painkillers, but it really freaked him out and he said "So you want me to die?"  No...I said, but stopping all the other meds is an option the Dr. will discuss when he comes this next Friday.  Obviously hubby's not ready to do that.  He went on and on that he just needs some retraining and he can return to work.  :(   Sometimes he doesn't recognize me as his wife, which is tough.  He doesn't really want to come home and visit anymore...I think it is too confusing for him now.  So I visit him at the B & B at least once a day, sometimes 2 times.  I used to lay down beside him and watch tv with him and hold hands, but last week he looked terrified when I laid down beside him and I realized he doesn't always recognize me as his wife and it scared him.  So...I just set by his bed now with him. 

  He does want to "go on a trip"  somewhere.  Don't know if I am up for that.  His good friend, Phil from Michigan who came and had a slumber party with us over Valentine's Day, said he would come in May and take him for a two or three day trip.  That will be wonderful..He likes being with Phil so much.  It will give him something to look forward to. (Phil will bring his 2 sons and a friend and between them all they can take care of him, I think.)

   I am trying to take care of myself, but sometimes just don't feel like doing anything or going anywhere or talking to anyone.  Work is difficult, as it involves so many social events, which I'm not really up to.  So go outside and spend time with my mini horses.  Fortunately the weather has been wonderful for March in NE.  That helps keep my spirits up.  Also, my Mom will be back from AZ in May, so that is something I look forward to.  She is so upbeat.

  I really appreciate this forum and all you folks in "Cyberland".  Everyone helps me get through the day.  Folks locally always inquire about my hubby and it's hard to keep saying, "He has good days and bad days."  But few ask how I'm doing.  {Only the few that have lost a spouse to this type of process}.  So it is great to have the opportunity to communicate with you all.  I know that I have it very easy compared to some of the caretakers on here (and especially those fighting ESLD), and I am thankful.  Wishing everyone a peaceful week.

Angie1953

Posted 3/26/2012 9:58 AM (GMT -5)
Connie,
Hope you just get a chance to relax and heal. Thinking of you.
Emma,
Hope you get some rest. I know that exhausted feeling, although it's been awhile.
Natasha,
Think about you often. Wondering how that garden shed in the backyard is coming along.
Angie1953
Posted 3/26/2012 10:15 AM (GMT -5)

Hi Emma and Connie and everyone else....

Hopefully this next week will be a little easier on you Emma, you've sure had your hands full.  This last week here has been just crazy as well.  We were in San Diego for 6 month pre transplant appointment then to Los Angeles for mouth appointment then over to San Bernadino for Dental appointment for Dennis.  This was just Monday through Wednesday.....then he had a couple of Chiro appointments....I hope he is done for awhile...I'm pooped....and so is he!!:)

I had a question about holidays, Easter is coming up and I'm usually the one who cooks.  My mother in law says she can't anymore....(she can she doesn't want to).  My daughter Denise doesn't want to either....I've been the cook for years and to be honest I would like someone to cook for me.  I feel guilty for feeling this way but I'm tired.  I have Dennis who has major sleep problems and we are up at all hours of the night and I also have a disabled daughter (Dawn) who I also have to help with everything.  It's not that I don't ever want to do the holidays again I just don't want to do them now.....I want some time off.  I don't want to go out to eat...I just want to pick up something from the store fast and easy and I don't want anyone over!!  I don't feel depressed or mad at anyone.....I just don't want to do it....My question is do any of you feel the same way at times?

Hopefully this next week will be a restful one for all of us!!

Connie, I hope you are starting to feel a little better!!

DDMom (Kathy)

Post Edited (DDMom) : 3/26/2012 9:55:17 AM (GMT-6)

Posted 3/26/2012 10:16 AM (GMT -5)
Angie,
Glad that you are able to enjoy some nice weather and get to some chores. I love doing normal things...makes everything seem normal!
Sorry to hear that your hubby's pain is getting worse...and that he is not recognizing you as his wife. That must be heartbreaking.

My body is telling me to rest. Started in with sneezing last night. More tired and sneezy, sniffly this morning.

And I have a toothache, my regular DDS wants me to see specialist for possible root canal.

Emma
Posted 3/26/2012 2:10 PM (GMT -5)
Kathy,

I know just how you feel about Easter.

And that feeling can change.

We had done nothing for holidays in 2009 and 2010, maybe just my sister over for Thanksgiving, or maybe we went to her. Nothing for Mothers Day, Birthdays, Christmas..zip.

Then this year, Mike wanted us to get a Christmas tree. He called it his FIRST Christmas, and because of the transplant I could see that he viewed it that way...he had been sick for so long, it seems like a new day had dawned.

So, we got a tree and ornaments and sent Christmas cards again. We didn't do presents thought (except for really little grandchildren). Instead we made a contrubution to the Liver Transplant Foundation at our hospital and sent their cards to folks we might have exchanged gifts with before now.

It is okay to be alone this year.

You may feel differently some day.

Or you could have folks bring stuft to your house...cooked. And they wouldn't feel like they'd had to put a meal together. Use paper plates and have them take their left over with them. Easy come, easy go!

Be kind to yourself this year...do what you WANT to do.

Hugs,

Carol
Posted 3/26/2012 2:35 PM (GMT -5)
Kathy,

I totally get it. Worn out. Just not wanting to have to do one more thing. Is going out an option? Potluck as Carol suggested is a great idea. Ordering in?

For my side of the family I am the one that usually hosts the holiday or other special day...mother's day, father's day, birthdays, etc. I too am tired of it and well sometimes hubby and I feel taken advantage of. Plus, since our family celebrates everything...it also becomes a burden to our budget. My brother that lives close by always brings sodas for his group (him, his 2 daughters, his girlfriend and her 3 sons) and whatever drinks the adults might want. So, this really doesn't help with budget or prep or clean up. I pretty much put up with it and ignore the situation because deep down I am doing it for my parents. They like the family to be together and well, especially now, my mom can't do it. Even Thanksgiving that we always go to hubby's side...my mom has it as her house for my brother and his group...I usually make the side dishes for her and bring to her house. And my brother...I love him dearly...and my nieces...but I don't particularly care for his GF (she does no cooking at all) and her 3 kids (they are very annoying). So all the effort that goes into hosting for them alot of time rubs me the wrong way. But, like I said...it's for my folks. Even with mom in the hospital, yesterday was brother's bday...so I made a take away dinner and dessert for them. He came over to pick it up...but I only did it because my mom wants to be sure he is "taken care of".

Dang, no wonder I am always exhausted. Time for others to stand up and deal. Brother could just as easily boil noodles and open a jar of sauce...doesn't have to be gourmet. It would be nice to be a guest sometime.

Anyway...just rambling away. Sorry. But it feels to good to "say" it and get it off my chest.

Kathy-do whatever you need to do to take care of yourself and your family. That is the most important thing you can do. You don't need to explain it to anyone. No apologies should be needed when you are taking care of yourself.

I totally agree with Carol...be kind to yourself...do what you WANT to do!

Emma
Posted 3/26/2012 3:57 PM (GMT -5)
Emma, sorry I called you Debbie. You know I'm a little out of my mind with the swelling and draining.

We sure do have a lot of co-dependents in here. Kathy, don't feel guilty about not doing Easter. Let someone else do it or don't do it at all. I didn't have Christmas this past year, nor Thanksgiving. I have no problem saying I am just not up to it. You guys are all exhausted from caring for your loved ones or going through the emotional turmoil of caring for someone who doesn't recognize you. You don't have to be at the hospital, B&B, etc. 3 x a day. Once would suffice and that's a lot.

All you have to say is that you're just not up to it this year. If you absolutely can't make yourself say "no," then go the prepared dinner thing at the deli or have everyone bring sides and you just provide the ham or whatever. But I personally would not do that much.

Hugs,
Connie
Posted 3/26/2012 7:29 PM (GMT -5)
 

 Thanks for your posts, Carol, Emma and Connie,

 Sometimes you just need to hear your not nuts for feeling the way you do.....Heck half the time I'm so tired I'm not sure what I feel...just going through the motions of what ya gotta do. Your probably right Connie on the co-dependent statement,  I'll be working on that one!!

I am so thankful for this forum and everyone on it....

Have a restful night....

DDMom (Kathy)

Posted 3/26/2012 8:38 PM (GMT -5)
Hi All - I've barely even begun the caregiver status for my mom, and I am already drained. It is so hard to remain patient and supportive all the time, and to re-explain the same thing multiple times per day. My mom doesn't seem to trust anything now that her short term memory is failing. She calls me for everything because she isn't sure what she is supposed to be doing. She won't answer the phone unless it is me because she is scared and she doesn't know why people are calling her or what they want. She calls me upset asking me why they are calling so then I have to calm her down and then call the person back to see what they need. Then I have to call my mom back and explain that I took care of it and everything is ok. I think I've done this 5 times today. I think I just need to start working from her house so I can keep a closer eye on her. My brother seems to be scraping by in making sure she gets her meds and some food, but he isn't keeping house very well and he himself is half asleep all day every day so he can't exactly be keeping a close eye on her.

I haven't had my emotional breakdown yet, but I think it is coming soon. I've been fighting it back but I don't think I'm gonna hold out much longer. I hate seeing her like this. She is so sick and now she is like a scared alzheimers patient who doesn't have a clue what's going on. I'm worried that she isn't going to hold out long enough for a liver to come available.

My head is so cluttered that I can't seem to think straight at work. I barely even remember to pray. My mind just never stops.

Hopefully we'll get the call soon........we'll keep praying until then.

Sara
Posted 3/26/2012 9:27 PM (GMT -5)
Sara, it's good to see you here. It can sometimes take a day or so for people to reply, but they will. Caregivers are all so busy doing caregiver things and trying to carve out time for themselves.

I'm sure you said that she is on Lactulose. You can increase that without incident and without the doc's okay. Try upping the dosage and she may become a little clearer.

Hugs,
Connie
Posted 3/26/2012 10:02 PM (GMT -5)
It's been a long time since we talked about being angry.

We caregivers are certainly

Tired

Sad

Worried

Frustrated

Frightened

and, again, SAD.

But angry is in there to.  Or it is/was for me.  Some days I thought I couldn't take it any more and was furious...at him, at me, at Hep C, at ESLD, at doctors, at insurance companies, at pharmacies, and again at my man!  How could he do this to us?

I'm less angry now.  He is much better, but not great (yet, I hope).  Some days I don't have enough patience and don't know where I am going to find more.  But then I have a talk with myself, and realize I OWN how I FEEL. That is not someone else's responsibility.  And then I calm down.

I just throw this out there so folks don't feel there is anything the matter with angry...lots of folks feel it. And it needs to be worked through.

So, good luck wiht that!

Hugs,

Carol

 

Posted 3/26/2012 10:14 PM (GMT -5)
I don't really have the anger with my mom, but I think that is because I already learned that it is pointless when we dealt with my dads health for so long. I was angry at him for so much and for so long, but why? Yes it was his fault he got sick. Yes he let go. Yes he died...............but if I stay angry at him forever then I'll never think of the happy parts of my life with him.

With my mom....I'm not angry with her or her liver. Should she have reacted sooner when she found out her liver was sick - yes. Should she have told me about it sooner - yes. Should she have fought me when I took her to the ER - no. But it is what it is now.....and that is sick....very sick. I learned from my dad that given a second chance at being there for him, and being patient for him, and helping him, I'd have done a way better job.

I am sad to see my mom like this. I am sad that someone's life has to end for my mom to live....but I just can't hold on to those thoughts. It's too hard to hold on to that much emotion. I'm trying to just keep on marching and keeping my chin up. Once she has a transplant I will break down, because at least at that point we are no longer tumbling downward, but will finally begin to look up again.
Posted 3/27/2012 10:30 AM (GMT -5)

All I really can say is Wow Carol you hit it on the head....I started thinking about what you said and the tears just started rolling....I've really not thought about anger but you know I am angry. If you asked me what I'm angry about it's the jumps and hoops you have to go through.  It seems like everything has to be so darn complicated.  whether it's a fight for benifits you paid into or expensive prescriptions that are overly priced and now that your not working you can't afford them....you don't qualify for extra help because you make to much money but really you don't in today's economy....I feel like we've gotten the run around everytime we turn around.....Things now are settled and are in place but it's taken a long time to get there.

I have to say I've had a real problem with extened family ...they just don't get it!!  That is probably why I am having such a difficult time standing up for myself regarding holidays....I am just so tired of explaining the same thing over and over again....No he doesn't want to be around people who drink to get plastered, NO he can't fix whatever, He sleeps alot during the day and not at night....our hours are whacked out!!  Dennis has tried to tell them as well and they won't listen....So we stay away and then get to hear it because we don't come around..... 

Most the time I handle things just fine but now and then it overwhelms me.....This last week was busy and I think it just got the best of me.....I'll rest for awhile and start saying No to things without getting angry about it or giving an explaination.

Thanks everyone!!

DDMom (Kathy)

Post Edited (DDMom) : 3/27/2012 10:08:17 AM (GMT-6)

Posted 3/27/2012 11:15 AM (GMT -5)
Yes, I agree that Carol brought forward a good point about the anger. When my hubby was first dx with cirrhosis I was a huge mix of emotions...fear, sadness, and anger. Anger at him for drinking too much, anger at myself for not trying to get him to stop sooner (co-dependent a whole other story!), anger that I was (am still) ashamed to admit to more than immediate family that he has liver disease, anger every time I would see an elderly couple because I was afraid I would not get to be old with him, anger that he has put us in emotional and financial jeopardy...the list goes on and on.

What also scares me is that Dougie is stable now...but I don't know how I would be feeling if he were as ill as so many of the members/family members of this forum are.

And I get mad at circumstantial things too...I get mad when someone asks me more than once if I want a drink when we are out...are you sure they always ask...just one?...I get mad if I have to walk down the liquor isle in the grocery store...I get mad when I see that our local Target and Walgreens have started to sell alcohol...I get mad when we are trying to watch a comedy and so much of the plot seems to revolve around getting hammered.

Kathy-I hope you can get some extra rest. And keep practicing saying "NO!". I think if we could view telling others no as really saying YES to ourselves and our loved ones, we would view it in a positive light.

Emma

Post Edited (healthynow) : 3/27/2012 12:16:28 PM (GMT-6)

Posted 3/27/2012 12:45 PM (GMT -5)
I read this somewhere and think it makes sense: Depression is unexpressed anger turned inward.

My adult granddaughter keeps asking about coming to see me. I have to say no, which she really doesn't understand. I'm in pain, I have blood running down my legs although I have maxi pads covering the sores; I can barely walk from the bedroom to the bathroom, and I'm in a lot of pain. What kind of visit would it be? And there's the overwhelming fatigue. I just am not up to it, although I love her dearly and miss her...haven't seen her in almost a year. But I'll know when the time is right.

Hugs,
Connie
Posted 3/27/2012 3:59 PM (GMT -5)
Connie-
Could your granddaughter come visit and be your caretaker for a bit?
Emma
Posted 3/27/2012 4:14 PM (GMT -5)
Emma, no, she has a 13-month-old baby and another on the way in April.

At this point, I am considering going to the ER tonight or tomorrow.

Hugs,
Connie
Posted 3/27/2012 5:00 PM (GMT -5)
Oh Connie,
I am so sorry that you are feeling so bad. Please don't wait to go to the ER so you can get the medical attention you need...might they refer you to an extended care facility or something similar so you can get some assistance? Please take care and post back to let us know how you are doing.

Sending love and hugs,
Emma
Posted 3/27/2012 5:41 PM (GMT -5)
Hi Connie,
This stinks! Your docs need to get with it. Raise your voice and don't let them shine it on. You deserve better.
Posted 3/28/2012 11:12 AM (GMT -5)
My mom will be having another surgery today or tomorrow to re-open her wound so that it can continue to drain. Unfortunately, the wound has become infected. The doctor is trying to determine which antibiotic to put her on. My dad says that he thinks the doctor may have said it was a staph infection. My dad is hard of hearing, and mom is in and out of it...so alot gets lost in translation. Last night when my dad came by to pick up his dinner (we have been making him dinner every night. he picks up a plate on his way home from the hospital) I gave him a note book and pen and told him that he and mom need to ask the doctors to write these things down.

Dougie will be having his banding follow up tomorrow. He will be having a general anesthetic since on Friday the twilight or whatever the normal endo sedation usually is didn't put him out enough. I hope that this procedure will show that the previous banding was successful and that there are no additional varices that require banding.

Already looking forward to the weekend so I can sneak in some extra sleep.

On Monday I went home an hour early and took a 2 hour nap. It was wonderful. :)

I hope that everyone is doing okay. Kathy-did you tell the extended family NO? Sara-are you getting some extra rest? Everyone else?

Emma
Posted 3/28/2012 12:38 PM (GMT -5)

 Hi Emma,

Sorry to hear your Mom has to have surgery again, hopefully it will take care of the problem so she can start feeling better.

 My husband is hearing impaired and I understand the confusion and frustration that goes along with that. I think the notebook is a good idea.  Due to my husbands hearing I do alot of the talking with doctors because it takes a lot of work for him just to understand the conversation and that is with hearing aides.

I hope Dougie doesn't have anymore problems with the banding....Dennis has been having the banding done for years now and hasn't had any problems with it, so I was surprised to hear what Dougie was going through.  Dennis had to have this heart test once, and they gave him the medication and his blood pressure went through the floor and scared the heck out of the doctors and they told us he isn't to have that kind of test again.  Then a couple of years went by and the doctor decided to do it again and it went smoothly..they have no idea why there was a problem in the first place.

No is the answer to the holiday's and I'm not giving an explaination to them.  I'm not even going to talk to them about the holiday and if they ask what time is dinner I'll say, "Hey, I'm just not up to it this year!!" 

Sometimes you get use to doing something the same way for years that you don't even think about it, you just do it....I was thinking more of them than I was myself and my own immediate family and that is flat crazy....

I am greatful that I have this forum to come to and you guys are real and you know what it's like to go through this...I know it would be hard to understand it all unless you lived it so I do try to cut his family some slack.....but there is No excuse for not listening when my husband has told them time and time again, he is sick and not able to do as much and they still ask....:(

I am happy to hear you got a nap Emma, we need to take care of ourselves more often.

Take care,

DDMom (Kathy)

Post Edited (DDMom) : 3/28/2012 11:42:29 AM (GMT-6)

Posted 3/29/2012 10:43 PM (GMT -5)
Hello All, I have been trying to catch up on things here. I see so many new people and I was a caregiver for my honey for many years. I know how hard it can be, we have to wear so many hats!! Never ever forget who you are though as that is most important. Every emotion you feel is real and honest, without emotion you become indifferent and that is the worst. Step away when you can to gather yourself and put a perspective on where you are at. It is okay not to want to put on the family functions let them know they need to take the torch once in awhile and never let yourself feel guilty about it either. Being super woman/man stinks and isnt worth it.
Purple Sue
Posted 3/30/2012 12:26 AM (GMT -5)
My times of taking hubby out of B & B  are getting shorter and shorter.  I took him to lunch today at Denny's and he went crazy with the food ordering...strawberry milk shake, mango smoothie, chocolate shake and banana smoothie and omelet.  OMG ...

He ordered all this before I got a chance to say anything.  I didn't have the heart to say he couldn't have it all...but it was like being at McDonald's with a 2 year old who wants  all the desserts.  smhair  

Then he had them package most all of it to go.  Before I finished eating he said, well, let's get going, I have to get back for the maintence man to fix my TV.

So we hurried back to the B & B and when he went to get some meds, I checked his TV and he had turned the sound down and didn't know how to turn it back up.  I explained this to maintence, so they don't have to put this on the "fix it" list, just have the staff turn up the TV.    Hubby did same with radio and so for last 2 days no radio or TV while he waits for maintence man.  (But didn't call me...because, he says, "Your not mechanical.")   Hung out with him for a couple of hours and don't really know if he realized I was his wife or just the errand person assigned to him.    :-)   Oh Boy.  What a day. 

However, when I read what other caregivers and those they love are currently going through, my daily concerns are so small, I am grateful.  Thank you for another day with my hubby...however crazy the day was.

Angie1953

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