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Posted 4/4/2012 2:55 PM (GMT 0)

Emma, I am so sorry that Dougie didn't think before he said something so hurtful. I've noticed since Dennis has gotten older that he doesn't sensor his mouth as much and he has said some things that you have to ask yourself....What the heck was he thinking.  I also have gained weight since going through all the medical stuff with him and worrying about finances and trying to keep everything together.....I am trying to keep a closer eye on it but I am an emotional eater and let face it, it's an emotional time. Dennis cannot handle any kind of stress since he has gotten sick.  He has said mean things to others besides me in stressful situations...So maybe Dougie can feel your stress and doesn't know how to handle it.....Just let what he says go in one ear and out the other....

Carol you are so right it's hard to eat right when you are running down the highway for doc appts. and getting home and then you have to cook after a long day at whatever hospital you might be at that day.  I guess this falls under taking care of ourselves.....ya we will when we have time or the energy....but seriously we have to take care of ourselves or we won't be here for them.....I keep telling myself that.

I hope your getting some rest Connie so your body can heal.  I understand you need to have appointments but gosh that sure seems like to much with what you already are dealing with....I'm thinking of you and hope things start to turn around for you....

Take care everyone and hope you all have a good day!!:)

DDMom (Kathy)

Posted 4/4/2012 4:14 PM (GMT 0)
Thanks ladies. I know. I love the guy. He has always had no filter on his mouth. Part of who he is and who I love. It was the timing. He wasn't saying something I don't know.

So I am hacing a protein shake for breakfast.

Getting ready to go see mom. Hope that the lactulose has helped her clear up mentally. I had 8 hours sleep, but I am so so tired. Tired in a way I haven't experienced before. Just plain ol' weary, worn out.

Usually I load up the freezer with stuff. Since it is just the two of us now, I still make a full recipe and freeze half. But since my mom has been sick in the hospital for over 40 days and we have been feeding dad every night...and now since mom has been in ICU we are also feeding my 2 brothers...well the freezer stash was used up long ago. Since I work at a school I would ususally also try and do extra freezer cooking during President's week (I get week off, "ski" week) and then Easter week...next week...but with all that's been going on, it didn't happen in February, and won't happen next week either. In Feb and next week for reschedule I am trying to get mammogram, eye appt, vet appt for pets...and now I need root canal. Keep making appts and cancelling them.

Another ramble. Feels good to get it out.

Have a peaceful day. Everyone take care.

Emma
Posted 4/4/2012 4:48 PM (GMT 0)
Dougie's timing sucked, for sure. How did you respond? I would've told him that weight is MY problem to worry about after the current crises are over.

I have been on a high protein diet since transplant (helps with healing) and have continued on it through this last surgery. Supposed to have protein with every meal. However, now I'm now lucky to grab a cereal bar for breakfast instead of an egg and toast. Then it's 4 PM and lunch? Whoops! I was at a Mayo or home health was here dressing my legs, etc., so I grab a banana or something fast. Dinner ends up being much later than it should be and I'm trying to coordinate meds with meals. At this point, it's just a matter of getting something with nutrients in me, though it's not protein. I do find that Carnation Breakfast Essentials ("Instant Breakfast") works great as a replacement meal with protein.

No rest for the weary...2 calls this AM...from both Mayo and HH. Then the HH SW showed up unannounced at my door. She took about an hour of my time. I want to go back to sleep, but if I do my groceries will arrive and I'll have to get up.

Tomorrow, early labs then visit with Mayo WC Nurse, then visit with surgery ARNP. A full day. HH here on Sat. or Sun.

Hugs,
Connie
Posted 4/4/2012 6:41 PM (GMT 0)
Emma,
I understand that make appts, then calling to cancel. I used to never do that and saw it as a sign that "someone was not very organized", now that someone is ME. I just hope folks understand. But just can't fit everything 2 people used to do, into one day.

On the plus side of what Dougie said, he is noticing how you look. My hubby is at the point that he doesn't notice anything about me, just "did I bring to the nursing home what he asked me to get". I am the "gofer". More pictures, more plants, more bananas, more pickles, more tee shirts, etc. My hubby wouldn't notice if I gained 30 pounds. I practice saying, "...Like a water off a duck's back." ;)

Going candle shopping while taking my vehicle in for new...well, gently used...tires. Finally will make this appt.
Angie1953
Posted 4/5/2012 4:16 AM (GMT 0)
Hey all.

Tough day today. Mom did not respond to lactulose. Still asleep. She would open her eyes, but not sure that they are seeing anything.

They did ultra sound of liver to see if there were clots, whatever. Nothing. Looks fine. Baffling. Only bili and ammonia are up, all other LFTs are fine.

They are thinking it may be hepatitis due to all her many medications. Doing hep studies over night. Doc says that if she has hep, she will not recover. Hard words to hear. Pallative nurse met with family. ICU doc met with family to discuss DNR orders. All so very hard.

They added xiafan and increased lactulose to see if there is a response to that over night. Her surgeon says he hasn't given up yet. Her cardiologist says that she is hanging on for us. Over dinner we decided that we do not want CPR or electric paddles on her if her heart gives out. We are on the fence on repirator. We would like to use it if she needs it until someone tells us she will not recover. Of the mind set that we are not ready to let her go, but we do not want her to suffer. We will not give up hope until she passes or doctor tells us they find something that she will not recover from. Do not want to do anything to prolong her suffering.

As far as Dougie's comment about my weight...I am over it. He is right, I need to lose. And like Carol's hubby he has said if he can stop drinking I can lose 20 pounds. He is right. I will get right on that! ;) Just as soon as I can...another story for another day.

After dinner my dad and my brothers went up to see mom. I just pop in to give her a kiss and say good night. Give one of my brothers a chance to visit...he runs his own business and isn't able to be there during the day...don't want to be a mom hog...he needs his time with her. Anyway, the four of us gathered around her bed, layed hands on her and we sang a song...it is a grace...that we use to sing before dinner everynight when we were growing up. The cool thing is that she opened her eyes when we were singing. So we sang it again...and again she opened her eyes. I think that was so heart warming for us.

Night all.

Emma
Posted 4/5/2012 10:16 AM (GMT 0)
Emma, what a difficult time for you and your family. So stressful. My thoughts are with you and your family.

Hugs,
Connie
Posted 4/5/2012 11:57 AM (GMT 0)
Emma

Sending you and your family the strength to make a best decision. I'm glad you can all be together.

Triple hugs
Carol
Posted 4/5/2012 3:29 PM (GMT 0)
Emma,

I will do a candle burning array for your Mom today. Either way things go for your Mom, I know this is really hard for you and your family. I will be thinking of you as the candles burn to light a way for your Mom, either back to health or on her next journey. The singing was such a great idea.
Angie1953
Posted 4/5/2012 5:18 PM (GMT 0)
Emma,

Our thoughts are with you and your family at this difficult time.

May today be a better day:)


DDmom (Kathy and Dennis)
Posted 4/5/2012 9:46 PM (GMT 0)
Thank you everyone for your kind words and thoughts. It means alot.
Angie, I love the thought of lighting her way, either back to health...or on her way to heaven.

Her ammonia was down this morning. 77, still high. She is opening her eyes more, and they appear to be more focused. Not sure if they really are, or if that is just what we want to believe. Both her surgeon and the ICU physician said it is not yet time to give up hope. They are hopeful that as her ammonia goes down and her high sodium come down that her neuro function will return. We are still waiting on the hep studies. Won't be back until late tonight or early tomorrow. Family keeping vigil at her bedside. Her oldest sister (age 89 w/alzheimers) visited with her husband (also 89 but sharp as a tack) today. Very hard to hear my auntie asking when will she be better every 5 minutes. But, so glad that she came to see her little sister.

So Dad has decided with us three kids, no CPR or shocking with the defribulator paddles if her heart stops. We are okay with a ventilator until the docs say there is nothing else to be done for her...like if those hep studies come back positive. I know that is what mom would want. She will keep fighting if there is a possibility she can recover so she can come home to her family. If she cannot get better, then we need to let her go, because it's not fair to keep her here for ourselves. If God needs her more than we do, then she needs to be on that journey.

Dang, this is hard.

Nap, then back to visit.
Emma
Posted 4/6/2012 3:48 PM (GMT 0)
Antother day. So so tired. Sorry, I am not keeping up on the other posts. Just coming here to write things out. It is theraputic for me. I do keep all the forum folks in my prayers. Hoping for good news when we get to the hospital this morning.

Emma
Posted 4/6/2012 4:15 PM (GMT 0)
Emma,

These vigils are tough. Have done a few of them in my time. Glad you are not in this alone, that your family is gathered.

I learned a thing or two when my folks died. My Mom passed in 1976; she was too young. My youngest was just 4 months old. I cried and begged her not to leave me, I needed her advice and strong presence. And I was broken hearted when she passed.

Ten years later I lost my Dad and remembered a thing or two. I gave my Dad permission to go if it was his time, told him to choose, that we would miss him terribly, but we would be okay, that he would be in our hearts forever.

He passed in my home, peacefully. With Mom I felt deserted. With Dad I learned that death is part of life, and its okay, it is the plan of things.

I pray for you and your family at this difficult time.

Carol
Posted 4/7/2012 1:47 AM (GMT 0)
Emma, nobody expects you to keep up with other threads or post, except what you want to about your mom and Dougie. It's such a rough time for you. We are with you in spirit.

Hugs,
Connie
Posted 4/9/2012 5:33 PM (GMT 0)
Hope everyone had a quiet and relaxing weekend.  Emma..so so sorry for your loss.

  I had planned for a nice quiet catch up on my own "caregiver taking care of caregiver" weekend, but Thursday when I stopped by the B & B to see hubby, he was in a panic about evening coming.  The night before he had woken up in the middle of the night and did not know who he was, where he was and why he was at the B & B.  He could not find staff to ask for help and was terrified.

  He wanted to pack and come home immediately.  So he has been home with me from Thurs eve until this morning (Monday).  The first night we stayed awake all night watching videos, as he was afraid to go to sleep.  Then he mellowed out and we had a nice time together at home together for several days.  However he is unable to do the simplest things...turn on the tv, make a pot of coffee.  I was hoping that he would be able to pick up some of the tasks, but not really.

  I was not ready for him to come home, so I was feeling very stressed.  I hadn't gotten groceries or done laundry, gotten animal food...as I thought I'd take my time and do it over the weekend.  Also, I slipped in some mud feeding horses Thurs morning and wrenched (?) my back...so have been taking 2 Advil every four hours, but it is still painful.

  This weekend cut both ways;  was nice to have hubby with me and sometimes we could have rudimentary conversations; and on the other hand..it was so much more work than I had planned..esp with a painful back.  (Hope that clears up right away.) 

  As soon as I brought hubby back to B & B, he fell immediately asleep, so I think it wore him out too.  But he got to spend time with me, all our kitties, our dog, Mickie Dee, and check out our Mom hen that is setting on 20 eggs.  Hope we will have chicks soon.  He is looking forward to baby chicks. (He wasn't fast enough to get away from the rooster unscathed, so he does have a small peck mark on his skin.  rolleyes  )  It will make a good story for him to tell at the B & B.

 

  All in all, it was a nice weekend.  When he was looking for our radio and it was right in front of him and he still couldn't find it, I raised my voice and said,  "IT IS RIGHT THERE."  He looked at me and said, "Look at me like I am only 2 years old, please."  It did help me be more patient and loving.  (Good reminder for me!!)

Wishing an easy week for all.

Angie1953 

 

Posted 4/9/2012 6:58 PM (GMT 0)
That's one prolific chicken, Angie! smilewinkgrin

Hugs,
Connie
Posted 4/13/2012 5:52 PM (GMT 0)
Hello everyone. I am back a little...

Off work this week, helping dad, working on service details. Crying alot. Feel sick in the stomach alot. Exhausted in a way I didn't know existed.

Treated myself to a pedicure yesterday. Started bawling when I left...this is something my mom and I would do together from time to time...and we had planned to do it to get her feet back into shape when she got out of hospital...

Today a friend is taking me to lunch...don't feel like eating though.

Ugh. This is hard.

Emma
Posted 4/13/2012 8:33 PM (GMT 0)
Emma, I am sooo sorry. I think you will find that grief comes at unexpected times. Out of the blue, something your mom did or said will surface when you least expect it. There's no way to get over it...you just have to get through it, day by day. You were a champion throughout her hospitalization. Now it's your turn to allow others to help you and for you to let others care for you. We are here for you.

Hugs,
Connie
Posted 4/14/2012 3:46 AM (GMT 0)
Emma,

  Thinking of you.  So so sorry you are going through this.  Seems like grief comes in waves.   Glad you took some time for yourself, your Mom would be proud of you.  The eating thing....it really helps to eat with someone, otherwise it is easy to just avoid it...because of the feeling sick to your stomach.  Sending you hugs.

Angie1953

Posted 4/18/2012 10:19 AM (GMT 0)
hi all, just received new blood results through post for hubby and they are much improved from the last labs from april 2011. anyone know how? still battering that liver of his with alcohol and yet he seems to be getting healthier,,,,,???????

serum creatinine; 56 umol/l
serum sodium ; 140 mmol/l
serum potassium; 4.0 mmol/l
serum urea level ; 1.5 mmol/l
gfr calculated abbreviated mdrd > 90ml/min/1.73 m2
alt/sgpt serum level; 65 iu/l
serum alkaline phosphotase; 158iu/l
serum bilirubin level; 14 umol/l
serum total protein; 82 g/l
serum albumin; 43 g/l
rbc; 4.10
mean corpuscular volume; 100 fl
platelet count; 105
red blood cell distribution width 15.8 %
if anyone can give these a check and see what you think i would be most grateful.

thining of you all and emma, my thoughts are with you.
xxnatasha.xx
Posted 4/18/2012 1:08 PM (GMT 0)
The numbers look pretty good.

Before transplant Mike's numbers were off the chart.  Or LOW LOW LOW.  Mike's platelets were something  like 20! And had been under 100 for 2 years!

Even now some of his are not as good as these.

Alk Phos a little high.

How does he seem to you?  A bit better?

Has he cut way down on the booze?

Glad to  see you posting, Natasha.

Hugs,

Carol

Posted 4/18/2012 7:21 PM (GMT 0)
thanks carol, he seems better than he has in a long while, the bloods do look much much better than this time last year they were way out of whack, the thing im not getting is how? same alcohol intake, same eating habits and often complete lack of food for days on end, the only difference between now and last year is the medication, lactulose, spironolactone, thiamine and vit b and omerprazole. surely they wouldnt return bloods to near normal though would they? could they have got this all wrong with the end stage liver disease diagnosis? we are due to see his specialist tomorrow, (a man who is not overly keen on hubby and threw him out last visit)!! so i will ask him all my questions but it just seems really odd to me that some one with this disease can have a huge turnaround without doing a thing!!, weird.

hows mike doing? cannot believe its almost a year since i held my breath reading every post through his transplant, you two are so sweet and have come through so much. you must be so proud to be who you are.
xxnatasha.xx
Posted 4/18/2012 8:15 PM (GMT 0)
Hi, Natasha! So good to see you posting! I think your hubby's lab must use a different measuring system than Mayo. Those numbers just don't jive with mine; i.e., creatinine - mine is 1.3, slightly abnormal with normal being .06-1.1.

I know that sometimes a patient's numbers will get worse when they stop drinking. Something about the body chemistry. But it eventually evens out.

You can be sure that his continued drinking is steadily making his cirrhosis worse. He may seem okay, but one day he may suddenly "crash." It's just a slow suicide.

Emma, I'm thinking of you and hoping you are doing okay. I know you are hurting.

Many hugs,
Connie
Posted 4/18/2012 9:35 PM (GMT 0)
Natasha-good to hear from you. Glad that hubby's labs look better. Maybe if he can stop the drink he can regain some health. I will keep my fingers crossed for you. I agree with Connie about labs getting worse after the drinking stops. That's what happened with my hubby, everything got worse...and I was so afraid...but then things started to improve. And for now he is stable.

Thank you for the kind thoughts. I am hanging in there. Very busy. Memorial is scheduled for the 28th. Working on food stuff, service, picture show, picture board, prayer card...out of town relatives...do my kids/husband have appropriate and clean clothes...etc. We had a final viewing last Thursday and Dad and I picked up Mom's ashes on Monday. He has them at home for now. I am going to be the one to help Dad with all the legal and money and other papers. Mom did all this stuff, so Dad is pretty lost. It's funny (in a sad way)...when mom was in the hospital I was thinking about when she would be home and how weak she would be and all the PT and help she would need. She had lost so much muscle mass and had such difficulty walking I was thinking (and fretting) about how I was going to rearrange my life to help her and dad...thinking it would be 9-12 months for her to get back to normal. And now she is gone and I will still be helping Dad for the next 9-12 months getting his "house" in order. I wish I was doing the former. What I would give to assist her with walking and laundry, cooking, cleaning, etc. Sigh.

So, I haven't cried today (so far). Dang this is hard. I know it is time that will make the rawness of the hurt fade. I know this is the natural order of things...a part of life, etc. But it is still lousy.

I hope that everyone is doing okay and hanging in there. I am reading posts when I can.

Emma
Posted 4/18/2012 10:11 PM (GMT 0)
Emma,

My Mom passed the year my son was born, 1976...a long time ago, but I tear up even today. She left us so young. My Dad was left alone too and my Mom had done all the paperwork, organizing, etc. like yours.

Dad didn't catch on to that stuff easily. Good you are near to keep an eye on that, or maybe just do it for him. I finally took Dad in with me as it was too hard to manage two house holds.

I thnk of you often and am glad you will have family and friends with you for the memorial. Some families have all kinds of crazy problems, this one not talking to that one. You are blessed that you could be together at this sad time.

Many many hugs. How is Dougie?

Carol
Posted 4/18/2012 10:34 PM (GMT 0)
Thanks for the hugs Carol. Everything kind word and gesture helps. Thank you so much.

It is nice...for the most part our family extended and all get along...we like to talk stinky things about each other, just like all families do, but overall, I think we all love each other or at least feel a family loyalty to each other.

Dougie is doing well. He joined a gym at the first of the year, and other than my mom's illness keeping him from the gym, he has been going 5-6 days per week. He walks on the treadmill and will do a few weight things. He has NEVER EVER (even as a young guy) been a gym guy, so I am very proud of him for being so dedicated. He has gained weight though. Just as heavy as before he got sick. He needs to lose at least 25 pounds (and he was yapping at me!). Last thing we need is to add fatty liver to his other liver problems.

He had a banding on 3/29...same day as my mom went into the ICU. He has a follow up next week on the 24th. Again, it will be with a general anesthetic.

He has been a rock for me during this sad time. I am so thankful for his love and support.

Emma
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