ESLD confused?

[fdturley]

Hello everyone,

First thank you for taking the time to read my post.  I'm just trying to understand what is happening with my MIL.  She is a 68 yr old female with CHF, Diabetes, Chronic back pain from nerve damage, and now esld we think from the years of pain meds.  She was complaining of symptoms for 1.5 years I know and her primary care doctor did not find the liver disease.  Now we are told because of her other health issues and the advanced stage of her ld there is nothing that can be done.  She has ascites, edema, stomach pain.  She was sent home on hospice for CHF with palliative care only.  She is not being treated with lactulose because they said it was not helping.  Now she has been told they will not do anymore drains because the fluid will come back quicker.  I don't understand why these things are being with held from her since they are comfort measures.  Thanks for reading this my MIL is very special to me.  She is the only grandparent my kids have left and they are still very young.  Maybe I am just having trouble accepting that the end us near.

Thanks

Denise

[Dee1956]

I know this was over a year ago however I just came upon it and wanted to say it was wonderful of you to share this, thank you, Dee

[fdturley]

The paracentesis did not go as well as we hoped.  They were only able to remove 1.5 liters because the ran into bile everyone they tapped her. It seems that her swelling is mostly due to a bile leak.  Her stomache is huge and she got no relief at all.  Her doctor is very concerned with this.  He is doing a procedure today to remove the bile and try to figure out what is happening.  I'm back to feeling helpless and confused.  They are treating her infection with antibiotics but as of right now I don't think it has helped any.  We are going up Friday for the weekend.  Thanks for your thoughts and prayers.

[rpwoodard]

How was the paracentesis yesterday?

What to pray for? Grace, patience, comfort & pain relief for MIL...and acceptance of whatever is happening at this very moment.

[fdturley]

Thank you everyone for continuing to follow our story and give us support.  Unfortunately my MIL has had a major set back since going to rehab.  She gained 20lbs in 2 weeks.  Her Dr admitted her to the hospital Thursday with plans to do a paracentesis monday.  As of today Sunday she has developed some kind of infection.  I'm not sure of the type or any real details yet.  She is not eating again and is vomiting bile.  It's killing me because we can't visit until Friday the 29th.  I did get a job.  I started last week and I can't take off unless it's a dire emergency.  Now we are waiting for details.  I'm not sure what I should be prayer for anymore.  I hear my MIL on the phone crying because she is so miserable.  She is upset we can't visit and sometimes says hurtful things.  I want her here for our family but I'm adult enough to see how selfish that is at this point.  Does anyone know if the Dr will give her antibiotics?  If they don't I don't see how she will recover.  She has been on palliative care but not hospice since her diagnosis.  Thank you everyone for your kind words about me but I don't feel that I am doing anything special.  Linda is my family and I love her almost as much as I loved my own mother. Thanks again for your time.

[Dee1956]

Thank you so much for sharing your story.  I had read it back in the summer but then had problems so could not keep up again until today.
I am so glad the BBQ was a hit.
Of course she should be able to do what ever she wants as long as she can.
You are such a wonderful DIL, it brought tears to my eyes to read this story and all of the comments.
I hope she continues to do well.
I am really sorry she broke her leg and is now in rehab but it may be a welcome break for her and your BIL.  Sometimes absence makes the heart grow fonder.
My best to you, thanks for keeping us up to date.  Please tell her we all think about her and pray for you all.  It is funny how strangers can be so kind to each other
Dee

[Livelife777]

Hi Denise.    Sorry that your MIL broke her leg but it sounds as tho she's coming around and fighting to live.  After firing Hospice and her big Elvis bash sounds like she's starting to enjoy life.  Bravo to her.
Hope you have found a job which I know is important to you.  Also just want to add that you are an amazing DIL.  Hope you keep up your spirits and that your MIL will recover.
Xo
.....Kim

[fdturley]

My MIL has always been fiesty.  Granted she has gotten more fiesty with age lol.  The party was a huge success.  I have not updated because I have been swamped with my own issues, finding a job, and having sinus surgery.  My MIL was doing good and then she fell and broke the bones in her lower leg.  They put a halo on her leg and she is in rehab until it heals.  Her last paracentesis was in April or May but today she was rushed to the hospital for one because she has gained 20lbs since entering rehab.  Not really sure what's going on now.  As always thanks for the support and reading about our experience.

Denise

[rpwoodard]

Linda, thank you so much for posting a link to the  a wonderful article about supporting someone who is very ill or dying. "Holding space" for that person: helping them have power in decisions about their care, helping them feel safe to express feelings...this was such wonderful guidance.

Denise, has your MIL always been feisty? I've seen folks with late stage liver disease become feisty& cranky as a result of hepatic encephalopathy.

Thank you for sharing your stories.

[Livelife777]

Wow!!!!!    Great idea, I hope!!!!!
Please let us know if it was a disaster, or......hopefully a wonderful party.
.....Kim
She sure is "Fiesty".

[fdturley]

Hi everyone.  Just wanted to uo date yall.  My MIL is still here and feisty as ever.  She falls alot and won't listen to people telling her to stay off her feet.  I worry she is going to do permanent damage or kill herself with a fall but she knows the risks she takes and there isn't much I can do.  She recently started asking to go on a vacation to the Smokies.  She loves the mountains and all the dinner shows.  Her favorite is the Elvis impersonator.  I have to admit I was scared out of my mind with the thought of taking her away from her medical team.  I also know the cost of a family of 7 on vacation is huge and she was going to pay for everything.  I hope I did the right thing.  I convinced her to hire a private Elvis and have a big family bbq instead.  I'm hoping everything goes smoothly.  Wish me luck because if it doesn't work out my brother in law will never let me live it down.  He thinks both the trip and the party are a waste of money.  I believe she should spend it while she can and on things that make her happy.  If your reading this thanks for checking in.

Denise

[hepcandme]

I am really feeling for you and hoping you get some support for yourself

It is never easy

Sending all the best to you and your family

You are obviously a very caring, kind woman

[fdturley]

Well my MIL is definitely feisty lately.  She has fired hospice.  She days she doesn't need them intruding in her house and telling her what to do.  I'm not sure this was the best thing but while she is feeling ok we are trying to respect her wishes.  Hope everyone is doing ok.  Just wanna say this is the worst Rollercoaster o have ever been on.

Denise

[hepcandme]

I got a little chuckle imagining your MIL dissing the health care workers

I remember going though this with a friend who was dying who could be just plain nasty! Even to me, his primary caregiver!

But the thing is, when you are so ill, you have a right to be cranky. You hurt, you are often afraid and confused about what will happen

I am sending All my best thoughts for you to get the job that you are wanting. That will relieve some stress in your life and you certainly deserve it

Finally, don't forget that touching is such a small, simple thing to make someone feel better. A back rub, applying lotion, so, so important

And for you and your hubby, mutual massages!

Best to you, your mother in law and your family. I know how hard this can be

[Livelife777]

Denise.  It's wonderful that your MIL is so feisty.  You never know how life works and sometimes when you fight back, you can beat the odds.  I'm hoping that is the case in your situation.
Am sending you positive vibes and amazing energy in hopes of you getting this job.  Think it's time that life sends you a break and makes your home life a little bit more financially secure.  
You are one awesome women and I'm sure your family is lucky to have you.
Keep us posted on how your doing.
Warm thoughts
......Kim

[fdturley]

Just a quick update.  My MIL is no better but not severely worse either.  She is feisty as ever.  She keeps asking hospice how long she has.  One nurse said 3 months another told her what I thought was correct and said no one knows until she is bed bound.  She does not like the nurses, social worker etc coming to the house and says she does not need them.  While I wouldn't mind having a different company I still believe hospice is a great help.  This company has already messes up her meds twice and the first time could have been fatal.  She takes 25 mg of atenol for her heart and the sent out 100 MG tablets.  Her bp is already running very low with both numbers under 100.  The next time the nurse looked in her meds box and told her we put three neurotin at the same time and did her meds wrong.  The meds her was talking about were her metformin which see takes three of those daily at 6 for her blood sugar.  The pills look alike but the numbers on them are different.  Plus my MIL can not take neurotin because of severe side effects.  I think these things have dulled her trust in them.  I am hoping my husband and bil find a new company because it is my belief that she needs someone with her 24/7.  We have had to cut back on the frequency of our visits because financially we can not continue to go so often.  Not only does it cost gas and food to go up there but my husband misses overtime hours which we need until I have a job.  I have applied for a very good position with the farmers association and if I get it we will be able to resume our weekends because he will not have to work overtime.  Pray I get the job please.  As always thanks for reading this and for all your support.

Denise

[Livelife777]

Hi Denise.   I'm also happy that you had some quality time with your MIL.  The fact that she was able to get out and do some shopping is a tremendous improvement.  Hopefully she is comfortable and keeping up with her meds.
It's also wonderful to have Hospice there to help with special needs should they arise.
Want to say Thank You for being an amazing DIL.  I'm sure she knows what a truly caring person you are for her.
Warm Thoughts and Wishes
......Kim

[fdturley]

My MIL is not in charge of her meds except the break through meds.  We have a timed medicine box that we have always fixed a week at a time.  The reason for the box is that she does not see well enough to know what medicine.  We have a normal pill box and she got it upside down due to her vision issues and took her night time meds in the am causing an accidental overdose.  This was 4 years ago long before the esld.  Her son fills the box and she takes break through hydrocodone as needed. I was thinking maybe they didn't realize it's only a 3 day dose because most of their patients seem to be on other meds for pain.

Thanks

Denise

[hepcandme]

Your MIL was probably so happy to spend time with you, eat well and enjoy just having company with her family!

I think that that hospice probably only gives her 3 days of narcotic at a time to prevent her from accidentally or purposefully overdosing. I don't think that this is necessary but that is my own opinion but it also speaks to your MIL's ability to make medical decisions for herself on her own. Does she know what could happen if she takes more than the prescribed dose?

This is a situation that has stirred considerable debate about someone's right to die. If you are able to have that conversation with your MIL, you could ascertain at what point she feels like not continuing her struggle, whether she wants to dies at home, etc. and that will comfort you knowing that she is making her own decisions about this

Then hospice may be a bit more open about increasing the meds after you have had this candid discussion with your MIL. Hospice workers have legal boundaries but I get the feeling from you that  everyone on her team has decided that there should be no unnecessary suffering from pain and whatever must be done to continue that is what she wants. It is important that hospice be kept informed about these decisions and updated when necessary

Good luck to you and your MIL. So very pleased that you were able to spend time with her

[fdturley]

Just a quick update.  We did go and spend spring break week with my MIL.  She was able to get out of the house and go shopping the first day.  After that she did not feel well enough to go out so we stayed home with her.  She ate well while I was there.  She has lost down to 145 lbs and she is a tall woman, about 5ft 9 in.  She started out weighting about 200 lbs.  Quick question anyone that has dealt with hospice.  Why would they only prescribe enough of her methadone for 3 days at a time?  She takes 5 a day and they give 15 at a time.  This has caused her to run out on more than one occassion.  Thanks everyone.  

Denise

[hepcandme]

Oh, good. I am glad she is feeling a bit better. The methadone itself is probably making her nauseous - a side effect of opiates

Just as you did with the pain meds, just let her eat Whatever sounds good and she thinks she can keep down. A vanilla milkshake? Pudding? Yogurt? Mashed potatoes and gravy?

I'm happy that you will see her on Monday too. It's difficult when you are far away but now you'll get to spend some quality time with her

And, not to sound like a broken record, try to get to know the hospice staff. The are there for you and they are very good at what they do

Take care

Thinking of you and sending positive thoughts your way

~ Linda

[fdturley]

She is awake and coherent.  My husband spoke to her yesterday and she said eating makes her nauseated and makes her stomach burn. My husband talked to her about getting the nurse to change her medicines.  Right now she is on methadone 3 times daily with break through meds in between as needed.  My husband has no more vacation time so we can't go until Monday at the earliest.  I feel better about the situation since my husband spoke to her.  Thank you everyone for your responses.  This week is spring break for my kids so either way we plan to go for an extended visit.

Denise

[Livelife777]

Hepcandme is right.  Usually not eating is not a good indication as this may mean her body may be beginning to shut down.  On the other hand, she may be depressed and refusing to eat which can be a normal response to what she is going thru.
The Hospice nurse would be the one to ask.  They are the ones whom day after day are with the patients when they pass. Honestly, they can give you answers.
I do hope that you are able to spend time with your MIL. It's so evident that she is a very special women in your life and its important that you are able to see her.  Please again know that we do care and will be here for you should you need a friend.  This must be a very difficult time for all and such a heart breaking time in your life. Please be kind to yourself as well, as I'm sure that is what she would want you to do.
Warm wishes
.....Kim

[hepcandme]

Not eating is not a good sign. Is she awake and coherent?

You might want to ask someone on her hospice team to put you on their phone tree and try to have a candid conversation with them sooner rather than later

One can go quite awhile without eating btw

Let us know if there is anything we can do

Sending calming and caring thoughts your way

~ Linda

[fdturley]

My MIL is now getting her meds as needed.  The dr explained the need better I think to my BIL.  I have just found out she has not eaten anything for 3 days just ice.  I'm very worried because we can not go back until Thursday of next week.  I hate being so far away and not getting info first hand.  Can you tell me should I be worried she won't make it until then?