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

[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