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2Worried helping both parents with ESLD, needs support

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Posted 1/4/2015 4:56 PM (GMT 0)
This is a reposting of 2Worried's story. I will delete her other post on Witsend's thread so we can focus on this one family here. ML
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Hello everyone, I have been reading posts for about one year and decided to finally join today. My story is about both of my parents. My brother and I were raised by alcoholics. They are only 73 and 74 years of age. It has always amazed us how their bodies are still working. However, now I feel we are near the end for both.

My mom had to be placed in a nursing home after an ICU stay of 2.5 weeks. She is unable to walk due to drop foot (both feet). Dx with ESLD, Congestive Heart Failure, Multiple Organ Failure, GURD, a few bouts of Pneumonia. She went into a nursing home in August 2014. My dad was alone at home. He was a half hour away from her. I am an hour away from her. My brother 2 hours away.

My dad was found on his bedroom floor after an Enchephalopatic (sp) episode - at a .20 BAC. The ER doctor diagnosed Cirrhosis, telling me his liver is on the edge, Hepatic Encephalopathy, Subdural Hematoma, and a low platelet issue. Now my dad is in skilled nursing. I am expecting to talk to his doctor next week. This time of year has been frustrating as doctors are all on vacation it seems. So Dad has regained ability to walk and has been weaned off alcohol. Nothing new. At first he wanted to go to the nursing home mom is at, but now he's decided he WILL go home and he WILL drive. Now what?

He will have no caregiver, ever. He refuses one anyway. He refuses any help at all. He's very sick. The only hope we have is that the doctor will take his license away or by some miracle send him to the nursing home. Mom's nursing home is waiting for an open bed for us. However, knowing that people have the right to make bad choices, the doctor may very well send him home. Needless to say, my parents' relationship is not good. They don't know how to talk to each other nor look out for each other. I can't stop worrying about my parents' futures. Mom thinks she's going home at some point.

We decided, along with her doctor, that we will be honest with her if she asks. She won't ask, I know that much. Everything I read on here, is exactly what my parents have going on and have had going on for so long. Their bodies seem to be like the Energizer Bunny, it keeps on working. (I had to add some humor to this situation) I am disabled and this is overwhelming me, making my pain worse, etc. I don't know how long I can help them. We have been going every other wknd to visit both of them and stopping by their house. It's killing all of us.
Posted 1/4/2015 5:03 PM (GMT 0)
2Worried.

What a difficult situation you find yourself in.

End Stage Liver Disease is never an easy journey, but with neither of them able to look after themselves and your medical issues, this is a mess.

And you are right...Dad has himself set up for a big failure. Like dementia, Hepatic Encephalopathy leaves the patient unable to make clear decisions. I hope his doctor DOES take his license. If something awful were to happen to others while he was behind the wheel, that would confound the tragedy.

I guess you need to talk with the social workers where he is and find out if some tough love is in order to keep yourself sane. Surely he does not expect you to be his primary caregiver, as you are not well and live quite a distance.

How about a deal? If he agrees to 4 hours a day or whatever, you will...whatever your side of the deal is.

Of course with HE it is difficult.

Does someone have his power of attorney, are his affairs in order, is someone paying the bills, does have a medical directive (medical power of attorney to decide his care if he is not able to)..and for your Mom also?

I am so sorry. It sounds like they have surrendered to this awful disease.

Hugs,
Mama Lama
Posted 1/4/2015 6:05 PM (GMT 0)
MamaLama, thank you for your support. I have to agree with you that they have surrendered to this awful disease. It won't be a peaceful end for either.

As soon as Mom went in ICU I began the paperwork. For each of them I have General Durable POA and Medical POAs. I've forwarded their mail to my house. Creating online accounts to pay the bills. i'm changing addresses to mine. We went through their office and I was able to find insurance information, retirement info, homeowners ins info, and copies of their wills etc.

Thank goodness their house is paid off; however, quite a few improvements need to be made.

I am unable to drive by myself to see them. My brother is in law enforcement, making it very hard for him to pick up and go to them as well. When dad get discharged home i really don't know how he's going to get there. He knows that. I told him he needs to have a long talk with mom about where he goes. He had no response; exactly what mom does.

I'm scared. My therapist keeps telling me to let go and not feel guilty by not going to see them as often from now on. Both sides of this situation is taxing my body and my emotional side. The business side and the times we all go to visit or take them items they want.

I need to stand up to my mom and say "no" when she demands certain brands of personal items. "Bring me this. Bring me that." Now that she doesn't have dad to boss around, I'm who she bosses around now. And I'm getting to the point of being over it. I'm so tired of feeling hurt by my mom.
Posted 1/4/2015 7:32 PM (GMT 0)
Since my dad refuses to go to a nursing home, that tells me he is essentially refusing treatment. I still pray the doctor will send him to the nursing home. That hope remains.

I'm looking for anyone who has been through having a loved one refuse treatment for ESLD. Who continues to drink and not take his medicines like he should.

I know that if he goes home, he will pick up the bottle again. He hasn't proven to us that he can stay away from the bottle. And I know he won't be able to keep up with the meds.

What am I looking at from here on? The ER doctor told me if he continues to drink, he has 3-6 months. I don't feel he even has that long.

What's going to happen to an ESLD patient that will not stop drinking?

I love this site. All of the posts I've read shows compassion and support to others. That's exactly what we all need. And this forum does it!
Posted 1/4/2015 10:29 PM (GMT 0)
Welcome, 2. I am sorry your are struggling with sick parents. Not easy when you are disabled yourself.
And your brother has a big job that will make it difficult to spend his free time caring for his folks, as well.

I found this info about subdural hematomas and recovery. It looks like your Dad may be in the rehab part now. With his HE episode treated and controlled...he might be released to home soon. I think that is your big fear. Right?

Subacute and chronic subdural hematomas have better outcomes in most cases, with symptoms often going away after the blood collection is drained. A period of rehabilitation is sometimes needed to assist the person back to his or her usual level of functioning.

I am wondering if your Dad is sick enough for a nursing home. A hepatic episode would be not be something that required a nursing home after they get the lactulose working and the ammonia in range. Your Dad may become "medically stable" and not meet the criteria to be in-patient anywhere! If he has not got someone to pick him up, and if he is of sound mind,... he could be released. Facilities have medical transport drive released patients home when no one comes to pick them up and are without money. This happened to one lady here. She was her brother's POA. A very similar situation to yours dealing with a loved one, ESLD, and alcoholism. She was hard at work trying to get her brother into a nursing home from skilled care. She was repeatedly denied...and her brother was released and sent home. Needless to say, she was furious.

ESLD is awfully difficult. A lot of hospitalizations, and it is worse if one is alcoholic.

There are millions of people who live alone, are old and sick. Some do not have a support network nor a helping family when they are in a medical crisis. I can tell you have a good heart. Many do not show up their aged parents with less than charming conditions.

I would think you and your brother want to help Dad get established at home. I suggest you find the appropriate care for him with meals on wheels possibly, and hire a house cleaning service. Perhaps find a way to be alerted for meds through a phone app or personal phone calls daily. Sadly...not everyone gets what they need from a medical and care community. Much falls on families and loved ones. This is the case with age and/or any health problems.

I am so sorry this is happening with both your parents needing attention at the same time. I do hope you and your brother are able to get the needed help for the best outcome for all involved. You are welcome here. Big Hugs
Posted 1/4/2015 11:36 PM (GMT 0)
2W,

I am especially sensitive to your plight at the moment, because in addition to looking after my partner for years, thorugh ESLD and transplant, and now heart surgery, I am the primary caregiver to my sister who lives quite near and has dementia. It is still in early stages, but she is saying NO to any outside help...not in this lifetime....is the quote of the week.

But she expects me to drive her where she needs to go, get her groceries, do her financial stuff like you do, bail her out of problems when she doesn't refill her meds or gets a bit out of hand when she forgets to take them (but wont let me do the box), etc. Today she told me that she would NEVER "go to a home."

What this means is that evidently I must go to an early grave looking after her with no regard to my partner or myself.

This cannot happen, of course....you and I have to get ourselves in a better place.

Themiz has a good perspective...plenty of elderly don't have family who will do the financial matters and look after the details. Yiour folks do.

There are services you can line up, as I can...and will.

I can't do myself in, what good would that be for anyone?

You can't do yourself in either.

I would think a periodic visit would fulfill your obligation and your continuing willingness to line up services to pitch in is fantastic...cleaning lady, meals on wheels, maybe a companion or driver who can him when he loses his license. IF HE CAN AFFORD THAT. That is what I am going to do next.

If sis throws the companion out, when then she will have to get by with a once or twice a week visit from me and I will do what I can during those visits. I am over there every day for one or another emergency. Today was water on the floor on the bathroom floor by the toilet. I'll call the plumber tomorrow and maybe she'll let him in. I can't go over there, my partner has two doctor's appointments and I can't be everywhere at once. Last week it was the broken air conditioner and I discovered she called someone about that herself, and bought a $1500 UV light to keep the mold away (which she did not need)...gasp...that $1500 will be needed for her care down the line. They did not fix the AC, it was still 88 in her living room. I called our regular AC guy who fixed it for free as she has a service contract with them.

Since he is in patient at this time, they may order some transition care at home with a visiting nurse a few times a week....we just had that with my sis. They also sent a social worker who had all kinds of good ideas for help in the community. My sis rejected the meals on wheels, this in the saame week I found 4 eggs and a jar of mayo as the only food in her house. At the SWs advice I got a bracelet/necklace that calls a loved one or 911 if the elderly person falls or feels sick or frightened...it can be worn in the shower. You can get them with or without monthy service charges. I ordered the one without a monitoring service...so it can call ME. I wonder if she will wear it?????

You ask what the next months look like.

Drinking he will decline more rapidly. He may be more reasonable if he does not have hepatic encephalopathy. Does he, do they give him lactulose and xifaxan?

He may require additonal hospitalizations. Liver patients can have short term kidney failure that sometimes comes around with IV fluids, they can pass out and go into comas that can be reversed with large doses of lactulose, they can have bleeds from varicose veins in the esophagus that can be fatal if not treated immediately, and they can be very difficult to be with.

I am so sorry this is happening to both of them at once.

First be well yourself, then do what you can. Visit when you can. It seems you have taken care of the basics with the paperwork.

Hugs,

Mama Lama
Posted 1/4/2015 11:44 PM (GMT 0)
themiz, thank you for helping me. Yes, you're right, I am afraid of Dad being released to home. But like you said, once they get him stabilized and walking without assistance, they will have no reason to keep him. He may have to get transportation provided or we make them keep him a few days until we can go get him.

They have referred him to a Neurosurgeon for f/up on the subdural hematoma. So far, the bleed has not moved. The neuro happens to be my neuro for 3 of my spine surgeries. Small world. Doctor had transferred to Newport News. That's too far to go now. Dad wants to see his Neurologist. We shall see what happens with that.

My bro and I have talked about getting a life alert for him. One that is equipped to know when he has fallen without him having to hit a button. Next time he falls, he will probably be unconscious.

For now, we've placed motion cameras in their house. It allows us to look at them in real time, takes pictures in the cloud and texts when there is motion.

I've discussed (rather, tried to) with Dad getting home care. He refuses to let anyone in the house. Being a textbook alcoholic he keeps secrets, wants privacy, etc. I suppose we will cross that road when we get to it.

We always knew where alcohol would lead them, but never did we think it would happen to both at the same time. No one knows when either one will pass. And that's most frustrating right now for me.

Joining and writing a post today has already helped. The compassion shown on here is amazing. I really appreciate your support. It means a lot. If you want, I will keep you posted.

Thanks so much.
BIG hugs back at you!
Posted 1/5/2015 1:26 AM (GMT 0)
Mama Lama,

I have chronic pain group tomorrow and I know they are going to remind me again about taking care of myself. Just when I was getting my pain management in control, somewhat, all of this happens.

And you, I'm feeling your struggles, pain and frustration. I have to cut back on how often we go. My hub and I have been going every other wknd. Sometimes on both days. That has to stop.

Yes, he has HE. He's on lactulose, so is Mom. Mom has a hernia in her esophagus. One doc told me her stomach goes pretty far up her esophagus.

My parents have also spent too much on so many things. Some guy was getting $75 a month to mow, landscape, etc...ha, looks like he hadn't been there for a year! Guess who isn't getting his money anymore?!

I have much more to talk about with you, but I need to make myself get ready for bed and read. I'm wiped out. I'll write you tomorrow if that's okay.

Have a good night, if it's night where you are!
Posted 1/5/2015 4:00 AM (GMT 0)
I wanted to suggest one thing regarding your Mom's many requests for personal needs. You probably can order these things online once a week, or bi-weekly, and have them shipped to her nursing home. Check with staff to be sure.

Really, even the most gentle people can become pretty out of character with HE. Rest. You need it! Big Hugs
Posted 1/5/2015 11:30 PM (GMT 0)
Mama Lama and Themiz,

Mama, your sister is very lucky to have you. Does she appreciate, or able to appreciate what you do for her? I know I will never get a Thank You from my mom; however, I get tired of being talked to in a rude manner. I'm getting better at it, plus I never know which Mom I'm going to get each time. Now whenever I bring a form for Dad to sign, he gets emotional and tells me he appreciates all I'm doing for him. When Mom first got sick and before he did, he cried everyday about Mom. He cried when I would do the business part of everything for me.

Yep, dad has HE. Doctor said he had an episode when he passed out. Both he and mom are on lactulose.
His ammonia levels were high at first. His ascites seems to be getting worse. His stomach has grown and the rest of him has stayed the same. The hospital couldn't get his platelets up for a while.

Mama, you and I are NOT going to go to our graves early from taking care of someone outside of our own homes! Not going to happen. I have four appointments this week for myself. Taking someone else is out of the question. Transportation is always been ordered for mom and dads' appointments.

And that's what I have to keep telling myself. Stick to boundaries. If I get to lie down for 20 minutes, I almost feel normal. A little better. Last night after signing off, I had to lie down even before getting ready for the bed. So sad. But it works.

Themiz, I am going to do exactly what you said. Order Mom's requests online. I order almost everything online for myself anyway. Mom always thinks i can just "pick up...at cvs...", well that's harder then she thinks. I can't "run errands" anymore. I don't even do the grocery shopping, my hub does that. So if I can't get what she wants on Amazon, etc, she may not get it.

So today, my phone is blowing up during group. I had sound down but could still hear it. Mom's nursing home, Mom, and my hub. All three were calling about the same thing. Nursing home wants to give Mom a flu test.

I'm a little worried about her cough lately. I can't remember if I've mentioned this. She has CHF and multiple order failure. I've read that a persistent cough along with rattling in the chest is a heart getting closer to failure. Her voice is also hoarse. They are testing her for flu due to outbreaks at the home. I don't feel her cough is the flu. Do you think it could be her heart? I just told her I'm worried about her getting Pneumonia. She's getting a pneumonia shot soon, but it's probably too late for that - given her problems. And she seems less active and tired. That's probably not a good sign either.

She got pneumonia in ICU after aspirating during endoscopy procedure. She was then intubated for about 4 days.

Speaking earlier about HE, dad sounded drunk today. I know he isn't but I wonder if it has to do with his ammonia levels. It was odd to hear that old voice again. I know you guys said his personality would change a lot. I suppose this is one of those times.

Mama, how was your sis today? Any more running around today? I am sensitive to that. I don't know how you do it. Kudos to you.

So much still left to do. Like what social services has to offer. Home care, which I hear is very expensive. I don't think I can add a driver. Wish I could.

How are you both today? Hoping you both had a good day.

Catch up when you can.

Big Hugs,
2W
Posted 1/6/2015 1:27 AM (GMT 0)
Hi 2,

I raised our Caregiver Thread up for you! We let it slip off page 1 during the holidays and this is a good time to bump it up to the top. The Caregiver Thread is the place caregiver's can share the daily ups and downs.

I don't know if you have seen this documentary about HE . I found it powerful when I first saw it. My husband was having TIPS and he and I were trying to research what would happen. (a shunt in the liver known as a bridge to a transplant.) This was terrifying for themister and me. We hoped he would be one of the % that did not get HE.

Sadly, themister started with HE in ICU immediately following TIPS. That was 2 years ago, this month. This is a good "window" into some of the difficulties those with HE struggle with. And their families. I hope it helps you understand both sides of HE.

www.hesback.com/

Also, Xifaxan is the 2nd RX used for the best outcome with HE. It is expensive, but I would check and see if your folks are taking Xifaxan for HE.

I wanted to mention CVS does have online ordering, as well :) You can help Mom with all of her favorite items right through their site. Big Hugs
Posted 1/6/2015 2:59 AM (GMT 0)
Hi 2W,

Today I called a plumbler to fix sister's toilet. She let him in (whew) and it doesn't run on the floor any more.

I also called a Home Service that helps seniors at home. They are doing an "interview" with us on Wednesday...to see if "down the line" there are services we could utilize. Down the line is pretty soon...like right away. They will drive to grocery store and pharmacy if I make lists, drive her to doctors appointments (not key ones where I want to hear the dx etc (neurology, psychiatrist, pcp), they will supervise taking meds if I fill the boxes, fix one meal a day, check on changing ability to handle personal care and will help when declining, visit where she is totally alone..does not go out, does not call anyone but me. They will even take her to the gym if she will agree to go back...the neuro says exercise holds off the worst for a longer time and sister is HEALTHY but for this. So sad.

I am feeling better for the first time in weeks.

Hope you do too.

Hugs,
ML

I set a trainer up today for the gym.

Fingers crossed.

Thanks for asking.

My liver patient is doing well post heart surgery and returns to TP clinic on January 22nd for a preop appointment for a HUGE incisional hernia over his liver. Our center is 2 1/4 hours away in Miami....so a long drive down and back and he is not supposed to drive for a few more weeks.

I don't have any of the side problems you do, but I will confess that getting up at 6 after a bad night sleep to take Mike to get his monthly "liver labs" send me to bed for a bed nap today myself.

Hugs,

Mama Lama
Posted 1/7/2015 6:24 PM (GMT 0)
Hi themiz, the documentary was mind blowing. I learned so much more about HE and where it sends the patient. It's an awful disease/syndrome to have. My dad's skilled nursing center wants to discharge him to go home without a caregiver. I'm looking for any resources out there that have Regulatory Ethic Rules on Discharging. I'll look on here in resource section.

To make matters worse, NO care plan meeting has happened. It's been almost 3 weeks since he was admitted. I will have to ask for one.

Mom and I are also getting his PCP involved (should've been done a month ago). Keep fingers crossed he will give advice and/or call dad's current doctor.

Once I have done all of this I will feel better and know I tried all I could to keep him safe.

He's not on Xifaxan yet or know if he's going to be on it. I've also put a call in to his doctor.

Thanks for the CVS tip! The one time I ordered from them, it took 2 weeks to get my order! So, I've gone on to Walgreen's. Quick shipping and free over $25. Plus they have what I use for my lotions and potions (what my hub calls them!).

Lotions & potions are very important! If I can't teach my leg to walk, then I'll keep up on the rest of me!!

BIG HUGS
Posted 1/7/2015 6:33 PM (GMT 0)
Hi ML,

I'm so glad you are arranging workout time for yourself. Prior to my spine ruptures, I was a avid workout freak. Everyday since high school. I ran, yoga, weights and oh, how I miss it. Now I do aqua therapy as my body cannot handle land therapy anymore :-( GOOD LUCK and have fun doing it.

I'm very sorry to hear about your liver patient. That's a long drive, but I'm sure it'll be worth it especially to go far for a good doctor. You both will be in my thoughts and prayers. I can't imagine the pain he must be in. Tell him I said Hi and I'll be thinking about him.

Loving the Home Service details you gave me. And love that you've taken that step. You'll know you've done all you could to help your sister to have a little independence. More importantly, you get some respite time! I hope she agrees to go to the gym. You may be meeting right now, I hope it goes the way you want the meeting to go!

Neither of my parents ever exercised. Thus, making their bodies even weaker to combat the trauma their bodies are going through. No exercise, shorter life. I've always tried to get them to, to no avail.

Let me know how it went today. Keep feeling better!

Hugs,
2W
Posted 1/8/2015 12:58 AM (GMT 0)
If your Dad is now finished with rehab and his HE is controlled, he probably will be released soon. What does your Dad think? Does he feel he needs help at home, or is he able to handle things ok now?

Dad probably will be able to make his own arrangements with you and your brother for many of his needs. Seems he is of sound mind, just sick with ESLD. Hopefully he will want some help for the house chores and meals at least.

The mister has been hospitalized many times over the years of liver disease. He is of sound mind and can make his own decisions unless he has altered state with an HE episode...but being sick and fatigued makes it really rough. Does your Dad have siblings or friends close by?

We have many members here that have HE. Some live alone. Others are retired or disabled. Some are controlled pretty well. The goal is keeping toxins flushed from his system with lactulose ...and eating a liver friendly diet.

Fatigue is a big problem at this stage, so your Dad may not be doing much now. Check in with him often because it is boring for those who are sick and alone.

The thick tongue and hard time tracking can happen with HE.

Let us know how things go for you... and them. Big Hugs
Posted 1/8/2015 9:35 PM (GMT 0)
Update on Home Care.

This is not for everyone, but I found a service that will come in 4 hours shifts, as many as you need, who will do as much or as little as you need...escalating over time as needs change.

I have arranged for help 3 afternoons and the helper will:

Drive to grocery store, pharmacy, doctors, off site mail substation where she has a po box, etc. in my sister's car WITH MY SISTER. I am doing all this now.
Prepare a dinner meal that can be eaten early or reheated.
Be a companion and help with daily chores as needed...make bed, fold laundry, empty dishwasher, etc.
Be certain that the pills I have sorted in the box are taken (but they wont sort the pills at all).
Be certain there is cat food and litter.
Call me if there are concerns.

We will be billed $20 an hour and the helper will be under the supervision of an RN and will work to a careplan of that nurses making.

My sister can afford this help, thank god.

I feel a lot better knowing I can be the orchestra leader, that she will have company, that someone will be checking on meals and meds. I have been worrying a lot. My job will be to make sure there is help, to do the financial stuff, and the major medical stuff (meds and appointments with psychiatrist and neurology, etc.)

And I have busy schedule with my partner. We have 2 days in Miami next week with Transplant getting him ready for the incisional hernia surgery in February.

The next week, 2 days with follow up appointments in cardiology following the aortic valve replacement surgery.

Mike is doing well, resting a lot. Today he came on my on my ROUNDS and actually pumped the gas (gosh I hate pumping gas)...Woo, hoo. He had no bed naps today but is sound asleep in front of the TV.

I am going out tonight, alone. I have a writing class I take once or twice a month and gosh darn, I am going.

I hope....there is still an hour where things can go wrong.

Happy day to everyone.

Mama Lama
Posted 1/8/2015 11:34 PM (GMT 0)
@2...have you heard anything else on your Dad's release and any possible helps for him?
I know it is not easy.


@Mama...So happy Mike is doing well enough to pump gas. There are times just that alone constitutes a good day. Good news for your Sister, too. For those who can afford the cost to stay at home and pay for services....it will help to be more normalized for awhile.

Caregiving for two adults in two different homes is a huge responsibility for you.

Good to know you have some options for now. You do need time to catch your breath with all you have had on your plate, and will continue to have. I am really happy to know you have something to do for you...and that you feel all is safe and sound so you can go tonight. Big Hugs
Posted 1/9/2015 2:21 AM (GMT 0)
themiz...I spoke with his GP's nurse yesterday. I am coordinating getting his hospital records and skilled nursing/rehab records sent to him. Our plans are to get him in to see his doctor (I will be there) and the doctor will assess him. I communicated my concerns with the doctor's nurse and the caseworker at rehab. I have yet to get a call back from the doctor at rehab.

Dad will most likely get discharged next week, but haven't gotten confirmation yet. I have/had 4 appts this week for me. I should be looking at help, but I haven't had much extra time (even for myself) I'm so tired and fatigued.

I know my dad, he is stubborn. Very stubborn. He won't allow anyone in the house or accept any help. However, I did find out that a social worker can be sent to his house unannounced within 30 days of his release to check on Dad. If dad doesn't answer the door, or refuse to let them in, then the Deputy office gets involved. I was glad to hear that.

Dad is a career State Trooper and Deputy at Fairfax County, retired from both. Knowing him he'll make buddies with the deputy that's sent. THAT...will be my luck. I'll keep you posted. Big Hugs
Posted 1/9/2015 3:37 PM (GMT 0)
2,

This has become a caregiving thread of it's own. Since so many loved one's with liver disease do end up with a a family member needed for at least some of their caregiver, it is good to have some perspective on how this works. Especially when it is not a spouse, and the sick loved one does not want much help.

I also believe your Dad will be released to home, as we have been through HE episodes and know how this plays out.


Because your Dad is retired law enforcement, I am certain he is well aware of his rights to live alone and determine how to handle his care. Even some who are not up to really taking great care of themselves, choose this.

Having ESLD does not make him incompetent. There are many disease's that have episodic episodes when uncontrolled, of course. HE is not constant. Dad may be controlled on lactulose for now. If not, things will soon manifest. Like other seniors and/or chronically ill/terminally ill, he will have good and bad days with this disease. And with aging, the same thing. Particularly difficult as his wife of many decades was just put into a nursing home. So I know he is experiencing grief and loss of his own ability and the loss of a companion at home.

Here is the most important thing I see in your situation... for YOU. I would be sure to check on elder abuse laws in your area. Be meticulous with records and documents if you are handling the fiduciary end of your parents finances. I strongly suggest you hire an elder law attorney to protect yourself. The rules on spend down and many issues can be something the caregivers don't think of when caring for loved ones.

www.agingcare.com/Articles/Spending-Down-to-Medicaid-133289.htm

If you have done this prior to accepting POA ...I applaud you. Your brother is also in law enforcement and perhaps the two of you can meet with an attorney to establish the best way to approach this.

Sorry this is tough. Sometimes we can not take care of others we love. If our own needs and our own health are all consuming, we may not be the right person to accept that role. Your Dad and Mom own their home. They do have assets. Since he drives, it sounds like he has a vehicle. And there are bills that have been paid and kept them with those assets up to this point.

Even with the problems of alcoholism and illness, it appears from work and living history.... they were responsible financially.

I know how difficult this is for you. Truly. My husband and I have two elderly (near 90) parents we can not care for on any level, due to our own health issues.

We had to release ourselves of the guilt and responsibility. We simply can not do anything to help right now. One reason...distance. They are in another state. Second...we are too sick in this household to take more on. So I understand where you are coming from. We know they are being watched over and cared for, when needed. Sadly, we are only human. You will do the next right thing, 2. Take care of yourself. Big Hugs
Posted 1/9/2015 5:33 PM (GMT 0)
themiz,

I am unable to be a caregiver also. My husband is my caregiver. Both parents are too far away to keep this going the way it is. I'm probably helping more than I should, being disabled myself. I can't drive to either of them. Yes, dad is getting discharged next week most likely. I've already discussed this with brother. Neither of us can get him next week. We will take advantage of keeping him there a few more days or so.

Thank you for the links. I am a passionate researcher. I added the extra information to my file. When my mom got sick I immediately researched Medicaid and medicaid laws protecting Dad's rights being at home (prior to the POA) :-) Yes, you're right, they have done very well with retirement funds. Now that dad will be back home, I'll go back to the original application I started for Medicaid. However....

I'm going to call a lawyer. My therapist gave me a very good reference for one. I will be unable to keep the title of fiduciary for them. I don't want to be held responsible. So many laws. VA seems to be fair for the spouse who is still home. We have some time left for mom's spend down. I figure I should have hired a lawyer before now. When dad got sick, everything got ridiculously stressful. Just getting through each day was my goal.

Is HE a disease in and of itself? Or it is part of ESLD?

If Mom were to get to where she can walk with a special boot made for drop foot, but always have CHF and Multiple Organ Failure, would the nursing home let her go home? It seems a long way down the road for her to be able to take care of herself as dad certainly cannot. I have a call in to the nursing director, whom I've gotten to know well.

When mom first got to the nursing home and had our first care plan meeting, the nursing director and case worker said she would never go home. She thinks she's going home when she's able to "walk". I understand that it's common with nursing home patients to think someone is coming to pick them up.

I'll learn every perspective I can. Ill take any information on these subjects that anyone has to offer.

Thank you once again for your help. It's nice to talk to someone who also has parents too far away to care for them. Did they make their own decisions for care or did you have to plan it out? I'll understand if you don't want to talk about it.

BIG HUGS
Posted 1/9/2015 8:00 PM (GMT 0)
Hepatic encephalopathy is a "complication" of end stage liver disease, 2. Complications of ESLD, are things such as ascites, variceal hemorrhage, hepatic encephalopathy, hepatocellular carcinoma, and renal impairment.

I will again mention our conversation here is more the caregiver side of a disease, but we shall continue here for now.


Is your Mother of sound mind and stable, other than foot drop. Why was she placed in nursing home care and how did that happen? Can she rehab and go home in my opinion? Maybe.

I am not any sort of expert nor am I a doctor... but I know the ESLD part can be cared for at home with oversight. Many here do it. Many have lived at home up to transplant or death. Most, probably. I don't know your Mom's situation, nor what her doctor has in mind with her rehab. Find out. Peace of mind is valuable.

I understand why you can not do the primary caregiving role. It is wise to admit what you can do. I get the crisis situation. I really do.

I am already a caregiver spouse, and my husband is of sound mind. Yep, the HE is awful at times. HE is episodic and scary when not controlled. Themister would have a hard time living alone because the HE has been erratic since his TIPS (a shunt). Could he live alone? Possibly?? Since he is on the transplant list, he needs a lot of care and medical interventions to keep him alive. We think this life is worth the end goal, he qualifies now, and he wants to give it a shot.

I can not be a caregiver for two other adults in another state if that becomes necessary ... even on a part time basis. I am enough of a pragmatist to know that. ESLD is not for sissy's. It takes all of him, and all of me.

about our Moms. Both our Moms are very strong, independent women. They were both career women who are capable and determined. Our Mom's planned for our Dad's, who are now deceased. Both Mom's were caregivers for years. Alzheimer's. The two Mom's continue to be of sound mind and have made their own choices up to this point. I respect that. Everyone gets old. Every body can get sick. Both live alone (not in assisted living). Of course, there are other children (our siblings)who live nearby and daily check by email or phone. The sib's are asked for help on a regular basis. They are closer to 90 than 80 :) Hang in there, deep breaths. Big Hugs
Posted 1/9/2015 8:18 PM (GMT 0)
    i have been a caretaker for a 1 1/2 years.  reading your story, and the input from the others doing the same, has opened my eyes to the world of chronic disease.  with a special appreciation for those dealing with end stage status. my frustration with the medical system, has left me feeling negative towards most of our providers, and ultimately the insurance cos.

our doctors have transitioned from GODS to "junior executives". 

     my wife got me started, with caring for abused children, and drug addicted new borns.  and then we started our family. the chronic disease syndrome started with me, and a ms dx just after we married in 91. two years later the dx of HEP C.

    now the frustration sets in.dealing with 2 small children and a chronic progressive ms and liver disease patient. we separated, but stayed together.

    my wife was dxed with endometrial cancer in 2012. a recurrence in 2013, resulted in radiation tx.  she was never able to eat again.  but she  had that ever ready battery also.

    my 3 children and i have been released from this assault on our family.  on new years eve, she passed.

barry

please forgive me for posting here. this is for all, but especially for all you angels that find helping, the only way to go.

    

Posted 1/9/2015 8:42 PM (GMT 0)
Barry, I am so sorry. No forgiveness needed for posting. We are here for you. I did not know your wife died. I followed your /her/ story when you stepped back in to help care for her. Your children must be shattered, as well. Please know I hold you and your dear children in my heart today. Post where you need to, whenever you need/want to. We care. Biggest hugs, Barry.
Posted 1/9/2015 10:12 PM (GMT 0)
themiz,

My mom went through intubation, aspiration, extremely low bp in the ER. She let herself become severely malnourished, unable to walk, and extremely weak. 75% of her condition is due to alcohol. She was in ICU for 2.5 weeks.

Then Acute Care, skilled nursing. Edema in her feet, legs and arms set in during ICU stay. Edema in the feet has completely gone away. Her feet are stuck, unable to physically push/pull to normal stance or flatten in order to walk. She didn't progress enough in PT in skilled nursing to be released home. In addition, she has Alcohol Hepatitis, Congestive Heart Failure and Multiple organ failure. Of course, no one knows how long she has. She is still unable to walk good enough to go home. Although PT got her special boots that slant with her feet that she will wear for 2 hours after PT each day. Unfortunately, she is unable to perform the Activities of Daily Living by herself. She is not stable physically. She is in sound mind; however, I'm seeing a decline lately. She doesn't have the same strength she used to. The good thing...she doesn't get mad at me anymore. Until last week, she was bossing me around. Of course, we know that can change on a dime.

My Silver Lining ~ I'm getting the chance to get to know my parents sober. Something I thought would never happen.

BIG BIG HUGS
Posted 1/9/2015 10:33 PM (GMT 0)
ppm,

I am so sorry to hear what you and your family have gone through. My condolences for the loss of your wife.

I have a chronic disease. I never, ever thought I would be battling this vicious chronic fire in my leg. And I never though that both of my parents would get sick at the same time. I knew their organs would begin to fail. In fact they have a very long email from me stating as such. That was the only way I could release my inner feelings and frustration of the lifestyle they chose to live. They have lived in denial and alone.

You have earned a saved seat up above. You have done so much for others. I am impressed. Having said that, I'm so sorry about both of your diagnoses. Are you able to walk for exercise? I hope so. That way you can walk for me!

You don't get more than you can handle. There's a reason for it and neither of us may never know the reason, but that's okay.

Your children are growing up learning about love, caring, respect, and taking care of others. They know that's how all of us should live our lives. You will be so close to them.

With the dx of MS, I can only imagine your reaction. Yes, it does progress, yet it also allows you to learn what you can do and what you can't. Boundaries. Important to have. Stick to them no matter. I've lost some friends, or who I thought were friends, since I got sick. I used to worry over it. I don't anymore. I know now who my friends are.

I'm rambling. Sorry. Something tells me you will be okay. That ever ready battery...it's in you too.

Please keep me posted as days go by. I'm glad I joined this forum as it has helped me so much. I hope to stay with it and be a veteran member like you are.

HUGS
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