Advice for Family/Caregivers with ESLD

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thebbdiva
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 1/8/2011 2:21 AM (GMT -6)   
Hello Friends,
 
After 6 weeks in the hospital, we are making arrangements for my father to go home with Hospice. He's taking with him Hep C, Cihrosis, ESLD, Pulminary Hypertension... etc.
 
Unfortunately my Dad's liver has not only killed itself, but also killed his chance at a liver transplant by ravaging the heart. So, the next phase begins.
 
I'm so grateful for the folks on this thread and the support I have recieved. Now that I am temporarily relocating to be the primary caregiver for my father, I'm just hoping to get some helpful tips from others who care/cared for patients at the end stage...
 
Yes, moderators, I am scouring the existing caregiver threads... =) hugs
 
Were there any non-medicinal comfort treatments specific to liver failure symptoms/complications that resonated well with your loved one? Someone on another thread mentioned Vitamin D3 for muscle cramps?
 
Did you find massages or lotion/oil rubdowns helpful? Especially for his poor little club feet... They look like they will explode at any moment!
 
At what point did you/do you think you just let your loved one have all the comfort foods you know they love? My Dad's favorite food is spaghetti - with his homemade sauce - packed with sodium... I wouldn't want him to miss that meal!
 
Any links and/or cook books collected with easy low-sodium recipes?
 
Thanks so much for any replies to these questions or any different ideas on commonly seen problems/remedies.
 
Hugs to all in the new year....
 
Diva

arneeb
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Date Joined Nov 2009
Total Posts : 2314
   Posted 1/8/2011 2:42 AM (GMT -6)   
Bag balm for itching...we used vitamen d3 as you said for muscle cramping...mike has horrible feet spasms...I gave feet rubs and full body massages...remember meat is hard on the liver...kept the lights low.....sunlight bothered his eyes...and music calmed him...did many environmental things like that...warm bathes......took him for drives just to get him in different environment......kept the focus off his doctor and treatment as much as possible....encouraged him to be independent in all things that he could....just a fee thoughts ..sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/8/2011 3:01 AM (GMT -6)   
My advice is just love him touch him and let him eat what ever he wants.... let him do as much as his health allows. Weather permiting bundle him up and let him be outdoors in the fresh air and revel in nature, if he has a favorite book read it to him.... talk about the good things you did with him. Dont allow anyone to discuss his condition where he can hear it, dont ash how he is feeling cause he feels lousy just tell him u love him and just talk about anything........
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.

thebbdiva
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 1/8/2011 3:36 AM (GMT -6)   
I'm really torn on the food topic... With a MELD score floating between 12 - 18... His Liver has some fight in it. A part of me wants to let him do and eat whatever he wants... and another part wants to be very conscious of the sodium and protein intake to keep his HE and Liver as in control as possible.

I guess it's not about ME though, eh?

**David**
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Date Joined Nov 2009
Total Posts : 3350
   Posted 1/8/2011 10:51 AM (GMT -6)   
From what you're saying, your father's condition is terminal. If so, let him eat whatever he wants to. You might be able to prolong his life a few more weeks or months by feeding him healthy meals. But then, he'd be missing one of life's great pleasures, food that he loves. In a situation like this, quality over quantity would be my choice. Probably his, too.
"No good deed goes unpunished."

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/8/2011 1:13 PM (GMT -6)   
(((Diva))), What a wonderful daughter. Does he realize what his prognosis is? If so and he can communicate his wishes to you ........ask him. It a hard conversation to have with your father but it should be up to him. Possibly longer life or good food? If he can not tell you his wishes.......you know him best.

But definitely, Sue gave some very good advice.

Lot's of thoughts and prayers.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2011 2:57 PM (GMT -6)   

Diva, I'm very sorry that your dad's condition is terminal.  You mentioned that his feet look like they're "about to explode."  I assume this is edema.  Take some lotion or bath oil and apply pressure down and then up from his toes up to his knees.  This was explained to me by a nurse.  This needs to be done very gradually.  If he says it hurts, then lessen the amount of pressure.  You should actually be able to see the fluid moving up out of his feet and up through his calves.  I had a terrible problem with lower extremity edema for months...and I would grab anyone available to do this for me, as it would relieve the pressure and pain momentarily...and also helped relieve the dry skin.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2314
   Posted 1/8/2011 8:15 PM (GMT -6)   
Mike used those Ted socks... which helped with fluid retention...special socks... Mike ate whatever he desired... most of the time... followed the right diet... but whenever he got a craving... I agree with David... I just let him go for it...in the end he lived on Malts... Chocolate of course... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2011 8:30 PM (GMT -6)   

Yes, I also used TEDS (thromboembolitic deterrent stockings.)  They are very difficult to get on, though, and I had a hard time doing it myself.  However, they do help reduce edema.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3350
   Posted 1/8/2011 9:19 PM (GMT -6)   
Keeping your feet elevated is another way to reduce the swelling. I had a couple of firm pillows at the foot of my bed and kept my feet up as much of the day as possible. I got so accustomed to it, that eventually I slept with my feet up. My problem was when I got up and went to work. It got to the point where my feet were normal upon waking, but within 10 minutes they were so swollen I had to wear Crocs. My shoes didn't fit.
"No good deed goes unpunished."

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2314
   Posted 1/9/2011 12:27 AM (GMT -6)   
a recliner helps
There is no pit so deep that He is not deeper still... Corrie Ten Boom

thebbdiva
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 1/9/2011 3:16 AM (GMT -6)   

As usual from this group, GREAT feedback and advice. You all make me feel all warm and fuzzy - I hope I can do the same for others.

PG, My Dad does know his prognosis. We talked about his DNR status during a time of clarity and he just wants to go home and get out of the hospital where he is woken up every hour! The conversation about going home with hospice with the doctor and social worker was oddly positive. It's the same plan we had before "hospice" came in to the picture... get him home and take it day by day.

I'm seeing more and more signs that we are doing the right thing. A local friend of the family who was on hospice (we live in a rural area) with a couple 24x7 caregivers passed away yesterday and with that, we have local caregivers that we know and trust that are available immediately. I'm so stressed about living two states away, being my Dad's only family, having a full time job, and my dad living alone... but I'm seeing things come together to help me be here as my home base, but have the support I need to take care of him, but keep my life afloat at the same time. sigh of relief... but I digress...

I love the idea of the Bag Balm and Vitamin D3... and the massage technique. I think that will definitely help his edema in addition to the elevation he is already doing. I've been giving him some back massages/scratches while he is in the hospital and he purrs like a kitten... I just want to cuddle him and laugh with him and feed him all the yummy food he wants. But will be ensuring his day to day meals are low sodium and manage protein intake. I don't want him confused all the time!

Does anyone know if Medicare/Hospice allows for Lactalose, Xifaxin as part of the comfort care? We just were referred to Hospice Friday afternoon, so I haven't been able to get all the info as of yet.

Hugs to all...

Diva


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2314
   Posted 1/9/2011 11:30 AM (GMT -6)   
I don't have an snwer to your question on the Lactalose,Xifaxin... sounds like you have a plan in place that is workable....Mike was home four months with my care before he passed... he refused hospice care...although he was independent in many things...we spent many hours watching tv when he was awake... talking... laughing... crying... and saying good bye...having me there seemed to ease his fears .... and I tried not to overwhelm him with my feelings... I figured I'd have time later for that...we kept a pretty calm atmosphere... and I really stressed positiveness... and we never talked about giving in... just taking one day one moment at a time..it seemed to help...Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/9/2011 10:57 PM (GMT -6)   
Diva, yes he can have his meds.... the purpose is to maintain dignity and comfort. ex: if you have cancer and hospice is involved you cant have chemo or radiation, liver issues you cant be actively pursuing a transplant, but you can have all meds to keep you comfortable. If he refuses meds it will not be forced on him like a hospital setting..... hang in there!
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.

thebbdiva
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 1/14/2011 7:35 PM (GMT -6)   
Friends,

My Dad was home for two days... My mom (his ex-wife) came, my boyfriend came, and we had a caregiver here. He had a hot shower (his goal for 6 weeks), a bag balm leg massage, and many good laughs and fun. And he smoked his ciggys and all the sherbert he wanted!

Today he woke up in HE Stage 3. We prayed over him and his physical agitation/flaying subsided and he slipped into a coma state around 9:30am. At 1:00pm, after hearing the Eagles and hearing how much we loved him and it was okay to let go, he passed. We were all right with him, touching him and talking to him during his last breaths.

He told me last night how happy he was. I know he was waiting to come homeand have all of us there. He died happy and didn't suffer.

Thank you for all your support. Words can't explain. I luv you guys.

Loki (aka Diva)

One_of_8
New Member


Date Joined Dec 2010
Total Posts : 10
   Posted 1/14/2011 7:47 PM (GMT -6)   
So sorry for your loss Diva. I just went through this two weeks ago tomorrow with my own mother. It's so hard on somedays to realize that she is gone. You can find comfort in the fact that you have done everything that you could do for him. It's never easy to say goodbye and I hope you find peace soon. Sounds like he went knowing that he was so loved. That's all we can wish for, besides them not being in pain.  

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2314
   Posted 1/14/2011 9:05 PM (GMT -6)   
What an empowering experience...gotta love that bag balm...very sorry for your loss...Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1720
   Posted 1/14/2011 9:51 PM (GMT -6)   
Diva-I am so sorry for your loss. My thoughts and prayers are with you and your family.

Emma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/14/2011 10:25 PM (GMT -6)   

Loki, I'm so glad he was able to go home and be with you all, and pass on peacefully. 

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3350
   Posted 1/15/2011 9:42 AM (GMT -6)   
I'm happy to hear that your father was able to go home and pass away on his own terms. Be well.
"No good deed goes unpunished."

hanakotoba
Regular Member


Date Joined Jan 2011
Total Posts : 41
   Posted 1/22/2011 9:45 PM (GMT -6)   
Loki, I am very sorry to hear of your dad's passing. Your description of his final days is bittersweet. Warm thoughts and prayers to you and your family during the processing of this loss. hana

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/22/2011 10:03 PM (GMT -6)   
(((Loki))), I don't know how I missed this post. I too am sorry to hear of your dear father's passing. It kind of sounded like my husbands passing also. Wouldn't have done it any other way.........if down the line you find yourself not dealing with his death as well has you wanted to or expected to.......Hospice usually has bereavement classes....they helped me tremendously.

Lot's of thoughts and prayers.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.
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