Elderly father suffering from encephalopathy due to toxins buildup

[austinsoul2011]

I've previously written about my elderly father and his difficulties with dialysis treatment (1 month in-clinic HD, 6 months PD) and really appreciate all the wonderful support so many have provided here.  Right now though, my father's taken a turn for the worst and the prognosis is looking very dim.  Over a month ago, my father was doing okay with PD -- averaging a Kt/V of 2.1 with some residual kidney function.  But because he was depressed, he was prescribed LexaPro, an anti-depressant which takes approx 1 month to build up and "level off" to provide maximum benefit.  My dad actually improved in the first week of treatment; he was happier and somewhat more optimistic about things.  But that changed by the third week, and after the fourth week he became delirious and confused, culminating in a final night at home where he was having conversations with past acquaintances in a foreign country without realizing he was here in his house in the US.  The next morning he had fallen off the couch and refused to move, confused and dazed, not understanding where he was.  Was it the medication that caused this, or the combination of the 4-6 daily medications he took?  Could it have been the building toxicity in his system due to poor dialysis, or the constant lymphedema in his leg?  Perhaps it was a "perfect storm" of all of those combined conditions?

We called 911 and he was admitted to the ER (and subsequently admitted to the nephrology unit).  He was incoherent, dazed, had slurred speech, fiercely uncooperative and extremely weak.  All kinds of tests (CT, CAT, MRI, EKG, XRays, spinal fluid analysis) were run on him and they all ruled out possible stroke, heart attack, or infection.  There was just no observable disorder that could be found.  That led to the only other possible explanation, given my father's medical history and current diminished renal function -- encephalopathy.

It was my father's long-time nephrologist who first gave us the comprehensive diagnosis of dementia and encephalopathy.  He told us that he's handled thousands of cases such as these and the end result is almost always the same -- increased dementia and the brain's diminishing ability to support the rest of his body.   Encephalopathy is a rather umbrella term for degeneration of the brain, and there's a number of different causative factors, such as a dysfunctional liver (hepatic-- leading to ammonia buildup), kidneys (renal-- aluminum excess, uremia), or a combination of both liver and kidney failure leading to metabolic encephalopathy (toxin buildup).

The exact type of encephalopathy isn't really known, but the most common opinion is that those 8 months of dialysis might have not been sufficient to remove the toxins that have been developing over all that time ever since he was diagnosed with ESRD.  Perhaps all the scar tissue that developed from previous surgeries rendered my father's peritoneum less efficient, or that he just didn't respond very well to any of the dialysis options.  And he never looked at the PD treatments in a positive way, and was miserable from the start as I hooked him up each night.  He kept calling dialysis a "death sentence."  In some ways he probably was getting progressively more depressed and feeling hopeless, and I (in my own tunnel-vision focus while preparing his treatments) didn't see it happening.

Anyways, flash forward to the present, which is now over  2 weeks since he was first admitted.  He's at a second hospital now and the resident internist removed most of the daily medications he was using.  He's shown some progress as he is no longer as delirious as previously; he can speak clearly, hold discussions now and is a bit more focused, but he's still a bit confused and rambles on about odd, unrelated things.  He has almost no appetite now and it's a difficult task to have him eat even the smallest bits of food.  We still have him on PD, but we now feel it might not be sufficient to remove the poisons in his blood and might have to switch him to HD if possible (which he hates).

But the biggest concern right now is that we've been told by a number of specialists that this kind of metabolic encephalopathy (toxicity buildup) has already done irreversible damage to his mind and that he'll only continue to decline further.  We've been informed by some people that we should consider making arrangements for what appears to be an inevitable result -- brain failure due to toxin buildup.  The consensus medical opinion is that he will continue to decline further and that all we can really do for him is make him as comfortable as possible. 

And so my familiy continues to pray for the best but prepare ourselves for the worst.  I sometimes think it's a blessing that he remains in a somewhat unknowing, delirious state so that he's not acutely aware of how his body continues to fail him.  Each morning I visit with him in the hospital, he greets me with a "hey, grab my jacket and let's get outta here" statement and thinks that his current weakness is only a temporary thing.  My mothers smiles at him and tells him to be patient, and to let the kind and supportive medical staff help him build his strength.  And even as I see his body start to slowly improve, it's heart-breaking to see how his mind remains confused and tired -- as if it cannot make any sense of what he sees and feels. 

Anyways, I didn't mean to go on and on with this, and I do apologize if I've put a small damper on what might have been an otherwise good day for you.  I just felt the need to share and wish the very best for all of you as you deal with this cruel and difficult disease.  Much love, and may God bless you all and keep you as healthy as possible.

[okarol]

I know this must be very difficult on your family and I hope your dad improves.
It sounds to me as if his body and mind are getting to the point where sustaining life would be tough for him.
If that sounds blunt, please forgive me.
It's so hard to step back from the caregiving and support mode to looking at our loved ones as individuals.
My mom is getting to a similar place. She's not on dialysis but has some dementia and depression. She has lymphoma and has had lung surgery.
The quality of life for her has been slipping away for some time.
We hope to keep her home as long as possible, because that's really where she wants to be.
I would want the same, if it might be my last days.
I'd grab his jacket and head home.
 

[amanda100wilson]

I am sorry to hear about this.  dialysing a patient who has mental deterioration is not easy, since it requires them to sit still.  is your dad coherent enough to make the decision over his life or do you need to get power of attorney?  the reason that I ask this is because I wonder if you have asked your dad straight out if he wants to continue dialysis or withdraw treatment, or is this a decision that you need to make?  maybe the to e has come to withdraw treatment, keep him comfortable and let him pass?  Hard choices, I know and probably something best discussed in conjunction with him and his doctor.   

[MightyMike]

I'm sorry to hear that.  I hope the doctors are wrong and with more adequate dialysis thing improve at least a little.  Best wishes to you and your family.

[texasstyle]

My hugs are wrapped around you very tightly. Years ago, my husband took so much cold over the counter meds and was talking to his dead family. It was horrible. Although your situtaion may be different I know how heartbreaking that is. Illness effects the whole family and we FEEL your feelings with you. Thanks for sharing. Sometimes people share thier stories not realizinghow many people it may have helped, or even comforted it in their own time of need.

[Annig83]

My thoughts are with you and your family.  I know I've talked to you multiple times about your father, and I only hope that you continue to use this site for support during this difficult time.  My grandmother was very similiar in declining brain function, and it is very difficult to deal with, but, the best thing to do, is continue to provide your dad with support and love.  Much love and peace to you all.

[MooseMom]

Austinsoul, I watched a PBS documentary last night called "Money and Medicine" which was supposed to focus on what why US health care costs are so high and getting higher.  It actually turned out to be more of a discussion about the American culture of medicine; we all seem to have fallen into this mindset that everything that goes wrong with our bodies should be treated and that we all too often fail to consider the consequences of said treatment.

There was a young man whose elderly mother was very ill; he had decided that the doctors should do everything possible to keep his mother alive.  That was 10 months ago.  This poor woman had been in the hospital for 10 months with all sorts of medical interventions and machines keeping her alive, including a feeding tube and dialysis.  She had no quality of life at all, and it was impossible to tell whether or not she was suffering or was uncomfortable.  She was so swollen that she was almost unrecognizable.  She will never leave that hospital.  It just seemed so cruel, but who am I to judge?

Another elderly man was filmed as he discussed with his doctor and his wife how he wanted his life to end.  He had been given a fatal diagnosis (I didn't hear what it was), and he had decided that he did not want to end his life in an ER but, rather, he wanted to be at home and wanted to be made comfortable. 

I think that when given the choice, most people fear pain and just want to be saved from suffering.

So like others here have said, it might be time to start planning how to keep your father from suffering, especially if he gets to the point where he is unable to tell you how uncomfortable he may be.  I truly hope that soon he will be able to go home.  Hospitals are not always the best places for sick people.

Prayers to you and your family.

[austinsoul2011]

Friends,

Thank you all for the advice and words of comfort.  The hospital is telling us that they'll need to discharge my father very soon; he isn't responding well to any efforts of therapy and it's getting very frustrating and worrisome that he refuses to eat anything.  He's still delirious and a bit confused but he does recognize both myself and my mom.  All he talks about is going home, and I don't blame him, since the place feels so foreign to him.  We've tried so many times to encourage him to eat but he constantly refuses.  I even asked the floor nephrologist if we could force him to eat somehow, and was told we can't do that.  We could insert a feeding tube in him, but with all the other complications that are going on, what kind of quality of life would remain for my father?  There's just too much going on, and improved nutrition addresses only one of his many problems.  It's so frustrating.  Because he doesn't eat, he's suffering terrible chest and stomach pains (perhaps due to gas), and by taking his meds on an empty stomach, he suffers from other pains and side effects.

But the hardest fact is that we are losing this battle in eliminating all the toxins (urea and ammonia) constantly building up in my father due to his failing liver and kidneys.  His toxin levels just keep going up.  His mind really is slowly shutting off support to the rest of his body, which is why he never feels hungry.  Because of his age, I'm told that his condition is irreversible and permanent.  That he will continue to decline until complete failure, and how we need to prepare for what comes next.

I look at all these several boxes of PD supplies stocked up in the rooms of our home, and it hurts to think how my dad and I fought so hard for so many months to hold back the toxins that kept building up in his body -- yet still failed in the end.  How each time I hooked and unhooked him from each night's dialysis prep work, I believed we were getting great dialysis due to high Kt/V numbers (approx 3.75) and good weight management with healthy UFs.  And it still wasn't enough.  The last words of  the shift nephrologist haunt me a bit, as he said that even with good or great dialysis, some people "fail to thrive" like my father.  Sometimes dialysis just isn't enough.

I do of course still believe in dialysis, and since I suffer from severe PKD myself (and rising creatinine levels) due to genetic inheritance, I will do what I can to fight this same disease with HD or PD treatments when my time comes.  I will be prepared but I will pray that better, more effective options are developed soon for all of us to treat this terrible condition. 

There is one bright spot in all of this, however.  I can bring my dear father home now.  I can finally put his jacket on him at his request and wheel him out of the hospital, as we thank the good and kind staff who tried so hard to make him healthy again.   And once he's home I hope to resume my father's dialysis sessions, even knowing that it will not halt my father's continued and inevitable decline.  But every night I will pray that, in doing so, I can extend his stay with us for as long and as painlessly as I can.  My father deserves that.  My family deserves that.

My one remaining hope is that, before he passes, there might be some short moment when my father's dementia leaves him so that he can see how very much my family and I love him and will miss him.  Just to see that proud, gentle and generous man for one last time.  It's not very likely to happen, but it's the one thing in the world I would wish for if I could.

May God bless you all and keep you well.  Stay strong and stay proud for yourself and your loved ones.

Love,
Steve

[Annig83]

Steve- Would it be possible I wonder to take out old photo albums, or photos you have from happier times and look at them with your Dad?  Maybe, creating some happy and loving memories?  It would perhaps not only comfort your dad, but perhaps comfort you and your mom? 

[austinsoul2011]

Steve- Would it be possible I wonder to take out old photo albums, or photos you have from happier times and look at them with your Dad?  Maybe, creating some happy and loving memories?  It would perhaps not only comfort your dad, but perhaps comfort you and your mom? 

Thank you, Annie.  It's a wonderful idea and I agree, it would also benefit my mom and I.  We're setting up the TV room for my dad, which is his favorite room and where his hospital bed will be situated.  We're filling it with things -- mementos, photos, souvenirs -- to remind him of our shared moments together.  He might not recognize most of them due to his extreme confusion and dementia but we're hoping it will bring some comfort in some way.  Right now, I'm consolidating all of his remaining dialysis supplies and equipment into the room so I can begin the cycler setup, prep and hookup as soon as he's brought in.  My mom and I are trying to build a kind of nest around my dad, filled with good memories, fond sentiment and people who love him.  Friends and relatives will also have a chance to visit with him.  One of the hospital nurses told me that my dad's remaining time will consist of some good days but mostly bad days, so she insisted we celebrate the good days like crazy.   

And we'll do that.  It's what I would have wanted if I were in his situation.  I hope he sees it the same way, too.

Love,
Steve

[Leanne]

Hugs and prayers Steve for you and your family.  This must be very hard for you all but I truly admire how you are standing by him with total love and support.  He might be confused but I still think that will ease him and comfort him.  I pray you get your wish that you get to share some moments of clarity with your dear father.  Hugs to you all...

[MaryJoe]

Steve,  Your posts are always so full of the love you feel for your father. I am so sorry that his illness has brought you all to this place. I am sure the the nest of love and memories you and your mom are creating for him will comfort him and I hope it will ease some of the confusion and allow more moments of clarity for you to share. I wish I had some magic words of wisdom to comfort you and ease your pain...