What my dads last months were like with ESLD (part 1 June-July)

[Lperica10]

I wanted to share what my dads decline was like in the end of ESLD. I will start with a little background: he was 63, lived alone, drank heavily for over 15 years, had many drinking related health issues/hospital stays over the years-many of which they would detox him or in his words "fix" him (give him fluids/electrolytes ,etc) then send him back home and he would drink again sometimes within weeks maybe even go as long as a month sometimes. In June 2012 he was in a coma for weeks because a neighbor found him outside unconscious for hours without oxygen to his brain and he aspirated. He came out of that one and drank again. They told him then if he continued to drink he wouldn't live a year- fast forward 4 years and he was still here. Lastly I wanted to add all the car accidents, times in court, DUIs, house arrests, overnights in jail, mandated AA meetings, neighbors finding him, local bars calling, I could go on.

Ok now June 2016... (sober since June 1) he calls me and says his legs are filling up with fluid and seeping so we go to his regular doctor. He also complains of weakness, tiredness, can not sleep, and forgetfulness. (He would one simple task and then have to take a break). I sit in with him on the appointment and the doctor says based on everything his liver is no longer functioning or is functioning at a very low percentage. My dad didn't believe him. The doctor scheduled regular paracentesis (he's had them in the past, just never on a regular schedule) and scheduled him with his regular liver doctor and now referred him to a kidney doctor. At this point my dad looked so ill-full of fluid but loss of muscle, difficult walking, couldn't open things, loss of fine motor skills, couldn't lift things, crazy mood swings, and irritability. A few weeks went by of me doing everything from grocery shopping- at this point he wanted to still try to come, to transportation, manage his house, bills, appointments, pharmacy and meds, laundry, housekeeping, the list goes on... I get a phone call from him early to mid July saying he has to go to the hospital, I get to his house (dizzy, light headed, so weak) he argues with me about calling an ambulance and gets in my car. I drove him pulling over along with way so he could throw up. We get there his potassium was dangerously high and he gets admitted for a week. They talk about what he should eat and what kind of diet he should be on and that now his kidneys are working overtime because his liver isn't working. He gets mad at the staff bc they can't "fix him" this time and goes home. Lasts about a week or two at home .. at this point the HE was getting worse and he could no longer be independent which made him very angry (actually he couldn't be independent for a while now and it came out to us that doctors in May said he needs to consider assisted living). This whole time my sisters and I and health professionals tried to talk him into not living alone he refused and yelled at everyone . So then I get a call from him saying he needs to go to the hospital.. I get to his house and he was crawling to the door he could barely make it. Against his wishes (he wanted to get in my car again) I called an ambulance. He had dangerously low blood pressure...

ok this is getting long so I'm going to do a part 2 later today.

[tillycindy]

Wow, are you o.k sweet?.

[Lperica10 in reply to tillycindy]

Yes I left off there and will write the rest later or tomorrow thanks for checking

[Millie09]

This is such a sad story of the battle your dad has with drinking and the fight you have with your dad .brings back so many memories in some way . Only I resemble your dads ways as my own , and my dad God bless him who is no longer here caring for me .my heart goes out to you , as you see I am still awake even now at 2.30 am .. Sending (( hugs )) ... Continue when you are ready . I am drinking still but 2 units a day .i have a psychological addiction , hoping therapy can help ❤️

[tillycindy in reply to Millie09]

Millie, just a quickie as I,m gatecrashing L,pericas post but it may help. If you haven,t already go down to American pickles update, click on kims face and read her posts especially the one about pickles never being cucumbers again. Best wishes. anne x

[Millie09 in reply to tillycindy]

Thank you tillycidy I really need some guidance or something to help me cope . I do not tell my family as I do not want to burden them . Much appreciated . Thank you . Best wishes ..linda X

[tillycindy in reply to Millie09]

You are most welcome linda, If you are interested A.A and others have support groups online , it,s not my cup of tea I must admit but ought to mention it lest I get shot!. Whatever works for folk that,s my opinion. Hope you,re looking after yourself. anne.

[Millie09 in reply to tillycindy]

Thank you Anne , I did not know that AA had support groups on line ? I will have to search for that and see what happens 😊. Was not keen on the face to face groups due to my anxiety but it's wort trying . Yes I am on a low salt diet , I eat healthy fresh foods and try to steer away from all processed food . Almond milk I love ! And I am also taking milk thistle in powder form . Two teaspoons a day on cereal or on yogurt etc . Hope you are keeping well yourself .. Thank you for your advice . Linda X

[Lperica10]

Okay continuing where I left off... so now this particular hospital stay he gets the whole "end stage liver disease" talk, (as well as the family too) the "you are not going to get better you will decline from here and we know that for certain but we do not know how quickly you will decline but at this time hospice is recommended" palliative care team was involved we had more than one meeting he would not agree to anything sometimes he would ask us to leave the room...they told him he is not a candidate for a transplant and he is too ill for dialysis. This was the first time in a long time I saw my dad cry- he said to me "they said I'm going to die". He decided if there was nothing they could do he would go home. No amount of convincing from anyone could make this stubborn man agree that he couldn't live alone. He couldn't manage taking his pills let alone bathrooming and laundry. (At this point they had nothing they were treating him for so he would have been discharged anyway.) Also forgot to add in my earlier post that these months he had home health care nurses seeing him. Some of which he would let in the house if he felt like it or sometimes he wouldn't answer to set up the appointment which that was always a problem too. So he went home from the hospital and 2 days later I was going to his house to help him and I heard yelling from inside his home when I went to enter. He was lying on the basement floor he had fell and broke his ribs. So back to hospital. He stayed about 5 days or so and they told him he had to go to physical rehab. So then he went there and was ok for about a week and then got really anxious and all he wanted to be was at home. So he discharged himself against the doctors orders. So back home again... id say for a little over a week when I get a call from him saying I need to take him to the hospital. I go to his house and see a lot of "bathroom accidents" (this happened a lot of the last few mos I just wanted to spare you the details) but he couldn't make it to his bathroom as it was on the second floor. He was short of breath, horrible stomach pains, and could not stop going to the bathroom/having accidents. I called an ambulance- at this point they know us by name- I'm not saying that to be funny I'm saying that being serious. So he tells the ambulance to take him to a DIFFERENT HOSPITAL than his normal (where his team of doctors is) bc he wants a second opinion!

Okay I will continue the next part in the morning.

[soooze50 in reply to Lperica10]

I have only clicked on 'Like' because I appreciate how heavy duty this story is for you, but this is also a generous act on your part allowing others to learn/be prepared/be real..thankyou again

[briccolone in reply to Lperica10]

I like the second opinion part ....😐 I'm not smiling really but very sympathetic..stay with us!

[SarahP63]

Goodness. I am speechless. It sounds as though your life has been put on hold for so long but, I guess, that's what we do when we love someone. What an incredibly strong person you are. Hope you are getting support from somewhere too xxx

[PCBnPBC]

I hope relaying this "difficult" to speak about story helps you in a cathartic way, you have been through the mill (a number of times) and yet you seem to have managed to come out standing (note I did not say in one piece) .... i want to hear more, please share.

In a much less aweful way, I experienced H.E. and I am a very keen supporter of people sharing HE stories, for as you know H.E. can and does turn a reasonable person into a monster. I was reasonable, I had PBC, but as my H.E. kicked in I was horrible, I could sense and sort of understand I was being horrid, but I could not stop myself......I had no sense of inhibition, and I hear others say the same, so I presume your poor dad was in a similar but far more complicated position, if it helps, I suspect he was not suffering that much, his image of self (if like many HE sufferers explain) was well reduced, taken by the confusion of H>E. and it is sadly those left to cope who take the pain and suffering. you sound like a strong and caring person, be strong, be brave and carry on !! (as I am sure from your handling of this sage demonstrates you are) wishing you well.

[Lperica10]

PART 3 Ok so on to his second opinion... when we got to the ER (new hospital) he was in such a HE rage I could barely even talk with him or answer the doctors questions it got so bad, he was so mean, and I couldn't mentally or emotionally take anymore at that point I had to leave. The doctors could see how burnt out I was and they actually encouraged me to leave and told me they'd call in a day or so. They told me to take care of myself. I gave it a few days (which after being with someone daily felt like I hadn't talked to him in a really long time). I went to see him and we picked right back up where we left off (this has happened a lot he doesn't even remember and I don't have the energy to bring it up). He had 2 severe infections. One was C diff and another was in his shoulder/arm which he had been complaining about for weeks. They did an I & D on his shoulder and put him on antibiotics. They did a million tests (because this is the "new" hospital.) And told him the same results the other hospital did. ESLD/not a candidate for a transplant, etc. They explained it to me (everything I heard 2 months ago and they thought I was hearing it for the first time). His kidneys at this point were failing and he was producing little to no urine. Then they offered him dialysis... the last hospital said he was too ill for it but this hospital said they could try it. He said well what's the alternative? And the doctor said death. So my dad said well I guess I'll try it. (Keep in mind he is getting more and more confused-calling me and my sister at all hours not knowing what he is taking about, not knowing night from day, just a lot of it didn't make sense, even demanding nurses to call me at my job for little questions about medicine such as a vitamin or something that he took for years by just didn't know. I was getting so many phone calls/messages it was so hard. Also wanted to add the emotions he was feeling-he would cry, then he'd be joking around, then he'd be swearing at people, then he'd say he was lonely- he was all over the place. So dialysis started even though they told him there could be a lot of complications/risks. He said he wanted to try it. So he did it for a week and had problems already, they couldn't get him to stop bleeding once and had to give him blood, he was tired, his blood pressure was low. I wanted to add he WAS evaluated by a psychiatrist at the old hospital in early August and was deemed just fine. And here he was in mid September and deemed just fine again. (Makes me wonder what these tests are like or if they caught him on a good day bc the confusion came and went. Next was to find a place to live when he was discharged. We had to tell him temporary or short term or he would NEVER have gone. The social worker found a rehabilition center that he could receive his antibiotics at and they would transport him to dialysis. So after a 28 day stay in the hospital I went and helped him move to this place. This was Sunday October 2. Alright I'll continue the rest later.

[tillycindy]

I hope getting this out is helping sweets. I know sharing your story has been triggering things for other people on this site, you are helping in ways you maybe don,t realise. Thanks. Please make sure you are caring for yourself. Yours, anne x x

[Hidden]

Sending you loads of hugssss, you are very brave sharing your dads story , its not easy doing it but you chose to do this to help people and you are helping more people than you think you are , im one of them thats for sure, i have been to hubbys dr to ask what to expect in the last weeks/days. and although they have known hubby since he was born and they are professionals, most have never experienced what the person is going through and the different stages, but you have, so thankyou for your honesty and sharing,

Take care

Lyn.

[Lperica10]

Ok on to the next part..... So I got him settled in to nursing/rehabilition center on Sunday oct 2 ...his new dialysis schedule would be mon, wed, & fri. He calls me Monday and leaves a message, it was confusing and he sounded confused, not making much sense. I called him back and he said he was at dialysis, we talked for a little and he said that he wants to meet with my husband and I as soon as we can get there. I said okay I will talk with my husband and see with both of our work schedules when we can. He calls me Tuesday telling me to call a lawyer he made a "draft of a will" 2 years ago and for me to schedule an appt to finalize it. (I did and the appt was set for oct 15, the lawyer was going to travel to him). I'm getting scared at this point. Everything this week was very "urgent" in his voice. But then again at times when confusion set in this HAS happened before. Like people have to get there "right now" or he needs this "right away". So I don't know... Wednesday he asks when we can come I said Thursday evening after work we will be there. I asked him what is this about why does he need both my husband and I and he said he'd rather just talk in person. (The reason I asked is because he hadn't seen or spoke to my husband since 2012 at our wedding). So I didn't know why he wanted him. So Thursday comes and he leaves another urgent message while I'm at work saying please come tonight both of u. I get there first and visit with him, my dads brother and his wife were just finishing up their visit when I got there. My dad did mention being a little dizzy and the nurse mentioned it being low blood pressure but low blood pressure was also his baseline at this point it was always low. Also symptoms happened so much you learn not to make a big deal every single time something is off because he's been off for 6 months. His stomach also looked bigger but I didn't mention it because once again all these symptoms come and go and have become his "norm"... so my husband gets there and after a little talking we go for a walk (wheelchair walk) and he sits us down and asked if I could take a leave of absence from work to care for him. (This was something I was already considering and inquired about with HUMAN RESOURCES because it already consumed so much of my work day and then after work. Phone calls meeting decisions etc etc. I was exhausted doing both) We told him we would have to think about it and discuss it together and would let him know. He said okay. This night I noticed his was also more jaundice than usual-his skin and the whites of his eyes. We visited a little longer and walked him back to his room. Said I love you and bye. (Last words we said). I will continue later with the final days.... 😪 I should add thurs night he was NOT confused.