Worried for my father

[Dadsdecision]

My father is 81 years old- my mom died 10 years ago and he has been living alone. 4 years ago he swelled up really bad and ended up in hospital. Has liver disease and kidney failure (was stage 4). He had really bad ascites and would get drained often in the beginning, then every year or more. He ended up back in emergency room because he swelled up so much with fluids-- a blisters the size of a tennis ball formed on his knee-- this was in November-- it busted and each day the edema got worse and his legs hurt terribly. In the hospital we also find out he has a weak heart, CHF too. The pumped him with so many diuretics and the fluids still didnt go down to much- there was fluid in his lung, they drained out a liter and a few liters out of his abdomen. He was in hospital 2 weeks and sent him home to live with me. Im 43 with 2 kids and a husband. All these blisters formed and popped on his legs and the skin tears were hurting him- the home health nurse was useless. Then my dad takes a nasty fall at his poker game in the mens room--I go pick him and bring him home but his legs are rubber and i cant get him on to a couch- he falls again- my husband and me try to pick him up and we see a giant hematoma on his head- anyway, Im sorry for rambling on like this-- he goes back to hospital- more fluid in lung-1.5 liters get drained out --this filled up in 3-4 weeks from last draining at hospital- he is also sounding confused and saying weird things- dr. said that happens with the toxins from kidneys not functioning good- So now he is in stage 5 renal failure- kidney dr. says he needs dialysis or he will be in hospital every 2 weeks- my dad says he doesnt want it and is scared- his creatinine is 3.8 and his bun is 140 i think?  Anyway, its been 6 days and he decides now that dialysis might be a good idea- we/he will try it once and if he hates it i guess its hospice time.
Today i helped him in the shower and get dressed and he could barely walk with his walker.. his legs were going to give out on him- i had to run a put a chair under his butt so he didnt fall- Anyway, Im just nervous with all his other issues that the dialysis might make him worse- or not help at all. Im hoping it can at least make him comfortable... this has been such a nightmare and life changing incidents...i dont know what to expect and really just venting on here! Im  sorry if I rambled on too long!

[Sluff]

Don't worry about venting or writing too long, that is the reason we are here. Sounds like your Dad has a lot going on, and he is lucky to have you and your family to help him through all this. I am no doctor but I think your dad obviously needs 24 hour care and maybe you are not able to provide the type of care he needs. I'm not talking hospice, I'm thinking constant monitoring and medicine changes as needed. He may or may not feel better with dialysis, but one thing is for sure that without it he may not be able to make his own decisions about what to do next. The heart will be under stress with dialysis, but again without it there is no other options except hospice. I'm sorry to say that but I feel it is the truth, but please know it is just my opinion, I have no medical certificate to give advice. If there are no option left you will know soon enough. You are in a tough spot and in my prayers.

[Dadsdecision]

Thanks Sluff--
I appreciate your reply.... Its just so horrible to see my dad whither away so quickly in a couple of months. He was doing so well. I worry about his thoughts and when we were in the hospital he was just getting bad news after bad news- he looked so sad and depressed. The hospital dr. was trying to get him to stay at a nursing facility rehab until he got better- but he absolutely did not want to go- he kept saying, "i feel stronger, I wont fall again, Ill be ok with my daughter, etc." Today when his legs started giving out on him I told him that this is why the dr. recommended the rehab. If he can't walk how can I help him? Anyway, thank you again

[aharris2]

Hi dd,

I am glad you and your dad are going to give dialysis a try. One session is a pretty limited sampling, I hope it goes well and gives your dad some relief. You are right, stage 5 renal failure is life changing.

You are worried that you won't be able to help your dad if he can't walk. A wheelchair would help if he's willing and your living arrangements will accommodate it. If your dad can walk a couple of steps for transferring it greatly simplifies wheelchair usage.

Best wishes to you, your dad and the rest of your family.

[Dadsdecision]

He is hallucinating so much-he nods off, has a dream, and thinks its real and starts either talking about it or acting it out-then he comes to. I woke up this morning to my husband saying, "help me get your dad off the floor" -- he keeps falling and looks like a mummy with so many bandages... this is such a nightmare

[greg10]

He is hallucinating so much-he nods off, has a dream, and thinks its real and starts either talking about it or acting it out-then he comes to. I woke up this morning to my husband saying, "help me get your dad off the floor" -- he keeps falling and looks like a mummy with so many bandages... this is such a nightmare

Hopefully his hallucinations would wear off soon.  There is a drug called Midazolam which is often used for reducing anxiety or producing drowsiness or anesthesia before certain medical procedures or surgery.  Many hospitals would use this drug without informing the patients and family of the consequences and at least prepare them for the possibility of hallucinations and dreams.

I hope your father and you the best.

[Sluff]

i think dialysis might clear his mind but 1 session wont be a cure all. It may be time he need s to understand the gravity of his illness. Dialysis can change the way he feels by cleaning the toxins out of his system. If he is not coherent enough you may need to get power of attorney over his health care. I don't envy the choices and the situation you are faced with but at least you are there for him and he will trust you over anyone else.

[Dadsdecision]

Thank you Sluff
He does not seem to be hallucinating anymore and I do have power of attorney. He has 3 other kids that live in different states- they only call once in a while (my 1/2 brothers and sister)... I am doing all the work... tomorrow we are going to the hospital- i called the dr and he said they would see what they can do... my dad is already more alert knowing something will done- wish us luck--

[aharris2]

Dialysis is usually started in the hospital. Is that the plan?

Regarding the other 3 kids... happily your dad has you. Based on your post, it seems that your husband is helping. Is it just here and there or is he your partner in this?

At times, caregiving can be difficult and scary. We are here to help you through it. I can certainly relate to the mummy look - there was a time when my brother needed very extensive wound care on his hands, legs, and feet (and as you said, the home health nurses were useless.)

But it is not always that way. There are good times when nothing is going wrong. Stepping up as you have, you will have the satisfaction of knowing that you did a good thing for your dad.

How old are your children?

[RichardMEL]

Hi DD,

I think the others have covered most of what I would write but I just wanted to put my two cents in to welcome you to the site, and understand some of the complex issues and feelings you (all) are dealing with at this time. It is very positive that your dad is willing to give it a go - i think that's all anyone could or should expect really. Specially with his age and his other issues not many would blame him for thinking it's all too hard. Having said that remember one treatment won't make a massive change and he really needs to give it at least a few weeks to a few months for him to stabalise to see the best sort of effect that dialysis will have on him (hopefully for the positive!).

I agree that as the toxins are removed this should clear his head and help his decision making and lucidity. As the fluid is taken down this should help with things like his balance, blood pressure, ability to function etc. Dialysis may not make him feel magical, but it should provide a stable platform of function for him to go on. Now at 81 he may not feel that is worth it - I am not certain - but that is an informed call you all need to make.

In the meantime getting some dialysis into your dad would be a great step and I hope it helps!

[Dadsdecision]

Thank you...

The plan is to go to the hospital and hopefully start the dialysis. Do you think that would help him with his strength? He can barely stand up since yesterday. My kids are 11 and 13. So far they seem to be fine with all this. My dad has a great sense of humor and he tried laughing at all this at times. I know it sounds ridiculous but it really helps us deal with this. In the beginning my husband seemed aggravated with my dad living here and the new change. I can understand but it did make me feel bad an apologize all the time. Now he is better and more understanding- and more accepting. He does help me with him. Anyway, I have to get ready and get my kids off to school and then come back here and decide what to do- we are definitely going to hospital, I just have to figure out how and when. Sooner the better. Thank you all for being here! It means so much...

[RichardMEL]

Re the strength I wonder if your dad has some bad amaenia that needs to be treated? That would affect his energy levels and ability to easily do stuff. I think this is an issue that needs to be taken up with  his neph/treatment team - this can be common with kidney failure. I definitely think, after a time, that doing dialysis should support your dad and make things easier for him in general. Getting rid of toxins and extra fluid should really help things in general.

Good luck - let us know!

[Dadsdecision]

Thank you... he is starting his dialysis this morning. I will be headed to hospital after I get the kids off to school. Im nervous but also kind of numb, I can't explain it. My nerves are probably just shot! Ill let you know how it goes and thanks again!

[AguynamedKim]

I hope all goes well.  Like everyone here says, please give it some time and continue your great support of your dad.  From what I've read, he should get to feeling better and address some of those symptoms.

[Sluff]

How did things go for your Dads first treatment? He may be tired out at first but give it a little time. Thinking of you both. 

[Dadsdecision]

His first treatment went fine- though still hallucinating all night long- dreaming he was falling-its like he was dreaming and acting them out at the same time until he came to... Yesterday was his 2nd treatment- went better- hallucinations much less and he actually slept when I was there- no fearful dreams of falling or talking to people who aren't there. He thought yesterday was his first treatment- yesterday he did say he was nauseous and thats about it. The vascular surgeon came in to look for a place on his arm to put the fistula (?) and he is all bruised up and cuts from falling and she couldnt find a place and said, "now what do we do" and my dad said, "well if you dont know then I dont know"... and thats the last I saw of her. Wonder how today will be... Im so tired. Thank you all for your support

[okarol]

He can use the chest catheter for dialysis for access now and worry about the fistula when he's more stable. Have you asked for a copy of his labs? That will give you some idea of what might be out of wack, like his hemoglobin or phosphorus or other levels. Here's a big hug for you. 

[RichardMEL]

DD I would be encouraged by his second treatment and the seeming lessening of his delusional/confused state - that would equate to a lowering of toxins in his system from being removed by dialysis - hopefully as regular treatments kick in he will reach a state where the level of toxins are low enough that their effects on his mind(and body) are less.

re the fistula, I should think the next step would be to do a vein mapping (I think with an ultrasound - I had one years ago and I think it's done with US) to determine what state the veins are in and the best spot to use. Specially if he's bruised etc from his fall maybe they want to hold off until that is healed up a bit - which would also make some sense.

Thanks for keeping us up to date.

[Sluff]

Things do seem like they are looking up. Hang in there.

[Dadsdecision]

He got the chest catheter yesterday- he was back in his room by 7pm. He was coherent and back to his normal self (personality wise)! I was so happy! When the dr. showed me his labs from 2 weeks ago being in the hospital- his createnine was high- his potassium was high- Bun I think was 140- very high-- and those were the only things I looked at-- or were shown to me I should say. All the nurses and workers at the hospital say he is their favorite patient and want to take him home with them-- he has a very good sense of humor- even when he was hallucinating
The sad thing about today is that when the discharge him he will be staying at a nursing facility until he can walk better. That part is breaking my heart and I have a lot of guilt. My dad doesnt care (so he says) because he still has a fear of falling and he knows he cant walk). He said it might be good for me to be around people that are like himself. But I told him its not forever and as soon as he is stronger he comes back to my house. I just hate that Im in this stage of life with my dad. I will be taking him to all his dialysis appointments and everything else. This is tough. But he is MUCH better after the 2nd treatment- I was so happy to see my dad last night back to his old self. Thanks again!

[AguynamedKim]

Dadsdecision, that is so great to hear that the dialysis looks to be working!  I can only imagine how great it is to have him back! 

You're a great supporter of your dad.  Keep educating yourself at this sight and being his advocate.  I think you're doing a great job.

[RichardMEL]

DD that is such a great report to read about your dad - I guess you can already see some benefits of dialysis.

About him going to the nursing home for rehab.. that is the best plae for him. They can look after him, and should anything happen he is in the best place to be helped should he need it. As you know it won't be for a long time and he will be in much better shape to return to your care.

Hang in there you're doing a great job!

[Dadsdecision]

Yesterday turned out to be a bad day. He started his dialysis and they had to stop it. His blood pressure went low and his heart rate went up. He said all these lights started flashing and sounds going off and people running to him and disconnecting stuff- So now he is moved back to the cardiovascular unit in the hospital where he first was about a month ago. He also now has mrsa. Where he had fallen his sore on his knee got infected I guess. I asked what I needed to do at home, with my family, with my dad, etc. The dr said just to wash my hands. He said I didnt need to wear a mask, only the nurses do so they dont give it to other patients. The heart dr and internist didnt seem to think it was a big deal but Im scared. Im just so exhausted. One thing after another. So today he had his dialysis and did fine- but they didnt remove any fluid- just cleansed the blood i guess? He had no appetite today and seemed depressed when I left- very down and also uncomfortable. So thats the latest... this is one exhausting experience!

[chook]

I feel for you, DD. I truly believe it is better to be the patient than the carer worrying and agonising over every little thing. So sad that the D session had to be postponed because of heart and BP problems. Hang in there. Post often and we'll support you any way we can. 

[boswife]

Well girl, i sure hope tonight and your future lookes brighter.  It is so exhausting, but hopfully, it will smooth out and you will have some good times together feeling better.  I thought it was 'it' for any good times but not so!!  I wish this for you as well.  You need rest for sure and its so hard to find right now but it is so important.  Bless you for doing what you do..