Dad is at end of life care. Issues with assisted living. How to move him around?

Up until about 18 months ago, Dad was doing well enough on PD but has gotten increasingly picky about food as bladder cancer got found and they came here to try and get better treatment. We've tried supplements, oh my have we. But he turns up his nose at so many of them. Yes, he was able to get a supplement that will pick up the 20% Medicare doesn't even tho I guess it is hard to find one that will take a dialysis patient. They even qualified to have the monthly premium for that supplement paid for for them.

With PD nutrition is always a problem due to the fluid inside the person's abdomen from the PD solution and always feeling full. If you don't already, offer him Ensure or glucerna (if he is diabetic) for protein. Also you can purchase Whey Protein and sprinkle it over his food; it's tasteless and provides a lot of protein. PD patients lose protein doing the exchanges. If his blood albumin level is low (protein) he may develop swelling in his extremities as the body needs the protein to pull fluid from "third spacing" (extracellular) back into the bloodstream.
Some NH provide PD but in my experience very few as it is a skill not many nurses know how to do and due to staff turnover it's just not doable to train new staff.
Hopefully you can find one. 
So glad he was ordered home care! This will be a great help to him & your family. Does your dad have a Medicare supplement to pick up the 20% Medicare doesn't cover? 
Good luck!

If PD dyalysis is where you fill up the adominal cavity with water and then flush a couple of hrs later...a friend's husband was in a nursing facility that did this.

Barb, that is interesting and hopeful news. It isn't that anyone is trying to get out of paying for care because I too don't agree with people keeping all their stuff but also getting help. But I know there are programs out there, or information out there, for certain situations.

Thank you so much for posting that! We just had home health come for their first visit and it was encouraging. Dad is always going to be delicate and unable to be 'fixed'. But feeling we have a bit of help is wonderful. We have OT, PT, Wound care and even someone to help give him some 'bird baths' lined up. And all paid for by Medicare or Dad would refuse it. lol Which I understand. He has been a wonderful citizen all his life and is one of the things I respect about him. :) Grateful for you guys here and my husband for telling me to start asking for social workers or advocates. Nobody seems to open with this information so we don't know what to ask.

Thank you again!

From the AARP website, with regard to liens placed on homes by Medicaid:

Hardship Waivers. Federal law requires states to waive recovery in situations where it would cause undue hardship for survivors. For example, most states grant hardship waivers if the estate is an income-producing asset, such as a working farm or ranch, in which case recovery would cause a loss of livelihood for the survivors.

With regard to Medicaid, i would look into Medicaid waiver programs in your state. These are programs that provide some home assistance but at least in my state do not require a lien against the home.

Traci, thanks for the update. I'm sorry to learn about the difficulties with a PC rep. If they were the ones who called EMS, they were doing what they should do.

BTW, some of those leads are defective. I raised the issue with our cardiologist years ago after reading about them and how they can fire w/o any underlying cardiac malfunction. They're so powerful they can cause a patient to literally jump out of a chair.

Your father wouldn't be the only one who's afraid of them. I learned some time ago about a neighbor's relative who experienced that kind of malfunction from a defective lead. He was terrified of being shocked again.

Finally, eventually the electrophysiologist who installed the pacemaker and defibrillator in my father's chest disconnected the lead so it couldn't misfire, but only after determining that it was no longer needed.

Sorry to learn that eating became difficult for your father. That's a tough issue.

As to the supplies, when my father came home in 2004 from a long illness and recovery, he was on strictly tube feeding. A supplier arrived the first day with either 10 or 12 cases of Nestle's Pro Balance. Each case had 2 dozen cans I believe.

I had to remove everything in the hall closet to store all those cases of liquid food!

Thank you for your support. They had a run in with Palliative Care last year after Dad had his pace maker fire on him in my living room and we called an ambulance. They diagnosed him at that time having Ventricular Tachycardia. He's been on meds every since and terrified of his pace maker. Although it did the job and saved his life. But anyway.... they had their first run in with Paliative Care reps and it was not a good one. They are so hostile to them now that even suggesting it could cause them both to breath fire on me and incinerate me! :) However, right before we left the hospital the other day someone from PC did come in and we were pretty clear we weren't open for communication yet but pain management was something we were open to. I will be continuing to see where we can go with that.

We did get a call today from home health and I was happy to hear that. They are trying to see if someone is available to come out in the morning and I'm hoping so.

Dad ate .... ok..... for breakfast and lunch (still not much overall) but tried to eat dinner and couldn't. I offered him some vegetable soup which he likes and after just checking on him found he was throwing it back up. :( I will certainly be recording that to tell to home health people.

The uncertainly is hard..... as I know everyone else has already found out.

Oh, Dad has been on PD dialysis for about 4 years now so it is nothing new for any of us and yes, the machine is portable. However, all the supplies..... aren't very portable. :) We have a 30 day supply in the house which is about 30 boxes at 28 pounds each. Plus all the tubing to move the fluids, sanitizing stuff, gauzes, tape, masks and some other stuff.

My apologies - I began responding before reading all of your last post and see that your father and mother can perform the dialysis. So that suggests it can be done at home.

And speaking to the issue of medications, they are NOT discontinued. Services have told me that (c) type services order and have meds delivered, or a PCP can be involved in ordering them.

One of the needs I have is monitoring for aspiration pneumonia. I want to catch it before it requires hospitalization. I was told by PC reps that a visiting nurse could monitor lung functions and through their own PC services could order antibiotics to address pneumonia before it required hospitalization. That works for me.

I haven't addressed any other issues; the complexities you raise are the kind I like to think about and respond to later.

Traci, I really can't offer much in the way of suggestions; this is a complex situation and I don't have any experience along this line, but I wanted to offer emotional support for you and your family as you face these very challenging issues. This must be so difficult for all of you as you search for solutions. I hope that you're able to find some peace in the forthcoming days.

The only thing I can suggest is Palliative Care, but I don't know if that includes the type of dialysis your father needs. He could stay at home and care would be provided for him.

I just did some quick checking and found photos of individuals allegedly getting this kind of dialysis in what appears to be a home setting. There's also a machine which apparently is a portable machine.

If these are options, I would ask the physician treating him for PD about them, including whether he could script and Medicare would pay for home PD. I've been told that Medicare pays for PC.

Then, this is what I'm thinking MIGHT be able to happen: one of his doctors, perhaps the one who scripted for dialysis, could also order Palliative Care, which as I understand it is maintenance and curative care but NOT hospice.

You and/or your family could research, interview and find a company that you want to manage the PC.

I've been searching for a PC agency for my father, and have learned that some companies/agencies

a) only offer limited phone consultation

(b) only offer oversight consultation but rely on the family or treating physician to select the actual company to perform the in-home services, or

(c) affiliate with or have their own home health care companies and affiliate with visiting physicians. Option (c) is more like a turnkey operation. I think it's one of the more comprehensive PC models.

Two of the companies I contacted were option (c) companies; others were either (a) or (b), which didn't really offer much at all. One of them was in a Medicare Pilot Program for Palliative Care. I didn't get into exactly what this covered.

One of the turnkey companies also offered hospice care, but for reasons unrelated to those in this post, I would never hire it after having a bad experience with home health care workers from that company.

Dad is in denial a lot of the time. He alternates between what can they do for my feet (no blood flow and forgetting he's been told they can't do much) and then saying he's just a burden and take him out back and put him down. Which of course is WAY stressful for Mom not to mention me. But he is a fighter. No, he doesn't have much quality of life but there is no way Mom (Who has DPOA) would ever agree. It will take an emergency. That she accepted letting him go last week when we almost lost him was a shock to me.

The discharge convo sounds about right except us refusing to take him. And much of that had to do with Dad. When we talked about AL, or whatever options (we know nothing about options), his blood pressure started dropping and he started shutting us out and was obviously upset about hearing no to going home. And again, the PD dialysis is the sticking point we're told. We have yet to actually look for a place. He had hemo for the first 3 months and because of where they lived, getting there, especially in the winter months, was impossible. He also hated it and swore he'd never go back on it. He'd die first.

The other issue with Medicaid that I'm not sure of is, they would of course expect them to sign over their home. They do still have the house on the other side of the state but my brother lives there and runs his cattle on it. They barely scratched out a living, it is nothing worth a lot of money by any means. My brother is also financed up the wazoo with the cattlemans association. That in itself is a ticking time bomb. I have no idea how long he can sustain that business now that Dad's health has declined the past couple years and can't help any longer. Even tho I understand using their resources to pay for their care, I know without a doubt neither one of them would EVER consent to selling the house out from under my brother. Like some of the other stories I've read, the decisions are still being made with the one needing aide and hands are tied.

We've been told that hospice doesn't take dialysis patients but then also told that depending on doctors orders - as comfort care, they could. If dialysis is removed, it is basically assisted suicide. Do they also remove all medications? Heart medications in particular? That sounds a bit harsh to me. And probably another topic. :)

I just learned about a hoyer lift but Dad isn't quite there yet. My husband dealt with Dad this morning and said he was moving a lot better. The issues are getting up off the toilet and a couple chairs where he has nothing to push up from. Pulling up doesn't seem to work for him. My husband ordered something for the toilet and said we will look into grab bars. We really haven't not done much in the way of accommodating Dad's new needs. I was laying awake last night and thinking we need OT to maybe work with strengthening his arms. Oh, and Dad does actually urinate still. And he has always done all of his own dialysis. It has just been this last 45-60 days that Mom got retrained on it before they moved back over here. However, she cannot lift the bags of fluid. We will be working on a better bedtime routine for Dad so he can still sit and do the machine himself. Keeping him involved is important I think because of what already got brought up. His quality of life. There isn't much but he never was really social to begin with and didn't go out often.

Thank you to all the people who replied and others that will later. Not feeling so alone helps as I know you all have already found out.

Yes it will be difficult finding placement b/o his peritoneal dialysis status. It sounds like he may be best placed in a SNF, but staff that know how to do PD are rare if not impossible to find.
You could put him back on hemodialysis which would require a catheter for hemo. I am thinking with his history he is probably on PD because he can't tolerate hemodialysis due to his compromised cardiac status.

Yes, what does your dad want? 

AL won't take him, I am pretty sure about this.

Dialysis patients are more prone to infections as end stage kidney disease adversely effects the immune system.

I am not sure hospice would admit him as dialysis is viewed as a life sustaining procedure & if someone opts for dialysis that means they usually are choosing to live.

It is commendable that your family provides home dialysis for him.
This takes training and skill on your part.

Have you considered a hoyer lift to help you transfer him? Bedside commode? Usually dialysis patients no longer urinate so I am thinking he needs the toilet when he has a BM.

Keep us posted and good luck. 

If the family is not able to care for a loved on in the home, then there must be a place for them to go. Would he be private pay or Medicaid? Of course, it's his decision, unless someone is acting as his HCPOA. I might meet with an Elder Law attorney who focuses on financial matters, Medicaid qualifications, etc. and see what the options are. And ensure that he has signed all needed documents.

I'd seek the exact details about whether he could enter AL. It sounds like he has too many medical issues. Did his hospital not have a social worker to assist?

As far as waiting for someone to call you with info. I'd call them multiple times per day. Being your own advocate may require lots of time, energy and dealing with people who aren't that on top of things. I hope you can find some answers, before there is another emergency. But, if not, I'd let the hospital know the situation BEFORE he's released.

What does your dad want? Is he wanting to throw in the towel, or is he fighting to the bitter end? Or is this decision in the hands of the person who holds his health care proxy?

It does not sound like he has much quality of life. It DOES sound like his physical needs outweigh the capacity of you and mom to care for him.

What was your discussion with discharge planning at the hospital? From what I've learned on this board, the discussion could go this way:

Discharge " the docs are ready to discharge dad. We're sending him home"

You " he can no longer safely be cared for at home"

Discharge " with pd dialysis, finding a nursing home would be really hard"

You: I know. But he can't come home. It's not safe. I'll wait for your call to tell us what progress you've made in finding a placement. But we won't sign for discharge. It's not safe, not for him and not for us"


It's discharge's JOB to find him a placement. It might not be close. But you can't do this any longer.

Even though I've learned a lot from reading on the forum I promised myself I wouldn't chime in on American healthcare questions, I'm replying to bump this up. In the meantime search the site (click on the three lines beside the AgingCare logo) for Medicaid.