My parents have been living with us for a couple years now and Dad is steadily getting worse. We just got thru another hospital visit where we were told Dad wouldn't make it but by the grace of God he did. This is a mixed blessing tho. They are on social security and have Medicare but we are being told in home care isn't paid for. For some background on Dad.....
He has a defib pacemaker and it has fired on him last year and with hospital care, they stabilized him. His 'ejection fraction rate' is about 15%. We have been told he probably would not survive any surgery where he has to be put out. He is on home PD kidney dialysis (and we are told this is the hang up with being able to find any nursing home care). They just found infections thru the colon and have said it's diverticulitis. I do not fully understand this. He had bladder cancer a couple years ago and got some treatment but we believe it is still there. However, again, he can't have surgeries to try to fix it.
Recently the vascular blockages in his legs have reared it's head and caused problems. He has a very had time walking now due to constant pain. His 'possible' options at first discussion was either amputation or possibly a bypass down his leg. Either way.... he wouldn't survive the procedure and they aren't really looking at trying.
We just got him home and things fell apart when trying to get him to bed. My Mom, and myself, are overweight but I have at least way more mobility than Mom. But neither of us are capable of lifting him. And he can't hardly get from a seated position to the walker. He lost his balance while at the toilet to night and the toilet actually caught his fall. But all our fears were realized in that moment. Thankfully my husband was home (he travels a lot for work) and was able to lift him but has a back injury where this isn't going to be an option.
We are being told hospice might be an option but nobody will touch his PD dialysis. Same with any nursing facility. In home care isn't covered by medicare. Mom and I have felt like the hospital stabilizes them enough then sends them home to try to manage their care and I see yet another trip to the hospital soon. We are not wheelchair accessible, we have converted the old living room to their bedroom but all the options we may have are totally unknown to me and as his daughter, my min is quite frankly on trying to cope with my Dad's failing help and not knowing what to do.
We do supposedly have 'home health care' from the hospital set up to contact us and they say someone coming out a time or two a week is paid by Medicare. But we haven't been contacted yet. (They said within 24 hours of discharge).
I realize I didn't really ask a question but I'm hoping that some of you can read between the lines and offer some hope or direction. More than anything I just want to curl up and cry.
We are in Washington state if that info helps and the hospital we've been with is Tacoma General.
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!
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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!
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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!
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.
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.
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.
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.
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.
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.
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.