Falling apart day by day

As I’ve written before, my dad is on PD, is 86 and has mental impairment. Recently he had another hospital stay for pneumonia and that bout caused further mental impairment due to oxygen desaturation at least twice and his kidneys to “get lazy” and barely produce urine. Now, as many may know, the longer your kidneys produce, the better the longevity for your peritoneal lining. So this isn’t great news. For his latest kt/V test, he barely collected 50ml.
But the real issue is now he is on full time oxygen in addition to waiting for a new prosthetic, so I cannot leave him alone in the house. Which means I am trapped here with him 24/7 unless I hire someone to “watch” him, since insurance doesn’t cover this service as he’s not completely helpless because he lives with someone. Ironic, no? Because if he lived alone, insurance would pay for assistance. I utilized a great service for two weeks in a row. It was beautiful and strange. And expensive yet worth it. But not something we can easily accommodate every week.
I’ve a niece close by that has helped once, and a sister that has helped twice, and a very understanding boyfriend who has helped a few times.
However, I was used to being able to leave the house pretty much as long as my dad wasn’t hooked up to PD prior to this. And now, I am TRAPPED. I keep myself busy doing all sorts of things around the house, and it doesn’t help it’s summer in Vegas now and the day time heat is oppressive. I can’t even go take the dog for a walk for more than 20 minutes because of my dad not being able to be left alone. Also, his treatment time went from a reasonable 6 hours to 9 hours and it doesn’t seem to been helping as much anymore. His albumin is dropping, his hemoglobin is dropping. In fact, had to take him to the ER last week for a transfusion! It seems inevitable that he will go back on hemodialysis, but he doesn’t want to accept that as a possibility, or that perhaps even that won’t be sufficient for his health.
All I know is it’s maddening that the agencies out there only give you numbers to call yourself. They don’t actually help you get the information you need, the assistance you need. They say call this number. And if you made a decent retirement? Oh you don’t qualify for help because you have money…that goes real quick if you have weekly care, folks. Just for the two weeks for 3 or 4 days a week, 3-5 hour shifts, was over $800. Even on a decent retirement income, that cuts deep if you even say $2000 a month for assistance in home. But what’s worse is as his caregiver, and someone who is not working or producing income, there is no help or assistance for me. They lump me in with him because we live together and never consider my needs for respite. The agency that “helped” me gave me 3 applications. 1 for a one time only voucher that takes months to process for only potential approval for $1000; 1 for the Alzheimer’s foundation if he qualifies (which he’s never been diagnosed with either dementia or Alzheimer’s) would provide 2 vouchers for $500; and lastly, a form for the VA and advice to get a VA lawyer so I can get some benefits for him through them.
This last one is laughable. Everyone knows the VA lawyers are expensive and the time it takes to get approved through that red-tape covered system would be exhausting.
Every waking moment, or nearly, is focused on my dad. Getting him to eat, drink, get up and move around a little, do breathing exercises, etc…the list goes on and on. Then there’s the household stuff, paying bills, somehow getting to the grocery store, taking the dog to the vet. My own headspace shrinks to where even making a call that’s lengthy is exhausting and I have to schedule only one call a day at best. Even when my bf is here, he knows that my dad takes first priority over every thing…so that’s fun.
Actually the really worst part is that our clinic doesn’t provide respite care for PD care partners. Only in a dire emergency would they allow someone to come to the clinic to do their PD, and it would have to be manual and the patient would have to keep coming back to the clinic every 4-6 hours for their drain/fill cycle. And only for like a day. So that also means I can’t so much as get a bad cold. When we signed up for PD, why didn’t this part come up? Why did no one think that PD care partners would need a break occasionally? If you’re on home hemo and need a break, you can schedule in center. But no such option for PD patients. A time machine would be so helpful about now. I know exactly when I’d go back to. The first PD intro class in October. lol if I really had access to a time machine for only my own life…it’d go back further than that!!!

Prayer has helped some, yet I cannot continually be in a spiritual place on this very physical and real plane. Not expecting some breakthrough advice or miracle by writing this…just proof that I exist to other people outside the small circle that my life has become.

Your feeling trapped is certainly understandable, given the circumstances! Some thoughts:

  • With oxygen, a need for a new prosthetic, and PD, is there a reason he couldn’t go to rehab, or a skilled nursing facility? Total care for someone who is very ill and just past a hospital stay, 24 hours a day, with almost no respite is not a reasonable thing to expect anyone to do.

  • What is the minimum amount of time the service you used will send someone out? For now, it may be that if you know you can get a break for even 2 days a week, it may help you to get through until…what? He gets off of oxygen? Will he ever be able to be alone again?

  • Would your niece and sister agree to a predictable schedule of once a week or once every other week? Why is this falling 99.9% on you and only .1% on your sister, if she is nearby enough to help?

  • Is Care Patrol (https://www.carepatrol.com) one of the agencies you’ve tried? They are experts in matching people up to resources in their area.

  • PD does not work forever, and it sounds as if it may be starting to fail your dad. If/when that happens, he could choose to do hemodialysis (which would give you breaks three times a week), or he could opt for comfort care that would ease his symptoms–but not further extend his life.

  • Look for caregiver forums on Facebook, if you haven’t done this already. You can find tips and support that may help you get through this difficult time.

Dori made some excellent suggestions. One thing you mentioned that she didn’t address is his eligibility for VA benefits. If he served in the military and was honorably discharged, he may be eligible for multiple VA benefits. There is an online VA benefit navigator that will help you know what, if any, benefits your father is eligible for. You can find this at https://explore.va.gov/benefits-navigator.

If you’d prefer to talk with someone rather than use the online website, here’s a page that gives you several options. Although you can hire an attorney to help you fill out the paperwork, there are other people in your area who can help you if you need help and will investigate to see what benefits your father may be eligible for. The page with lots of options for people who can help you at https://explore.va.gov/assistance.

Are you aware of adult day care? If he’s able to get out of the house, you could take him to an adult day care center where he could socialize with other people, have a meal, get services they offer and it could give you a break for a lot less than paying someone to come to your home. If he’s eligible for VA benefits, they might cover adult day care. Here’s a website that describes adult day care.

I suspect that you are doing your best to avoid placing your father in a nursing home. If he had long-term care insurance that covered help at home, I suspect you’d know about that. As an older person myself and a parent, I doubt your father would want you to sacrifice your health and happiness to keep him at home, especially as his healthcare needs keep increasing. I also doubt he’d want you to jeopardize your retirement lifestyle. When you’re still working age and don’t work, you’re can’t contribute to Social Security which could reduce how much income you’ll get from Social Security.

With all his health problems, he could be getting some help from a home health or other agency that provides palliative care. Your father’s doctor could make a referral for palliative care. Here’s info on palliative care. There’s a link in this info to a directory where you can find a palliative care provider near you. Although hospice services require a doctor to say the person has 6 months to live, palliative care has no such time limit and is available for people with kidney disease.

Have you discussed with his nephrologist how long he/she expects your father to survive given all his health problems? Does your father have an advance directive or did you and your father talk about what he wanted his quality of life to be and what treatments he would choose to do or not do if he couldn’t make his own decisions? You said he only produces 50 ml of urine. Many people on dialysis stop making urine. However, if PD stops working for him, a decision will need to be made about whether to switch to hemodialysis or to choose “comfort care” without dialysis. Death from kidney failure is usually not painful and if your father chose this and was referred to a hospice agency, staff there could manage any discomfort he has and provide support to you. Here’s info about stopping dialysis from the National Kidney Foundation.

I hope the ideas Dori and I have shared will help you get the help you need for your father.

Believe it or not, when he was released from this last bout of pneumonia, I asked, no I begged, his primary care doctor to let him go to a SNF for just a couple of weeks right after and she told me those places are full of sick people and that he’d most likely get worse not better there. What was I supposed to do? She said hire respite care and get in home PT. So that’s what I did.
The agency I used is called Senior Helpers. They were great, they do at-need and long term companion care. They having variations probably based on locations, since they are a franchised company, but the base price varied from $22-36 based on the hours you need them for. They went above and beyond to make sure both my dad and I were comfortable with the people chosen, and best of all, they do psychological profile testing not just the typical background check. But I’ve been trying not to use them, because mainly it can get expensive on a weekly basis, but also because my dad still treats a guest in our home as someone he has to pay attention to, so he can’t just fully relax as if it were me. These people are very respectful and try not to tire him out by talking too much, etc but it’s just different. He understands why I need the break, so he puts up with it, but ideally he’d rather have no one “watching” him at all, though he knows he needs some.
As far as my family helping…my sister is married to a domineering man with many health issues himself, goes to full time school 4 days a week and has a complex set of issues with her children, plus lives over 30 minutes from us. She tries to help a couple times a month on one of her days off from school, but I could never demand a set schedule as she could have to break it at any time due to her own immediate family issues. She has a track record of this, and besides is not dealing with the fact her dad is failing very well at all and she’s about 12 years older than I.There’s more to it than that but that’s not important here.
My niece just turned 18 in April, and though she has her CNA completed, she is still 18 and has extracurricular activities plus a part time job and will be going to full time school by end of August again. She has a huge heart, but again, I couldn’t demand a schedule from her and expect her to keep it.
My dad isn’t anticipated to get off oxygen ever again, according to current results from his CT chest. Permanent scarring from chronic aspiration seems to be the case, plus two bouts of pneumonia within 6 months really did a number on him. He is supposed to be able to get a portable compressor to walk around with, and will be getting his new prosthetic in a couple of weeks. However, the lungs may restrict how much he feels good with walking around, as he can’t go far without feeling winded now. And that’s not helpful for his morale and spirit, which I’m also a guardian of.
At this point, as of today in fact, we are in process of getting him to switch to hemo. His hemoglobin dropped again and on Saturday I had to bring him to the hospital for a transfusion and it was 5 hours of additional time because they got concerned about a pre-existing heart condition that they were well aware of even as of his last time in a little over 2 weeks ago. Bureaucratic crap. I had to beg plead threaten to walk out AMA to get them to release him.

I’m not on Facebook. This is the only forum I’m on because it’s private. I’m reaching out to the agency that “helped” me to phone numbers of places to call…this is not true help of course because I’m still doing all the work, just getting provided a number sooner than I can research myself on the internet. It sounds like Care Patrol is the same. They say these people could help you, call them…that’s great help to someone who can’t figure that out themselves.
My dad and I talk about every 2 weeks on whether this is the life he wants for himself. The diet and visits to clinic and the worry about pulling off enough fluids,etc. I have told him I am here to support him fully. I am not a jailer and will not hold him to a life that does not serve him happily. If at any time he decides no more dialysis at all, he gets to call all his doctors and tell them that personally and then he gets hospice care until he passes. He understands this, and is willing to switch back to hemo even with the food restrictions if he can still do better than PD is doing for him. He understands, I think, that it will be at least another month before this change happens.
I told him I do need more training in caring for him better, so that’s what I’m looking into now. I certainly cannot sustain on all that I know now; my current coping mechanisms aren’t effective enough.
Thank you for offering up what you could. But more for just responding. <3

Thank you for the links, Beth. VA is the only one that I’ve yet to tackle. My dad said he was willing to go to the Day Care places if I needed to take a class to help me help him better, but I know that’s not something he’d go to willingly because he likes being not bothered by strangers. He’s an introvert like me, and only occasionally seeks out people.
He’s not concerned about me retiring, but knows I can’t have a savings for a place to live after he’s gone if I’m not working. So he’s aware that getting back to work is important for me, but he also knows that he is the most important to me. And I’ve no desire to cause him stress by demanding things of him emotionally that he’s not ready for, like too much respite care or even talking about assisted living environments.
We will sort it out. Love always wins, right?

Hi Angel,

The Home Dialysis Central Facebook Group is a closed members-only group. You have to ask to join, answer 3 questions about why you’re interested in joining, and be approved by one of the moderators. Dori and I are both moderators. There are rules for the group that include being kind and respectful. Most of the members are patients on HD or PD or are care partners. There are some dialysis professionals who are members too. Group members are very supportive of each other and quick to answer questions and offer suggestions. Here’s the link in case you’re interested - https://www.facebook.com/groups/HomeDialysisCentral/.

Well here is moderated too and people have been helpful here and I’m not interested in Facebook in general, no offence. And at this point, my dad will go on hemo within a couple months and it’ll still be a wait and see life for him and I. We got his portable compressor yesterday and it doesn’t appear to be too heavy for him at this time. His prosthetic issue will resolve in the next couple weeks and then the issue of my freedom and options changes again. Life is strange, beautiful and horrific. I would never wish this particular bit of it on anyone. I deeply begin to understand why many people opt out of their parental care. I can’t be one of them and like myself in the mirror…and it seems perhaps I won’t need to. His health may just get him out of this life sooner than either one of us could have known. Morale is tied deep in family tradition of life expectancy. I’ll be here for it all. Come what may.

I totally understand you lack of interest in Facebook. I’m not a big fan. However, the site I suggested has thousands of members, unfortunately many more than these forums attract.

If your dad’s PD isn’t working well and he needs to switch to hemodialysis, you might check to see if there’s a clinic in your area that offers nocturnal hemodialysis. If so, he could sleep through his dialysis and have his days free. Nocturnal dialysis provides dialysis in a much gentler way than traditional hemodialysis. It could improve his health and his quality of life. Having him gone in the evening would give you time to run a few errands and hopefully get some sleep yourself.