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.