On Tuesday, my father lost his balance and fell in the kitchen. My mother and I couldn't get him up because he said the was pain around his hip. We called an ambulance. CT scans at the ER showed a 'burst compression fracture' in his L4 vertebrae. So they admitted him to the neurology/neurosurgery floor. The hospitalist explained that they weren't doing surgery because his bones are too weak to hold the hardware they'd need. She said there will be lasting neurological effects from the fracture, in terms of mobility, because of that area of the back controls movement.
On Wednesday, we didn't get there in time to talk to the neurosurgeon. We did talk to a palliative care doctor who got him to set out and sign his wishes about DNR and being kept alive with machines and feeding tubes, which we've never been able to do. She said she did not see impending end of life and did not see signs of dementia or Alzheimer's. She said she would be involved from now on.
On Thursday, a coordinator from my father's PCP office came in and asked us about discharge dates and plans. Which was shocking, because we'd been given the idea that, at the very least, he was looking at a couple days in the hospital and a couple weeks in rehab. If not more extensive rehab in a nursing home.
And then a case manager/social worker came in and asked more questions about discharge plans... and we knew then only that we'd been told physical therapy was still doing their assessments... and what we were thinking about long term. We had no idea how to answer that.
And then, just before we left, we ran into his admitting hospitalist who sat down with us (which he didn't have to do as he was on his way somewhere) and tried to explain things (which he was not very good at). I walked away more confused than I was before... now with a maybe possible diagnosis of NPH (which is apparently a form of dementia?) but the reassurance that the neurosurgeon would take care of it in his clinic. And the hospitalist insisted that a little rehab, two weeks or so, and my father can come home... despite the fact that his therapy yesterday was sitting up in bed and "it didn't go very well."
So... who do we talk to to get one story? Is it possible to get one story? I thought that was the point of hospitalists and even palliative care doctors? Why do they bother talking before they know something?
What should we do?
Sorry for rambling but all this kept me awake last night and the people here are so kind and thoughtful that I hope you won't mind.
Keep gathering every bit of info you can. Get their names, titles, organizations, contact phone numbers. Get the meds list, the care plan, the discharge plan. Get print copies of the medical records and imaging--super important!
GIVE EVERYONE your phone number. Sounds crazy, but you'd be surprised--either the hospital did not get your phone number into their records, or the staff person did not have access to it, or the staff person did not have time to access it. Walk around the hospital with a stack of post-its with your name, phone number, patient's name, patient's room number, today's date, today's question.
Research local rehabs NOW, they are not all the same--some are really bad and he can acquire bacterial infections and other conditions directly from the rehab.
Keep records of every conversation and every piece of info! Start files on your computer, with corresponding print files. Sorry to tell you this, but it will never end.
You can pay someone like a geriatric care coordinator or someone who finds seniors housing options, but you'll still have to supply them with accurate info, and you'll still have to sift through all the info they supply.
Good luck!
So much information and so many people involved. My only suggestion to keep everything straight is to keep a notebook at his bedside, at least one page for each day so you can document who said what, recommendations made, how your father's therapy went that day (this helps document improvement or not), and anything else that is pertinent to his care. I think that would also help your mother, too.
Prayers for dad's relief and prayers to your family who are trying to make good decisions.
I was then told that the brain tumor was likely benign and had been there for decades possibly, pressing on balance center and brain stem. And that brain surgery would never be done in a man this age with that diagnosis.
I was THEN told that my brother has a likely early stages of Lewy's Dementia.
Pretty much, after a lot of research, we have come to our own conclusions about what he does or doesn't have. The numbers of doctors, from surgical neuro to NON surgical neuro to hospitalist who seemed to know nothing about what those other teams said--it honestly went on and on and on. Our best answers oddly enough came from the PT, OT and Doc at the rehab. Go figure.
Our system is remarkably out of whack. For all that time we are left reeling with grids trying to figure out the billing entities and who is being paid what by whom. To make things worse Doc offices no longer do their own billing but outsource it to any number of States and even countries. When on top of that you are dealing as POA it is a further nightmare.
I can only say I am relieved to hear he is going to go to Rehab. I hope your best answers will come from there. BEG to try to be in on care plan conferences. And wishing you luck, hoping you will update us.
In my personal experience the more outrageous the diagnoses are the more likely they came from their latest intern or resident in Neuro.
You have my heart. I can't give you a bit of help other than to say you aren't alone.
I think what is being said, without being direct, is that you will not be able to care for Dad at home. So, you need a plan. If you want him cared at home then u probably will need help. Therapy can be done at home. If this is not an expense you can afford, then ur looking at a LTC facility. If this is the way you need to go you need to look at your finances.
Do you both only receive SS and pensions? Do u own your house? Do you have cars?
Do you have bonds, CDs, IRAs, annuities, insurance policies not provided by former employers but have cash value.
As a Community Spouse your assets will be split between you. You can stay in the house and have a car. You will have enough to live on. Ur DHs share will need to be spent down and Medicaid applied for to start when his money runs out. There is more involved here but this is basic.
The hospital is trying to find out if you can afford LTC. If not, they can help you start the process for Medicaid. Me, I would talk to a Medicaid caseworker. I don't believe a Social Worker knows all the ins and outs when it comes to Medicaid. Each case is different.
How is your dad’s pain level? Are they keeping that under control?
Where is his nurse in all of this??
Someone had to have witnessed the DNR. Who was that person???
NPH is normal pressure Hydrocephalus. Look it up on the Mayo Clinic or Web MD site.
I'm glad that the case manager is looking into placement now; start touring rehab as soon as she gives you places. You'd be amazed at what can be accomplished in 2 weeks of rehab, but whether dad goes home or continues to reside in a facility is a separate issue, not to be confused with when hell be ready to leave rehab.
Leaving rehab means he's at the point where he's made all or most of the progress he can. Whether he goes home or stays with self- or Medicaid pay is a matter of "will he be safe at home with the care family can provide?"