He has been here 9 days and the figuring things out is slow going. Tomorrow a case manager comes from the local aging department. What should I be asking? What should I be setting up? How do I know I'm not forgetting something important? How do I manage the daily care efficiently? Fall prevention is looking like a big issue. I've managed to keep him alive for the last 9 days but I am more than a little frightened. He is really healthy, no meds other than vitamins, recovering from a major leg surgery and complications, plus what looks like COPD.
I've worked as a caregiver but have never had to do the planning and organizing part.
Any pointers or ideas would be very appreciated.
But other than that, I think the first thing you should do is take some deep breaths. And pat yourself on the back - you haven't managed to do him in yet, at least!
Right. To go back to the beginning: how did it come about that he was discharged to your home, with you as his primary caregiver, without your being meaningfully consulted about his care plan?
Healthy as in no chronic diseases or ongoing medication needs. It should say POCD, post operative cognitive disorder.
The severity of the cognitive issue was a surprise. He had an accident in Maine, requiring his femur to be puzzled back together with various hardware and cables. We were all camping together. I made him go to the hospital. He landed in a rehab center up there. 5 hours from our home in Massachusetts. We were the only people who seemed to care. No one else was interested. No one else visited or checked on him. We tried to get him transferred but his primary residence is in New Hampshire. No transfer. The rehab center started calling us when there was a question or anything. Then it became clear he wasn't going to be able to go to his home after discharge for several reasons. We decided to have him come here. The original plan was Grampy would kick around here until he was done with PT and then he would go on about his way. Since he is a truly awesome guy, no problem. We like having him around. The original plan was nuked thoroughly his second day here. It became clear he is in serious straits. I discovered he is about as capable as a three year old as far as taking care of himself. So now I'm scrambling to figure out what to do. The rehab discharge papers were devoid of the cognitive problems and full of great PT reports, no medications other than vitamins. He seemed normal, just gimpy and physically weak. Well he can't answer questions, can't remember what he had for lunch, to brush his teeth or change his underwear. He doesn't remember the extent of his injuries, how long he was in rehab, or any of the complications involved. He can't remember who his PCP is. The good news is even after the nuke we are still happy to have him, he's still awesome. I've kinda thrown him into the schedule with the kids and gone with it. However, I think pretending that I have any idea what I'm doing would be stupid at the least and dangerous at the worst. I need some kind of framework to go on. Right now I'm managing him at a slightly lower level than my 5 year old. I'm pretty sure that will keep him alive but it isn't going to get us any improvements. We have shifted from temporary get back on your feet to permanent fixture. I need a plan, and advice, and probably a monthly wine subscription. It was agreed a long time ago that he would come to us when he couldn't do for himself so that part is all fine. It is the abruptness and severity that is a shock.
How long ago was the accident, and how long was he in rehab?
If you need to contact his GP, would the hospital have any useful records?
I've already gotten him a new PCP here because driving 2 hours to NH for that isn't an option. The referrals are rolling in for evals and such, so that is going well. There is no info in his records or his ER/surgery discharge about a PCP.
Fun times.
I've been reading the care plan section here and I've managed to get a handle on most things on that list. My issue is building the daily care team. I'm going to need some kind of basic crash course. It seems offensive somehow to treat him like a child, which is kinda what is happening. Thankfully his sense of humor is intact and his responses are along the lines of " I'd prefer a straw over the sippy cup."
He seems unaware of how much trouble he is in.
We do not know if the cognitive issues will improve or not. He is way off his presurgery baseline.
UTIs can abruptly throw seniors into cognitive deficiencies, which may (may) be temporary, and resolved with antibiotics.
He definitely needs further evaluation. Blood work, and medication effects -- for starters. If answers are still lacking after that, a neurologist's exam is likely required.
Is it possible for somebody to visit his home and gather up key documents and information, his address book, stuff like that?
Anesthesia can cause a decline in cognitive ability that may or may not be temporary.
My mom had been diagnosed with Alzheimer's she had a hysterectomy at 80 and underwent chemo, etc. Initially we thought she would return to the pre-surgery baseline of cognition. The surgery escalated her Alzheimer's decline following. Alzheimer's eventually caused my mom's death ten years later. The further decline was very slow.
This is the time for you to make sure all of FIL's documents are in place and determine how long you are willing and able to provide care for him. I very well could be a very long and declining situation. Make plans necessary for future care, not forgetting that you need respite time.
You prepare meals and presumably a healthy diet, he needs to be encouraged to drink water if possible.
He definitely should not be left alone and over time you will need to hire some help. Contact your local health department they may be able to arrange things like someone to help him shower which can easily take close to an hour. You can also talk to his PCP out more PT if you feel that would help. They can send someone in or you can take him to a PT facility which might be better as they have all kinds of machines which make it more fun.
Lots of deep breaths and a couple of glasses of wine and you will do fine
Confounded, I had him into a GP two days after I got him here for a full physical. Other than the reconstructed leg and the cognitive issue he is as healthy as a person can get. He has a neuro eval the first week in Dec.
Countrymouse, There are two falling down houses that have his belongings in them. Think hoard, we are working on sifting but so far nothing useful. The houses belong to his cousins, total disater situation. I'm going from scratch until I can do otherwise.
Gladimhere, it is looking like there was a baseline issue prior to a surgery 3 years ago. Made worse by that surgery, made worse by this surgery. We are working on figuring out the big picture with his documents and the more we find the worse it gets. I don't know if future planning is possible at this time and maybe not for a while. He is here and we will do the best we are capable of as long as it takes.
Veronica91, thank you for the kind words. Yes, he gets clean food and plenty of clean water. His diet was appalling. Lucky for me he drinks without issue. We told him he couldn't get discharged from rehab until he was properly rehydrated and habitually staying that way, because it was an issue. His water container is his new best friend.
We had the local aging agency in here two days ago and while I didn't agree with the social workers assesment of his cognitive state she agreed to send in a nurse to eval the situation. The nurse will help us with a care plan and off we go I guess. He also qualifies for several of their services such as rides, companion, nurse visits, assistance with personal care, things like that. I've got his GP referring in visiting nurses to get some of the therapies at the house because it's New England and winter, once it starts snowing here taking him out is going to be dangerous. In the meantime I am thrilled to have found this site and the people on it. The things I've learned already are amazing. I'm at least 30% less terrified as I was before I came here.
You know what we're all thinking, don't you... As in "oh-oh."
Misfortune and accidents can happen to anyone. But if you're living among a hoard in your cousin's dilapidated shack and, as you say, haven't accumulated... two beans to rub together, shall we say? It's not a good sign of a healthy retirement, is it.
You have already made miracles happen, getting people to respond this fast (even if it doesn't feel fast, that is *fast*). I hope your FIL thrives in your family's care, I hope he really does turn into the family mascot, I hope this will be a happy, happy story.
But. Just in case.
1. Make sure *everybody* pulls their weight, not just you.
2. Try not to get so attached to him that you can't bear to hand his care over if his needs prove to be more than you can meet.
So far everyone is working together, but we all know what happens when new and shiny wears off.