New here so I apologize in advance if it’s jumbled and long. Just kind of panicking.
Dad who lives with us is coming out of his third hospitalization/rehab since October. He has COPD, Diabetes and Stage 4 CHF. 83 years old. Home bound as stairs and cars are a challenge. 24/7 02 set at 4 liters minimum.
Some background...dad is fully mentally competent. Though I’ve seen some signs of decline I can’t say with any certainty that he’s got dementia. Yes he’s forgetful, makes silly decision, forgets things ect but this could be age as well as health issues. Getting a full mental eval is on my lengthy list of things to do and I did ask the caseworker but was ignored.
Was admitted to hospital in October as he was septic(from an infection stemming from his legs that he hid and in renal failure. ICU for days and then off to an LTACH. Spent a month there then stepped down to a snf for additional rehab and came home right before Christmas. He uses a walker to get around but was strong when he came home. Aside from the norm(can’t drive etc) was doing everything for himself. We had home care in and he was watched closely and improving.
Right before discharge from home care he fell. Hit his head. Had a possible mild heart attack although they called it an “incident”. He spent 3 days in the hospital where they just discharged to home without consulting me. He wasn’t ready as all the strength he had built up was gone.
Nursing, PT and OT in home again, and he was useless. He’d play the part when they were here but soon as they left he would sit..all day every day. I was suddenly forced to do everything for him. His only movement was the 7 feet to the bathroom and back to his room a couple times a day. He declined.
When he gained 10 pounds in fluid in 5 days his homecare nurse sent him back to the ER. He was admitted for 6 days for a chf episode. Fluid on the lungs and in the abdomen. He had no choice but to go back to rehab where he’s been to regain strength for 2 weeks.
They have been less than forthcoming with info. With covid restrictions visiting must be scheduled. The caseworker was on vacation until Wednesday(it’s now Saturday). I spoke with a nurse on Tuesday expressing my concerns and she assured me that she was going to recommend additional time but at that point his discharge date was projected for this upcoming Monday and she would have the caseworker call me as soon as she was back.
He has met his PT goals in the rehab. However....his meds aren’t regulated, he has regained all the fluid they had gotten off of him in the hospital(11 pounds), his legs are swollen. The caseworker called Friday and said he’s being released Monday. She did not address the medical issues and no care meeting occurred. They have in his chart that I should be involved in all the planning and I was included in none. Her baseline was “ he can fe fully independent in his room, he can go to the bathroom alone and he can walk 50 feet unassisted”. Ok great but what about the medical issues. If we still aren’t regulated with his medications and his Weight is creeping up by the day...how can he possibly come home??
Do I have ANY recourse?? I was not given any option to appeal. My feeling is that if he comes home, though he’s physically improving and can walk to the kitchen he’s medically back where he was at hospital admit. Can I have his pcp intervene? Should he go back to the hospital for the medical stuff? My biggest fear is he will come home and in 3-4 weeks be headed back, via ambulance with all the bells and whistles because his health needs weren’t addressed. I’m also not able to or willing to be his full time caregiver. It’s just too much and the thought of getting him in and out of the car and then into the house makes me want to vomit. It took my husband and myself 3 hours last time.
I have limited time to figure this out and make any moves and I need to act fast! Any advice appreciated
Dad may not be able to plan what to do about his failing health or his situation. (He may be in denial or truly have limited cognitive ability to reason).
But you can reason & plan.
The rehab may discharge him home now (as no further goals). This will not prevent him bouncing back into ER. Rehab know this.
Then his situation can be assessed again. He was on the path of 'active treatment' before but the 'comfort care' path exists too. Maybe it has now just come into view..
You know this. You are researching. You will make the decisions you need to.
I would encourage you to ask about hospice, because he is obviously having serious cardiac problems that will only get worse.
CHF can cause vascular dementia and it is really hard for people that don't know the individual to see it, in my personal experience. My dad was really smart and he could showtime like nobody's business. It made it very challenging dealing with the hospital, doctors and rehab, they didn't know that he was about 50% gone most the time because he could still hold a decent conversation for short periods of time.
I would also tell them that it doesn't matter what he says or thinks, coming back to your house is an unsafe discharge. Keep saying that to everyone that you speak with. He needs to go to rehab and get assessed for long term care. He can no longer care about you or how his living with you effects anyone but himself. That is what happens with our elders that want what they want and they don't care about anything or anyone else as long as they get what they want. Just prepare yourself for his wrath and know that you can do nothing to change it and he can't help it.
Call the hospital in the morning and start telling them UNSAFE DISCHARGE and refuse to pick him up. If they are sending him home because he is fine, then he can get home without you or your husband.
im going to do my best in the morning to KEEP HIM IN but if I can’t...I’m already working with an attorney to have the correct documents drawn up. If he comes home and refuses to sign...well we will be focusing on other arrangements. I will not do this anymore. First of all...it was never part of our agreement. When his mother declined he stuck her in a nursing home and never visited. Not to sound like a jerk but...Karma.
I know how sick he is. He is either in denial or just doesn’t care. I’ve already been researching hospice and plan to make even more phone calls to see if that’s an option.
They go home but boomerang right back to ER.
I see more of the issue here now - Dad is working against you. He wants to go home but lacks insight how unstable his health is, uncomplient & unable to see the stress it will place on you. Very ill people do this. CCF, renal, vascular dementia, delerium, any cognitnitive decline or just plain old denial. It is very hard to deal reasonably with people who are not reasonable. So what to do?
Say Dad returns home. He sits in his chair, becomes unwell, call 911. Boomerang.
He gets back on the circular train of ER-hospital-rehab-home... until at some stage he gets it, gives in & moves into care or even a hospice house, or he fights on until his train stops.
Maybe he will have a good day or two at home you can enjoy before he boards the train again.
Hes definitely fighting against me. Thing is...the guilt trip. And I’m not sure why I feel obligated and guilty. We had a horrible relationship for many many years. Barely spoke until mom passed back in 1997.
I fully believe, should he come home, he will be back within a month or so. And I’ve already decided, and plan to tell him..the next time you leave here in an ambulance will be the last time you leave here.
Hes been lucky. I’ve been home due to covid. A return to work is coming. I won’t be here to be his servant soon.
I guess the silver lining would be that the relentless phone calls will stop. We talk at home but when he’s in the hospital or rehab he seems to think I should spend every waking hour on the phone with him. Listening to the blaring tv and him complain(and apparently lie).
Oh...I also found out when I called the nurse today that they weren’t including me because he told them NOT TO. That he could make decisions for himself. So frustrating.
He of course, set in his ways spent an hour complaining telling me how he’s gained so much weight, his legs are swollen, the b*tch nurse was rummaging through his things, stole his nasal spray. It was A LOT.
Left a message for the caseworker. Demanding a meeting. Called his unit and spoke to the nurse to get a full history. Oh my god he’s LYING to me and I’m not sure what his game is here. They’ve been in constant contact with his pcp who’s giving them directives and he’s being non compliant(won’t let them wrap his legs, won’t use the nasal spray they gave him, ect).
Called his pcp on call and what the rehab told me was confirmed. I’m annoyed.
I’m honestly not sure why or how they are considering this man any sort of mentally competent but they are. They claim he can live independently “no problem”
No clue what will happen tomorrow but I’m anticipating him coming home.
Someone asked above if I have POA. I do not because he’s refused to make ANY MOVES to plan for the future. He’s in complete denial about his health and talking about buying a new grill so he can “do some grilling this summer”. HE HASNT BEEN OUTSIDE SINCE 7/4/20.
If he is on Medicare then you call the Medicare hotline. It at least buys you time as Medicare decides wether the rehab has to continue to figure out all the above before releasing him. It’s worth a try.
after my moms stroke I had her sent from rehab to the hospital for an infection and when the hospital was discharging us home they had nothing lined up so I called and reported it.
My moms was that we didn’t have the bed - wheelchair - hoyers and medications etc correct - ordered or received from DME equipment place in the home yet etc therefore it was not safe for her to come home until I had all she needed.
If you feel he will need any special equipment (like we did above) then make a list so you can report it to Medicare.
I would also question if they said he is meeting his goals in therapy then why are they not continuing? If your meeting goals then each week is extended.
But just to buy you some time while you figure this out and make sure he does come home with all he needs met - I would most certainly start with calling Medicare and tell them the above - that he isn’t safe and nothing has been discussed with you yet to make sure his discharge is safe and you feel it’s an unsafe discharge until the rehab discusses and does the planning with you. Best of luck
If all this has been done, and Dad is still stubborn enough that he will not take advice for placement, then yes, he will likely go home, and yes, this will likely continue until the final catastrophe comes--and it will. Your father already went septic from hiding a cellulitis on his leg (my brother died of this just last May). His kidneys and his heart are failing. He should likely have hospice at this point. Instead, with his mental ability intact he has made another choice. To go home. See to it that you make the issue clear to medical and to Dad in no uncertain terms and make it clear you will not YOURSELF enable this behavior, and will not "be there" to support an unsafe discharge.
And that's it. That's all you can do. You are not in charge of your Dad's choices as long as HE is in charge of them. All the care in the world will not save him from dying as his heart and kidneys and lungs are failing now. All the right decisions won't stop this process you see coming. My brother was in care in ALF that was a wonderful place. That didn't stop nature taking its course when he hid what he thought was just a not healing sore on his leg.
I am sorry you have to face this. There is really no good and no certain answer here. I surely do wish you the best.
Call the ombudsman.
He has been through a lot. CHF is VERY Tiring not to mention his other issues. i am sorry that your dad is so sick and I know how hard it is to feel inadequate to manage his care on your own.
My mom had CHF and she had an episode while in rehab where she had to go back to Intensive Care due to excess fluid. And then back to rehab.
before coming home. The rehab sent her back to the ER in the middle of the night so I didn’t have your issues with a too soon release.
What I noticed was her diet wasn’t what it needed to be in rehab. Nor was her weight monitored daily as it should have been. It was my first rehab experience and sadly it probably is too much to think they would adequately monitor all aspects of the medical care while in rehab. So her second rehab was at the hospital with a much tighter control.
You are right that it sounds like he is back to square one if he has gained 11 lbs with no intervention. You are also right that the rehab probably isn’t where that can be addressed. He is too ill to be rehabbing it seems although he was doing it.
He needs to go back to the hospital to deal with the fluid, If it was too much to come off at home when he went to the ER the first time, it’s too much now.
See where he is tomorrow on the weight and put your calls into his doctors for their advice. I wouldn’t wait until
Monday. What are they doing for him in the rehab for his CHF? I’m assuming just giving him meds by mouth which isn’t working right now. So they are right that he doesn’t need to be there but he doesn’t need to be home either.
Maybe they can do a BNP blood test to help inform their decision if the weight isn’t convincing enough.
Towards the end of my moms life, her CHF was managed by a heart transplant center of a heart hospital instead of her cardiologist. I had asked about hospice and he (cardio) referred her to them. The goal was to keep her out of the hospital and get the fluid off before it got out of hand.
She would weigh herself each morning (after voiding) and if her weight was up a certain amount we would call her nurse and they would adjust her meds if needed or give guidance. My mom was on Lasix and warfarin. She also used home health and OT for many years to manage her condition. She did not have the other issues your dad has. He is managing a lot.
Good luck and let us know how it goes. We are here for you.
Lots of love and sympathy, Margaret
Is Dad still in rehab now?
It sounds like he has multi life-limiting issues & has entered an unpredictable health stage, even crises stage. You will need much more than 'ready to discharge' from rehab.
Don't let them bully you. You have his best interest at heart, keep that front & centre to give you confidence when dealing with pushy staff. Mention *safety* a lot. Ask for full information about his situation, what level of care he will need, if any after-care options are provided eg nurse visits for observations.
Also ask what are the options once his care needs exceed home. Is there respite or SNF?
Because maybe you are at this stage now?
The CHF & renal issues can cause that slowness in thinking & confusion you mentioned. This makes everything harder & increases his falls risk (as I am sure you know).
It sounds like the SNF thinks this is a safe discharge because there is someone at home who can care for him.
Have you spoken to the Director of Nursing at the facility? It sounds like he should be sent back to the ER.
This facility has been awful to deal with to be honest. Getting information has been like pulling teeth and even then it’s the information they want to give.
I agree also about the ER. If he’s gaining a pound a day..on a fluid and salt restricted diet...WHY ISNT HE GOING BACK TO THE HOSPITAL??
I would not co-operate with any discharge plan without full information.
I have been in the situation where I was being pushed to collect a relative from hospital. Once I stated clearly that I would not be picking up, would not be providing transport, nor care at their home or mine & then asked to speak to someone senior, the staff member started listening.