My 97-year-old dad, with some dementia, just had hip-surgery, three weeks ago. Previously, he was at an AL place (where he fell) and was living with my 93-year-old mom. When he woke up from the successful surgery surgery, we thought, we was going to be okay as he was in good spirits and little pain.
He is currently at a rehab facility, about 45 minutes away. We visit him daily. Since then, he has fallen out of bed at least twice, he sleeps all the time, barely eats or drinks and lost 10 lbs in two weeks - and yes, he does get PT 1-2x/day - if they can wake him up. Despite a strong heart, we feel like he is slipping away from us, but the rehab facility said last week that this can be normal and we just need to wait and see. Two days ago, they finally gave him an IV of water and started him on Remeron (which might make him more tired and out of it?). Today my brother visited him and said this was the worst he has seen him.
When he is cleared to go home, we are hopeing the AL will take him back-which we would pay for a private caregiver (but we could only pay for part time as it is $$$). We are at peace with whatever happens, but we just want him to be comfortable.
I have so many questions - who do we ask for help and guidance on such matters: What if AL does not allow him back, what do we do? I believe he is dying and being at a rehab facility seems so wrong (my brother says at least he's getting 24/7 care). Can AL places deal with end-of-life care? Would finding an AFH be better? How do we know if the end is near (hospice has been requested and denied). Should we try and get him out of the rehab place to somewhere more comfortable and comforting? Or do we just go with the flow and wait and see (which sounds crazy to me)
I (daughter) am exhausted, emotionally drained and am sick myself from the stress of caretaking and navigating at this time.
Thank you ahead of time for any words of advice, experiences or direction you may have.
I totally get that this is like being spoken to in a foreign language. I used to say to discharge folks "pretend I'm an idiot. Talk to me like I'm 5."
- a broken hip past 85 CAN be a game changer
- a broken hip past 90 OFTEN is
- the acute stay in hospital is only for the ACUTE stage of the injury eg surgery (it can feel like being pushed out 😔)
- rehab CAN be suitable IF patient can cognitively participate ie is not confused, impulsive or has any delerium
- surgery, pain, trauma can all cause delerium
- delerium post operative can be on top of the dementia - can be very hard to distinguish, but
- delerium CAN fade OR
- delerium can exacerbate the dementia & even become 'the new normal' functioning level
- being in unfamiliar environments can ADD to confusion. This can ADD to falls risk (as you have seen)
- all falls are dangerous
- falls with injury requiring hospital treament again will add to the trauma
- this is known as a Chain of Adverse Effects, or
- a broken hip is also widly called by Doctors The Begining of the End (I know that sounds harsh, but I see it as Mother Nature doing what she must).
As far as pathways go;
Home: if independant.
Rehab: if needed
*with aim to return previous abilitiy - so this is why rehab would be tried* to give your Dad his best chance 🙏
Care: returning to their usual room can be better (if cognitively impaired) - adding physio visits, extra care as available/affordable
Comfort Care: Hopefully in their usual room. If not, a suitable location with the right level care.
I hope this boring list helps somewhat.
I am sorry this happened. ❤️
Your Dad has had a long life & it may be time to spend some time with him & ask him + your Mother what they want to do now.
Hope for the best. But be realistic.
I send (((hugs)))
There should have been a discharge planning meeting with dad/mom to determine where he was going for rehab, holiday or not.
Please remember that you are allowed to refuse to sign for discharge if you think it's unsafe. Keep saying the phrase "unsafe discharge" and make sure MOM doesn't get bullied.
There is a patient advocate department in every hospital. If you feel ignored, bullies, that's where you go.
Every rehab/nursing home has an ombudsman whose information is listed in the lobby. If you aren't getting anywhere with the administration, that's where you go for information and corrective action.
Finally, hospice is NOT just for cancer patients. That PA should be reported to her/his department chair.
Ask about "palliative care" as well. Hospice is palliative (as opposed to curative). If dad can't/won't rehab, I think you want to start thinking about comfort rather than cure.
Go over the PA's head. Find out what hospice organization(s) are already active in the facility and call them directly, asking for an assessment.
Regarding hospice, I have no idea why he was denied. The physician assistant (who works for rehab center) forwarned me when I asked if he could be considered. She said that the hospice was for cancer patients - and I said, he actually does have prostate cancer. Needless to say, after his assesement, they said no. Maybe they will reasses again - hopefully? The other issue (we thought it was a good thing) with my very stubborn my dad is he was pretty healthy - never been on a medication in his life, and did not trust doctors; so he basically never went to the doctor and therefore, does not have a relationship with his PCP or any other doctor - despite having excellent health insurance. My husband says he's an anomoly and he's fallen through the cracks - ha!
I appreciate all for taking the time. It is more helpful than you know.
My aunt begged me to insist as soon as she arrived in rehab. She was quite alert with some heart failure. She was correct about her request. She passed within 2 days
I find it absurd that your dad would be turned down for hospice, at 97, in his present condition! Speak with his doctor who knows him and get a referral.
I'd get him out of rehab and back to his AL asap once you get hospice on board, providing the AL will take him.
Best of luck with a difficult situation.
Does Mom also have Dementia? If not, she will be there to sit with him. A broken hip in the elderly is very serious and can cause death. If its found Dad is OK. I would not send him back to rehab. Its really no place for someone who suffers from Dementia. IMO he needs to be back with his wife and familiar surroundings. Rehab can be ordered to be done at the AL.
I don't feel comfortable going back to the hospital unless an emergency. We felt so unwelcomed there. On his second day after the surgery (day after christmas), the doctor said, he's ready to go/leave hospital. They wanted him out of there. That for me was disheartening - we didn't know where to go. After that, the nurses barely came by to check on him (and why I was there all day, everyday). I guess they have patients that stay a long time and they made it very clear we weren't welcome (this is in Bellevue, WA). We wanted him out of there too, but the case manager hadn't even contacted us as it was the holidays. Again, new territory for us and we didn't know what was going on. Fortunately, after the new year, the case manager contacted us. But this is a strong reason why I don't feel comfortable bringing him back to hospital. Again, I am not a hospital/healthcare expert and don't quite understand how all this works - kind of like deer in headlights.
Thank you for your info - it is very helpful and stuff I did not think about!
I cannot, to be honest, believe that Hospice was refused for a 97 year old not doing well after hip surgery. I would speak with the ordering doctor and try that again. And yet AGAIN if refused.
You are correct, the ALF cannot accept a patient at this level. Discharge may need to be to SNF (skilled nursing facility) or in facility hospice which is rare as hen's teeth.
It is common for falls to bring on, when there is serious injury, the beginning of the end.
I think that you have to leave this in the hands of the facilities for discussion. Soon they will be discussing discharge planning with you, and the options. But start yourself with contact Monday with the Social Workers at the rehab and tell them exactly what you have told us.
I am so very sorry.
Even in rehab my Aunt kept getting out of bed (which is how she fell at home to begin with). She was never on anesthetics so she didn't have hospital delirium or a UTI. She did pass away there exactly one year ago today, Jan 21st, peacefully in her sleep. We don't know the actual reason but could very well have been a clot, which is a serious and frequent aftereffect from a large bone break.
At rehab the hope is that they would teach her to pivot on that leg, which would make her a 1-person assist in transferring. I was in the process of interviewing facilities and it was difficult because she didn't really qualify for LTC since she kept getting out of bed. Anywhere, any level of care, she would continue to try to get out or stand up and keep falling and breaking her bones. It was a relief that she passed.
I think your Dad is closer to being a candidate for LTC but if he continues to get out of bed (he is not falling out, he's trying to get out), then like my Aunt there is no "good" place for him without a companion 24/7. At night, he will continue to get out and up. AL would no longer be appropriate level of care for him if he doesn't improve to the point of knowing to not get up and out. In MC, he'd need a minder particularly at night. I'm not sure about hospice... this is a conversation with his primary doctor.
I totally get what you're going through. You are doing your best in a very difficult situation. Please don't feel like you will make a "wrong" or "bad" decision -- it's impossible to know how to address this situation. I wish you clarity, wisdom and peace in your hearts as you work on his behalf.
Have you read about the side effects of Remeron? It will sedate him and that's not going to help with eating and drinking.
Has anyone in the rehab sat with him to help him eat his meals or prompt him to drink fluids? I would assume not.
Two falls out of the bed can be devastating for an elder - then add a recent hip surgery and it only stands to reason that he's not doing well.
Your brother, IMO is not correct - he's not getting 24/7care or else he wouldn't be in the condition that he's in after having lost 10 pounds in a couple of weeks.
I understand that you're stressed and exhausted. I get it - I'm my mother's 24/7/365 caregiver and it can be crushing. However, our elders deserve the best care that we can give them, and I suppose that a large part of the stress you're feeling right now is your dad's decline since his surgery.
If your gut is telling you to get him out of this rehab and into a place where he can get the care that he deserves, then do it.
And we sit with him and help him eat. The rehab place does not have the staff to help him eat. Thank you for sharing. My heart goes out to you as your mother's caregiver. It is not easy - at all.
If your dad was cheerful and in good spirits after surgery and THEN there was a change in his physical and mental status, something medical may have changed--a stroke, heart attack, a broken bone,-- something acute that is causing this lethargy.
Without a trip to the ER or a real workup with imaging and blood work, you won't know (maybe that was done?)
1. I would ask a different hospice organization for an eval. And get a detailed answer as to their denial. (Is it because he can't have rehab and hospice at the same time?)
2. If he keeps declining therapy, rehab will not be able to keep him; Medicare will not pay.
3. Sure, have the AL come in and assess him, but be prepared for them to decline readmission.
4. Get the rehab to lower his bed so he stops falling, or get crash pads put on the floor.
5. Start looking for a SNF; it sounds like that's what he needs on the short term.
Good luck! Keep in touch.
It is strange that he was doing ok after surgery - could be the drugs or that we were all (entire family) surrounding him right after surgery which made him so happy.
But as time went on, I think just being alone in the hospital at night, then in the rehab place (we are there, but not in the night and sometimes only a couple hours at at time) adds to his confusion. And this is hard. He wanted to live to 100 - ugh! But I think he is realizing that it is tougher than he thought (and on us!).
Plus often a fall is what will ultimately do an elderly person in.
Your dad being 97 is more than likely not going to do well, and more than likely hospice will need to be brought in. You say that hospice has been denied, but I find that hard to believe. I hope you know that you yourself can call hospice in for an evaluation. And if one turns him down(which I can't imagine why)call another hospice agency in your area, as all areas have multiple hospice agencies.
Your dad now needs to just be kept comfortable until he leaves this world for the next, and hospice will make sure that he is.
I'm sure that at 97, your dad is tired and more than ready to call it quits.
Best wishes in getting him the best hospice care, even if that means having him placed in a hospice home.
If your father does not improve and does not show progress in rehab he will probably need to be placed in a SNF ( skilled nursing facility ) as AL will most likely not take him back .
Some AL will handle end of life care if hospice is coming in . But then you still may have to hire supplemental aides coming in at least part of the time .