
5 Safety-First Strategies for Your Parents’ Hospital Discharge
You’ve navigated your frail parent’s hospital stay and now it’s time to go home. You probably can’t wait to leave but …what’s coming next is extremely uncertain. Leaving a hospital with a frail older adult in tow is like stepping off a cliff blindfolded.
This blog is all about resources and tips to help you with this transition but first there are two things to know that will help you understand my advice.
Thing 1: The hospital discharge process is arguably the weakest part of our entire healthcare system.
I know this sounds backwards, but the less time your parent is in the hospital, the more Medicare money it gets to keep. AND, the hospital bottom line is not really affected by what happens to your mom one nanosecond after she is wheeled out the door.
Thing 2: Hospital discharge planners are very nice people but they are not your friend
The hospital discharge planner works for the hospital. It is not her job to pave the way for you and make sure you have what you need. It is her job to get you out as quickly as possible.
What this all means is that the burden is yours: for getting your mom safely from one place to another, for helping her recover from the hospital stay and for finding a new normal for everyone. It’s a lot of work and a long process.
Unfortunately, there are precious few good ways to connect quickly and easily with the help you’ll need when you get out. Post-hospital care for the frail elderly is really the dark abyss of the healthcare system.
That’s just the way it is and one of the reasons we started daughterhood! Part of our mission is to connect you with other women with whom you can trade information about resources. The idea is that we can stand up together and force the system do a better job.
We are #daughterhood #transforminghealthcare. Tweet it!
Insider Tip: Over the next few weeks, I’ll be talking a lot about building local daughterhood communities so stay tuned.
In the meantime, here are five concrete things you can do that will create a safety net of sorts so that leaving the hospital will not feel like such a free falling feeling.
Get a Good Plan BEFORE You Leave
The very first thing you want to do is… have the hospital to make you a “discharge care plan” that clearly tells you what you need to do, how to do it and when.
For example, say your mom fractured her hip and now will need physical therapy. How much physical therapy will she need, for how long and from whom? All of these questions need to be answered by professionals before she leaves the hospital.
Of course this seems like good common sense but hospitals vary in how much attention they pay to this. So, you may need to force them to give you a good plan – and more importantly – TO MAKE SURE YOU UNDERSTAND IT. Just because a nurse says, “this is easy” (as she quickly instructs you in administering an injection (!)) doesn’t mean it is.
This checklist is a good guide. Print this out and sit down with the discharge planner, and/or thethe doctor on staff to help with these things. Be pesky. As my friend says: ask, ask, and ask again.
Be Pro-Active on Rehabilitative Care
Now, there’s a decent chance that the hospital or your doc will tell you that your parent needs to go to another facility for “rehabilitative” care. There are two main types of places where that usually occurs: a special rehabilitation hospital or a skilled nursing facility (i.e., nursing home). Of those two, the vast majority of patients, getting rehab care in a facility, get it in a nursing home.
But DON’T worry. This does not mean that’s where your parent will end up permanently. Most rehab patients go into the skilled facility for an average of about 25 days and then go home. Medicare covers full cost for the first 20 days and then there’s a copayment.
But here’s the real challenge – These places are not.created.equal. Some are GREAT and some are really, really bad and sadly, you can’t rely on the discharge planner to keep your mom out of the bad places. Also, there’s probably not going to be time to traipse all over town checking them out.
What to do? Well, the best advice I can give you – which is not great but it’s all we got right now – is to go to Medicare’ Nursing Home Compare and look for the “four or five star” facilities. The five star rating will NOT guarantee you an awesome place. But, generally speaking, one and two star facilities should be avoided.
And, if the discharge planner is forcing you to leave before the good facilities have availability, refer back to my advice for slowing the process down until there’s a bed ready.
Prepare to Get Help at Home
Whether you stop at one of these facilities on your way home or you go directly home, you’re certainly going to need some help when you get there. Managing a frail elderly parent at home directly after a hospitalization is really challenging. There’s a lot to do and there may be another parent already at home who needs help. Please try and arrange for some help in the home at least for a short period of time.
Remember to never forget that you’re playing a long game here and to get through this, you need to take care of yourself.
Medicare will pay for some home health care in certain circumstances that would literally take me 10 pages to explain. I could do it here but then you’d fall asleep and not read all of the important information below.
Here’s the short version: your mom has to have a doctor say she can’t get out of the house (called being homebound) to get the nursing-level care she needs. In other words, she has to NEED a nurse to be involved. If that’s the case, though, Medicare will pay 100 percent (no copay!) for some part-time combination of therapy, nursing care and an aide to help with basic care and recuperation for a short period of time.
It’s important to note that like the skilled nursing facilities, not all home health agencies are created equal so check out the ratings on Medicare’s Home Health Compare.
If your mom doesn’t qualify, you can pay a home care agency privately for “personal care aides.” These are often lovely people who are trained to do some very challenging and personal things — like getting a recuperating person out of a bed and into a chair. Unfortunately, the average pay for this is only about $10 — $15 an hour. That price point means that occasionally the person might not be so lovely. I recommend sticking with an agency for this short term help as they do the background checks, training and all the challenging employer-related stuff.
Let’s all just pause for a moment while we silently decry the complexities our current system of aging services….sigh.
Be the Medication CZAR
Let’s say that, up to this point, you’ve got it all planned… and set up as best as possible. Now you gotta literally get your mom and all her medications safely from here to there, wherever “there” is.
Keeping yourself and everyone else straight about your mom’s medications will be a moving target. This is a very big job and it has two main parts:
- Keeping a current and up-to-date list of current medications, erasing, crossing off the ones that are dropped and listing the ones that are added.
- Bringing this medication list to every new stop in the health care assembly line.
When your mom gets home, you’ll especially want to check in with the doctor because you’ll have a handful of new prescriptions for pick up at Walgreen’s or CVS and your mom will have a bunch of prescriptions in her medicine cabinet from before she went to the hospital.
This is a super dangerous transition. Have the pharmacist and the doctor to guide you through it, to make sure you know how to help your parents follow the directions and take everything as it’s prescribed and to discard old prescriptions. Here’s some great advice from the United Hospital Fund’s Next Step in Care on how to approach all of this.
So in terms of actually tracking this stuff, I gotta say that I am not a big fan of all the “apps” that are cropping up to do this – just because when I have to enter data into my phone, I find it awkward and frustrating. So, if it was me, I’d use this paper form, also created by the United Hospital Fund’s Next Step in Care.
However, if you want the convenience of having everything on your phone, check out this article, which lists and rates apps for caregivers.
Make a Doctor’s Appointment
Sounds simple but it’s so, so important. The research shows that going for a follow-up doctor’s appointment prevents landing back in the hospital. So, make the appointment!
It’s also important that you’re ready to engage in a meaningful way with that doctor. She’s really relying on you to report on your mom’s situation. One of the geriatric care managers I talked to a few weeks ago told me that she types up a one page list of all her observations and concerns, in addition to the medication list, and brings it all in with her.
That’s good advice but you can also use this post-discharge appointment guide. Arrive at the doctor’s office with this and the medication form and you will be in better shape than most people.
Lastly, Don’t be Hard on Yourself
I really want to give you a little perspective here…. this whole hospital to post-hospital process sucks for you and your mom AND ALSO for every other frail elderly hospital patient in the entire freakin’ country. Seriously. The federal government, as I write this, is spending tens of millions of dollars trying to straighten it out and make it better.
So do not feel bad that you can’t make this smooth sailing. This is one of the roughest patches of water you’ll encounter in your entire daughterhood journey. Remember: All you have to do is to keep paddling!
In the spirit of transforminghealthcare, share with us the one thing you’ve learned in managing through the hospital to home transition, and what you wish the hospital or rehab provider could have done differently to make your experience easier.
The rehab facilities are all so different… even though the place may be clean, doesn’t mean that the staff are not seriously overworked and tired… keep tabs on your parent while there…
so TRUE! Thank you!!
Hi Michele-
My mom was discharged prematurely from the hospital this past Friday. She has fractured her ankle with only a temp cast on. My brother was with her during this time, but didn’t realize that the hospital gave him the responsibility of getting everything set up, including the ortho appointment next week. She is 80 years old, with rheumatoid arthritis, and can’t even stand to move from the bed to the wheelchair. We’ve gotten a hospital bed with a commode. The hospital told my brother that Medicare would not pay for rehab for her ankle due to not being admitted for three days. She was in observation for 2 of the three days. I need to get her in a 24 hour care facility. She needs to be casted, and two people have to help her get up. Can you give me some advice on how I can get her in a facility?
I feel incredibly lucky to have just stumbled on this article and, through it, to this community! Suddenly I feel not quite so alone in caring for my mom. Thank you, thank you for being a much needed port in this crazy storm my mom and I are working so hard to navigate our way through!
Can anyone offer insight on what type legal aid/firm is needed specifically for a hospital almost insisting an 84 yr old patient return to a Sr home for “therapy” to get stronger after the patient and family have expressed this is not their desire. It never was, they transferred her there a few weeks ago and that ended in a fall, loss of cognitive skills and deteriorated much of the woman we knew. (and that was only supposed to be a temporary place for therapy, it did the exact opposite) In addition, …and this is only speculation, it appears they are keeping her at the hospital longer to somewhat decrease her spirit knowing she will appear even weaker and in need of more medical care. She is on limited time, so heartbreaking to even write that but it’s a fact and I do not feel anyone has a right to tell us where she should be during her final time when she can be with family, and surrounded by familiar things in her own home. Home health has accepted her, and she has said numerous times she will never ever want to return to a facility such as a “therapy” benefit type home. Her dementia is worsening and the hospital I feel is increasing it at a more rapid pace…
Long story short, and it’s a time sensitive…(I am her POA, but that doesn’t seem to matter) she was scheduled for discharge and now they are not giving firm answers about it. How can I help her get discharged and home safely legally or otherwise ASAP?
Thank you for your email and huge apologies for not getting back sooner. It may be too late now but they cannot force your mother to a skilled nursing facility. If you want to take her home, you certainly may. Home health is likely to be of minimal assistance but it sounds like there is family support and the desire to provide necessary care. You may also want to inquire about Hospice – which is a Medicare benefit that can provide more in home support and will reduce the unnecessary interventions. I’m so sorry you’re going through this.
I live in Kremmling, Grand County Colorado. We are here because there was not much choice after we were asked to leave our last home. At our last home we had a home health care provider.
She was wonderful , 5 days a week to assist with my moms care . I was able to work and not worry about her.
Once we got to Grand County there was a spot open in Cliffview assisted living. My moms stayed there for about 10 days and I and her companion dog lived on the streets ( hotels, couches, and in the car). Then we were told of an idea by the Senior living property manager. The manager said there is an opening in an apartment We went to look at it , it was perfect , on the first floor with a sliding glass door. I thought this to be perfect. My mother would be able to let her dog in and out. In our home she would do this as a kind of therapy for her. Up and down several times a day. ( my mom is a 15 year multiple myeloma survivor.) Well when we actually got into the apartment we got a second floor apartment. She could not do any of this ,the elevator was too far from the apartment door. One day I left her alone with her dog and the dog barked a lot. A neighbor made a formal complaint. We were reprimanded for the incident and I was told to take her dog everywhere I went and not to leave the dog with my mom . ( the dog ,Named Happy soon was use to the place and not a bark out of her.
A month has gone by and it has been a difficult time . I work 50 miles away and have found out that Grand County has no help for the elderly. They just stopped a home health care provider and visiting nurse programs. Without these programs my mom has suffered in her care . I am a 54 yo male , her only son. I am not able to give the degree of care my mom needs . On a night when I came home I found our door open and my mom wrote a note that said Please Help Me. The next morning I called 911 and got her into ER at Kremmling Memorial Hospital.
My mom is now there. That day we arrived there , the doctors found nothing seriously wrong except she needed care , bathing, ( they asked when she last had a bath/shower.I Said A While I need help with that. Her oral hygiene and food intake needed attention also. The kept her there waiting for a blood culture ( that they contaminated ) to come back . It came back negative the second time . Then they asked me what I wanted , if I wanted her to stay in the hospital under long term health care , You see Grand county also dissolved its hospice care too. So now she is in a room with a roommate. The match is not good . The lady has the TV on all day and very loud. I told the nurses that my mom doesn’t like that loud noise blasting. Their response was nothing we can do , we try to turn it down but the lady turns it up.
I now have to pack all of my mom’s stuff and mine and vacate the apartment . I was only living here as her caregiver. I have no money and will be living in hotels and streets again. She wants to get out of the hospital . I want her closer to my work ,so I don’t have to travel so far to Kremmling ( kremmling is in a very rural location). The hospital employees have not been acceptive of her moving. Or I can bring her back to the apartment and quit my job to care for her or move to another county that has home health care. We are in a terrible situation . Can someone help us ?
Your information and concerns in this area of health care for the older adult is very timely. As a case manager for the older adult at Kaiser San Rafael in California, I would caution against giving information in such a negative context. It not only frightens adult children and their parents but in many cases it’s incorrect. I was also a discharge planner and in over 40 years of nursing it was probably my hardest job. These people are your friends if start with positive attitude. They will tell you the better skilled nursing homes and they will tell you you can appeal your discharge and stay in the hospital till that process is complete. Starting this relationship upon admission is extremely important. Also, if you have a total hip, the physical therapist will give you a complete f/u plan, you will be given a f/u appointment with your doc on the day of discharge and a pharmacist will come to your bedside at discharge to discuss all your meds. I’m sorry you had this negative experience but not all health care systems are created equal. However, your attention to the task of assisting our aging parents is extremely important and I applaud your enthusiasm.
My mother went to hospital on Aug 31 2016 after suffering a severe seizure. She was in ICU for a week, on a ventilator. She’s 75…on Sept 16th she was sent to a SNF…She developed a stage 4 bedsore, blood hemoglobin dropped to 6.1 and she got a cdiff infection. She ended up getting a blood transfusion and since the first SNF didn’t hold her bed, she got sent to a second SNF. At the second SNF she got the cdiff infection again…ugh!:(
All the while, my mom’s 100 days of rehab will be up on Weds, Dec 28th so my mom will be sent home, bedsores and all. Thankfully she can still communicate and has most of her cognitive skills, but physically she’s a wreck-just a shadow of herself. She’s lost over 30lbs and cannot walk. (She can stand for 30 seconds holding on to a walker). Now I have to try somehow to take care of her. I’m 51, not in the best health myself…My employment record is less than stellar; however I enjoy my part-time job that I’ve had off and on for about 10 years and I’m very upset because II’ll probably have to leave for good to take of my mother. I don’t want to be stuck after my mom has passed and be subjected to age discrimination. Anyway, I’m so scared of the future. I don’t want my mom stuck at a nursing home til she dies, so Medicaid is not an option. Plus, I would never be able to see my mom if I’m working 40 Plus hrs a week trying to make up the loss of her social security check that the nursing home would take if she applies for Medicaid. There are no other family or friends to help. My sister, father, aunt and uncles are all dead and the few cousins out there live far away. Also, we live in a second story apartment and the SNF was saying we would have to move to downstairs unit otherwise they will tell Medicare we’re going against doctor’s orders and my mom won’t get homecare! How cruel…Apartment manager says it would cost at least 500$ to change units due to repairs and maintenance. In the state of Nevada landlords can do that. I related info to director at SNF and now they’re saying “Let’s see what the doctor says.” I feel like my nightmare is just beginning. I pray that I can at least keep my mom out of hospital for the required 60 days that Medicare demands so she can get her 100 days of rehab back if needed….**sigh**
How do I get my mother back into the specialty hospital she was discharged from? The rehab she is at is not skilled enough to take care of her trach care and I feel she has gone into a deep depression mentally and declined physically since moving to this rehab only less than a week ago to this day. I work at a hospital myself and I must say this place is horrible for the care my mother needs. One night there was one nurse to 16 patients and my mother has a trach a feeding tube but is only 64 and can communicate. I can’t sleep and my heart is heavy. Please help, I need my Mom.
I understand that’s what they trying to do to my mom now that’s why I’m standing my ground
Did you figure out what to do? My husband is in the same position. I am going to the nursing home 3 times a day to catherize him myself since they have no idea what they are doing, nor do they care. I am getting about 4 hours of sleep a night, have to work and then try to take care of him at the rehab. My husband continues to lose weight, does not eat, and they did not keep track of his Coumadin and now his blood is way too thin. I have no idea what I can do. I have called the doctors, and they don’t even return my calls. He cannot stand on his hip surgery, so going home is not possible.
My grandmother was recently put into an assisted living. She was in the hospital and then moved straight into assisted living. She is so upset that she didn’t even get to go home first. NO ONE had any idea this would happen. The hospital told my uncle it would be easier on my grandmother to go straight to assisted living and not let her go home AT ALL. I feel like that is such a horrible thing to do to someone! When I talked to my grandmother, she started to cry. She knows she needs to have the help, she just couldn’t believe that she never got to go home first. Is it really true that it’s easier on her to never go home and have that closure?
I need advice…my mom has a substance abuse problem …but she also has liver disease, diabetes ,hep c..etc… when the two mix it puts her in altered status…really confused but she hasn’t been diagnosed with dementia or Alzheimer…but she speaks for her self leagally..so i cant help her… because of that drug demon…she doesnt want any help…i wont give up on her tho..thats my mom.. since she speaks for her self i cant get power of attorney…well maybe thru lawyer… cant put her in rehab..she wont go
…shes killing herself what do I do…please noooo negative comments!!!!
Sometimes it IS easier to not go home first. We have two instances of individuals in our family who fought the idea of an ALF and wanted to be at HOME, but the care needed and attention required did not coordinate with proximity to other family members. It is heartbreaking to hear them wish for home, but it also heartbreaking to have a parent pitch a fit at the door of a center and then get denied entry. That situation required a sudden change for ALL parties and caused great distress, too. Occasionally we have to make those decisions for us, too. We need to have the dialogues that permit us to know what others have done and how to make things work for our loved ones. That appears to be the focus of this forum and for that , I am thankful.
Very helpful and timely advice. My sincere thanks. It helps to not feel alone. Wishing the best to all or you out there working your way through this difficult time as a caregiver. I can say only this, “You are caring. What you are doing is hard work but it is important and appreciated. You are doing just fine. We are here thinking of you and with you!”
Thank you for this beautiful article!!
I don’t know what made me read your article now, but, I’m glad I did. My mom ended up in the hospital on August 4, 2018. She had fluid removed from her lung earlier in the day as outpatient. This was the fourth time. But, this time, she bled, and, ended up in the hospital. She stayed there for one month. They released her to a nursing home rehab facility. There she got two weeks of rehab. Then her insurance decided that was enough. I didn’t agree, appealed it, and, it was upheld. I had one and a half days to make arrangements to bring her home. She had already been living with me, so, that wasn’t the problem. Her inability to walk and bath herself was the problem. But, I brought her home and did the best I could. Mom passed away one week and a day later. That was Sept. 24th. I just want to go back and maybe do some things different. But, I didn’t know any better. I miss my mom so bad that I have a hard time just getting through most days. I HATE hospitals and insurance company’s. We had a bad experience with my dad also when he died three years ago. Sorry, I just needed to vent.
Please I need help and or advise…words of wisdom…anything… this is way beyond my scope of normalcy. My grandmother has early stage vascular dementia . She is refusing rehab and wants to go home. the elderly affair advocate said its an unsafe discharge but legally they cannot hold her
Hi – Sadly this is really something where there’s nothing you can do at this point but it’s really really important you start talking to an elder care attorney about power of attorney and guardianship issues.
I appreciate the informative article and I like how you mentioned that getting a plan is important for senior nursing care. I like how you made sure to take note of understanding the plan as well. If my dad was sick, I will definitely get a good rehabilitative care facility to take him and preferably a one nearby.
My mom had Covid – 19 and at the time we found out we didn’t know she had diabetes, we had been taking care of her for about 5 days and she wasn’t eating finally she became a little incohearent so I called the ambulance and they came and got her. She spent 6 day’s in ICU in Minnesota then two more day’s in a covid 19 wing. They told us she would need some transitional care and gave a only two choices both being nursing homes. So she got there and every morning she would call me and ask how her cat was doing and the dog, it went on for 5 day’s then all of the sudden she quit calling. For the next few day’s I would try to call her room but no answer so I called her social worker and left two or three messages and my sister did the same, It’s been like 4 or 5 day’s and no response. I know the nurses are taking good care of my mom but it’s the people higher up that are the problem. It seem’s to me it’s all about the money. My mom’s medicare coverage at 100% runs out on the 15 of this month and we have talked to some people there but all they keep saying is her PT is ongoing. Well I found out her oxygen saturation is 95 92 which they are saying is bad but that isn’t that bad, I understand she is a little weak but they aren’t doing anything that we couldn’t do here at home . me and my sister live with her and are here 24/7 like I said I talk with her almost every day and she is ready to come home but they won’t let her. Now I tried to call her the other night and someone picked up the phone twice and hung it up on me. I want to get her out of there now. she doesn’t have a primary doctor to discharge her and I don’t know what to do ? please help
The skilled nursing facility cannot keep her there if you want to take her home. It’s very disturbing that you cannot get anyone to talk to you. I have a few ideas but I’m not sure which one will work best. You might try calling the “Administrator” which is the top person managing the facility and tell them you’d like to have a written explanation of why your mother needs ongoing care, and would like to see her “care plan,” and that it would be your top choice to discharge her as soon as possible. You could even request a meeting with the “care team.” If you can’t get anyone on the phone, you can always go to the facility and demand to talk to someone (masked and outside). Also, the nursing home is required to post where you can file a complaint. I hesitate to suggest that you escalate by threatening to complain but know that’s an option. I’m really sorry this is happening. If you are comfortable sharing with us the name and location of the facility, please do. It’s always possible I’ll have another idea when I see the location as so much of this varies from place to place. One final idea is check out this website. The 1-800-Medicare number is actually pretty good: https://www.medicare.gov/talk-to-someone
Let us know what happens, Anne