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.