Tell me if this sounds familiar. You manage an aging parent's care. You help them with all of the things they need to get through their day or weekly life and spend a significant chunk of time doing everything. You've given up some opportunities in life, and tend to take on the lion's share when it comes to the patient's needs, even though you have siblings or other family members.
This is a very normal situation. And, regardless of how we might feel when things get stressful, it doesn't necessarily mean that your relatives don't care or are intentionally throwing you under the bus. Sometimes, it's a matter of personality. Other times, it's a matter of availability. Still yet, it can be a matter of mental health or just being completely overloaded at work.
There are a million different ways that this scenario can come about. Today, we're not so much focused on how this situation arises, but rather how to fix it. Because, issues of fairness aside, there's a far more urgent aspect to this which often goes overlooked: what if something happens to you?
Who's Left Behind
Caregiving is difficult under normal circumstances. But then, remove the primary caregiver, for any reason, and what does your family member's care plan turn into? If they're relying on you for proper dispersal of medication and something happens to you, then where will they be?
This is a scary thought. But sometimes, it can seem scarier to even address the problem. Avoidance becomes common place, and before you know it, there’s no way for another person to take over.
Furthermore, it doesn't have to just be a negative. What if you just need a break or a vacation? Now, we understand that many caregivers are there because a family can’t afford to pay an in-home care team, so forking out thousands for a two-week Caribbean cruise isn’t going to happen.
But what is possible is a little break, just every so often — maybe a few days to just get to spend quality time with the kids or binge watch a few TV shows. But the reality is that for many caregivers, even something as simple as that is completely out of reach. Why? Because there is no redundancy.
What Happens If...
So with that, we're inclined to ask — what happens if the worst happens and you get sick? In a positive scenario, what happens if you were to win an all-expenses paid vacation from The Price is Right? Or, more realistically, what if you got the chance to get away for a long weekend with the kids for the first time in three years?
All of these ask the same question: what's going to happen if you can't be there? How will Mom or Dad get their medication, eat their meals, get their exercise, or bathe? There are a host of things that you have to be around in order to do for the patient, so what is supposed to happen should something happen to you?
The answer is to come up with a plan. The initial reaction to a statement like that can be, "I'm already stressed to my limit, I already have all of this stuff to do, I can't possibly do another thing — even if it's just planning." We get that. That's why we've actually made this handy cheat sheet to help you plan!
We all plan differently, this is just one successful strategy out there. Hopefully, you can change this as you need to fit your own situation.
1. Document Your Activities
First and foremost, you need to get down some sort of written record of what you do to take care of your patient. A lot of times, caregivers keep these things completely in their heads. They just know what works from their experience, and no one wants to go about reinventing the wheel.
Don’t worry about crazy details and don’t worry about what it looks like. The important thing is that you get down the big stuff. Some people will find it’s freshest in their minds to record things at the end of the caregiving day. Some people will simply be too exhausted to get into it then, and will want to wait until the next morning to write out what they did the day before.
And still, some people will want to write it out as they do. Whatever works for you is best — just make sure that, for a week, you get it down on paper (or even better, in a digital, cloud-stored app like Your Care Card!).
This mainly will include things like important events and times. For instance, if your patient likes to start the morning off with coffee and watching the local news, then write down something like “Watch News, 8am.” Routines are especially important to document. If you do something like “getting meds ready,” that’s fine, too. Again, don’t worry about getting too detailed, we will cross that bridge later.
Make sure you get the big stuff for a solid seven-day period — but do the best that you’re able to. That might mean you only have Tuesday and Thursday, or Wednesday and Saturday. That’s fine, the name of the game is taking small steps in the right direction...with that mentality, you’ll eventually make it anywhere!
2. Review Your Log
Now that you’ve got about a week’s worth of information, start looking for the things that might require a little more detail. For instance, if you prepare your patient’s medication, the specific names and doses are a great thing to add after the fact when you can sit down and think about them. This will serve you well when going to the doctor, talking to other family members, or conferring with another caregiver charged with your patient. Some things to add might be grocery shopping items and average costs, specifics of a bathing ritual, or even what they like at certain meals. This is your knowledge, the goal is to get it out of your head and onto the page. Think of this step as “cleaning up Step 1” a bit.
3. Where Are Things Located?
Next, you want to put together a quick reference guide to where things are. For instance, where are your patient’s medications? Where do you normally find the remote control when it’s lost? Where are important things like medical devices or phone chargers? Think of the things that you and the patient use on a daily or weekly basis and add these items along with their normal locations. This will be useful when putting your plan together.
4. Think About What’s Missing
So now you have a log of activities, you have gone back and filled in specifics, and you’ve got a list of important stuff and where it’s located. Now what? Well, seven days of details create a snapshot, but you might not have captured a doctor’s appointment, managing bills and other finances, or something else more major that can get overlooked.
This step is all about getting the rare but important items that don’t fit nicely into a “weekly expectation.” For instance, what’s going on with your patient’s health? What medications are the doctors still testing dosages with? What’s the thing that the nurse forgets to check? Is your patient’s blood pressure unique to their situation? These questions and more are important to add. It’s ok if you forget something — this is a work in progress!
5. Document Medical Issues
Sometimes this is obvious, but not always. For instance, patients with a memory care disorder sometime have periods of lucidity where they are aware of what’s going on, seemingly as if they don’t have a condition. Still yet, there can be additional issues which compound others — such as an Alzheimer’s patient who is also managing diabetes or pain. These other conditions require close attention — too much or too little of their medication can be fatal. So it’s really important to note these conditions, along with the specifics of their needs.
You’re Now Ahead
If you have followed our handy cheat sheet, then you know what? You’re done with this first part. Now, this isn’t a plan itself, but it’s the start of one. We’ll be putting together an entire series on this topic, so don’t worry, more will come. The important part is that the sheet you’ve filled out with all of this information is not just a cheat sheet — it’s now the basis of your plan.
Take pictures of the front and back with your phone. Email the pictures to yourself. Save them in a safe place. There’s critical data in there that you don’t want to broadcast to just anybody, but you know, you could also send this to your family members.
Now, all of a sudden, the basis of a plan is there. It isn’t perfect, and there are likely gaps that need to be filled in. But the key information is right there for someone else. So even if, heaven forbid, you were to come down with the flu or injured in a car accident, someone would at least have the basics they would need to take care of your loved one.
Stay tuned — next time, we’ll get deeper into this whole planning thing, and how to start putting together a list of people who can back you up and give you peace of mind. Until then, don’t forget to grab our handy cheat sheet and be on your way to getting that plan down!
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