Caring For Aging Parents Playbook
This is a guide for planning your caregiving journey and getting an idea of what it'll be like. It's not easy, but we hope this helps. It can also help to connect with people that are dealing with similar circumstances. If you would like to be connected to other caregivers, email us.
Here we cover:
Step 1. Understand why you want to provide care
Step 2: Figure out now what you are prepared to do
Step 3: Know what "caring" means
- The Instrumental Activities of Daily Living
- The Activities of Daily Living
Step 4: Identify what you can help with, and find solutions for what you can't
- Ideas for the Instrumentals
- Meals & Groceries
- Routine home maintenance
- Billing management
- Communicating with friends and family
- The Activities of Daily Living
Step 5: End of life planning
Step 6: Don't forget yourself
Step 1 - Understand Why You Want To Provide Care
Your motive for providing care for family is going to end up being the bedrock of your ability to give it. Like any obstacle, defining why you want to undertake taking care of elderly parents helps you get organized and stay motivated when the journey gets hard. A good motive to care for family is personal, dependent on the context of your relationship with your parents or aging family members and should also establish boundaries of what you will and will not do.
Most caregiving starts suddenly and slowly boils up in intensity. If you have the time, use it now to establish your motive for family caregiving and think through a few of the following questions:
- Why do I want to care for my aging parents? Do I feel a sense of duty? Do I want to "pay" them back? Would I want to be helped in their place? Do I feel as if helping care for them will teach me more about myself? Do I want to become a caregiver for a family member so they know that I care? Do I want to repair my relationship with my parents? Is it a mix of things? If so, what mix? Be as specific as you can about this.
- Based on my why, how do I feel like I need to express care? Do I need to be physically present to care for family? Do I want them to see me providing care? Do I want them to know I'm thinking about them? Do I feel like I need to make personal sacrifices? Will I provide financial assistance? Will I provide administrative assistance?
- What would have to happen for my family caregiving to lead to resentment? Would I resent them if caring for them led me to quit my job? Would I resent caring for aging parents if I had to spend time away from my spouse or kids? Would I resent them if they weren't thankful? Would I resent them if they began to fade cognitively? Would I resent them if caring for aging parents cost more than 20% of my retirement savings?
Step 2 - Figure out now what you are prepared to do
Based on how little training exists about taking care of elderly parents, it's not a life stage that most people think about. However, just like any other life stage - there are things you can plan for and strategies you can put in place.
Caring for aging parents or loved ones experiencing disease progression isn't the same as taking care of someone who has suffered a temporary medical emergency. The level of care will gradually increase over time. If you're not looking out for it, it's possible to slip into providing progressively more taxing forms of care without realizing it.
If you are, or are about to be a caregiver for a family member, take the time now to understand your limits. Knowing what you are uncomfortable with will help you achieve the goals you want to achieve without burning yourself out or jeopardizing the existing relationship you have with your parents.
To drive this home, here are some example questions you can ask yourself, based again on your motive for providing family caregiving. If you feel a sense of duty, ask yourself, "What exactly is my duty? What are its parameters? To what degree of self sacrifice does my duty call me to do?"
Maybe physically being with your parents every day is no problem, but paying for all their groceries would put you in a position where you're growing resentful. Maybe calling your parents at 6 pm every day creates a conflict with your other familial duties, but taking on the administrative work of managing your aging parents' finances every weekend wouldn't be a problem.
You should keep asking these questions until you can find a limit, you should be able to say, "I should strategize to avoid needing to do [x] because [x] would be really hard for me and strain my motivation to provide care for family and could lead to resentment."
You should expect that as your parents' needs change, and your ability to provide care changes, your motive may change too. Be ready to re-evaluate what you feel like you need to do when it comes to family caregiving and to what extent regularly.
Step 3 - Know what caring means
Aging can be loosely defined as collections of activities a person loses their ability to do independently over time. You can strategize now and identify solutions for many of those activities. The caregiving industry typically organizes those activities into two categories - the Instrumental Activities of Daily Living and the Activities of Daily Living.
The Instrumental Activities of Daily Living
The Instrumental Activities of Daily Living are the first to be lost, and they gradually decline over a period of usually about seven years. Typically a person can get by when they've lost some instrumentals, but it challenges their ability to live independently in their community. Losing two instrumental Activities is highly correlated with moving into a nursing facility within six months.
The instrumentals are:
- Managing transportation
- Planning and preparing meals
- Planning and conducting shopping
- Managing and collecting medication
- Routine home maintenance
- Managing finances
- Regularly connecting with your community
The Instrumentals don't always require a person to be physically involved in helping parents aging. Most of these have solutions that can be planned for. They also typically fade over long periods of time. Looking back, most family members can remember spotting some unusual behavior in their parents - like their parents saying they are uncomfortable driving long distances at night, or eating the same things over and over for multiple meals. If you have spotted things like this, you should probably start thinking through some of the points raised in this playbook. It's unlikely anything needs to change this week, but likely challenges will develop within the next couple of years.
The Activities of Daily Living
The Activities of Daily Living (ADLs) are the things that a person needs to be able to do to survive. Losing just one of the Activities typically means a person requires daily care. They are:
- Walking without assistance
- Toileting independently
- Bathing independently
- Eating independently
- Rising up from a chair or bed without assistance
- Taking medication correctly as prescribed
- Dressing independently
Today, a caregiver is usually needed to help with the physical components of managing the Activities of Daily Living. Unlike the Instrumentals, changes in ADLs occur suddenly. Most family members realize there is a problem when a parent or loved one falls and has a brief period of time where they can't walk independently.
From the first loss of an ADL, the average time to needing regular physical support is about six months and our recommendation is that you should spend this time thinking through solutions to all the Instrumentals and the ADLs.
No one is ready when it comes to taking care of elderly parents, and that's why this document starts with trying to get into the appropriate mindset. Knowing what's coming can reduce some stress, so take the time now to think through how you can help solve some of these challenges. We'll discuss each of them in the next section. Remember, you don't need to tackle all of these right now; you have time to strategize and think ahead.
Step 4 - Identify what you can help with, and find solutions for what you can not
Are there other people you can call in for support with family caregiving? Other family members or community members involved in your parents' lives? Think about this list as a checklist and try to work through it until you have a plan for each one, even if it's not fully baked. GoGoGrandparent offers a number of family features, like split payments and notifications, that might make it easier when coordinating care for family and taking care of elderly parents. Here are some ideas we've seen others do:
Ideas for the Instrumentals
The Instrumentals are in general a lot easier to solve without in person physical assistance of either yourself or even others. These are mainly "management" in nature and affordable solutions do exist that have been proven to effectively solve for them.
Transportation is usually the first Instrumental activity to decline and it takes the longest to do so. In the absence of an accident, it can start gradually with discomfort driving long distances at night, progresses to discomfort with all long or unfamiliar distances, to discomfort to nearby but less frequently traveled places, and eventually to not driving at all. This is the Instrumental you should pay the most attention to, because at a certain point continuing to drive can put more lives than just your parents' at risk.
It helps to solve specific problems: How will you help your aging parent get to an unfamiliar doctor's appointment? Is there a neighbor you can call to take them shopping regularly? Based on your income are you eligible for public paratransit services? Based on your loved ones medical condition and their state's Medicaid plan, are they eligible for Medicaid transit to medical appointments? If paying for transit privately is a solution, consider GoGo rides for seniors. We help tens of thousands of older adults at various stages of aging access affordable and available on-demand transit solutions like Uber simply, safely and reliably without requiring a smartphone.
Meals and Groceries
Managing what to eat, how to prepare it and when to buy the ingredients usually becomes difficult with the loss of transportation. In addition to difficulty getting to a grocery store, there is usually a narrowing of possible meal options that can be cooked independently. Meals that take more effort to prepare are usually the first to go, but simple meals can sometimes lead to a low nutritional profile that advances decline.
Depending on your parents’ income, they may be eligible for local county programs, or national non-profits like Meals on Wheels.These programs provide meals that are easy to prepare and an important daily check-in with your parents. Enlisting a neighbor or local cook to bulk prepare microwaveable meals that are delivered once a week is also a great option. Like transportation, we think GoGo is an excellent private pay solution. We can arrange a local cook to bulk prepare reheatable meals that match a client's dietary restrictions, and/or work with delivery partners to deliver on-demand hot meals for seniors from local restaurants near your parent's home. We make grocery delivery for seniors incredibly easy, monitoring how stocked your parent's fridge is and making sure they always have what they need. Your parents can order over the phone, and then both you and your parents can see and manage the groceries that are set up for delivery each week through an online portal we make available to our clients.
As we lose our reaction speed, energy level and field of awareness it can become difficult to stay on top of the sometimes weekly trips to a pharmacy to manage medication. If your parents' local pharmacy can't deliver, or can't set up automatic delivery, consider transitioning to an online pharmacy that can deliver. GoGo can help with this too with medication delivery for seniors - we can transition prescriptions to mail order on a client's behalf, or if a prescription is not available via mail order, we can pick up and deliver prescriptions from your parents preferred pharmacy.
Routine Home Maintenance
Parents aging lose their ability to manage their home gradually, but it is usually noticed when a major home maintenance event occurs. One of the biggest reasons people need to move into a nursing facility is because they can't keep up with sudden home maintenance. As soon as someone begins to show the signs of aging, consider doing a review of their home and anticipating as much maintenance as you can. Hiring a weekly cleaning assistant can be a great help and will provide extra eyes on your parents. You should expect that "cleaners" automatically become the default trusted contact that provides more care for a parent over time, so you should screen for that as you consider applicants. Cleaners can have unpredictable schedules so it doesn't hurt having a backup on hand once their responsibilities increase. GoGo can help with home services for seniors. We manage and find home staff on behalf of our clients. We screen and background check local providers that we've worked with before in our network and make recommendations for people who can start with a cleaning task and take on more caregiving tasks over time.
The weekly and monthly cycle of paying utility bills and other expenses eventually becomes hard to keep up with. As you notice the signs of parents aging, ask if you can add yourself as an authorized user to your parents banking and credit accounts. If you have caregivers in the home, consider giving them a temporary credit card that you control and whose expenses you can monitor. You may want to think about getting power of attorney, which can help with managing your parents assets responsibly. Like most of the other Instrumental activities, GoGo can help with this too. We can issue credit cards to caregivers or trusted contacts and monitor the purchases made on those cards to check for unauthorized transactions. We can also pay utility bills on behalf of a client and keep the lights on.
Communicating with Friends and Family
People need to feel a sense of connection to others. A lack of social connection is as bad for someone's health as smoking daily and carries the same morbidity risk as Diabetes. Parents typically like to hear news about people they know and communicate with friends and family. Making time for social visits becomes incredibly important as one ages and continuing to have that time can define quality of life. This could be going to church every Sunday, going to a salon, getting lunch with family regularly, etc. Local senior centers often offer weekly classes that give people a chance to meet and engage with others. Daily calls from family, even for 15 minutes can make the difference.
Try to understand the networks of people your parents value and plan for ways to keep that contact going. If your parents are unable to do some of the things they love doing, try introducing them to new activities they can enjoy doing or watching.
Ideas For The Activities of Daily Living
The activities of daily living are harder to solve without physical solutions. The solutions we have today include hiring a caregiver, moving in with a family member, or moving someone into a retirement community. Depending on the income of a loved one, Medicaid does cover these costs. Depending on your state there may be programs available where a family member can get paid and get health insurance for taking care of a loved one full time.
For most people, they don't want to immediately start with a full-time caregiver. It's expensive and also intrusive. GoGo finds that most people appreciate having a "bridge" - someone who comes by once a week, and then twice a week and more as needed. This person usually starts with a parent as a "cleaner" or "assistant", but you shouldn't try finding people that are looking for only cleaner or assistant work.
GoGo can help you find the right people for this sort of role. We have an extensive network of thousands of contractors that we can work with who have done these sorts of tasks before.
Step 5 - End of Life Planning
Start talking to your parents about their wishes and intent as soon as possible, even before it comes up. This process is fraught with angst. Understanding what your parents want will bring you a sense of fulfillment as you work through this.
Some ideas for things to bring up:
Who would your parents like to make their medical decisions if they become unable to do so? Who would they like for their financial choices? Are there any treatments they would not accept? Would they like to be resuscitated if they stop breathing or their heart stops? Where ideally would they like to be at the end of their life?
Have they organized their assets and liabilities and gone over them with their chosen delegate? Does their chosen financial delegate have access to their accounts? Does their power of attorney know where their will is, birth certificate or any other end of life documents. Are all their assets titled to be disbursed as they wish? Do all their beneficiaries have the facts they need to claim their benefits? (They may also want to set up a living trust to avoid probate on their assets).
What do your parents want for their funeral? Who would they like to manage the expenses of the funeral? Do they have any unfinished business in their relationships that they would like to acknowledge or mend? Is there anything they would like to say or write down so that future generations know them better? Would they like to speak with a religious figure or counselor to get answers to questions about death?
Here is a great online resource that gives you an idea about questions your parent may need to answer: https://www.fivewishes.org/five-wishes-sample.pdf
Step 6 - Do Not Forget Yourself
Most family caregivers burn out because they don't stop to think about what they need. You should stop to think now about what you'll be called on to do as the intensity of care increases and what non-negotiables you have with your own time.
Create a recurring ritual that gives you time to recover and live your own life during this period. Make a plan for respite care--short-term relief for primary caregivers. Identify the people in your network that can help and let them know what you're going through. If there are other primary caregivers, you should ask them what their non-negotiables are and understand what rituals they need to recharge.
None of us choose when we become a caregiver. It can be really helpful to connect with others that are going through this, share your experience and learn from theirs. If you'd like to connect with others who are caring for aging parents going through similar struggles, please email us.
We know this is a lot to navigate taking care of elderly parents. We continue to believe that the best advice we can give is to help you prepare. Start with how you're feeling, and what motivates you to become a caregiver for a family member. Understand what's coming and think about what you can do and what you can solve for. If you need anything, please reach out to us at 1 (855) 464-6872 . You are not alone.