The Caring Generation® – Episode 172, July 26, 2023.  Being a Caregiver is hard. Doing the best you can with the resources and time you have to care for aging parents may feel like it’s never enough. Caregiving expert Pamela D Wilson shares examples of caregiving challenges and offers a resource to help with care and decision-making.

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Doing the best you can with the resources and time you have to care for aging parents may feel like it’s never enough. Caregivers usually have a long list of to-dos.

If you have been caring for an aging parent or multiple family members, you know that time and resources are limited. This is why you choose between spending time with your children versus caring for a sick parent versus doing other things you dream about.

Doing the Best You Can

Watch Over 800  Videos About Caregiving and Aging on Pamela’s YouTube Channel

Why Is Taking Care of An Aging Parent So Stressful?

Caregivers often choose between options A or B when neither feels like a good choice. As a result, stress levels rise.

Learn what doing the best you can means. Gain knowledge about common caregiving decisions so that years down the road, you are not filled with regret about all of the things you wanted to do but could not because of caregiving duties.

Limited Time and Resources

As a caregiver, how much time do you spend each week caring for grandpa, grandma, a mother or father, siblings, a spouse, your children, or someone else? If you log the time, is it more or less than what you estimated?

You might dream of sending someone a bill for the time you spend in weekly caregiving activities. Unless you have a formal notarized caregiving agreement with a family member or the state where you live has a Medicaid program that pays family caregivers, this is an unlikely scenario.

To begin thinking about doing the best you can do, document the time you are spending so you have an accurate number. Then make a list of resources or constraints so that you know what you have to work with. Resources and constraints can be things like time and money.

A constraint is a limitation or restriction that makes doing something not possible. For example, a constraint might be having $20 to spend on groceries when the items you need really cost $40. So, you find yourself buying the least expensive items and clipping coupons where necessary.

Or maybe you have one week of vacation time that you use for home maintenance projects. But what happens when you need time off to take a parent to a doctor’s appointment, or you have health issues that you need to address? Do you neglect your well-being to care for an aging parent or spouse?

Transportation can be a limited resource if you do not have a vehicle and rely on public transportation. The constraint is that you can’t decide to run an errand without checking the transportation schedule. On the other hand, taking or transporting a parent to a doctor’s appointment can be a major project.

A resource is something that helps or contributes positively to a situation. Maybe you have a brother and a sister who can occasionally help with caregiving duties. Maybe your parents have money to pay for care. Maybe you belong to a caregiving group, or you found a program that offers information about health and caregiving that you don’t have experience with.

A resource is my online caregiver program in webinar format called Caring for Aging Parents.

What is the Best Way to Take Care of Aging Parents?

When I was a care manager, I was responsible for the care of many older adults who paid my company for care management services. My goal was to be responsible with time so that clients received the care they needed in the most cost-efficient manner. This meant that while I may have been the guardian or power of attorney, I used other methods and services to help with care tasks.

There are times when using services to help with the care of aging parents and investigating alternatives is a better decision than risking injury. Let’s look at an example of a parent going out of the home to a doctor’s appointment.

There were clients for whom my staff would arrange paid accessible wheelchair transportation to a doctor’s appointment due to safety or vehicle concerns. Folding and lifting a 40-pound wheelchair to put it in the car trunk is not a task that everyone has the strength to perform. Hired caregivers have weight limitations for lifting or carrying heavy items due to worker’s compensation limitations.

While it may be easy for an elderly parent to sit down in a vehicle, what happens when a parent does not have enough leg or arm strength to stand up from the seat in the car? I have seen the elderly become physically exhausted and fall in a parking lot or crossing the street. Family caregivers can also become physically injured trying to stop a parent from falling and performing other personal care tasks.

In addition to the transportation, we added a paid caregiver to accompany the client to the doctor’s office. I or one of my care managers met the client and the caregiver at the appointment to be more time efficient.

If you have ever taken a parent to a doctor’s appointment, you know that there are many things that can go wrong. Late transportation, a caregiver not showing up, a parent forgetting about the appointment, not being ready when it is time to leave, or simply refusing to go to the appointment.

Steps to Take When Aging Parents Need Help

Until you are in this situation, you may not realize that the simple act of arranging a medical appointment and getting a parent to the appointment can be a major project to plan and work through.

If your parent lives in an assisted living community or a nursing home, you can include another task for coordinating the paperwork from the community. This includes a face sheet and medication list that must be taken to the appointment and signed by the doctor to confirm changes in medications or treatments.

If an assisted living community administers medications or provides any type of medical oversight, a physician’s order is required.

In this example, the time to arrange, attend, and follow up after the appointment can be another limiting factor for caregivers who work full-time or who have difficulty taking time off work. Add to this the financial expense of paid transportation, a caregiver who might be hired to drive or accompany a parent, the visit co-pay, costs for prescriptions, etc.

Reasons Caregivers Are Stressed Out

Now, let’s talk about constraints which can be the physical health or mental abilities of an aging parent that can lead to more and more time required to provide help in the future. Adding time commitments in one part of your life means more time pressure on other parts of your life.

You may have less time to pursue a career, spend time with your spouse, children, or friends or enjoy activities that make you happy.

So, back to the lists. The list of the time you contribute to caregiving. The list of resources and constraints. Next is what you want your life to look like with caregiving responsibilities or without.

• Do you want more time to pursue education or a career?
• Can a paid caregiver be hired to do the tasks you do not have time to do? What other services exist that will give you time back?
• Do you want to move away from the city where a parent lives?
• What would make you happy?

Creating a caregiver wish list can add additional considerations to the list.

Caregiving Assumptions and Expectations

Let’s take a step back for a moment. When you first became a caregiver, was there an assumption that you would do everything no matter how much time and effort required? Or did you jump I to save the day without giving the situation any thought?

If there was no discussion about caregiving assumptions or expectations, then your situation mirrors many caregiving relationships. Most care relationships begin from the basis of naivete because at the time, you are doing the best you can do with the knowledge that you have.

My experience is that most caregivers have no idea what they have committed to until down the road when they are exhausted and burned out.

In this situation of doing the best you can, accept responsibility for your participation and what you did or did not know, and the knowledge gap that existed.

If you did not know to set parameters or limits around care activities, there is no one to blame for the current situation. You did the best you could do at the time with the information you had.

The Choice to Be a Caregiver

Being a caregiver can be challenging because many caregivers feel they do not have a choice due to family culture, duty, and responsibility. So even if caregivers are physically or emotionally worn out or sick, they usually keep going.

At the point that you become sick or can take a day off, think about whether becoming too helpful transferred to caregiving duties that are consuming your life. If so, become a problem-solver and do the best you can to re-balance your life.

Doing the best you can means taking the high road to being kind and considerate, especially when you might feel frustrated or impatient. It means avoiding criticism of others— because things you are usually critical about are things you don’t like in yourself.

There is no benefit to allowing yourself to be sucked into negative or unproductive behaviors. Instead of solving a problem, unhelpful or contentious actions can lead to more problems. If possible, be kind to everyone, no matter whether you are having a good day or a bad day.

Manage Needs

The next step after making the list of limited resources and evaluating the progression of the caregiving relationship is for caregivers to be bluntly honest about actions that contributed to the care situation.

This combines the process of getting crystal clear about what you want your life to look like.

Let’s look at a worst-case scenario, and then we’ll look at a more common example. Let’s say the dream is replacing you as the caregiver with a different option, a paid caregiver or placing a parent in a care community.

You have done the best you can under the circumstances. Areas of your life are suffering.

If getting clear on what you want in life means reducing caregiving hours or taking another action, then the next step is problem-solving so that you can responsibly and thoughtfully step away from your duties.

Concerns exist with a parent’s ability to bathe or dress, remember to take medications, drive a car, grocery shop, and cook because of health issues. Maybe an elderly parent is experiencing memory loss. If so, there are a lot of daily needs to manage.

If your parents have an unlimited supply of money and your mom or dad wants to stay home, you can hire caregivers to come into the home and hire a care manager to supervise the caregivers so that you regain life as a son or daughter separate from caregiving.

Research Options, Services, and Programs

If this is the situation, investigate options for in-home caregivers and a care management agency. A care management agency can take work away from family caregivers by managing in-home caregivers and making sure that the needs of aging parents are met. As the caregiver, gather all the details before presenting options to an aging parent or a spouse.

Then let’s look at the opposite situation. A parent has the same needs but next to no money to pay for care. Then Medicaid or a version of this program in your state is the next subject to research.

So, you do the research to learn about Medicaid services in the state where the person you care for lives. The programs vary by state.

In-home caregivers through a home and community-based (HCBS) option may be an option in addition to financial support, called long-term care (LTC),  for a parent to move to a care community. Know that a Medicaid program available in Texas may not be available in New York or in California.

If you are the medical and financial power of attorney for a parent, you may be able to verify that mom or dad meets the requirements of the Medicaid program before you offer this as an option to no longer be the primary caregiver.

If you do not have access to the information required to complete the Medicaid application and know that the person you care for will be accepted into the program, then this will be where the conversation begins after you explain the basis for the change in plans.

Initiate The Conversation

Initiating the conversation with the person who needs care can be a little challenging if you are not used to having difficult conversations or if you avoid conflict. Be kind when stating the truth about your feelings.

This conversation is like breaking up with a boy or girlfriend. Your parent will probably feel rejected.

One thing you can do to reduce objections from a parent is to place the responsibility for stepping in to do too much on yourself as the caregiver. Be clear that this is a conversation you should have known to have early on, but you did not know any better.

The conversation might go like this.

“Mom or Dad, I know we didn’t have a conversation two years ago when I started helping out. I have been doing everything I can to help, and admittedly I took on too much.

I want to take a step back and reduce the time I am spending in care activities to pursue my career, spend more time with my husband or children, and focus on my health (or whatever your goal is).

I’ve done the best I can and investigated options for you to receive care that I want to share with you.  I realize this conversation may be coming up out of the blue and may surprise you, and if so, I am sorry.

I hope you will consider options A, B, or C so that I can help you make the adjustment, as my timeline for this is no more than 8-12 weeks.”

Prepare yourself and think of a worst-case scenario so that you have responses if a parent becomes angry or upset about the conversation.

Think of this conversation as breaking up with a mate or best friend. If you were the person initiating the breakup, how did you handle the conversation? If you were on the receiving end of the breakup, how did you react?

Reasons to Pre-Plan the Conversation

Looking at the big picture, if you put yourself in the place of your parent, this conversation may be a total shock. Especially if you have never expressed concern before.

Mom or Dad may need some time to adjust to the situation changing and think about the options presented. Having this conversation is similar to “ripping off a band-aid” to get an uncomfortable conversation out on the table. You may feel equally uncomfortable initiating the conversation.

There are pros and cons to early discussions.

• Some caregivers prefer to mention concerns before investigating options to minimize surprises
• A parent may worry because they feel abandoned and do not understand the options for receiving support from non-family members
• A parent may appreciate the early notice and want to be involved in the process of investigation
• Or the discussion may be a necessity if the parent has financial or health information the caregiver does not have that is needed for research and planning
• The person who needs care may attempt to make the caregiver feel guilty

You know your parent. Would they prefer to be told news that might be concerning without receiving a solution, or would it be better to have the discussion and be prepared to review all of the options?

These are very difficult situations. Doing the best you can do with the knowledge and resources caregivers have is the way forward.

Doing the Best You Can to Make Decisions

Let’s look at a situation where the caregiver, as the medical power of attorney, helped a parent make a decision to have surgery that didn’t turn out as expected. The surgery could have been a hip or knee replacement, heart or another surgery.

Instead of an aging parent, improving their physical health is worse after the surgery. As a caregiver, it can be heartbreaking to watch a parent become more physically disabled.

If you did the best you could do under the circumstances, then you did the right thing. There are times when doing the best you can means feeling powerless over the outcome of a situation if there are aspects that you can’t control.

Advancing care needs means that a conversation is necessary to respond to the consequences of needing more assistance. Let’s say that you feel you made a mistake with the surgery decision because you now know that you didn’t have enough or the right information.

So now, instead of making decisions, you procrastinate or find every reason not to make a decision that can have a big impact. What can happen in these situations is that others move ahead, or situations will happen that result in having fewer options.

There was no conversation about the consequences of “What if we don’t do surgery?”

A decision made can go either way if there is no prior or limited experience or knowledge to predict the outcome. Or the decision could succeed wildly.

One way to avoid procrastination in decision-making is to do the best you can to investigate. Ask others who are more experienced. Write down the list of pros and cons and discuss these with the persons involved.

This is the way to gain experience and confidence in decision-making. As you go through this process, ask yourself, am I doing the best I can? Am I putting in sufficient effort to have enough information to make this decision?

Decisions Have a Cost

Whether you make a good choice or a bad choice, there is always a cost. In time you will gain the experience to see the gap between a well-thought-out decision and a rushed decision.

As the ever-helpful caregiver, do your best not to make decisions for the people you care for unless they are cognitively unable to make these decisions and you are the guardian, medical or financial power of attorney.

With age, older adults can become more cautious or take more time to make decisions. Our loved ones are also doing the best they can with what they have.

Just as caregivers have a suitcase full of life experiences, so do the people that we care for. It is these memories and experiences that affect every decision made.

Some people dwell on past mistakes and carry regret with them for their entire lives. Rather than put yourself in this position, make the effort to gain a bigger perspective of all of the moving parts and pieces of your role as a caregiver and the decisions that have to be made.

A Caregivers’ Resource for Caring for Aging Parents

As a reminder, this website offers an online program for caregivers called Caring for Aging Parents. The information applies to caring for an aging parent, a spouse, or yourself.

The level of detail is extensive because the program is based on my personal experience as a care manager and professional fiduciary of over twenty years. I had the benefit of experiencing once in a lifetime situation that gave me insight into problem-solving difficult situations.

So if you are in an uncertain situation, check out this online program—there’s no cost, and you might find solutions to the issues you are experiencing.

Taking the initiative to learn, to consider opposite perspectives, and to be open to new experiences is one of the best things you can do for yourself. Now you might say, well, I have no time. I am too busy. That may be true.

Decisions Play Out in Daily Life Experiences

When doing your best, one question to ask is are you moving forward to live the life you want or moving further away from your dream.

There are a million excuses not to take action, to procrastinate, or avoid making a decision. There are also a million other reasons to do the opposite, which means acting based on the information you have at hand.

When doing the best you can, realize that your life is equally as valuable as the person who needs care.  The caregiver’s life is as valuable as the family members who judge looking in from the outside.

If you are a young caregiver, you have a lot of life in front of you. The actions you take early in life, in your twenties and thirties, can set the course for the rest of your life. Did you choose to go to college, pursue a career, or get married?

These are big choices and decisions that have lifelong effects. Your parents or the person you care for, if older, already made their decisions.

These decisions are playing out in the circumstances of the people you care for today. So, if you want a career and need more education or experience, don’t sit still. Find a way to get it.

If you are a caregiver and you want more time for yourself to find a partner and marry, investigate options for the care of an aging parent and pursue a partner.

Consider that everyone you meet has their own struggles and challenges. For this reason, be kind in all of your interactions, just as you would want someone to be kind to you.

Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.

©2023 Pamela D. Wilson All Rights Reserved