What Difficulties Do Caregivers Face?

The Caring Generation® – Episode 130 March 23, 2022. What difficulties do caregivers face? In this episode, caregiving expert Pamela D Wilson talks about setting boundaries, providing life support, and having practical discussions about the expectations of elderly parents.

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What difficulties do caregivers face? If you are a caregiver, you know that the challenges are endless. As I talk about in the video that accompanies this podcast, there is no roadmap or connect the dots for family caregiving unless you do your own investigation and find resources that work for you.

What Challenges Do Caregivers Face?

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

Day to day responsibilities of caregivers can feel pretty overwhelming, which is why I recommend getting ahead of the curve so that you know what to expect and how to respond. How can you do this?

Here is a short list for getting ahead of the difficulties caregivers face:

• There are over 100 podcasts of this program. Listen to all of them.
• Watch all the videos on my YouTube channel that answer questions I receive from family caregivers.
• Visit my website: there are plenty of resources at pameladwilson.com. On my website, you will find a library of articles, more articles, and podcasts in my Caring for Aging Parents Blog.
• Online courses. One course answers questions about guardianship and power of attorney responsibilities.  The other course gives step-by-step information about all aspects of taking care of parents at home and if or when the need arises, hiring in-home caregivers, and moving parents to care communities.

These online-webinar courses are accessible 24/7—so those nights when you can’t sleep, you can be productive. You will shortcut your learning curve, especially if you are looking for suggestions on having caregiving conversations with parents or siblings, identifying signs that parents need more care, learning how to manage medical care, talking to doctors, and more.

Difficult Discussions

Today, on the challenges caregivers face, I want to talk specifically about topics many of us find difficult to discuss. These include setting boundaries, life support (probably not the kind you think, and planning for the end of life. Stay with me because the conversation about life support may help you look at your caregiving relationships differently.

The questions I’m about to ask may have you thinking differently about interactions with your aging parents, grandparents, spouses, siblings, or friends. The idea for this program came from a caregiver who is living with and caring for a grandparent.

Caregiving Responsibilities That Skip a Generation

This caregiver, the grandchild, is burned out, not getting a lot of support from parents. Which begs the question, why is the grandchild and not his or her parents taking care of grandma or grandpa right? How did caregiving skip a generation to hop from grandma or grandpa to a grandchild being the caregiver?

There could be a lot of reasons. The immediate need was that grandpa or grandma had a health problem and needed care. Mom or dad are working.

So the grandchild being the most available and flexible, moved in to become grandma’s caregiver. What difficulties do caregivers face in this situation? A grandchild who has no idea of their commitment when becoming the caregiver for a grandparent. Parents who are relieved that they can go on with their lives and not have caregiving responsibilities consume their lives.

The problem now is that the grandchild is 19 and wants to get a job, go to school and be a full-fledged independent individual. These parents are in denial about the needs of their parent—grandma. They placed their child in a situation that solved a short-term problem, but the parents are struggling to deal with today’s reality and the grandma’s future.

And the grandchild, the caregiver, doesn’t have the life skills to initiate a conversation about not wanting to be the caregiver or what happens when grandma needs more care or dies. Not a great situation for this family. Right?

Elderly Children Caring for Elderly Parents

Let’s flip the script. You are the son or daughter caring for an elderly parent. It’s retirement time, or maybe you are 70, and you have been retired for a few years. You stepped into the caregiver role, but now you want your retirement years back. The problem is that mom or dad have become more reliant on you.

If you take a day off here or there, they make you feel guilty for wanting time to yourself.

You realize your retirement years are passing by and that you may be in your parent’s position with health problems in the not-so-near future, needing care from your children.

However, you don’t know how to initiate this conversation with your parents because nothing was discussed when you became the caregiver. These two scenarios are a great time to hit the pause button and call a time out so we can look at the family challenges.

Undefined Caregiver Responsibilities

Listeners, how many of you became caregivers with no role definition? If I had to guess, most caregivers would fall into this trap.

So knowing what you know today, what would you do or not do if you could press the reset button and start over. How much time would you commit, and for how long?

Having answers to these questions are steps toward boundary setting and discussing life support with aging parents.

End of Life Decisions

When you think of life support, you might think of the checkboxes on that bright green DNR document which includes questions like do you want CPR yes or no. But, if you don’t know what a DNR form is, it’s a form you get from your doctor’s office or a hospital, nursing home, or assisted living community that asks what you want if you become unconscious, stop breathing, and your heart also stops.

In addition, the form lists a series of questions that should also be incorporated into a living will document when you complete the estate planning process. For example, a DNR form includes questions like:

• Do you want CPR or to have your heart shocked back into a rhythm by a defibrillator?
• Do you want life-extending treatment: intubation or ventilation, a machine that breathes for you?
• Do you want a suction machine to remove mucous from your lungs if you have MS or another disease?
• Would you consider having a feeding tube inserted if you can’t swallow?
• What about antibiotics if you have an ongoing infection?
• Would you want to be fed by another person if you can’t lift a fork to your mouth for health reasons that include a diagnosis of dementia or Alzheimers?

These are some uncomfortable questions that we must all talk about one day or another. Discussing the consequences with a physician so that you understand is important to make the best decisions.

Helping Too Much

What difficulties do caregivers face? These include that gray area in the middle between wanting to be helpful, being too helpful, or taking over because you are an overcontrolling caregiver who thinks no one can do as good a job as you.

I know many caregivers who have given up their lives, jobs, or careers, put marriages and relationships with their children on the back burner to care for aging parents or grandparents. These family caregivers see these actions as dedicated, dutiful, and responsible, but when they place the lives of the caregiver at risk, does this represent logical thinking?

It’s not until weeks, months, or years later when the caregivers are burned out and exhausted, that they dream of regaining control over their lives. I spoke to a caregiver in this position who felt guilty about telling her mother that she could no longer be the caregiver.

Not Valuing The Caregiver’s Life

What difficulties do caregivers face—another is placing a value on your life. What about acknowledging the contributions you made or are making today to care for a parent? What about assessing the time and effort you devoted to giving a parent the best quality of life possible for five or ten years?

Caregivers never consider that these actions in themselves that seem selfless are “life-supporting.” Can your parents or grandparents live independently without any of your help? If the answer is no, then you are providing life support. The challenge is that we never equate caregiving actions to providing life support, but that’s precisely what they are.

• How many children accept the role of assisted living providers to avoid moving parents to a care community?
• How many children go bankrupt, struggle financially or spend their retirement savings to care for parents who did not save money to care for themselves?
• How many marriages break up?
• How many children struggle in school and become “problem students” because of a lack of attention from mom or dad?

These are real-life situations. They happen every day to you or others you know.

Caregiver Life Support

But – what if we talked about medical life support and then caregiver life support with all of the short and long-term effects on day one of caregiving relationships? What difficulties do caregivers face? An inability to predict the future and to realize what happens through the actions of being a caregiver for aging parents or loved ones.

The future is real. The health of aging parents probably isn’t going to get better. Your parents, children, grandchildren, and pets will all die someday. We are all headed to the end of life.

What if instead of avoiding these conversations, we had them as easily as talking about what the weather will be like tomorrow so that we could minimize life’s struggles? What if caregiving discussions began with creating a list of what difficulties do caregivers face?

Let me give you two starter questions to ask your parents, grandparents, spouses, and loved ones for whom you care:

• What is your plan to take care of yourself when you experience health or mental problems and can’t take care of yourself? Hint: Answers like “that’s not going to happen to me” or “you will take care of me” or “I’ll think about it when it happens” are not acceptable.
• When you get sick, do you expect me to quit my job, give up my marriage, ignore my children, and give up my personal interests and friends to care for you? Hint” If the answer to this question is yes, ask how do you see that working out and being good for you and my family?

These are straightforward and uncomfortable questions that should be asked. Depending on the culture you were born into, your parents may expect you to do everything and give up everything.

The next question to ask is, should we expect that level of sacrifice from another person – that level of life support so that we don’t have to take personal responsibility for ourselves or plan ahead?

The reality is that everyone will need help or care to some degree at some point in life.

The Tipping Point Between Caregiving and Providing Life Support

The challenges family caregivers face is the tipping point when not taking personal responsibility turns into 20, 30, 40 hours a week or becomes a full-time 24/7 job. What if family caregivers simply said no, and as a result, mom or dad passed away sooner rather than later? Is that cruel, or should aging happen and our own ability to care for ourselves determine how long we live?

Have medical advancements and the prescription drug commercials playing on television led you to expect that being personally responsible for health isn’t necessary because a machine, treatment, or medicine will save you? What about aging parents who are stubborn because they won’t exercise, eat healthy foods, or take their medications?

Why shouldn’t parents and others be able to choose not to participate in preventative or health-sustaining behaviors? Why do caregivers pressure parents to act differently?

What Difficulties Do Caregivers Face? Setting Boundaries

Where is the boundary between allowing parents to live as they choose and stepping in to help but not helping too much? Where is the limit of adult children becoming life support for parents resulting in parents living much longer lives but being sicker and possibly miserable and the caregivers being equally if not more despondent because of the damage they are doing to their lives, health, and families?

Let’s continue with our previous thoughts and more questions. Do caregivers go to these great lengths to sacrifice their lives to care for aging parents, spouses, and others out of duty, responsibility, and love or fear of loss and discomfort about talking about and facing death?

Is this the reason that care decisions are delayed? Decisions like when to bring caregivers into the home or when to consider moving a parent to a care home or a nursing home. Or hesitance to investigate palliative care or hospice care because if this is done, then a parent might die?

Financial Interest

What difficulties do caregivers face? Unfortunately, toxic or challenging family relationships are increasingly common when aging parents need care.

Why do some siblings run away from providing care for aging parents? Are they trying to avoid facing loss or death?

Talking about death is uncomfortable, especially when there is concern about how the survivors will go on after the death of a parent or spouse. What about spouses dependent on the sick spouse’s income or adult children living with parents who depend on elderly parents for housing, food, and daily expenses?

Do we keep aging parents, grandparents, spouses, and family members alive because their income is needed for family support? This is another unpopular question that no one wants to ask or discuss.

Household income was a concern by my mother, who said to us, “if your father dies first, I won’t be able to pay the bills.” We were too young to understand her concern, and we certainly didn’t say, “don’t worry, Mom, we will take care of you. We will pay the bills.”

Families Don’t Know How to Discuss Uncomfortable Topics

As adult children, we didn’t know how to respond, and at the time, we didn’t know how to help her figure out what to do. My mother died before my father, so this was not an issue she had to face. But, unfortunately, this is the situation most families today find themselves in.

You simply don’t know what to do, so you avoid the conversation until a catastrophe happens. And it’s not just the conversations about death and dying. Caregivers like a grandchild caring for a grandparent don’t know or don’t have the life experience or skills to talk to their parents about a family plan. Likewise, the parents watching their parents get old don’t know how to speak to their children about grandma or grandpa dying.

So, young caregivers feel lost without guidance that their parents should be able to offer but don’t. These caregivers are not sure what to do.

Older caregivers going through losses feel similarly. Wouldn’t it be better if there was a way to learn what you need to know about caregiving before you hit these rough spots so that you could manage with less difficulty? One way to learn about and prepare for the unexpected is my online course Taking Care of Parents at Home.

Grieving Losses

Let’s continue with more on what difficulties do caregivers face. Being a caregiver involves a lot of what we want and what we don’t want.

Things caregivers want might be feeling good about helping another person, learning new skills, improving their confidence. Things we don’t want are things that we give up to be a caregiver.

The time we trade with friends or socializing or in some cases becoming lonely and feeling isolated. Along with the things we don’t want or give up comes the idea of grief.

Grieving losses is part of life. Grief is another painful area to talk about with people who are not caregivers. Caregivers understand the struggles of other caregivers and are empathetic about family conflicts, parents refusing care, difficulty navigating the healthcare system, work-life balance, and many other issues.

Judgment

There is also a lot of judgment in caregiving situations. Siblings judge siblings for being helpful or not helpful.

Parents judge their children for not doing more and make them feel guilty. Caregivers judge their parents for being stubborn or refusing care.

Caregivers face difficulties because they want to fix things. Fix a parent’s bad health, fix that the family doesn’t get along instead of accepting the situation and figuring out what to do about it.

End of Life Care: Not Going Too Far

So let’s think about the end of life. I don’t know anyone who says they want to die alone.

Dying people want someone to hang out with, just like isolated, lonely, or depressed caregivers want someone to hang out with. We all want to feel understood, accepted, and not judged.

What if we start here to think about not going too far to provide life support in caregiving or any area of life. This includes everyone. Parents spoil their children with money or things so they don’t grow up to be independent adults. Family caregivers go overboard in managing all aspects of the lives of ailing parents.

When we do too much for others, we make others more dependent on us. We put them on our life support. Instead, supporting independence is better, yes?

While having parents or others rely on you for tasks might feel good, eventually, as a caregiver, it’s likely to feel bad. But, you may get there someday if you are not there yet feeling unappreciated, overwhelmed, and resentful.

Think of a situation at work. Are you the person people run to if there is a problem? While

that might initially feel good until you begin teaching coworkers how to do things themselves and think for themselves, they will always run to you for answers. Then you won’t get your work done, and you may feel resentful.

Overly Helpful Caregiving Habits Are Hard to Break

The habits of caregivers cross family and work relationships. It’s better to help others do the things they can do for themselves.

What difficulties do caregivers face? Being too helpful by putting elderly parents on life support places you in a position one day where you become the care receiver and need life support from others.

What To Do When Caregivers Go Too Far

So if you are in a position that has gone too far, what do you do when you want out of caregiving, but you feel guilty?

• Find a way to manage your guilt by giving yourself credit for all you have done. Make a list.
• How long have you been a caregiver? Document the weeks, months, and years.
• What are the things you would have done if you were not spending time in a caregiving role?
• How have the lives of your loved ones improved since you became involved?
• What is good about caregiving. What don’t you like?
• How would you like the situation to change?
• Decide what actions you must take to get from where you are to where you want to be.
• Confirm that you are prepared to make changes.

When you can say yes, I’m ready, you will need a plan for your parent to get care without you. Depending on how advanced your parent’s care needs are, creating this plan can take a month or six months if you have to apply for public benefits. Or you may have to get a job to make money and find someone to come into the home to care for your mom or dad so that you can eventually move out.

Millions of caregivers place themselves in a financial rut and look back in regret. Family caregivers want to leave, but they don’t have a job or income. So instead, they live off the income or savings of the care receiver.

Sooner or Later Death Happens

When the care-receiver dies, what happens? If there is no inheritance, the caregiver may be homeless and without income. Why not do something today rather than waiting to be homeless and having no income? If you’ve been unemployed for some time, you may need to learn new job skills.

I know this isn’t a pleasant conversation. I know many caregivers who have come to this realization, yet they remain stuck for one reason or another, frozen and unable to leave.

Comfort and routine are the enemies of change. Human nature confirms that people have to become so uncomfortable or miserable before they take any steps to change a life situation.

Inability to Accept Change

What difficulties do caregivers face—change, a willingness to change, think differently, and end engrained habits that no longer serve you. Change is uncomfortable.

You may have to face many fears and do things you would have never considered. But, it’s the only path forward to getting yourself out of a dreadful situation if you want to regain control over your life.

You moved out of your parent’s home once, or I hope you did. You can push yourself out of your parent’s house and life a second time. Although this time, it may be more complicated.

If you are a spouse caregiver, you may have to bring in-home caregivers if you are financially able or to move a spouse to a care home. The real question to ask yourself is when will you be willing to stop providing life support to others in your life to save yourself. That’s a question only you can answer.

On this topic, there are hundreds of podcasts of The Caring Generation where I talk about how to set boundaries with aging parents, why elderly parents won’t make decisions, why being a caregiver sucks, and so many more topics. All these show ideas come from you.

If you want to share your story or have a request for a podcast topic, video or article, visit my website pameladwilson.com and go to the Contact Me dropdown in the top navigation bar, then click on Caregiver Survey. Thank you all for being here and for the dedication you show to your loved ones’ care and, more importantly, take care of yourself.

Please share The Caring Generation and my website with everyone you know who is interested in proven, reliable tips, information, resources, and research about caregiving, aging, health, and everything in between.

This is Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Love to everyone. Sleep well tonight. Have a fabulous day tomorrow and pleasant journeys until we are here together again.

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