Whether you’ve voluntarily taken on the role of becoming the caregiver for an aging parent out of love and respect or the task has fallen to you “just because,” you’re in good company. We know that some 34.2 million Americans provided care to an adult age 50 or older in the past twelve months. As such, they’re recognized as the “backbone” of long-term care in our country.
While a parent can be enormously appreciative and siblings can be your best support system, that doesn’t necessarily mean that the parent you’re caring for or the brothers and sisters involved in your situation will always make for good company, however.
- Your siblings may only make the situation worse through their demands and/or anger over long-past unresolved issues. In fact, 40% of sibling caregivers will have a serious conflict with one another at some point in the journey.
- You or one of your siblings may flat-out dislike or resent you or your parent—and always have.
- Your parent, due to illness, personality or family history may be argumentative, disrespectful or even undermine your efforts. In fact, one study showed that 77% of adult children believe their parents are stubborn about getting help with daily problems or taking their advice.
The challenge for you is how to best deal with the situation at hand while also doing what is best for you. It shouldn’t need to be said, but your health and your opinions are no less important than that of the one you are caring for—or those that provide “color commentary” on your efforts. Remember, at the end of the day when your parent is gone, you’ll still have to live with yourself and the rest of your family.
First, determine why you’ve taken on the role of caregiver
If you don’t want to be your parent’s caregiver, then you have to seriously examine why you’re taking on the role. Unless you’re an only child and there are no finances available to hire anyone else, there are other options available.
If, on the other hand, you’re taking on the role out of a sense of responsibility, how are other family members sharing that responsibility? Are they helping equally or have the majority of caregiving duties fallen to you because it’s always been “assumed” you would take care of mom?
Have you been given the role because you’re the “little sister” and things like this have always been “your job”? Consciously or unconsciously, are you still competing with each other as you did when you were kids? If so, it’s time for everyone to realize that you’re all adults now.
If someone is assumed to be more or less capable based on birth order or who “mom always liked best,” you’re dealing with childhood issues—not who should be caring for mom and dad in the here and now. It’s painful enough to deal with the loss of a parent. That’s why it’s best if you can leave what’s past in the past.
By identifying the family dynamics involved, you can begin to make the best decisions for both your parent and yourself.
Second, hold a family conference
Once you’ve identified the real reasons you’ve become a family caregiver, one of the most productive things you can do is to hold a family meeting—or, better yet, regular, face-to-face meetings, even if it’s only through Skype.
Unless dementia is involved, any discussions should involve the parent that’s being cared for, as well. Just as you may have told your mother or father different stories depending upon what you wanted, your mother or father are equally capable of telling different stories to different children. By including your parent in the process, everyone will hear the same story and you’ll avoid hearing, “That isn’t what mom told me!” in the future.
Open, honest, civil communication, understanding and empathy are of paramount importance. Remember your goal is to help your parent, not air out family grievances:
- Don’t expect anyone’s lifetime pattern of behavior to miraculously change just because your parent needs assistance.
- Be empathetic and try to understand everyone’s viewpoint.
- If an issue becomes contentious, take a break to regroup and/or agree to meet again to continue the conversation.
- There’s no room for what anyone said or did 20 years in the conversation. The focus is on what each of you is going to do for your parent today and tomorrow.
- If you need to vent, talk to clergy, a counselor or take part in a caregiver’s support group.
- Don’t be afraid to apologize. Sincerely.
Third, ask the right questions
By setting down together and pooling information, you can head off issues in advance. Remember, you’re all in this together and just may need to depend on each other’s support and assistance now more than ever before.
Who’s responsible for what?
Just because you may be providing care doesn’t mean you have to do it all by yourself. Whether it’s by location or personal aptitude, responsibilities should be divided up.
If your parent is still capable, it is important for them to designate who should take on the roles of financial power-of-attorney (POA) and medical POA—while it is important for you and your siblings to respect their decisions. Then, you should hire an elder law attorney and put it all in writing.
The roles of financial and medical POA may be held by the same person or, to split responsibilities, they can be held by two different individuals, as it was in my family. Either way, once the parent is incapable of making decisions for him or herself, all major decisions going forward will proceed from these two important decisions.
When it comes to caregiving, whether it’s shopping up groceries or cleaning up, don’t be afraid to spell out your needs. If no one volunteers, ask for help directly, specifically and realistically. And don’t resort to using anger or guilt as the means to accomplish what you need.
By working together, you can accomplish the things you want—taking work and stress off of you. And by speaking up about what you need, it will also prevent anyone from ever saying, “No one ever asked me” in the future.
The goal in clearly establishing everyone’s role early on is to prevent any sense of injustice down the road. By setting out clear duties in advance (or as soon as they are known), this will do more than just make your work easier. It will allow you to continue in your role longer—which benefits everyone involved.
Who’s going to handle the money?
Ideally, this would be the same individual who holds the financial POA. However, the realities of the situation may mean that financial POA is an accountant living in Des Moines while you’re living with dad in Shreveport and he needs groceries today.
Should purchases for day-to-day minor expenditures be made using your parent’s credit card or checking account or should you make purchases and be reimbursed by the financial POA? Will the power of that decision shift depending upon the amount being spent?
Be aware that it’s common for siblings who are not actively involved in the day-to-day care of a parent or live at some distance to believe that the family member who is actively involved with caregiving spends too much on that care—especially if they had their own issues with that parent.
This could be of particular relevance when an additional caregiver has to be hired or the person being cared for needs to move to a care facility, which would incur a much larger, ongoing expense.
How will issues such as these be handled if there is disagreement among those involved as to the need—particularly if the financial POA wants to “protect” their inheritance?
If the financial POA appears more interested in their own needs, you are concerned enough about any misuse of funds or you feel your parent is being unduly influenced, you may want to consider contacting your local Adult Protective Services.
Who’s going to make medical decisions?
Similar to the instance of the individual holding the financial POA, the sibling who holds the medical POA might well be a physician living two time zones away, while you’re carrying mom back-and-forth to doctor’s appointments and getting reports on a daily basis.
No matter who makes the decisions, communication among everyone involved will be key. Here, it is perhaps of even greater importance than financial issues. Unless your finances are particularly tight, repayment for groceries may not be as time sensitive as doctor’s orders for an emergency medical procedure.
Eventually, major medical decisions such as placement into a care facility or even the withdrawal of life support may have to be made. While the medical POA holds that ultimate authority, what happens if there is disagreement as to how to proceed? What if it’s an emergency and the medical POA is not available?
What are my own personal boundaries and ground rules?
There will always be exceptions, but if you expect to remain healthy (which ensures the one you’re caring for remains healthy), you need to establish some firm boundaries and ground rules from the start.
Unless it’s an emergency, are there certain days of the week or certain times of day you want for yourself and your own personal needs? If you become ill, what’s the backup plan? By deciding what you can and can’t do early on, you avoid getting drawn into something that’s out of your comfort zone—making you resentful of your situation.
Will I be paid for my caregiving duties?
It may sound cold, but it’s best to get the issue out in the open from the start. There are hundreds of thousands of caregivers that are getting paid for doing exactly the same thing that you’ll be doing—and they may not be trying to hold down another full-time job at the same time. If finances can be made available, why should you (or any of your siblings, for that matter) be any different?
By taking on the role of primary caregiver and providing substantial assistance with health care, you will be:
- 79% more likely to have emotional difficulties
- More than twice as likely to experience physical problems (as well as financial difficulties)
- More than five times as likely to miss out on important activities in your own life
- More than three times as likely to suffer lost productivity at work
Obviously, if caregiving has fallen solely to you, the others don’t wish to share those same duties—or those same risks. That should be worth something to them—especially when the average duration of a caregiver’s role is 4 years. If you’re caring for a parent with dementia, you can add an average of 1-4 years more on top of that.
Do your caregiving duties mean you should be compensated on an hourly basis from family funds or should you receive a different share of their inheritance—keeping in mind that this is a decision that needs to be made by the parent well in advance and put into writing with the help of an attorney? If you plan on living with the parent while providing care, is room and board to be considered part of this equation?
Also, be aware that if your parent is eligible for Medicaid, you may also be able to get paid by the state for the care you provide. That’s because many states offer a “Cash and Counseling” program (also called Consumer Direction, Participant Direction, Self-Directed Care and a variety of other state-specific names).
This program allows eligible elderly adults to “hire” a caregiver—which could include an adult child or other relatives. If allowed, you would receive an hourly rate that is less than the state’s hourly average for home care.
What if our parents won’t take our advice?
Unless you’re dealing with dementia, in which case the medical POA will be making the major decisions on behalf of your parent, you have to face reality. You didn’t always listen to your parent’s advice. There’s no guarantee that they’ll listen to yours. To make the best of the situation, however, there are a few things you can do.
Treat them as adults
Just because they have gray hair on top of their head doesn’t mean there’s anything wrong with the gray matter inside of it. They got to be as old as they are by making decisions in their own way—good, bad or indifferent.
Try to understand their behavior
Again, empathy is the key. Is this behavior consistent with the patterns they’ve established in life? Are they just trying to assert their independence? Are they depressed? Are they confused? Are they afraid? Put yourself in their position and try to see their viewpoint.
Ask yourself how important the matter really is
Will the outcome affect their safety and wellbeing or is it just an annoyance? If you pick your battles, you just might win the war.
Blame it on someone else
If mom isn’t willing to change her behavior for you, would she do it for the grandkids? Robert Kane, M.D., author of “The Good Caregiver” relates that his mother quit smoking after his sister argued the second-hand smoke was a risk to the grandchildren.
Accept the situation
You may cry. You may later laugh. But there comes a time when you just have to accept whatever will be will be. If they’re still mentally competent, they still have the right to make their own decisions—even if you feel they are poor ones.
Don’t beat yourself up over “bad” decisions
Not every decision your parent makes will always be the “right” one. And neither will yours. The reality is that we’re all human. Your parents are simply trying to do the best they can with what they know. And so are you.
Find an outside outlet for your feelings
If you find yourself feeling angry, depressed, resentful or any other negative emotions, don’t take it out on your parent or on your brother or sister. Find a support group, talk with a pastor or counselor. Take the dog for a long walk.
Can’t we all just get along?
If challenges in communication begin from the get-go (such as being unable to agree on where or when to meet, let alone on who’s best to take care of mom’s soiled Depends®, things aren’t necessarily going to become easier along the way. On the other hand, things may start out great and then deteriorate as one or another member of the group gets upset.
Warning signs could include (but are certainly not limited to):
- The level of emotion in the discussion is way out of proportion to the actual issue at hand.
- Arguments begin to focus on the personalities of those involved, not the task involved.
- A member of the group is adamant that they are the only one who really knows what a parent wants.
- Criticism is voiced about what another member feels or doesn’t feel.
Finally, remember that you have permission to feel the way you do
You’re a human, too. Taking on the duties of caregiving, in addition to work and/or other family duties is going to be stressful. In fact, the Family Caregiver Alliance lists over twenty different emotions you might experience. Whatever you’re feeling, however, is certainly very real and probably well-deserved. The question then becomes, why are you are you feeling the way you are?
By identifying what’s going on, you can work with your feelings more effectively. Angry? Learn to walk away. Disgusted? Perhaps it’s time hire an attendant who might cope better with personal care issues. Afraid? Make a contingency plan. Guilty or depressed? Take time to visit a support group. Consider counseling.
Depending upon what you discover about yourself, you may need to step away from caregiving—whether it’s for the short-term or permanent basis. You may also need to hire either a non-medical home care aide or a home health provider. The bottom line is that while your feelings are real, there are always options to help alleviate them. You’re doing your best for your parent. You need to do your best for yourself, as well.
Under the best of circumstances, becoming a caregiver for your parents will be difficult. Dealing with the personalities involved doesn’t make it any easier. Just know that you don’t have to make your journey along the gray mile all alone. Speak up for yourself. Get help from others. And, if need be, take time away to reassess and take care of yourself.