Reluctant Care Recipient
Hiring in-home care for my neighbor, Joe, was quite an ordeal. The company we chose and their caregivers were great, but the quality of care wasn’t the issue. The problem was that Joe resented anyone but me helping him.
He locked one caregiver out of his home, let another in but was rude to her, and thoroughly enjoyed one young man, but only because they could discuss golf together.
Families hire home care to provide respite and quality care for seniors, but what is a caregiver to do when their loved one refuses to cooperate with this new addition to their care plan.
With so much focus on giving care, articles everywhere about the joys of caregiving and the emotional reward that can come from caring for our aging parents, how do family and professional caregivers overcome to obstacles of helping those in need who are not happy and grateful about it?
Very few of us like the idea that we must rely on another person for basic needs. Independence and control are hallmarks of our personalities, so it’s important to think about why a care recipient is resisting your efforts. Reactions such as anger and denial can make us feel more powerful, and they can be triggered by anxiety and fear of losing control.
“Caregivers need to constantly remind themselves that they might do the same thing if the tables were turned,” says University of Washington Professor Peter Vitaliano, who focuses on recognizing and managing the effects of stress on family caregivers. “Imagine yourself in the same situation and ask how you would handle it if you were the care recipient. How would you want your caregivers to help or not help you?” Unless a care recipient is in or causing danger, accept that you may not be able to change a person who doesn’t want your aid. Adopting this attitude will help you be more objective and focused, and less emotional. “You may not be able to get your care recipient to do exactly what you want, so accept small victories,” says Vitaliano.
“I don’t want your help,” my cranky dad Pete barked when I tried to help him walk from the parking lot into Walmart several years ago. “I can do it on my own.” In his late 70s then, he had a hard time getting around due to the effects of mini-strokes and Parkinson’s disease.
I saw how unsteady he was on his feet and knew enough to realize that a fall at his age and in his condition could be disastrous. He was unhappy that he couldn’t do simple things he once counted on, such as walking without help and driving. I understood. My once independent dad had been the star player on “Team Pete,” and now he was benched. He was annoyed by what he considered my “hovering.” I tried with varying degrees of success not to take his dismissive swipes personally. Distancing our emotions isn’t as easy for caregivers as we’d like, is it?
I took his left arm as unobtrusively as I could as we walked, and I barraged him with a litany of questions. What did he want for dinner? Baked chicken or hamburgers? How about a McDonald’s milkshake on the drive home? Vanilla or Strawberry? Did he feel like watching a little TV later? Seinfeld reruns or maybe a classic movie? If the issue was having control of your life stolen away, then I figured the only way to counter that assault on independence was to offer him as many feasible options as possible. I couldn’t get his driver’s license or full motor function back. But I could let him decide what to eat and watch on Saturday night.
What is a reluctant care recipient? This might be the situation in which the client’s family has convinced him (to an extent) that he needs some help, or the doctor has insisted his patient get some assistance after a recent illness. Or, perhaps this is a client who has been cared for by a family member who needs to take a break, and the client is upset by this change. As a family caregiver, you might experience the reluctant family member who claims she doesn’t need your help or you may be trying to convince Mom or Dad to give a professional caregiver a try.
Why does a person resist caregiving?
There are many reasons why a person may not want a caregiver. From feeling afraid of losing independence to denying that they need help. Obviously, not everyone is receptive to having someone helping them. Many times in-home caregivers’ best efforts are met with anger or even abuse dished out by the elder they are intended to care for. It is crucial for family and the hired caregiver(s) to determine the underlying reason for a senior’s lack of cooperation and find ways to remedy the situation. Here are some reasons why.
Fear of Outside Caregivers
Fear is the foundation of much of a senior’s reluctance and even disrespect for non-family caregivers. The presence of an outsider may suggest to them that their family can’t (or doesn’t want to) take care of their needs. It also magnifies the extent of the elder’s care needs, making them feel especially vulnerable. This combination of concerns can create the perfect storm, especially if they are prone to lashing out when angry. Of course, the family members who arrange these services get an earful, but the professional caregiver becomes the primary target for sending the message that outside help is neither wanted nor needed.
Fearing a loss of independence
People of all ages dread the idea of losing their independence, but many seniors are living this reality and trying to come to terms with it. Aging is hardly a graceful process, so who can blame our elders for digging their heels in?
If a senior is still of sound mind, emphasize that home care enables them to continue living safely in their own home. This in itself is an overarching symbol of independence. The right caregiver will pick up on this strong desire to be self-sufficient and provide assistance in ways that allow the senior to retain as much control as possible.
Fear of strangers
Trust issues can also trigger anxiety in some seniors and their family members. Inviting a professional caregiver into the home to care for someone you love is a very personal decision. The best way to alleviate worries about a new caregiver’s character and trustworthiness is for the family to take an active role in the hiring process. If the senior is capable, they should participate as well. Again, a sense of involvement and the ability to have a say in these decisions can reduce apprehension.
Adapting to in-home care is much smoother when the family is confident in the hire. Know what to look for in a provider and interview caregivers before services begin to determine a good match. With this approach, if something seems off, you have the opportunity to correct your decision before it actually becomes a problem.
Dementia Contributes to Fear
It can be challenging to encourage a mentally healthy senior to accept outside help, but Alzheimer’s disease and other forms of dementia can make this process even more complex.
Depending on the progression of the condition, a senior may not be able to fully participate in the hiring process. Nonetheless, introducing potential caregivers beforehand to see how both parties get along is still a valuable step. Dementia patients’ moods and capabilities fluctuate from day to day, though, so keep this in mind when trying to help a loved one to warm up to someone new.
Paranoia, hallucinations and delusions are common symptoms that a dementia caregiver should know how to handle. Look for someone who is trained in this kind of care and knows how to communicate with and calm their clients. Having a family member present during the first few shifts while everyone gets to know each other can reassure a senior that they are safe and in good company.
Some dementia drugs and psychiatric medications currently in a senior’s regimen could contribute to outbursts and negative reactions. If your loved one is unusually agitated and fearful, talk to their doctor about adjusting medications. While drugs should not be a go-to solution, behavioral symptoms may be managed through a combination of modifying prescriptions and altering the caregiving environment.
A senior with dementia may not ever be comfortable with a particular caregiver, even though the aide is making a considerable effort to do everything right. Regardless of the reason, some matches just do not take, and the care team may have to simple request another caregiver.
“Caregiving is a two-way street,” says Jennifer Tucker, vice president of Homewatch CareGivers, a company that provides homecare to people of all ages. She believes that a caregiver – whether a family member or professional – enters into a care partnership with the care recipient, who can and should have a say, to the degree possible, in all of the decisions around his or her care. She suggests that caregivers avoid using words like “help” and that they remember to listen.
It’s also helpful to consider the different types of care recipients and how best to approach each one. There are some common types of reluctant care recipients, from the stubbornly independent and steadfast denier to the overly controlling and cognitively challenged. Here are specific suggestions for managing your “two-way street” with these four common types of reluctant care recipients:
1. Stubbornly Independent
“You might not out reason the stubbornly independent,” says Ken Robbins, a clinical psychiatry professor at the University of Wisconsin-Madison who specializes in geriatrics. “Be very specific about what you’ve seen. Say, for example, ‘I’ve seen you have some balance issues as you climb the stairs and last week you almost fell backwards.’”
If you’re too close to the care recipient, it might be better to have a doctor, religious figure, or even a friend share the information. The important thing is that it’s delivered compassionately and that the care recipient hears it.
It’s also a good idea to start small. Gradually work into conversations the idea of hiring a little help rather than discussion the scarier options of fulltime assistance or moving to assisted living. “You might suggest hiring someone to perform light housekeeping duties,” says Jennifer Tucker. “You could mention, for example, how your loved one has earned a small luxury like this after a lifetime of raising kids and caring for others.”
2. Steadfast Denier
Someone who offers help threatens the care recipient’s denial. Not everyone is ready to hear a message on their timeline; in fact, it might make the denier more miserable right now to acknowledge the situation. It’s as simple as that.
“When you’re dealing with a denier, you may feel like it’s up to you to force conversations once you see warning signs, rather than waiting for something bad to happen,” says Tucker. But how and when you say something is often as important as what you say. The Homewatch CareGivers; Let’s Talk guide warns against a “winning the argument” mentality and suggests being flexible when it comes to discussions about care – either in the present or future.
“All of us engage in denial in one way or another,” says UW-Madison’s Robbins. “To some extent, we all see what we want to see.” Robbins suggests keeping lines of communication open so that a care recipient doesn’t feel shamed if and when he recognizes that he needs help and finally comes to you.
3. Overly Controlling
It’s not good to push caregivers to discuss their feelings. But you can make sure they know you understand how hard it is to give up control. Sometimes just talking helps. By expressing their feelings, care recipients might be more appreciative.
You can also express yourself. “A caregiver can let the care recipient know how much they appreciate their insight and wisdom, in an attempt to make the giving and receiving go both ways,” says Tucker. You can show empathy by telling the care recipient that you’re sorry you’re making some decisions for him or her. But don’t expect an instantaneous outpouring of thanks.
“People aren’t like cars that go from zero to a hundred miles per hour in a few seconds,” says Robbins. “You have to allow time for the care recipient to grieve and for both of you to gradually acclimate to the new normal. At best, this takes time.”
4. Cognitively Challenged
Dementia and loss of memory are terrifying. “Resisting help is especially common with those who have dementia,” says Robbins. “If you want to help with their checkbooks or to make sure they’re not driving, you need to be very careful and gentle in how you approach things. Get them to see a doctor who’ll explain it to them in an authoritative but less threatening way, unless the dementia is too advanced. If that’s the case, accept that some information can’t be absorbed.”
There are numerous ways that caregivers can boost their empathy – and helping skills – for reluctant care recipients who are coping with dementia.
Being the caregiver of a reluctant care recipient is never easy either, and the following tips may help caregivers understand how to approach care for the reluctant client:
1. Break the ice. Have a good attitude from the start and try to get a feel for what the client is feeling and how he/she is reacting to your approach. You may need to step back from being very cherry if the client is angry or upset and take a quiet approach. Other times, some humor may help break the ice. Work together with the family and other trusted persons to plan how to approach the situation to start. Sometimes, offering the client a chance to “try it out” or have some temporary help gives the client more of a feeling of control. Maybe the caregiver can be hired for a particular outing or event or to help with tasks that the client acknowledges he’d like help with, such as meal preparation, driving or light housekeeping.
2. Find common ground. If possible, find out about the client beforehand. This can give you topics of conversation and help you to bond with the client. Home care should be personalized to the individual, and as a caregiver you can help by gathering as much information as possible about your client.
3. Be a listening ear and empathize. Take the time to show you are really listening and that you understand the feelings the client is experiencing. It can be hard to hear a client’s angry tirade and complaints, but it is so important that the client feels he/she is being heard.
4. Find the things that the client wants. The client may disagree with the fact that he/she needs help at home, but maybe they will admit it would be nice to have someone iron blouses or help with gardening. If you can start by demonstrating your helpfulness with such tasks, this often shows the client the value in having the help and opens the door. As a family member, this is also a useful approach to convincing a parent to get help in the first place. It might be as simple as making sure no one is “available” one week to provide rides to doctors’ appointments and hiring a caregiver to help with that so the client has a chance to get to know the person and see the possibilities. As a caregiver, this is also important in the little things you do when helping. If the client has particular ways he/she likes things done, be open to them. Try to put yourself in the client’s shoes and imagine someone coming in and immediately telling you things should be done differently (or just doing them without asking).
5. Don’t push too hard. A lot of family members feel they know what’s best for Mom or Dad, but the parent disagrees. Be willing to start small. Acknowledge that loved ones may need time to process things and progress might be on a slower timetable than you prefer. As a caregiver, you might need to give your care recipient a break, step away for a minute and read his/her emotional signals. If you think you have some great ideas that would make life better for your care recipient but they refuse, allow that choice and approach it at another time.
Sometimes just talking to aging parents about the idea of getting help in the home is a daunting task. Most times, the kids know their parents need senior care services. But their parents don’t feel the same. There are some different approaches for talking about getting help in the home.
Before you get started, make sure to plan what you want to say. Do a practice run, especially to work through some of your emotions. Talk through what you’re feeling with other family members, a friend, a care manager, or your therapist. Work through past resentments, anger, etc. so you can present a more tempered point of view.
Five Approaches to Talking About Senior Care Services
Talk about what they want, not what you think they need.
Approach the conversation as an opportunity to get help with things like housekeeping or grocery shopping. Are they ordering lots of carry-out food? Maybe having a “personal chef” come in to cook would be appealing. Does Dad hate dealing with laundry but loves his shirts pressed? What about a short-term project like cleaning out the closets or shopping for holiday gifts?
These can be easy ways to introduce help in the home. It doesn’t feel like “senior care services” or admitting a need for help. Short-term or task-based help can feel like less of a commitment. Your parents get used to having help and can more easily trust the person to do more. Most often, the clients come to love having help. It feels like a luxury. They get a break from mundane tasks. Even when someone’s pretty active, certain tasks become difficult or tiring. For others, it is stuff they never liked doing (or learned how to do).
Tell a story
Personalize and use stories. Facts tend to be ineffective in breaking down a strongly held belief. Instead, share a personal story that paints the picture. Use conversation starters. Talk about your own situation, such as how you’ve prepared or gotten help with certain household tasks. If a neighbor is using senior care services, perhaps they can share their positive experiences directly. Talk about an unfortunate situation of someone you know who had a crisis at home.
Put the conversation in a positive context. For example, you might praise your parents on how they’ve handled retirement. Mention how you appreciate the way they keep on top of their health. Ask for advice. Empower them, help them to feel part of the decision making.
Use windows of opportunity and plant seeds
Plant seeds and let the conversation grow over time. You’ll find it more difficult if you wait for a crisis. Often, when you parents are already having difficulties, they’re more defensive. They see what is happening and fear admitting to it. Begin talking about what they want as they get older. Chat about different scenarios. Share what you want for yourself. Talk about examples of your friends’ parents or their friends.
If your parent gets a new diagnosis, it’s a great time to review what might be needed. It might be as simple as an app to manage medications. They may realize it’s time for a “fall button” after an episode of dizziness. The doctor can be an ally in suggesting senior care services or tech related to the condition. Check in regularly and listen to their concerns.
Maybe you offer to hire someone to help with cleaning while they’re recuperating from the flu. Post-hospital/surgery care feels more like a medical prescription than a life change. Don’t let these “windows of opportunity” pass.
Talk directly about things that may be holding them back. Listen, examine their concerns.
Your parent may not admit their concerns outright. Listen closely and ask questions. Often, elders fear losing their independence. They think this is the first step toward a nursing home. Listen for unspoken clues. Address it head on. Show how getting some help at home has kept others out of a nursing home.
Another common concern is how they will “entertain” someone in the home. They feel like this person will be in their space. It seems like a burden if they need to give directly constantly. Again, deal with this right up front. Offer a trial so they don’t feel committed. Make sure you work with a home care company that addresses this.
Some home care companies build plans based on the client’s needs and desires. It directs the caregiver in daily duties. The client doesn’t have to constantly worry about occupying the caregiver. There won’t be a time when the caregiver doesn’t know what to do. After you’ve waded through the difficult conversations, make sure to ask questions of any senior care services before hiring.
Don’t try to “fix” everything at once. Sometimes you have to know when to back off. Start small.
Bring in help from a third party
Think about your approach ahead of time. Who should be there to help? Is there a family member who Dad listens to most? Can you talk to their doctor about making the suggestion? Do they consult with their pastor about important issues? Or, is there a friend who could share a story of using senior care services?
Engaging a care manager may be your best bet. First, the care manager can find out a little about your parents’ situation and make targeted suggestions. She can offer advice on how to approach the conversation and even facilitate it. The results might surprise you!
The care manager can also help you gain perspective. Everything may feel like a crisis when caught up in the emotions. You may imagining worst case scenarios. With a care manager’s help, you can prioritize what needs to be done immediately. They can assess the current situation and needs. In the end, you’ll have a plan…a roadmap to guide you.
Also, the care manager can help you set boundaries. The goals is to empower the client to make decisions and deal with the consequences. (Of course, in some cases such as advanced dementia, the care manager can also assess when the person may not be competent to make such decisions. In those cases, they can recommend a course of action.) With the aid of the care manager, you can be clear about what you can and cannot do to help. For most of us, this is tough to do…so the support of a care manager can be invaluable.
You know your loved one best, so do whatever you can to help make them more comfortable with this new arrangement. Assure them that you are still their primary caregiver, but explain that you need help. Emphasize that the professional caregiver is there to assist both of you and that you are closely monitoring the process and their wellbeing.
Communicate openly with the caregiver and the home care company about any challenges you experience. Understanding the source of the senior’s resistance will help you cope with this problem, and a care team meeting may be instrumental in brainstorming solutions together.