Reluctant Caregivee

What to Do When Caring Is Met With Resistance

"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 ministrokes 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 damn well let him decide what to eat and watch on Saturday night.

First Article: How Caring for Others Makes You Stronger, Wiser, Healthier

There's so much ink these days, including a recent New York Times article, on reluctant caregivers. Many feel trapped into taking care of a loved one they don't like or want to help but they grudgingly do so anyway, despite the lack of emotional reward that can come from dutifully assisting. But what about reluctant caregivees? With so much focus on giving care, how do family and professional caregivers overcome the obstacles of helping those in need who are not happy and grateful about it?

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Understanding the Resistance

Very few of us cotton to 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 caregivee 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 caregivee 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.

Caregiving: A Two-Way Street

"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 caregivee, who can and should have a say, to the degree possible, in all of the decisions around her care. She suggests that caregivers avoid using words like "help" and that they remember to listen.

Managing Four Common Reluctant Caregivee Types

It's also helpful to consider the different types of caregivees and how best to approach each one. Recently, I spoke to experts about a few common kinds, 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

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"You might not outreason 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 caregivee, 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 discussing 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 the kids and caring for others."

2. Steadfast Denier

Someone who offers help threatens the caregivee'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.

SEE ALSO: Find In-Home Care Help Near You

"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 caregivees 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, caregivees might be more appreciative.

You can also express yourself. "A caregiver can let the caregivee 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 hundred miles per hour in a few seconds," says Robbins. "You have to allow time for the caregivee to grieve and for both of you to gradually acclimate to the new normal. At best, this takes time."

SEE ALSO: Find In-Home Care Help Near You

4. Cognitively Challenged

Dementia and loss of memory are terrifying. I see firsthand how fears of these two scare my 85-year-old mom, who watched her mother and sister suffer from sad and debilitating cognitive decline.

"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 caregivees who are coping with dementia. See, for example, Validation Therapy, Redirection and The Virtual Dementia Tour.

Caregiver, Help Thyself

"One of the hardest parts of being a caregiver is that your efforts may not always be appreciated by the person for whom you're caring, especially at the time," says Robbins. "You have to learn how to be an actor and deal with the feelings later."

I can relate. At times, I feel like I have to be Tom Hanks when my help is unappreciated.

How can you manage your own sanity when you're caring for a reluctant caregivee who is angry, unhappy, and/or ungrateful?

  • Make sure you have a support system. "It's very challenging to give care on your own without a support system," says Robbins. "Recognize that you are not hurting the caregivee if you talk to someone else -- friends, a support group, a counselor -- about the challenges and frustrations you're experiencing."

  • Exercise, take breaks, and do things you enjoy. It's just common sense, but sometimes easy to forget. You have to take care of yourself in order to effectively help anyone else.

  • Stay cognizant of your physical and mental health. "If a caregiver is vulnerable to problems in response to stress (say, having a family history of depression, anxiety, or trauma), this can greatly exacerbate the situation," says University of Washington's Vitaliano. Caregivers are at great risk for depression and are more likely to lapse into poor health habits (an unhealthy diet, lack of exercise).

  • Remember that caregiving is a noble human virtue. "Humans and even Neanderthals have been practicing caregiving for more than 100,000 years," says Vitaliano. "It is in our DNA. But this doesn't mean we have to let the rough sides of caregiving ruin the noble sides."

Finally, next time you ask your reluctant caregivee if he wants a milkshake -- and what kind, vanilla or strawberry? -- take a deep breath and make sure you get one for yourself, too.

over 2 years ago, said...

Yes, indeed SmellSweet! And, now as I am looking for help for my friend Joe who lives alone, I am noticing, just as I do my early phone research, HUGE duplications, and inefficient use of caregiver's valuable time - and, a little much, sometimes. But we caregivers need to know that 1) what we offer is important, 2) There will always be a need, somewhere for what we do, and 3) faithwill move us forward. But I understand this situation - totally!

over 2 years ago, said...

I recently left a job with a couple in hospice care because there were too many caregivers which caused unpleasant noise factors and the clients got so confused who was coming and going. No matter how hard I worked to met their every whim, it was never enough. Since I had been a caregiver before, I saw the signs it was taking on me and was relieved when the primary caregiver said, "thanks for coming when we had no one, but we have a full time staff now." Whew! It HAS to be team work and one needs the support of the team leader. When you do not have that, you are darned if you do and darned if you don't. Money is why you put up with this? Try using your faith in God and your friends, there ARE other jobs out there. Give up the control this is the only job you can get or you will die before the clients do and the sad part is, few will care about all your extraordinary efforts.

over 2 years ago, said...

I think one of the positive things to come out of the aging population's need for various (AD/dementia/Parkinson's) caregiving, in a major way..will be the monitoring of the process, and the providers. I visited Kitty at the nursing home yesterday, gently reminding them that her nails needed to be cut. They were happy to comply, their very good reason for not doing it sooner - there is an epidemic of 'sniffles' on that floor and the nurses have been run off their feet looking after patients, not just feeding, bathing, medicating, grooming, moving, etc. So, I take to heart my motto, "Stop Minding Your Own Business", and stick my nose in wherever I can. Yesterday I went and got a small bag of caramel candy for Sonia, Kitty's room mate, who still gets around and eats well, but loves her candies after lunch. I asked the nurses if that was all right, (stuck my nose in, nicely) and they said 'fine'. So, it is a matter of good judgement with small things, and a LOUD voice of protest with big things. We will see changes, but only if we speak up for our loved ones who cannot do that for themselves, either vocally, or coherently (if they can speak at all). Discouraging? Of course. But that does not mean we should shrug, walk away, or give up. And always, look after ourselves so we are kept strong for the conflict moments!

over 2 years ago, said...

It would be great if the terms would be clearer...If It makes sense that the person receiving the care be called the 'CARE TAKER or CARE RECEIVER...then it would be logical to call the person actually giving the care for free, the CARE GIVER.. however, if they are gettin paid and then they should be called the care SELLER, or paid care PROVIDER or EMPLOYEE or HELPER.....of course, it is always important to watch out for, deter and even prosecute Care FAKERS......(those who abuse, steal from or otherwise denigrate the quality of life and health etc. of those in need)

over 2 years ago, said...

Unfortunately, the same difficulties that impede appropriate actions on the part of caregivers also occur if the caregiver seeks assistance from physicians or other non-family members, like clergy or friends--those folks can be every bit as ineffective, for various reasons. They don't want to hurt the patient's feelings or be the target of misplaced anger. The physician may be just a few years younger than the patient, in denial or fearful about his or her own potential or actual personal decline, and minimizes the patient's decline as a consequence. I have encountered this. No one wants to be the bad guy and take the anger and blame from the fearful caregivee.

over 2 years ago, said...

I have been helping with housekeeping, for a senior friend of mine, who now, at 86 is beginning a very sad, obvious slide into dementia. His apartment, once happily cluttered, is now a disaster. It is overrun with roaches, despite my frequent spraying and cleaning. And when I asked him about it, he said he 'did not see them." That was the first clue something was wrong. At first, years ago, when I first began to do the weekly tidy up for him, it was a great deal of fun, and I loved our banter, and chat, and he'd play piano while I'd clean. I still enjoy visiting, he's a great guy - and I think of him as an eccentric family member, though we are not in fact related. The week before last he came to the door to greet me in his robe, which was open, and he had nothing else on underneath. This was not like him at all, and when I went to find the silverware to wash and put it back in the rack, it was all in the fridge. I have had experience with several other seniors, prior to this. Independent, wonderful oldsters who have lived for decades on their own. And once you know a person for that long a time, you can feel when they begin to slow down, or their grooming, housekeeping, memory and general life skills begin to diminish. And you worry for their safety. So, I know putting things in inappropriate places (silverware in the fridge), and uncharacteristic new behavior (walking around half clad after a lifetime of dapper, bandbox clean dress) are early signs of slippage. Awhile back, my friend wisely had posted a note on his desk saying, "If I am found,"It included clear instructions to call his lawyer, the funeral home, and also listing the name of a cousin. I made a mental note of it a few months ago. I recently found it again amidst all the clutter and filth. Yesterday I dropped the cousin a letter, introducing myself and telling her what I have observed over time. And asking her in the kindest way I could to take it in the right spirit - but to please...come and see him, not just make a phone call. And she would see the urgency to address what is taking place, and then (I hope) act as a family member should. My friend is very independent, but as is often true in situations like this, he himself does NOT have the ability to reflect or understand about his own deterioration. It is at times like this that we must act, to make sure a family member, or loved neighbor or friend is safe, and gets the care he or she needs, at a vulnerable time. I told her my motto at times like this, "Stop Minding Your Own Business." I held it prayerfully for a day or so, asking myself what would be best to do. And the answer came: if I did NOT act, and something happened to him where I could have intervened to help, but didn't..I would have to live with the consequences. Hence, the letter. It is always tough: You don't want to seem bossy or intrusive, yet you cannot walk away. You encourage the person to be independent, but if they are frail and shaky on their feet, you fear for them. You act out of kindness and concern. And rightly so.