Surprisingly, family caregivers often reject help when it is offered to them. Whether it is a relative who offers to give them a break for a weekend, or a local nursing home or adult day care center which offers temporary respite care, the caregiver may refuse to even consider using the available help.
Unfortunately, refusing to accept assistance can put the caregiver's own life at risk. People who care for family members who are chronically ill tend to die four to eight years sooner than they would have without this added responsibility. In fact, sometimes they die before the family member they have been caring for.
Why do caregivers die sooner than expected? Stress is a major factor in heart disease, strokes and cancer, and being a caregiver can be extremely stressful. In addition, the caregiver is typically the person who must leave the home to do the shopping or handle other business. This makes them more vulnerable to catching Covid-19 or other contagious diseases. Being a caregiver is a high risk occupation.
If you are concerned about a family caregiver, how can you help them? You may want to start by understanding why the caregiver resists getting help, and by learning everything you can about their situation. It could also be helpful to read a book such as "When Caregiving Calls: Guidance as You Care for a Parent, Spouse or Aging Relative." (Ad) If you become more knowledgeable about how to take some of the burden from them, they may be more willing to accept your help..
Why Caregivers Resist Getting Help and How to Solve the Problem
Protecting the Patient - The caregiver may believe that leaving the patient with someone else could put the patient in danger. As a result, they are reluctant to leave them, even with a friend or family member, unless the other person seems completely capable of handling any situation which could arise. If you sincerely want to help, you may be able to overcome this objection by offering to "shadow" the caregiver for a few days, learning everything you can about the patient's medical condition, and winning the confidence of the primary caregiver. Gaining all the knowledge and experience you can will help them feel more relaxed when you offer to take over for a few days or even just a few hours.
The Caregiver May Feel Guilty - Some people, especially older couples in long marriages, or parents of an ill child, may feel that it is their sole responsibility to be the caregiver. They may feel they signed up to take care of this person no matter what happens, so they may feel guilty leaving them with someone else. It might help to have them talk about their guilt with a therapist or family clergyman. It could also help if you can explain to them that their loved one could actually benefit from the stimulus of being with others or going to adult day care a few times a week. The patient may become bored with the same routine day after day, which can actually worsen their condition. A little variety could cheer them up.
The Caregiver and the Patient May Both Fear Having Strangers in the Home - We have all heard horrible stories about paid healthcare aides who physically or mentally abused their patients or stole from them. Even though these situations are very rare, the fear can be real. As a result of these stories, both the patient and the caregiver may be extremely uncomfortable about letting someone else help, especially a paid home health aide or other stranger. The caregiver may also believe that a paid healthcare aide will not be able to handle an emergency. If anything goes wrong, for example if the patient has a seizure, the family caregiver may be consumed with guilt over leaving their loved one with someone else. This may be true even though the event could have happened regardless of who was there. It may be possible to reassure a family caregiver by asking the healthcare aide or other assistant to start by just helping out for short periods of time. It might also reassure them if the aide only works under the supervision of the primary caregiver, who can use the time when the aide is in the home to do other things, such as rest, work in their garden, putter in the kitchen or work on their favorite hobby.
They May Prefer their Privacy - It can be very uncomfortable for either a patient or their family to have home health aides, friends, or relatives in their home all day long. Instead of making them feel more relaxed, they may feel more stressed, believing they need to entertain or talk to these other people all day. It could be easier if the caregiver takes advantage of a little free time by leaving the house, visiting friends, going shopping, or simply retreating to their bedroom and taking a restorative nap. Someone who is trying to give a family caregiver a little time off should encourage the primary caregiver to use the time to do whatever they want or need to do, and not feel obligated to treat the helper as a guest. The paid healthcare aide or helper should also ask the patient whether or not they want to talk or do anything. The patient may welcome a new visitor who is willing to listen to their stories or play a card game, or they may just want to be left alone, depending on the circumstances. Honor their preference, if at all possible.
Pride May Be Standing in The Caregiver's Way - Some caregivers are proud of the fact that they have always been able to manage things on their own, without help. Now, it may feel like a loss if they suddenly feel dependent on others to help them. You might remind them that they are helping other family members when they give them the opportunity to help take care of their loved one and spend some quality time with them.
If you want to assist a caregiver in your family, or if you are the family caregiver, you may find encouragement in the book, "The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself." (Ad) This book could also give you some great suggestions for ways caregivers can take better care of themselves.
The Cost of Paid Help May Seem Unaffordable - Getting outside help, either in the form of a paid home health aide or at an adult day care center, can be expensive. However, in certain situations Medicare, Medicaid or the Veteran's Administration may cover the cost of temporary help. In some communities, the charge for adult day care is based on the family's income and the cost is charged on a sliding fee scale. If the patient is near the end of their life, hospice care is usually free and is covered by Medicare. Friends and relatives can help the caregiver explore the various programs and find out what different levels of assistance might cost and how they could pay for it. Other family members may even want to help out financially with the cost. For example, an adult child living in another city might offer to pay for adult day care one or two days a week, which could take a huge strain off the caregiver.
If you truly want to give a break to a caregiver, despite their resistance, you have a variety of options. You just have to let them know you are sincere in your desire to help, you are capable of providing the assistance they need, and everyone will benefit from the new arrangement. It may take a little time to break down the caregiver's resistance, but don't give up. It could literally save the caregiver's life.
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