How Much Care is Enough?

Contributed by Lawrence Henderson

Psychology major

Carers have one of the most difficult jobs in the world. Perhaps this is why the carer role can result in such a high amount of burnout and confusion for those who fill the role. Determining and delivering care in a way that is respectful of both the needs of the patient and the abilities and limitations of the carer is very important. This usually requires a strategic approach; it is important to create a care plan between family members and the entire care or medical team.

As no two cases are the same, care plans should be individualised for each person. But is it possible to provide too much care? It certainly can be; while patients may require assistance, carers can sometimes inadvertently take away independence by doing too much for their charges. Likewise, the amount of care can exceed the limitations of the carer in question, especially if supports are not put into place to provide respite. In many cases, it is a misunderstanding of reality that causes carers to exceed their abilities.

Preserving Dignity vs. Removing Independence

As carers, many people aren’t sure where the line should be drawn between preserving the dignity of a loved one or patient, and removing independence. This line is further blurred in patients with cognitive difficulties; it can be difficult to judge what a patient can and cannot do successfully any longer as disease progression begins to interfere with ability.

Preserving dignity is one of the most important steps for a carer to take. At its most basic, this ensures that the patient’s basic rights are observed. It can mean something as simple as providing them with support to attend to the washroom on their own, or it can mean asking for family members to allow for a private moment between the carer and patient during diaper changes or other sensitive situations. It can also mean ensuring that the patient is supported in environments where a lack of support may lead to embarrassment or being humiliated, such as being unable to pull out a chair at a restaurant or seat themselves. Disability may make these tasks more difficult, but with support, dignity is restored, helping to keep patients as much an active part of society as is possible.

At a certain point in this provision, the line can be crossed into removing independence and doing too much for the patient. Think of a patient who is newly in a wheelchair; the patient needs to still handle some tasks on their own, and should be encouraged to do so. When the carer handles every little thing, even reaching for a newspaper, it can make the patient feel inadequate and even useless. A frank discussion should be had where possible, either with the patient or the family, to determine what the patient enjoys doing and what their normal lives looked like prior to reduced function.

The Role of Carer Guilt

Carer guilt is incredibly common; many feel that they never have the time or ability to do all they want for their patients or loved ones. Or, carers may feel guilty that they are unable to change the course of diseases or rectify the loss of ability. This can lead to intensified efforts to provide care. It’s a common feature in families who have a loved one in hospice or who is home and actively dying: they go without sleep, food, or rest simply because they feel guilty for paying attention to themselves.

How Carer Guilt Can Impact Care

Carer guilt can frequently lead to too much care being delivered, both out of a desire to fix what cannot be fixed and feelings of inadequacy. Even the patient may add to this, especially if they are particularly demanding or experiencing feelings of sadness, anger, and despondency. Patients may even refuse to do anything on their own, making carers feel as if they have to handle all tasks.

Unfortunately, this is not always the right choice for carer or patient. When this occurs, a meeting should be held between the care team to review best practices for handling the feelings themselves, rather than allowing the carer to take the brunt of everything.

Using Assistive Technology Within the Home

Using assistive methods within the home can take some of the burden from carers, and may even allow patients to be more independent. The following can be tried to assist with independence:

        Canes

        Walkers

        Scooters

        Stair lifts

        Working animals

        Safety measures like ramps

        Walk-in showers or baths

 

While items like walk-in showers and stair lifts may cost money, they are immensely helpful to patients who wish to remain ambulatory.

Preserving Care Levels

Research has shown that carers who provide too much care, for too long a period of time, will eventually show a degraded level of care that may even be dangerous. By creating carer schedules that allow each carer to enjoy downtime and self-care activities, a higher level of care can be preserved. This is typically gained through respite care or shift scheduling, but may even be as simple as a different family member taking over for a few hours in the afternoon.

Creating a Supportive Environment

creating a supportive care team early on can be immensely helpful. Each member of the care team, usually including doctors, nurses, loved ones, and any other involved parties, should work together to support the rest as best they can. When possible, the assistance of a qualified therapist can be used to allow an outlet for stress and difficult situations to be discussed.

Understanding the Bigger Picture

Thirdly, it’s important for each carer who is providing care to the individual to fully understand the bigger picture of the illness or situation that requires care, as well as the lifestyle and personality of the person they are caring for. Decisions around what level of independence is appropriate should be had often, and should include the suggestions of the patient whenever possible. The patient should always be encouraged to remain independent, but should never be pushed to handle tasks that are simply out of their ability range.

Understanding that It’s Good to Speak Up

Finally, it’s important that both the patient and the carer feel that they can speak up if needs are not being met. There is no shame in either party stating that they need more from a carer situation–or even less. Sometimes, patients may wish to do more for themselves, but may feel that loved ones will be insulted when they turn down help. Carers may feel guilty for asking for time off or time alone.  Despite this, each is equally important to preserving the caring environment

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