Being a Caregiver for a Person Living with Muscular Dystrophy

Everyone starts their life being cared for by someone else, and there are times when we need to care for others. Life is a cycle of giving and receiving care depending on your age and current condition. Though sometimes it may become emotionally overwhelming. For a fulfilling life, people need to learn the tricks for overcoming the stress of caring for others, so that their journey of life remains exciting and purposeful. Mastering the art of caregiving is mastering the art of living. There is no one universal formula; everyone has to learn this skill by his or her way. It is important to stay affirmative.

There are several ways of acquiring positive, affirmative thoughts to keep oneself motivated and moving. Recently, there has been a very motivating story of sacrifice and unexpected caregiving. It is a story of a family taking care of a nanny for 27 years. In 1987, Mr. Li hired a local nurse named Wang to take care of his daughter when the nanny (nurse) started developing symptoms of muscular dystrophy. Everyone around told him to get rid of her quickly, as she neither had any children nor savings. However, Mr. Li made a bold decision to take care of her. Now, more than 27 years have passed, and both Mr. Li and Wang are 91 years old.

Most long-term caregivers agree about the positive emotional benefits of giving and caring. Perhaps that is what explains the longevity of both. No pharmacological approach can replace the care provided by one human to another.

Positive Aspects of Caregiving

First, let us accept that being a caregiver is not easy, many of us would feel the physical and mental burn-out. Research shows that parents (caregivers) of those living with MD are at much higher risk of developing depression as compared to the usual population (1).

If a person is aware of the difficulties of caregiving and proactively take steps for self-care, there are specific benefits too. A national survey in the US showed that in the long-term, 83% of caregivers viewed it as a positive experience. It gives a sense of happiness to know that everything is well with your loved ones, and there is increased feeling of purpose in life. Furthermore, many caregivers feel that they are being a role model for their children and society at large, which in the long-term would benefit them.

Caregiving has been related to the improved capacity of stress handling. These benefits of positive thoughts and spiritual uplifting last well after the caregiving has ended. Usually, caregivers experience emotional distress and psychological satisfaction at the same time (2).

Starting the Journey of a Caregiver

The most crucial first step is to prepare oneself mentally and understand that there will be unexpected challenges and decision making that would affect you and your loved ones directly. No formula will work for all caregivers. So, everyone has to come up with his or her own methods of tackling various problems and situations.

As a caregiver, one has to interact with doctors, insurance companies, and other entities on behalf of a person suffering from MD. It is not just about providing day-to-day care, rather it is being a full representative of the person.

Family meetings and discussing the tasks of caregiving is the best way to start. It should be understood that caregiving involves working in a team, to avoid burn-out or depression. Duties may be divided among the various family members. It is not a bad idea to appoint a team leader so that to avoid confusion regarding the responsibility. Above all, the team leader must understand that duties can be delegated, but not as responsibilities.

Care for the caregiver is also vital, everything has to be balanced. A physically and emotionally healthy caregiver can only provide appropriate care. It means that the journey of caregiving does not have to be a lonesome project.

What Next?

Caregiving is not about providing a cane or wheelchair to a person, but always being by the side, supporting and loving them.

Muscular dystrophies are a heterogeneous group of diseases, which means that every case will be entirely different. In some cases, progress is brisk, while in others it's slow. Some may even stabilize for years. What muscle groups will be most affected also depends on the kind of MD a person is suffering from.

Due to the diverse nature of MD, in this article we discuss a case of Duchenne muscular dystrophy, which is the most common form of MD. It affects mostly males and symptoms usually begin at an early age. It progresses quickly and is highly debilitating, requiring lots of care.

From the caregiver’s point of view MD can be divided into three stages: early, middle and late stage.

Early Stage

This is when the diagnosis is made. Muscles of the patient start to become stiff and spastic, though symptoms are limited to some parts of the body only.

At this stage, the patient has difficulty in balancing, gets tired quickly, has difficulty in holding things, has issues in walking. In some cases, they have issues speaking.

There is a need for emotional support, while most of the care is provided only when asked for. It is the time to share the news with relatives and friends, discover the legal aspects, and know about the benefits offered by government and insurance agency.

Middle Stage

This is when symptoms become more widespread, and the person suffering from MD is not able to do a range of tasks independently.

It is a stage where the person needs support with eating, taking a bath, going to the toilet, in some cases person may also be on assistive breathing at night.

The caregiver should provide physical and emotional support. Assist the person in doing exercises, taking medications, doing all the day to day activities, but at the same time, one should avoid overdoing.

Caregivers should watch for signs of depression in the patient, and at the same time should be aware of his or her depression.

Here, there should be intensive support and learning.

Late Stage

It is a stage of severe disability. This where the patient is on assistive respiration, mostly fed through the tube. A urinary catheter is required.

This stage is most demanding as it requires around the clock care. However, most surprisingly this is also the most satisfying stage for the caregivers as they are well-versed at providing care and handling various issues connected with it.

Rules to Follow

• Do not take advantage of the power over another person, show respect, and make sure that relations remain equal. At the same time, a person suffering from MD should be taught not to take advantage of sympathy.
• No pity. Both parties should stop showing too much pity to each other.
• A person with MD is still useful; this means the caregiver should find some valuable activities for the patient.
• Teach the patient to take care of themself. The caregiver is an assistant, but the person suffering from MD should try to be as independent as possible.

References

Abi Daoud MS, Dooley JM, Gordon KE. Depression in parents of children with duchenne muscular dystrophy. Pediatr Neurol. 2004 Jul 1;31(1):16–9.

Positive Aspects of Caregiving [Internet]. http://www.apa.org. [cited 2017 Oct 11]. Available from: http://www.apa.org/pi/about/publications/caregivers/faq/positive-aspects.aspx