I AM A CAREGIVER

HOW CAN A CAREGIVER HELP A PERSON WITH
AXIAL SPONDYLOARTHRITIS?

A caregiver, often a close family member, has a vital role in managing and caring for a patient. The caregiver is also the main support system of the patient, both physically and emotionally. Caregivers can help with many tasks, be it daily household work, accompanying the patient for a doctor's appointment, or listening to the apprehensions about various therapies.

For a person battling axial spondyloarthritis (AxSpA), their caregiver can help them understand and adhere to treatment plans,keep track of appointments, follow nutritional guidelines and even manage other aspects of life such as transportation and budgeting.

Here are some tips for caregivers:

Be prepared

Pain and stiffness are the most common symptoms of AxSpA, which cause discomfort. Having a backup plan for managing a symptom flare-up or dealing with medication side-effects can help caregivers better deal with these situations. Having the right medications and medical supplies on hand can also make a world of difference.

Tend to patients with love and care

Talking freely about guilt, anger, or fears about AxSpA and encouraging them to express their symptoms,whether it's joint pain, stiffness, tenderness, or stress helps AxSpA patients deal with their condition better.

Leverage technology

Technology can help the patient and caregiver to stay organized. Saving doctors' phone numbers, insurance information, and prescriptions in one place is recommended. If available, use a mobile app to keep track of every medicine that needs to be taken. Setting medication reminders can also be helpful. It's best to back up data too. For example, in an external hard drive or storage device so that the data can be easily recovered in the event of any technical issues

Call for support

Do not be afraid to ask for help. Reach out to other family members or close friends to assist with some caregiving duties.

Help build self-esteem and self-confidence

A person suffering from AxSpA often feels sad over their inability to participate in day-to-day activities and social gatherings. Look out for warning signs such as incessant crying, binge drinking and alcohol abuse, sleeping too much or too little, body aches and being withdrawn from their surroundings. Help them come to terms with their feelings and seek medical or professional help if required.

WHAT TO ASK THE DOCTOR?

Here are some questions that caregivers can ask the treating doctor:
  • What are the benefits of starting treatment immediately?
  • What are the available treatment options, and which is recommended?
  • What are the most common side effects of treatment?
  • How should one deal with the pain their loved one is going through?
  • Are there any alternative therapies that can help?
  • How to help an AxSpA patient cope with the changes that have been brought about by the disease?
  • What are the long-term complications of the disease?
  • What are some lifestyle changes that can be made to manage the disease?

GLOSSARY/TERMS TO KNOW/DICTIONARY

Oedema:

Swelling because of various reasons. It is a symptom of AxSpA

Flare-ups :

A state when AxSpA symptoms are active or worsen

Joints:

A joint is where two or more bones meet. It allows the bones to move

Dermatologist:

A doctor who specializes in diagnosis and treatment of various skin conditions

Remission:

A state when AxSpA symptoms improve

Rheumatologist:

A doctor who specializes in treating autoimmune conditions (rheumatic diseases) that reduce joint, muscle and bone function

Immune system:

The body's defence against various germs, which include different types of bacteria, viruses, and toxins

Lumbago:

Lower back pain

Arthritis mutilans:

Swelling and damage to the hand and feet joints, resulting in deformities that can cause physical impairments and limit mobility. It is a severe form of arthritis

Ankylosing spondylitis (AS):

Advanced stage of AxSpA, in which the spinal joints fuse together

Autoimmune disease:

A state when the body's immune system cannot distinguish between a healthy cell or a diseased cell. In autoimmune diseases, the body’s immune system starts attacking its own cells. AxSpA is an autoimmune condition



MAKING THE HOME AXIAL SPONDYLOARTHRITIS FRIENDLY

The pain of an AxSpA patient can become difficult to handle at times, particularly in severe cases.
Caregivers can help ease some of the pain by following these tips:

Apply hot or cold packs (as applicable) on the swollen and painful areas of the joints

Exercise together, or engage in other fun activities and invite others to join.

Exercise together, or engage in other fun activities and invite others to join.

Giving a gentle massage can provide quick relief occasionally

Switch to fruits, vegetables, whole grains, and lean protein

Practice breathing techniques for stress relief and to reduce anxiety



CARING FOR SELF

Being a caregiver is tough. One may face numerous issues while caring for a person with AxSpA, such as:

Not getting enough sleep
Not getting enough exercise
Having poor eating behaviour
Neglecting their own health, including postponement of or failure to make medical appointments for themselves


Self-care is an important aspect of care-giving. Some self-care tips are mentioned below:

Recognize the warning signs of stress and take action towards reducing it

Get rid of the guilt, anger of not being able to do everything

Set realistic goals

Embrace positivity and develop a problem-solving attitude

Ask for additional help when needed, and communicate clearly and positively

Stay physically active and exercise regularly