A caregiver, often a close family member, has a vital role in managing and caring for a patient with psoriatic arthritis (PsA). The caregiver is also the main support system of the patient, both physically and emotionally. Caregivers can help with many tasks, be it grocery shopping, accompanying the patient for a doctor's appointment, or listening to the patient’s concerns about treatment options and living with PsA.
Caregivers help patients understand and adhere to doctor's visits. They even help to manage various other aspects, such as financial management and help moving around. In other words, this role is quite challenging and may take an emotional toll on the caregiver.
A caregiver for a PsA patient needs to be well prepared to manage the patient and their own emotional health.
PsA flare-ups are unpredictable, so a backup plan of managing the symptoms of a 'flare-up' or a side effect of the drug can help. Keeping medicine supplies handy can be helpful.
Speak openly with loved ones about guilt, anger or fears about PsA; whether it is joint pain, stiffness, tenderness or about their appearance due to one’s psoriasis rashes.
Technology can help the patient and the caregiver stay organized. Save doctors' phone numbers, insurance information and prescriptions in one place and ensure to backup all the data too. If available, make use of apps to create medication reminders.
Reach out to close friends and other family members to help with some caregiving duties.
PsA patients suffering from rashes as a result of psoriasis can often feel worthless and embarrassed about their appearance. Women with PsA are at a higher risk for depression; mostly because of their altered physical appearance and joint pain or immobility. 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signs such as incessant crying, binge drinking and alcohol abuse, sleeping too much or too little, body aches and being withdrawn from their surroundings.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.
Here are some questions that caregivers can ask the treating doctor, particularly at the first appointment:
Having basic knowledge about common terms related to RA can help improve understanding of the symptoms, doctor’s diagnosis and treatment options. Some of the common terms include:
PsA is a form of arthritis that affects some people who have psoriasis - a condition that causes red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with PsA, but the joint problems can sometimes begin before skin patches appear. Joint pain, stiffness and swelling are the main signs and symptoms of PsA. They can affect any part of the body, including fingertips and spine, and can range from relatively mild to severe.
Ointments, creams and lotions that are applied to the skin.
Swelling due to various reasons; it is a symptom of PsA.
A joint is where two or more bones meet. It allows the bones to move.
A state when PsA symptoms are active or worsen.
The body's defence against various germs, including different types of bacteria, viruses and toxins.
A doctor who specializes in treating autoimmune conditions (rheumatic diseases) that reduce joint, muscle and bone function.
A doctor who specializes in diagnosis and treatment of various skin conditions.
A state when PsA symptoms improve and the disease is inactive.
A state when the body's immune system cannot tell the difference between a healthy cell or a diseased cell. In an autoimmune disease, the body attacks its own healthy tissues. PsA is an autoimmune condition.
Severe swelling and damage in the joints of the hands and feet, resulting in deformity and problems in movement. It is a severe form of PsA.
Home modifications that can be done for a PsA patient
Making modifications in the living room and kitchen, for example, can make life easier and safer for a PsA patient.
See some suggestions below:
These changes in the bedroom and bathroom can make things more convenient for patients with PsA.
The pain of a PsA patient can become challenging to handle at times; especially in severe cases during a flare-up, both for the person and the caregiver. These tips may help in managing and dealing with the pain:
Put hot and cold packs on the swollen and painful areas of the joints
Exercise together, or engage in other fun activities and invite others to join.
Divert their attention from negative thoughts, which often occur alongside and can be heightened by pain
Giving a gentle massage can also provide quick relief occasionally
Switch to fruits, vegetables, whole grains and lean protein
Practice breathing techniques for stress relief and to reduce anxiety
Self-care is of utmost importance and is one of the frequently ignored things for a caregiver. Stress, demands of caregiving and liabilities of ageing may put caregivers at risk of significant health problems. There may be an increased risk for depression, chronic illness and a possible deterioration in life quality for middle-aged caregivers due to the constant juggling between work and raising children. Caregivers face many issues while caring for a person with PsA, including:
Not getting enough sleep
Having poor eating habits
Not getting enough exercise
Neglecting their own health, including postponement of or failure to make medical appointments for themselves
Having identified personal barriers to good self-care, caregivers should start taking better care of themselves.
Here are some self-care tips to consider:
Know warning signs of stress and take action. Yoga can help to reduce stress.
Get rid of the guilt, anger, and resentment
Set goals that are realistic and try to achieve them
Having a problem-solving attitude for all situations can be beneficial
Ask for additional help when needed, and communicate clearly and positively
Stay physically active and exercise regularly