I AM A CAREGIVER

HOW CAN A CAREGIVER HELP A PERSON WITH PSORIATIC ARTHRITIS?

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.

Be prepared

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.

Maintain strong interpersonal relationships

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.

Leverage technology

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.

Call for support

Reach out to close friends and other family members to help with some caregiving duties.

Help build self-esteem and self-confidence

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signs such as incessant crying, binge drinking and alcohol abuse, sleeping too much or too little, body aches and being withdrawn from their surroundings.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.


WHAT TO ASK THE DOCTOR?

Here are some questions that caregivers can ask the treating doctor, particularly at the first appointment:

  • 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 a PsA patient cope with the changes that have been brought about by the disease?
  • What are the long-term complications of the disease?
  • Are there any warning signs to look out for?

TERMS TO KNOW

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:

Psoriatic arthritis:

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.

Topical medications:

Ointments, creams and lotions that are applied to the skin.

Oedema:

Swelling due to various reasons; it is a symptom of PsA.

Joints:

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

Flares:

A state when PsA symptoms are active or worsen.

Immune system:

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

Rheumatologist:

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

Dermatologist:

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

Remission:

A state when PsA symptoms improve and the disease is inactive.

Autoimmune disease:

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.

Arthritis mutilans:

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.

MAKING THE HOME PSORIATIC ARTHRITIS FRIENDLY

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:

  • 1. Avoid clutter in the living room – Discard any unused boxes, decorations or furniture that take up extra space
  • 2. Tuck away electrical cords to avoid tripping
  • 3. Use smart lights that can be turned on by a simple touch, or make use of adaptors to plug in electronic appliances, so it is easier to switch on and off
  • 4. Use double-sided tape to keep carpet edges or rugs fixed to the floor, or get rid of them altogether to avoid tripping or falling
  • 5. Go for taller or adjustable chairs instead of low chairs to make working comfortable
  • 6. Get leg extenders for couches and chairs which can make getting up and sitting down easier
  • 7. Store kitchen items in small containers so that holding them becomes easier and keep them at an easy reach
  • 8. Go for utensils with longer or extended handles for a better grip
  • 9. Purchase chopped vegetables to avoid standing time in the kitchen
  • 10. Go for lightweight cookware and upgrade the kitchen with electric appliances such as blenders, jar openers etc. to make work easier

Home modifications that can be done for a PsA patient

These changes in the bedroom and bathroom can make things more convenient for patients with PsA.

  • 11. Keep all the prescribed medicines handy on a side table near the bed
  • 12. Avoid setting up a TV in the bedroom as it hinders rest hours and a good sleep schedule
  • 13. Invest in a mattress that is soft enough to be comfortable and firm enough to provide support
  • 14. Keep all the clothes in the hanging rack instead of the wardrobe as it is easier to access
  • 15. Install holding rails to get in and out of bed easily
  • 16. Keep things like a book or water bottle beside the table so that the patient does not have to get up at night if something is needed
  • 17. Install non-skid mats in the bathroom to avoid slips and falls
  • 18. Install grab bars for additional support when getting in or out of the shower and balancing while standing under the shower
  • 19. Install wall showers rather than hand showers as they are easy and better to use with getting up and sitting on the toilet
  • 20. Consider a raised toilet seat that can help with getting up and sitting on the toilet
  • 21. Keep a check on the water temperature in your shower. Taking hot showers can dry out and irritate the skin
  • 22. Keep a first aid kit ready in the bathroom in case of an emergency
  • 23. Keep the towels at an easy reach for convenience
  • 24. Install a sitting bench in the bathroom so that is easier and comfortable to sit and take a shower, and prevent unnecessary falls

MANAGING AND DEALING WITH THE PAIN

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

PROVIDING SOCIAL & EMOTIONAL SUPPORT

Since PsA takes a significant emotional toll apart from the physical pain and joint damage, the caregiver can provide social and emotional support to the patient. This helps in improving their outlook and coping with the disease.
Here are some tips for staying upbeat:
  • Help them accept the disease. Remember, accepting without judgment is the key to a more productive life with PsA for both the patient and the caregiver
  • Keeping a positive attitude without having unrealistic optimism can be helpful. It helps both the patient and the caregiver to be prepared for the worst but hope for the best
  • Depression, pain and PsA are connected. Staying active together is beneficial for both the caregiver and patient. Reach out to friends, family, or even a therapist for support. Keep them connected with others who have PsA
  • Make friends and family mindful of psoriasis and PsA, and encourage them to be accepting and supportive.

SELF-CARE

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