Caregiving Tips to Support a Loved One With Sickle Cell Disease

I have written about learning to appreciate those who support me on my journey with sickle cell disease. My support network plays a pivotal role in advocating for me when I’m in pain and unable to communicate. Additionally, they care for me during my recovery. Without my support network, I wouldn’t be here today.

I’ve received a couple questions about how caregivers can support their loved ones with sickle cell disease. Providing specific caregiving tips is sometimes difficult because every sickle cell patient is different. However, there are fundamentals of care that I think could apply to everyone.

First, it’s essential to ask a loved one what they want or need in terms of support.

Having someone around to support me is nice, but it comes with certain conditions. I must know them well enough to feel comfortable in my vulnerability. They must also recognize that I can’t communicate very well when I’m in pain. They’re not allowed to treat me with pity. And they must understand that sometimes just being present is enough.

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How does one ensure these conditions are met with an unpredictable disease like sickle cell? I wish I had the answer, but these are examples of my quirky support needs. When these needs are not met, I sometimes prefer to be left alone. In those instances, I believe that no help is better than help that isn’t genuine or needed.

Other possible caregiving tips for sickle cell include:

Before a crisis

Ask what your loved one wants or needs before a sickle cell crisis happens. One thing I can guarantee is that it’s hard to communicate when experiencing so much pain. To remedy this, I advise you to devise a crisis plan and discuss the possible scenarios to ensure you know what they need ahead of time.

When I think about my own experience, my family had to learn from each crisis. Each one taught them a new lesson that would have been great to know beforehand. Caregivers who don’t have as many years of experience as my family does will initially struggle with what to do. Nothing prepares you for witnessing a loved one in pain, but with a plan, you have a better chance of taking the proper steps.

During a crisis

If you don’t have a plan for when a crisis happens, the most important thing to do is to make sure your loved one is comfortable. Ensure that the person in crisis has the basics: food, water, and medication. Also, make sure they are warm enough. It’s essential to be mindful that when experiencing a crisis, patients are hypersensitive to temperatures.

It can be uncomfortable to see a loved one in so much pain. The quick transition from self-sufficiency to dependence can be shocking to witness. When caring for them, try not to pity them, and ask only questions with yes or no responses. What helped me during my last crisis was being given autonomy over my care despite not being the best communicator.

After a crisis

Recovery from a crisis isn’t complete once the pain has stopped or a patient has been released from the hospital. It takes a while to return to optimal health, so be patient and supportive. The patient is learning to do things independently again, and they want to return to normal. As a caregiver, it’s essential to support them in that process.

Once recovery has happened, both the caregiver and the patient need to debrief. This conversation can help to build upon plans already made and to check in emotionally regarding how both parties feel. Being prepared with a game plan will make things a little easier.

What other helpful caregiving tips are out there? Please share in the comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.