Serious illness is a difficult journey. It’s both physical and emotional and can feel impossible to navigate. Those living with illness can experience changes beyond their physical wellbeing. New difficult and unexpected emotions may arise and any past issues with anxiety, stress or depression may resurface or increase. It’s easy to feel lost, alone, afraid and misunderstood. If you are caring for a loved one with a serious illness they may benefit from your willingness to take on the role as their advocate. Simply knowing they have real support can be comforting so they feel less like they are fighting a frightening battle alone. You can help ensure they gain the best quality of life possible by understanding how to advocate on their behalf. Here are 10 tips on how to advocate for your seriously ill loved one.
How To Advocate for a Seriously Ill Loved One
- Teach your loved one about their condition, reassure them there’s a plan of care in place. Helping them understand their illness can ease stress and help them manage. Illness can cause significant anxiety. It is easy for them to get trapped in an internal dialogue loop that feeds their fear and anxiety. Helping them understand that there is a plan of care designed specifically for them and their illness, with medical support already arranged, can help quiet fears. Everyone needs reassurance, occasional reminders will be comforting.
- Be there emotionally and spiritually. Bring comfort when possible. Simply being there can make a difference. Your loved one may feel very alone and find it difficult to be honest about their emotions. They may hide their fears to protect you. They may not ask for what they need in fear of being a burden. Let them know you understand and that you are there for them. Let them find comfort in your connection. Help them realize that you are here to talk to, to share their feelings, that you can help them, that you can be stronger together.
- Prepare for doctor visits. Bring pre-prepared questions and a way to remember answers. It can seem like a long wait between visits with their specialists. It’s always after you leave that you recall questions you wish you asked. Keep a journal of questions as they arise. Write out questions beforehand and bring them with you. Also take notes, it’s too easy to forget what was said or question a response later. Don’t be afraid to ask their physician questions or ask them to clarify their answers. It can be challenging to feel like you are fully understanding the conversation, disease, progression or options. Ask until you do.
- Ensure they are heard. Reinforce your loved one’s responses to physicians. One of the biggest complaints patients may have is that they are not being heard or are being misunderstood. Recent research shows that particularly older women feel like their providers think their issues are ‘all in their head’. Support your loved one by sharing with their physicians what your loved one is experiencing. Help them feel understood and their issues and concerns adequately communicated.
- Double-check medical instructions and help ensure compliance. Medications for serious illness can be confusing. Dosages and prescriptions can change as the disease progresses. Taking medications as prescribed is vital to ensure your loved one’s well-being. Make sure you understand their medication and follow all guidelines. Also, research and ask your loved one’s physicians about potential side effects. Some medications can increase depression, sleeplessness, and anxiety. Alert the nurse or physician about any side effects your loved one is experiencing. It’s important to be prepared for side effects and have solutions aligned.
- Be observant, notify your nurse with questions and concerns. Watch for any changes in your loved one’s behavior. Decreases in activity, sleeping more, weight loss, changes in appetite, needing more help with self-care like bathing, mobility and grooming can all be signs that things are changing. Keep their nurse informed about how your loved one is faring at home.
- Really listen, let them know they’re heard. If your loved one begins to confide in you how they are truly feeling – really listen. Don’t make them feel like their feelings are unjustified. Ensure they feel heard and understood. Let them know it’s OK to feel what they feel. Reach out to healthcare professionals on ways to help them manage any anxiety, fear or depression. All these feelings are justified and normal. Remember, they are struggling with feeling like they are less than they once were. Help them find ways to understand and cope with their feelings instead of beating themselves up for or ignoring feelings that are difficult to accept.
- Take care of yourself. Accept the help and guidance you need. Caregiving is difficult, stressful and can feel overwhelming. It’s important not to forget that your wellness matters too. Don’t try and do it all. Accept support, ask relatives or friends for help when you need it. Take breaks, get needed rest, eat well. You can’t be there for your loved one if you don’t take care of yourself.
- Realize when it’s time for changing goals. It’s never easy to think about losing someone you love, and this leads to many families delaying the uncomfortable conversation about Hospice and end-of-life care. Ultimately though, most families say that they wish they had considered hospice care sooner. How do you know when the time is right? Usually, hospice becomes an option when aggressive curative treatments are no longer effective and may be causing more harm than benefit. Hospice is an answer when goals turn from seeking a cure to improving quality of life. Our blog when is it time for hospice care offers additional guidelines and insights.
- Asking for hospice is not giving up. Hospice care does not mean surrendering life, it just means focusing on the quality of life for as long as possible. It allows patients to live life to the fullest while controlling pain and symptoms. Choosing Hospice care can be painful and difficult, but Hospice care empowers and supports both the patient and the caregivers. Accepting support will improve your ability to navigate the days ahead and feel truly supported.
If you are caring for a loved one with serious illness, we can help. Hospice of South Texas can help answer questions, provide resources, options and help determine care options. Call us at our Victoria office at 361.572.4300, or our Hallettsville office at 361.798.2077. We will answer any questions, support you, and walk the journey with you.