Watching a loved one suffer though a chronic, declining or terminal illness can be painfully intolerable. This very article and topic can be super triggering for some, so know that you can read a little bit at time, or at a pace that feels digestible for you. The first thing I want to help validate is that whatever emotion you as a loved one is experiencing is valid. You should also know that that it’s completely normal for there to be major variability in how you and the rest of your family/friends will react to the news about a terminal diagnosis. As your loved one progresses through their illness, there might be different stages where you will witness their illness progress and their functioning decline. That’s hard to watch, try to digest, and completely normal for any loved one. In this post, I’ll write about different things you’ll want to consider for your own coping in this process.
You as a loved one and/or a caregiver will need to take care of yourself so that you can be a pivotal part of your loved one’s illness and journey. It’s not an exhaustive list, therefore, I urge you to be in touch with your loved one’s treatment team to ask for help and any resources they might have for you as the patient’s loved one or caregiver.
Coping/Self-Care Plan. As mentioned above, you are such an important part of your loved one’s journey though an illness. While it isn’t going to be easy to be a caregiver while you are also processing your own pain, fears, and grief, coming up with a plan for taking care of yourself is going to be really important. You’ll want to make a plan for self-care, which pretty much means putting on the oxygen mask on yourself first, before going to care for others. Trust me, I know it sounds counterintuitive – especially in the face of a loved one suffering so much. At the same time, you need to be well to help them in their suffering. You need to be well to not take things personally. You need to be well to be there for your other responsibilities as well (especially if you’re a parent and/or work outside of your caregiving duties). Notice how I’m saying “well” and not “strong.” Being “well” can also mean allowing yourself to be vulnerable with your own emotions and processing them with a safe person (like a friend, family member, support group or your own therapist). Being well doesn’t mean to always have a smile on your face, it simply means having an adequate tank of gas that will get you to your destination safely. I should also say that while this coping/self-care plan might not erase the pain/grief you’re experiencing, but it can help you manage the feelings and stress. So what does a coping or self-care plan look like? It might be different for everyone, but some ideas are:
- Making sure you eat, have coffee, or plenty of water before going into your caregiving duties
- Making it to your own health appointments
- Coming up with grounding techniques that can help soothe you when you’re experiencing painful emotions
- Allowing friends/family to take you out to dinner/movie
- Asking others for help (sooooooo important)
- Finding (realistic) pleasant activities you can do for yourself (going on walks with your BFF, baking, crochet, yoga, stretching, dancing, play dough, sports, hiking, swimming, etc). Pleasant activities help you add gas to your tank.
- Engaging in the things that soothe you using your 5 senses (taste, touch, vision, hearing, smelling). Doing these things with awareness and intent, can help you pass the time during the most difficult moments. A favorite lotion, warm tea, ambient music (or any music that’s soothing to you, like nature sounds), fresh cut flowers, a weighted blanket to sleep can all help you fill up your tank or reduce your emotional vulnerability (note: many of these links are amazon affiliate links. See disclosure statement below). For other ideas on items that promote comfort check out an older post focusing on items that inspire healing.
- Finding meaning in the suffering is something that comes up a lot in resilience and post traumatic growth. Your pain and suffering over watching your loved one suffer means that you care deeply for them.
- Compassion for you, your family members and loved one is going to help you save the day, everyday! Compassion sounds like, “I know this is hard right now. Be good to yourself;” “That was really hard to listen to, we’re all in so much pain;” “My loved one said something so mean to me. And while it hurts, I know that we’re all suffering.” Compassion in the truth of the situation can lead you to problem solving such as “We need more help to get through this.”
Inform yourself. Inform yourself about the diagnosis by asking your loved one’s doctors for reading material, websites, support groups, books. Knowing about the illness can help prepare you for what’s to come and can give you tips about how to make your loved one more comfortable. Cancer is a monster of a disease that can look differently in each person. This Advanced Cancer booklet titled “When Someone You Love Has Advanced Cancer,” is a comprehensive resource that can provide important information about the illness, the process and lots of wonderful suggestions. Amazon and other bookstores can be a great resource to find specific books for the particular illness your loved one is diagnosed with. I also have an extensive list of book recommendations here.
Respite. Finding sources of respite is going to be incredibly important for you as a caregiver, but also for your loved one. Having someone else help you with cleaning, caregiving or other supports can be helpful. Talk with your loved one’s doctor, social worker or case manager to see if there are respite resources that can help. For example, in California, there is In Home Supportive Services that’s an alternative to out-of-home care. They have specific criteria (like having medi-cal is one of them), but the doctor can tell you if your loved one is eligible for the program or if there is another that offers some type of respite support. There is also Access Transportation services that can help with transportation to medical appointments.
Support Groups. Support groups are a great way to get support from people going through the same thing as you. Ask your loved one’s doctor if they know of any for that particular issue, or look online. Facebook also has lots of groups that you can virtually participate in. They can help you feel less alone and normalize what you’re going through. While everyone’s grief and vulnerability is different, having the experience of connection during this difficult time can make all the difference.
Medical Providers. Your loved ones medical providers are going to be crucial for you and your loved ones. Make lists of questions for them to answer at dr. appointments. Keep a notebook where you are jotting down questions, things to clarify or even signs and symptoms they need to know about.
Nearing the end of life. While death is a natural part of life, it doesn’t make it any less painful to deal with. The reality is that some of you and your loved ones will be dealing with this painful stage together. As a mental health practitioner, I can’t stress enough engaging in your own mental health treatment for depression, anxiety and grief while in this stage. I also found a good resource that about Nearing the End of Life that you can read more about here. You’ll also want to have the difficult conversation about life planning, what dying with dignity or what quality of life during this stage means to your loved one.
How to help your loved one. There’s so much to say about this. In short, I’ll say that you can’t help them unless you help yourself. Do what it takes to get you to the most compassionate, validating and patient place in your heart. When we’re stressed, grieving and dealing with competing priorities, we’re vulnerable to our emotions and react. If you can imagine a bear caught in a trap reacting in rage if someone gets near it (have you ever stubbed your toe and cursed so loudly your neighbors heard?). It’s pain. Pain can make us react with rage, anger or irritability. Reminding yourself that you or your loved one is in the “bear trap” and following up with compassion is what can help both of you the most.
Finally, I hope this post was helpful in you realizing that you too are a priority in your loved one’s care and death. It’s never easy and always painful. May you find comfort in knowing that it’s incredibly painful because your love for them is so great.
*Disclosure statement: Please be advised that some of these links are affiliate links where I earn a commission, percentage, a big thank you or a high five when they’re purchased. Others are simply my favorite in Los Angeles County. Please note that this post is strictly for ideas and does not replace medical and professional help. I strongly encourage that you or your loved one to engage in therapy or speak with their medical professional about any of these items. If you find yourself in a medical emergency where you or a loved one is a danger to themselves or others, you are strongly urged to call 9-1-1 or go to your nearest emergency room. The National Suicide Hotline number is: 1-800-273-TALK (8255). In Los Angeles County, you can also call the Department of Mental Health’s Psychiatric Mobile Response Team – Access Hotline at 1-800-854-7771.
