Anxiety Support for the Hospice Patient and Caregiver

I remember taking care of a hospice patient with lung cancer in Portland, OR while my mom was sick with the same disease 1000 miles away. My mom was about to sign onto hospice too. I got this inspired idea to fly down and take care of my dying mother. I took time off work, packed up my one-year-old son, and flew to California to temporarily move in with my family of origin. 

I had a year and a half of nursing under my belt and one year of experience at an AIDS hospice. I felt confident. “I got this,” I thought to myself. I imagined talking to my mom in hushed tones about her death, comforting her, and medicating her pain away while the entire family gathered around as she breathed her last breath. I would help her have a beautiful dying experience.

As soon as I got there, I felt a wave of panic, fear, and terror. The living room had medical supplies strewn about. Her morphine and suppositories were on the kitchen counter next to the blender. My mom’s energy had significantly waned since my last visit, and she needed assistance to get out of her chair. I felt a jolt of anticipatory grief, taking the wind instantly out of my inspired sails.

Anxiety is the feeling of dread or overwhelm that comes when something is not quite right. It is often connected to uncertainty and loss of control. Dr. Edmund Bourne, Ph.D. specializes in the treatment of anxiety disorders and reports that anxiety is a normal human reaction that helps us to “cope with situations that are demanding, unfamiliar, or potentially threatening.” Caring for your loved one at the end of their life is all of these.

Although I had been a nurse for a minute and had worked with dying patients, I realized nothing could have prepared me for the gut-wrenching experience of taking care of someone I love. Anxiety is normal when taking care of a hospice patient. Your life has turned upside down physically and emotionally. 

Take a breath and honor this state of overwhelm. It’s legitimate.

My mom did not want to talk to me about her death, ever. I gave her morphine but that would not prevent her from suffering her losses of independence and control as she edged closer to dying. The family was not gathered for her final breaths. My sister and I were there and were both surprised when she died.  

Take another breath and throw all of your expectations into the sea. 

My expectations and my own desires caused me further anxiety. We cannot control another person's experience in death or in life for that matter. To minimize your feelings of overwhelm, focus on what you can control. You can take care of yourself so you can love and nurture your loved one.

Do not strive for perfection. 

You will find yourself in some surprising, awkward, and clunky situations while caring for a hospice patient: cleaning out the commode, washing vomit off your cat, and sweating profusely as you try to give your loved one a bedbath. Caring for your loved one will not be perfect, but it will be one of the most loving things you can do for them, which is the most important thing. 

Find some practical information about how to care for the dying. 

Most hospices have a binder they give to the patient that is loaded with excellent information. Find it and arm yourself with knowledge. So much of our anxiety comes from the fear of not knowing what to expect. If you don't have that binder or it isn’t giving you the support you need, you can get my book “Some Light at the End” which includes information on how to manage medications, anxiety, pain, declining energy, and appetite. I would also recommend the book “Final Gifts” by Maggie Callanan. Callanan talks about the subtleties of end-of-life communication and the emotional needs of the dying.

So much of our anxiety comes from our fear of the unknown. Find some practical information about how to care for the dying and feel empowered with knowledge.

My youngest reader, Ellie Price

Assemble your team. 

You will need relief from caregiving duties — help with food, laundry, pharmacy runs, and grocery store runs. Again, you can only do so much. Give yourself the grace of time, space, and assistance. Remember the hospice team is also there for you. You can have conversations with the social worker and chaplain about your own anxiety. They may be able to provide you with some resources. Utilize the hospice RN and aide as much as they will let you. This will alleviate some of the physical and emotional overwhelm. 

Fill your well in whatever ways are healthy and sustainable during this time. 

Netflix and nachos are short-term solutions. Leaving the house is good for you. Mindfulness, breathing, meditation, massage, exercise, and nature are all spiritually refreshing. Learning to sit with your uncomfortable feelings may allow them to soften; this 5-minute practice is a great starting point with my favorite meditation guide Tara Brach. Here is my blog on self-care for the caregiver. You cannot give care when you are depleted. 

Now let's talk about the patient’s anxiety. There are so many reasons for a patient to feel anxious, and sometimes it's not easy to suss these out. They are losing control, independence, energy, and time; all of these are causes for alarm. 

Look for any underlying physical symptoms. 

Sometimes, the hospice patient has underlying physical symptoms causing the anxiety such as shortness of breath, nausea, and pain. Ask the hospice team for help in finding and fixing any underlying issues. 

Help them tend to unfinished business. 

If they are nearing the end of their life, is there any unfinished business they may need to tend to? Do they fear death, dying in pain, or do they have unresolved guilt or conflict with a family member? Hospice social workers or chaplains are excellent resources and especially skilled at leading these conversations.

Collaborate to create a calm environment. 

Let family and friends know the patient is anxious and brainstorm ways to mitigate environmental stressors. Dim the lights, speak in hushed tones, turn on soothing music, and limit visitors. 

Get some anti-anxiety medication. 

Medications such as lorazepam (Ativan) or diazepam (Valium) are frequently used for anxiety. Call the hospice team for medication guidance and orders based on the patient’s disease and tolerance. Start with the smallest dose to see if it helps. I think medications are a great way to soften the intensity of this process. One 0.5 mg tablet of Ativan will not take away their anxiety but may give them some temporary relief.

Find some distractions from the stress and uncertainty. 

Consider reading a prayer, a guided meditation, or a poem to the patient; sometimes this is a helpful distraction. 

Some hospices offer massage, reiki, and acupuncture. Ask if these are available for the patient. 

Changing the scenery in any way may be helpful. Taking a walk in nature, driving to the country, or pushing your loved one around the block in a wheelchair may offer a perfect diversion and some relief. 

Some patients may fear being alone. Have a chair near the patient to sit and read, knit, or watch TV with them. Presence, and often silent presence, is what they need most. 

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Feelings of dread and overwhelm are normal and anticipated states for a hospice patient and their caregiver. Of course nothing feels right. We have spent our entire lives figuring out how to live, and now we suddenly have to think about death and dying. Take a breath and honor these intense feelings. Take care of yourself, minimize your expectations, allow others to help, and call on the hospice team for support and guidance. 

This blogpost was originally written for Dying Matters, Hospice UK.

Blessings.

Here are my classes and books to gather practical information about how to care for the dying and feel empowered with knowledge.

My book provides end-of-life guidance for patients and caregivers.