You’re never truly ready to let a loved one go, even if they’ve suffered a long-term illness that has caused a slow decline in health. And as a caregiver for someone approaching death, the release can be even more painful.
You’ve created routines to make them comfortable. You’ve shared quiet smiles and inside jokes. They’ve relied on you for their physical wellbeing and emotional support. You’ve given your time and heart so you can provide them the dignity they deserve. You’ve had difficult conversations about saying goodbye and made room for little regret.
As a caregiver, you’ll go through a roller coaster of emotions during your loved one’s final days. How can you navigate these days with grace and all of the mental and emotional turmoil you’ll experience?
Heart to Heart Hospice has walked alongside thousands of families to help navigate the death of a loved one. Grief is understandable and healthy. While caregiving can be all-consuming, taking care of your own mental health needs helps alleviate some of the stress. Below, we offer some ideas of what to expect and tips for caregivers who are tending to loved ones approaching death.
Acceptance is Vital
Because you’ve called on hospice care for support, you have most likely already accepted the fate of your loved one. But often, many aren’t ready to die or to let someone go, which can cause bitterness. Finding ways to accept death will help bring closure when it happens. If that’s difficult for you or your terminally ill loved one, reach out to your Heart to Heart hospice team for support and advice.
What to Expect Physically
When a hospice patient is nearing death, physical and behavioral changes are certain to take place, whether it’s gradual or rather sudden. Heart to Heart Hospice has a comprehensive Patient and Family Handbook for our families to help you know what to expect. An overview includes expected changes in the following areas:
- Socialization – They may withdraw or be unable to speak. Keep communicating with them in loving ways and with gentle touch.
- Behavior – A terminally ill patient may become irritable, aggressive, or depressed. Healthy coping on your part as the caregiver may require support, stepping away temporarily, and communicating with understanding.
- Appetite – It’s natural to lose interest in food. Don’t force them to eat and allow them to go at their own pace.
- Bodily functions – Keeping your loved one comfortable is a priority, and providing dignity when dealing with incontinence.
- Breathing, body temperature, cognition, and restfulness – These areas are also impacted as death approaches. Some may require comfort measures, patience, and regular routines to help with confusion.
Our hospice team can help you respond to these changes and walk you through expectations. Our Heart to Heart team will monitor your loved one’s decline so that in the final hours, a hospice team member can be available to be at your side upon your request.
Hard Conversations and Saying Goodbye
“Only in the agony of parting do we look into the depths of love” – George Eliot
One of the greatest gifts you can give your loved one is “permission” to go without guilt for leaving you behind. Without reassurance, many terminally ill patients try to hold on and may even suffer longer. These conversations, while difficult, provide closure and give you both a healthy release.
If possible, choose a time when your loved one is alert. Even if they’re not responsive, share your thoughts and feelings as a gift to them. Studies show hearing is typically the last sense to go in the dying process, so loving words or beloved songs can still connect you and your loved one. It might be helpful to plan your thoughts in advance.
- Earlier in the process, it’s okay to discuss funeral wishes when they are ready.
- Hold their hand or lie in bed beside them if possible.
- Read them a favorite spiritual passage, poem, or book.
- Play or sing a favorite song.
- Letting the tears and emotions flow is healthy. It shows you love them deeply.
- A few conversation starters could be:
- What I love most about you is…
- One of my favorite memories with you is…
- What I’ll miss most about you is…
- What I’m most sorry for is…
- Thank you for…
Managing Your Stress and Grief
Caring for a dying loved one undoubtedly brings waves of grief and stress to your physical, mental, and emotional wellbeing. Accepting and acknowledging your losses are important first steps. The day-to-day care of a hospice patient leaves little room for your own care, but it’s critical to carve out ways to tend to your own health.
A few tips to manage your stress include:
- Take necessary breaks. Ask for help if needed, even calling in respite support from your hospice team.
- Remember your basic physical needs by eating well, staying hydrated, showering, sleeping, and exercising, even if it’s taking short walks.
- Connect with others and find a support system, such as a support group or counselor.
- Find healthy outlets to cope, like journaling, time with pets, and talking with loved ones.
- Listen to music, meditate, seek spiritual support.
After the death of your loved one, you will likely feel shock, sadness, relief, guilt, disappointment, anger, or a combination of these emotions. Serving as their caregiver will add layers to your grief, for which there is no formula or timetable. In future posts, we’ll share even more resources for bereavement and grief after a loss.