More and more people nearing the end of life are deciding to spend their final days surrounded by loved ones in the comfort of their own home. They may seek the privacy, peace and security that home offers and feel more in control of their experience. A familiar view, their own space, and friends, family and pets close by can be very reassuring.
As a caregiver, the decision to support your loved one’s wishes and offer end-of-life care, is a very difficult one. There are many steps to take to make sure your loved one is as comfortable as possible and that you have the support you need.
- Clarify Expectations: If you haven’t already, make sure you understand your loved one’s wishes and share them with everyone involved. Many people approaching death may prefer to stop treatment, focus on comfort and limit life-support machines. These incredibly difficult decisions should be laid out in an Advance Care Directive. Having a plan will help reduce your anxiety and give you comfort knowing that your loved one’s wishes are met.
- Adapt for Comfort: To provide end-of-life care, you will likely have to make some changes to your home. Equipment including walkers, wheelchairs, ramps, light sensors, a hospital bed, lifting machines, raised toilet seats and bath chairs can all make the home more comfortable and safe. You may also need to rearrange your space to keep your loved one close to family, away from stairs and near a bathroom to make caring easier. An Occupational Therapist can help you prepare your home and assist with purchasing or renting necessary equipment.
- Share the Responsibility: Make sure that there are enough people to share the care—you can’t do this alone. Reach out to family, friends or professionals to help you meet around-the-clock demands. Errands, meal prep and household duties can be easily outsourced so you can focus on your loved one and enjoy your final moments together. Organizations like VHA Home HealthCare offer nursing services, pain and symptom management, physiotherapy, personal support services and respite care to make your loved one more comfortable and to help you cope.
- Have a Backup Plan: If symptoms change or home care becomes unmanageable, it’s helpful to have looked into hospice or palliative care alternatives. By staying flexible and keeping your options open, you will feel less guilty if things change quickly. Instead of promising your loved one a home death, tell them that you will keep them home as long as possible and will regularly check in with their health care team. Periodically ask yourself if you loved one is comfortable, if their wishes are being met and if you feel physically and emotionally able to care for them.
- Know What to Expect: As a palliative caregiver, it’s helpful to know what changes you’ll see in the last weeks, days and hours of life. While you can never be fully prepared, understanding what to expect when someone passes away, can make things less traumatic. The death of a person with a terminal illness is not an emergency, so there is no need to call 9-1-1. It’s ok to spend time with your deceased love one, especially if it’s in the middle of the night, or if there are cultural or religious customs that are important to you. When ready, call the doctor or health team that has been overseeing your loved one’s care.
With these tips for end-of-life care, you can make the most of the time you have left with your loved one. Though incredibly challenging, by taking things day-by-day and hour-by-hour, a death at home can be a rewarding and meaningful experience you share together.