Most people worry that their final days will be filled with pain and agitation. Usually the opposite is true. In the days and hours before people die, they typically spend most of their time asleep or resting. It’s rare for pain to get worse or for distressing symptoms to appear. Most often, the various body systems just gradually and quietly shut down.
The people who are dying may worry that family members will feel lost and unable to cope. Yet, a person’s needs at the end of life are usually diminishing. Your father likely won’t eat or drink much if anything, but he won’t feel hungry or thirsty. His mouth may get dry, and you can give him some relief by wetting his mouth with a damp cloth or sponge, or with ice chips. Any pain or distress your father may feel will usually be well controlled by medications.
In your father’s final hours, his breathing will become less regular. Gradually it will slow and stop. Even without special training you will be able to recognize when the end is near, simply by the changes you observe, especially in his breathing.
You probably won’t be tempted to call 911. You’ll have spent enough time at your father’s side to recognize that what you’re seeing is a very natural progression of his illness. There may be times when it is reasonable to call emergency services. For example, something may come up suddenly that causes your father a lot of distress. You may not have the knowledge or ability to deal with his distress, and it may be that the health care team can’t respond quickly. In this case it’s appropriate to call 911 for help. Such situations aren’t common, and usually you’d try to contact your father’s health care team first.
Caring for your father at home can be a demanding experience both physically and emotionally. Your family will need to work together and help each other in order to manage. It’s also important to use the services of the health care team. They will help you with your father’s care, and they can set up home care services to give you the support you’ll need. You’ll have to be aware of your limits as caregivers, and know when to ask for help, in order to provide the best care possible for your father.
When you’re caring for someone at home you and your family need support also. This may be a very difficult time for you all, and you may need lots of answers in order to feel less worried. It’s easy to imagine that you’re the only one with such your worries, as we talk so little about death and dying in our society. Be assured though that others in your situation have very similar concerns. It’s just that people don’t always have the courage to talk about them.
Your father wants to die at home, and you want to respect his wishes. It may happen, though, that despite your best efforts, this doesn’t happen. For example, your father may have an emergency that takes him to the hospital and he doesn’t come home. If something like this happens, it’s easy to feel bad that you weren’t able to meet your dad’s wishes. Remember instead that your father was able to spend a lot of time at home, with a lot of your support.
Most palliative care programs can tell you exactly what needs to be done for expected death at home. It’s important to check with your father’s palliative care team to find out the steps you need to follow. They may advise you to make arrangements with a funeral home and the medical examiner. Often this means that your father’s physician will send a letter to the medical examiner’s office and the funeral home in advance, letting them know that a death is expected. The funeral home will be able pick up your father’s body from his home.