Navigating the final weeks at home
Make a plan for visitors to avoid you or your loved one being overwhelmed.
Take care of your own emotional needs to make sure you can be there for your loved one.
Your hospice or doctor will help you form a plan and know what to look for.
When the time comes, you can wait to call the doctor, if you prefer.
Above all, know that whatever you are feeling is valid and a normal part of the process
Hospice care allows a person to be comfortable, cared for, and surrounded by those they love during their final days. It can both be a blessing for your family and feel overwhelming—you are, after all, processing the inevitability of your loved one’s passing while simultaneously tending to their needs.
This timeframe is often referred to by the medical and death care industry as an “expected death,” which means that your loved one has been diagnosed with a terminal condition and their passing will happen naturally in time. This phrasing may make it seem to be routine, but it’s still normal to struggle with complicated emotions during this period.
There is no one way to witness or process a loved one’s decline. It’s not uncommon to feel a little lost. You might find yourself needing extra guidance on what to expect, how to balance new responsibilities and daily life, and putting together other planning pieces that should be in place.
Communicate about visitors
While your loved one spends these last weeks or months at home, friends and family are likely to want to come and say their final goodbyes. It can be overwhelming to constantly have a revolving door, both for you and for your loved one. It can be helpful to establish boundaries to make sure this well-intentioned series of visits does not become a source of discomfort.
If your loved one is able to contribute to this conversation, ask them what their limits are, and figure out a signal for them to let you know that they’re feeling worn out. It is often a good idea to create a schedule, a set of “visiting hours,” or a curfew so that you can protect your loved one and avoid conflicts.
Balancing frustrations with grief
Having a loved one in your constant care is challenging. It shakes up your daily routine and can affect your performance at work. It changes the dynamic of other relationships in the house, and it takes a lot of sacrifice from everyone involved. Make no mistake, this can be extremely frustrating, and that frustration is further complicated by the fact that you’re preparing for a great loss.
This complex web of emotions is to be expected, and there are ways to balance them so that you don’t burn out. Make a plan to ensure you have space for your own needs. Schedule time when you don’t need to be accountable for care. Find activities that bring joy to both you and your loved one that you can do together. And make sure you speak to other family members with the understanding that you’re supporting one another without judgement.
There is no one way to witness or process a loved one’s decline. It’s not uncommon to feel a little lost.
It’s OK to feel frustrated one moment and overwhelmed by sadness the next. Knowing your loved one will soon pass away is not easy, and neither is caring for them in the present moment. Take care of yourself through this process.
When the time comes
It can be difficult, especially for caretakers, to watch a loved one’s health decline even more as the end nears. You might notice more labored breathing, decreased appetite, perspiration, dry mouth, and other symptoms—all of which are signs to take care of any final needs. If you’ve planned to have anyone else there to support you, try to have them standing by.
Make sure you or another trusted family member knows where to find important documents and items (like keys to the house). Consider letting doctors, lawyers, spiritual leaders, or other important people know the current situation.
In the case of an expected death, you should not call 911, nor do you need to report the death right away. If your loved one was under the care of a physician, you should call them, or call their hospice care provider—but only when you’re ready. You can choose to spend some time with your loved one to say final goodbyes or perform any religious or cultural customs.
Once a medical professional is called, they’ll officially pronounce your loved one dead, and you can arrange for their body to be transported to the funeral home or crematorium. If for any reason you are not able to get in touch with the hospice team or a doctor, contact the state‘s department of health and they will instruct you. You may need to have your loved one transported to the hospital, and it can be helpful to have a Do Not Resuscitate document handy in this case.
After the pronouncement has been made, you can begin the process of letting family, friends, doctors, employers, and others know about their passing, and start to make funeral arrangements.
If your loved one is in their final days, your hospice or care team will likely have a plan for you to follow, as well as advice on how to deal with delicate conversations and take care of yourself during this time. They’ll also be able to give you specific symptoms to look for based on your loved one’s condition. If you have questions specific to your situation, be sure to ask your doctors, nurses, and hospice professionals ●
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