A checklist for caregivers in three areas of support: medical, practical, and emotional
By: Linnea Crowther
7 months ago
If your loved one has received a terminal diagnosis, you are likely scared and/or overwhelmed. You know there's a lot for you to do, as you're an important part of their support system, but you don't know what it all is. Here's a checklist of what needs to be done to provide care and prepare for their death.
We've divided the checklist into three key sections: Medical, Practical, and Emotional. There are important steps to be taken in all three sections, so even if medical considerations feel like they're the most important right at this moment, you may need to balance your attention across all three categories.
This list is for anyone who will be a primary caregiver to a loved one with a terminal illness: a spouse, a parent who's responsible for the care of a child, an adult child who's responsible for the care of a parent, etc. Anyone who's facing a loved one's terminal illness but is not a primary caregiver might not need to attend to every item on this checklist, but there will still be some items that apply.
You don't need to complete every one of these items immediately. There's a lot on this list, and it's more than a day's work. Enlist help where you can — if you have friends and family asking what they can do to help, you may be able to have them assist with some of the things on this list.
Make sure you fully understand the doctor's diagnosis and all it entails. You may choose to get multiple opinions. If the consensus is a terminal illness, take the time you need to ask questions and get understandable answers about what to expect in terms of symptoms, how best to help your loved one, and how much time they have left.
Assess your ability to be a caregiver. Caregiving for a person with a terminal illness can be a full-time job and can require physical strength as well as including intimate contact with the person's body and bodily functions. It's okay to admit it if the truth is that you don't have the ability to be the sole caregiver, for any reason. If needed, enlist help from family and friends or a professional caregiving agency.
Learn about hospice options. Hospice is typically intended for the last six months of life or less. If the doctor has indicated your loved one has less than six months to live but hasn't mentioned hospice, ask about it. Then read about the differences between inpatient hospice facilities, hospice care within nursing facilities and hospitals, and at-home hospice, and work with your loved one to determine which is right for them. Here's an introductory guide to hospice.
Learn about palliative care options. Palliative care aims to reduce your loved one's pain and discomfort while they approach death, but is not treatment intended to cure. Your loved one has the right to be as comfortable as possible during their dying time. Talk to their doctor about what can be done to maintain their comfort.
Make sure your loved one's essential documents are completed. These documents include a will, living will, HIPAA release, powers of attorney for health and financial needs, and disposition of body directive. Here's an explanation of what each of those documents involves. Having these documents completed will help you do your best at carrying out your loved one's wishes and caring for them during their dying time.
Know the basics of all your loved one's accounts — utilities, bank, credit, online, etc. It will be crucial for you, or somebody, to know details like the passwords to online payment portals, the location of safe deposit box keys, which credit cards your loved one holds, and so on.
Locate any life insurance policies. Some insurance policies may offer partial benefits before death if your loved one has a terminal illness. You should look into this, and even if a policy doesn't, it will be important to have it on hand after the death.
Work with your loved one to create the dying space they want. When we know death is approaching, we can do a lot to control the death environment and make it as comforting and positive as possible. Talk to your loved one about what they want and help implement as many of their desires as are feasible.
Contact a funeral home. You can begin discussions with a funeral director prior to the death, which will alleviate some of the stress and urgency of making funeral arrangements immediately after the death. You will also want to know which funeral home you're working with so you can contact them upon your loved one's death. If you haven't already chosen a funeral home, you can search local options using Legacy's nationwide funeral home directory.
Make arrangements for body disposition. If your loved one hasn't already indicated what they want done with their body after death, it's an important conversation to have — many people have strong preferences and a need to know that their wishes will be carried out. Here are the basic options. While a funeral home can guide you through how to handle most common methods of body disposition, such as traditional burial and cremation, you may need to make special arrangements for some methods, such as donation to a medical or scientific research facility. Ensure that your loved one's wishes can be honored by doing the legwork on this ahead of time if possible.
Write or prep an obituary. Your loved one may want to be involved in the writing of their obituary. They may even want to write their own obituary, with minor updates to be made for details upon their death. Whether they want to be involved or not, you can make sure you have the time you need to create a beautiful and loving remembrance of your loved one if you do at least some work on it in advance. It can be stressful to write an obituary immediately after a death, when you need to rush to get it to the newspaper for publication. Legacy's online assistant ObitWriter can help make writing and publishing an obituary easier.
Determine what charitable donations would best honor your loved one. If your loved one has been involved with a charity, as a member, volunteer, or supporter, they may want memorial donations to go to that charity in lieu of flowers. Even if they haven't been heavily involved, they may still want to honor a charity after their death. Have a conversation about this to make sure you know what your loved one wants. Here's a directory of commonly considered charities.
Have a lawyer. There will be legal matters to be taken care of after the death. If your family doesn't already have a lawyer, you may want to choose one now, so you'll know who to turn to when legal help is needed.
Know what steps will need to be taken upon the death. You can do a lot of preparation before a death, but there are other things that must be completed after a death. Be aware of these items so you know what to do when your loved one dies.
Take some time to look at grief support options. Your grief for your loved one is unlikely to wait until their death. It probably began when you first understood that their illness is terminal, and it will evolve throughout their illness and continue after their death. You don't need to grieve alone, though — grief support resources are there for you, whether that's counseling, group therapy, online support groups, books, or a combination of all options.
Contact clergy. Whether you've got a favorite pew to sit in every week or you only make it to church or temple on the major religious holidays, it's important to reach out to your spiritual leader(s) after learning of your loved one's terminal illness. They can provide much needed support to both of you and the rest of your family, and they may be aware of resources for your practical and emotional support.
Contact friends and family who need to be informed. There could be a long list of people who need to be informed of your loved one's illness, from close family to old friends. It's okay to ask for help with this; for example, one family member can help you contact all the members of the extended family, and one college friend can reach out to that broader network with the details.
Help your loved one cross items off their bucket list. Although there may be lifelong dreams that can't be accomplished at this point, like international travel, you may be able to help accomplish other dreams before their death. If your loved one has always wanted to read the classics, you can read aloud to them. If there's a favorite celebrity they’ve always wanted to meet, you can reach out and see if something might be arranged. It's unlikely you'll be able to complete an entire long list, but you can talk about what they wish for and help with any feasible wishes.
Help facilitate any difficult conversations. Your loved one may have some difficult relationships or some long-standing regrets. As they face their approaching death, they may feel a need to resolve any disputes or bad feelings. You can help with this, starting by opening a conversation about what personal regrets they might have. You may be able to help by reaching out to the people they want to talk to, or by providing an introduction to the conversation, or even by telling others the hard things that your loved one is unable to say. If you're not the best fit for facilitating a conversation with a particular person, you can ask friends or clergy to help – sometimes a neutral third party is necessary.
Have the conversations you need to have. If there's something you've always wanted to say but never said it — assuming it's not a negative thing that will cause distress and turmoil to your dying loved one — now is the time to say it. It may feel hard to raise a topic that you've shied away from for many years, but it'll be harder to regret not saying it when you were able.
Put the mask on yourself first. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping any children in your care? They say this because you won't be any good to those who depend on you if you can't breathe yourself. This applies in caregiving too, and it's very important to remember. Even as you devote much of your time to your loved one, you still need to eat healthy food, get some sleep, and care for your mind and body. It's okay to ask for help, and a friend or family member can step in for an afternoon if you need to take a break from caregiving. You will be a better caregiver to your loved one if you also take care of yourself.
And as you work through the checklist, make sure you're leaving space in your life for the most important thing: time with your loved one. As their death approaches, your presence by their side may be the most important thing.