What to Do When a Loved One is Terminally Ill

When Leanne’s father was diagnosed with frontotemporal dementia (FTD), his family knew the prognosis was not good. The average survival time for FTD is typically 3-5 years, and Leanne’s father has already had the disease for two years. Leanne and her brother really want to spend quality time with their father, but they’ve come to realize that a diagnosis of a terminal illness brings with it an emotional roller coaster and a reshuffling of priorities. How can they cope?

When someone we love has a devastating and debilitating disease such as FTD, our entire world instantly comes to a screeching halt. Unfortunately, there is no magic formula to cope. Although this can be one of the most difficult things you encounter, there are things you can do to help yourself while you help your loved one.

  • Learn about what to expect with the disease. This will help you prepare for the future and the road that lies ahead for your family. Prepare a list of questions for the doctors treating your loved one, and don’t be afraid to ask them. If you are doing your research online and are reading patient forums, try to keep in mind that many symptoms described are usually worst care scenarios. Many illnesses also have support groups — both the patient and the family members.
  • Laugh and enjoy your time with the person. Try to create memories that will warm your hearts and comfort your souls. You don’t want to force humor in every single situation, but if something funny arises, it’s okay to laugh and smile. Often, family and friends become so somber that they unintentionally drag the patient down. Laughter can truly be the best medicine.
  • Help Your Loved One Maintain Their Dignity. Always remember that the person you love is still inside there. Don’t talk about the patient like he’s not in the room, even if the patient isn’t coherent at the time. Leave the room to have those uncomfortable, emotional discussions. Do not make a big deal about bodily functions that change or sometimes disappear because of the illness. Do not change the patient’s clothing, diapers, bed sheets and other items with others around. Try not to do anything you would not do if the patient was coherent and healthy.
  • Don’t Stay Away. Initially when a person receives a devastating diagnosis, the outpouring of support is wonderful, but as the disease progresses, many individuals become uncomfortable and opt to stay away. Regardless of how upsetting it is or what you may hear from others – try to make time to visit. Text messages and emails are nice, but a face-to-face visit is a priceless gift.
  • Give Them Permission to Go. This is perhaps the most difficult form of support you can offer a terminally ill person. Even when it is time to say goodbye and you have had the time to prepare yourself, often nothing can fully prepare you for the gut-wrenching grief of your loved one leaving this earthly existence. Assure your father that everything has been taken care of, that his wishes will be respected and family members will look after one another. Tell him that you will miss him and cherish all of the precious memories. Tell him that you will honor his memory and be his living, breathing legacy. Hug and kiss him as much as the situation allows. Let him know it is okay to go when the time has come. Pray with him if that is your custom, or at least assure him that you will be together again in the afterlife. Not sure about thee reality of the afterlife? Read some or all of the books on this list and your doubts will be forever gone. Resolving any fears or obstacles will create a peaceful passing for your loved one and will help you as you begin your grief journey.

Handling Challenges and Concerns Associated with Terminal Illness

As you can imagine, a diagnosis of a terminal illness brings with it a wealth of new challenges and concerns. The instant you learn that someone you love dearly is terminally ill, it’s difficult to know how to handle it. Regardless of how you react, life goes on, sometimes too quickly, as soon as that diagnosis is made. That’s why you should have the peace of mind of knowing what the person’s wishes are and have all legal documents in order and accessible. Here are some things you should be aware of when a loved one is dying:

  • Know the location of the trust, will, birth certificate, marriage and divorce certificates, Social Security information, life-insurance policies, Veternans discharge record, financial documents, and keys to safe deposit box or home safe.
  • Know the person’s wishes about funeral arrangements, organ donation, and burial or cremation (these are contained in their estate/incapacity planning documents).
  • Ensure that your father completed a comprehensive advance medical directive (not just an outdated and old-fashioned “living will”) which specifies wanted and unwanted procedures, while he is still competent and of sound mind. This includes appoint a health-care proxy to make medical decisions when he becomes unable to, and ideally should include our proprietary Long-term Care Directive™ to address his wishes related to long-term care when that need inevitably arrives.
  • Help your father decide whether he wants his doctor to sign a Durable DNR (Do Not Resuscitate) order to tell health-care professionals not to perform CPR or other emergency rescucitation efforts (cardiac compression, intubation, artificial ventilation, defibrillation, and related procedures) if the person’s heart or breathing stops.

What to Do When a Loved One Passes Away

When your loved one passes away, below is a checklist you can use, when needed, to keep a sad event from becoming even more painful and more stressful. Remember, responsibility for the various actions can be divided among family members and close friends of the deceased, or an an attorney can of course be retained to accomplish these tasks

___ Get a legal pronouncement of death. If no doctor is present, you’ll need to contact someone to do this:

  • If the person dies at home under hospice care, call the hospice nurse, who can declare the death and help facilitate the transport of the body.
  • If the person dies at home without hospice care, call 911, and have in hand a do-not-resuscitate document if it exists. Without one, paramedics will generally start emergency procedures and, except where permitted to pronounce death, take the person to an emergency room for a doctor to make the declaration.

___ Arrange for transportation of the body. If no autopsy is needed, the body can be picked up by a mortuary (by law, a mortuary must provide price info over the phone) or crematorium.

___ Notify the person’s doctor or the county coroner.
___ Notify close family and friends. (Ask some to contact others.)
___ Handle care of dependents and pets.
___ Call the person’s employer, if he or she was working. Request info about benefits and any pay due. Ask whether there was a life-insurance policy through the company.

Within a few days after death

___ Arrange for funeral and burial or cremation. Search the person’s documents to find out whether there was a prepaid burial plan. Ask a friend or family member to go with you to the mortuary. Prepare an obituary.

___ If the person was in the military or belonged to a fraternal or religious group, contact that organization. It may have burial benefits or conduct funeral services.
___ Ask a friend or relative to keep an eye on the person’s home, answer the phone, collect mail, throw food out, and water plants.

Up to 10 days after death

___ Obtain death certificates (usually from the funeral home). Get multiple copies; you’ll need them for financial institutions, goverrnment agencies, and insurers.
___ Contact a trust and estates attorney, such as the Farr Law Firm, to learn how to transfer assets and assist with probate, IF probate is needed.
DO NOT under any circumstances take the decedent’s last will and testament to the courthouse to have it probated without first consulting with an experienced probate attorney to ensure whether probate is actually needed and, if so, what type of probate.

___ Contact an accountant or tax preparer, to find out whether an estate-tax return or final income-tax return should be filed.

___ Contact the decedent’s:

___ Investment adviser, for information on holdings.
___ Bank, to find accounts and safe deposit box.
___ Life insurance agent, to get claim forms.
___ Social Security (800-772-1213; and other agencies from which the deceased received benefits, such as Veterans Affairs (800-827-1000;, to stop payments and ask about applicable survivor benefits.
___ Agency providing pension services, to stop monthly check and get claim forms.
___ Utility companies, to change or stop service, and postal service, to stop or forward mail.

Be Prepared for the Inevitable

Unfortunately, we will all die, and it will undoubtedly be a sad and stressful time for the loved ones we leave behind. So why not make it as easy on them as you can? Once you have taken the step of speaking with your loved ones about your wishes, it is important for them to sign Incapacity Planning documents, including an Advance Medical Directive and General Power of Attorney, to make their wishes legally enforceable. Call us to make an appointment for an initial consultation:

Fairfax Estate Planning: 703-691-1888
Fredericksburg Estate Planning: 540-479-1435
Rockville Estate Planning: 301-519-8041
DC Estate Planning: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.