Discussions to Have With Your Family Member

 

 

How to Have the Discussions

Caregivers often find themselves in the position of having to initiate uncomfortable topics for discussion with an aging family member. This is especially true related to topics about End of Life decisions. Personalities, motives, emotions, denial - all can come into play.

No one likes to think about death, whether a family member's or one's own. But, to ensure that a dying person's wishes are honored and to ease the burden on the family, family members must not only talk but they must also plan for the future. You are not sparing your family member's feelings by not having the discussions. Instead, having these discussions is honoring the entire family and giving everyone value.

The way to handle these discussions is to approach them from a constructive and non-threatening way.

 

Depersonalize the Issues
Isn't it always easier to talk about the difficult issues when they relate to other people?

• Bring up the subjects by talking about a friend - either real or invented.
• Say you read about an issue or say you saw a television program on an issue and ask their opinion - hypothetically, if needed.
• Use the checklists provided to start the talk. Say you want to plan for your future and you found a checklist of things to do.

 

Assistance by Someone Outside of the Family
Sometimes the issues are so emotionally charged for a family, or relationships are so strained, that the assistance of someone outside the family would have the most effective result.

• Do you have a friend of the family that could broach the topics?
• What about someone from your faith community?
• Some Hospice agencies have professionals available to help initiate these discussions.

 

Additional online resources to help you approach these discussions:

 

In Region J in North Carolina, there are trained facilitators available to help families have these discussions in the privacy of their own homes. Project Compassion helps families in Chatham, Durham, and Orange counties when a family member is facing a serious illness. They train volunteers to be Advanced Care Planning facilitators. Project Compassion

 

Key Things to Consider

There are many issues to think about. It may help to list them before initiating a discussion. It may also be appropriate to pick one topic per discussion so that the family member is not overwhelmed. Think of these things:

• Does the person want to be kept alive artificially? If not, under what circumstances? What medical treatment do they want?
• Does the person want to be involved in their healthcare or would they rather the family handle it? Do they want to be told if their condition is terminal?
• If they become mentally incapacitated, who will make decisions for them? What decisions are acceptable?
• If the person becomes terminally ill, where do they prefer treatment and how would they like to be treated?
• How does the family feel about pain management, even if the person may become addicted?
• Who would the person like with them at the end of life?
• How does the person want their personal belongings and estate distributed? Have the tax implications been considered? Who would they like as executor of the will?
• What type of funeral does the person want? Viewing? Cremation? Graveside service? Memorial? Casket type. Gravestone.
• What family issues need to be resolved before death - estrangements, hurt feelings, expressions of love, etc.?
• How do they feel about organ donation? If they want to donate their organs, have they registered and gotten an organ donation card?

These questions are not all inclusive. There may be many more depending on your family's situation. But, they can provide a starting point and can lead to additional discussions.

Do you need more information on the topics of funerals, cremation, pain management, hospice, etc. to begin? Let us refer you back to the End of Life section homepage of the Full Circle of Care Caregiver Website. Go to the relevant sections for more information on a specific topic. If you are well informed about the potential choices, you will have a much easier time discussing the topics.

The Healthcare and Elder Law Programs Corporation, H.E.L.P., offers a workbook to help individuals have these delicate discussions about medical care and what a person would want in the way of care if he or she couldn't communicate. Through a grant, they will make two copies available per family or it is available online.

To help you with documenting choices related to a funeral and burial arrangements, an easy to use form has been developed by an elder law attorney and his wife. They founded the non-profit, H.E.L.P. (above). They were caregivers for one set of parents during a time when the parents health was declining. Much of the information is based on a legal foundation or need and was developed out of their experiences.

 

Compassion and Choices has online toolkits and information including a variety of forms to help you make long-term care choices.  They identify the areas of concern that might arise and address special needs such as unmarried partners visitation rights and Alzheimer's Disease.

 

Their "Good to Go Resources and Facts" discusses all the end-of-life implications and identifies ways to have the critical discussions.

 

After exploring the wishes of your family member, write down what was decided, including a date. Doing this will ensure that, over time, the decisions are accurately remembered. And, during the emotional time surrounding death, it will be one less burden.

Use these discussions and what you have recorded to prepare an End of Life Plan.

 

 

The Importance of Rituals

Rituals are important. They help people accept the inevitable. They help people move past an event. They help people understand the reality of a situation. And, they can provide comfort at a time of great loss.

What happens if your family member indicates that he or she does not want a funeral or cremation ceremony? What happens if that desire is not in line with your beliefs and traditions?

Much has been written about the importance of rituals. Discuss what the ceremony would mean to family and friends. Your family member may simply be trying to save you money or be trying to keep things as simple as possible for your benefit. Talk to your family member if you disagree with his or her choices. It is far better to come to an agreement during life than for you to pretend agreement and then to make whatever arrangements you want after death.

You may be thinking, "At that point, why would they care?". But, at that point, it's about you and his or her other family and friends. How would you know if he or she had discussed his or her choices with others? How would you feel knowing that you had not honored your family member's expressed wishes? And, how would you feel if others knew it too?

These are all valid considerations. Have the discussions and come to an agreement that will be honored. Below are resources to help you have those discussions.

If you and the family want a memorial or ceremony, talk to your family member about what a comfort it would be to those left behind. Tell him or her that it will offer a time to comfort and console those closest to each other, to share beautiful memories, and to express love and celebrate life and the accomplishments of that life. It begins the process of healing and renewal. Death is not easier when there is no ceremony; it is often more difficult for those left behind.

Some people find a sense of comfort in planning for their own funeral. They choose favorite music, prayers, and life events to share. They are then planning about how they want to be remembered by others.

Remember, too, that rituals can always be personalized and can honor your family member in a way that is meaningful to your family.

If having a traditional ritual such a memorial service or viewing at the funeral home doesn't suit your family, be creative. Do what works for you.

You might invite family and friends to come and celebrate the life of your loved one at:

• your home or the home of a close friend
• the meeting room at your church, temple, or synagogue
• outside in a favorite park
• at the family's vacation home
• at a local meeting hall
• at a favorite spot of the deceased
• any other appropriate location where you would feel comfortable

You could:

• tell stories
• share memorable moments
• have a celebration of good works and deeds
• play favorite music
• show home movies
• share favorite pictures
• have a musician play
• dance
• together, do an activity the deceased loved to do
• include children to highlight the continuity of life

You might:

• display favorite pictures
• ask others to write a short few paragraphs about how your family member touched their lives
• ask others to contribute pictures for a scrapbook to include the above paragraphs
• display honors, awards, favorite things
• give people a poem you wrote honoring your loved one, perhaps framed
• ask others to join in a "circle of life" in celebration of your loved one - sing, move, share stories while holding hands and holding your loved one in honor

Any of these rituals (or others you may think of) would honor your family member just as well as the more traditional approaches. A ritual you develop gives you control over something you cannot control - the death of your family member. Taking control - even this small step - can help you navigate the intense emotions of this time and will help you and others heal.

If your family member will be cremated, you may want to scatter the ashes as a burial ritual. There are many companies who, for a fee, will do this for you. Some offer to cast the urn in the sea for you (Sea Services - Atlantic; Ashes on the Sea - Pacific). Some offer to send the ashes off in a fireworks display of which a picture is taken. Some offer to scatter the ashes in a lovely mountain setting for you. Some offer to send the ashes up in a helium balloon (Eternal Ascent Society). However, consider that none of these paid services are personalized when someone else does them. Legally, you may scatter the ashes yourself in a fitting place i.e. not in your neighbor's flowers without asking! It is your choice, though, so make an informed decision that appeals to you and your family member.

There are also other creative options such as having a one of a kind diamond make from the carbon of a loved one as a memorial to his or her life. They are called LifeGems. The diamond can be mounted and worn as a keepsafe.

If you choose to not store the cremation urn in a columbarium (a type of vault with spaces for storing urns containing ashes), you may worry about future generations caring for the ashes of your loved one. Another option is to have the cremains (ashes from a cremation) used to make a new coral reef (Eternal Reefs). A manmade reef is made of cement mixed with the cremains. Family members can help to mix the ashes. A plaque is included and family members are allowed to leave a handprint in the cement. A boat is chartered for family members so that they can view the placing of the reef in a predetermined location. In a few weeks, a new reef will begin to flourish as sea life begin to use the manmade reef as their home.

Want to know more? The Funeral Consumers Alliance offers books and a DVD to show you the options in depth.

 

 

What to Do After the Discussions

It is critically important that the results of these discussions are recorded. Some of the information needs to be a part of legal documents such as a living will, health care directive, power of attorney, and a will.

Others, such as the type of service, burial, etc. need to be written out as an "End of Life Plan". That ensures that the discussions were accurately understood and they they will be remembered correctly over time. Such a plan should be dated and reviewed occasionally in case circumstances or feelings change. Keep this written plan with other important end of life papers for easy access.

As the caregiver, you may find that these discussions lead to meetings with an attorney or accountant or that you decide to pre-arrange for the burial. Though it may seem like a lot of work initially, it will be much better than having to make such decisions in a hurry and when you are under stress. For additional information on planning for the future with links to forms and contacts:

And, remember, laws vary from state-to-state. Make sure you plan within the laws of the state where the aging family member resides.

 

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