Everyone handles grief differently. There is no right or wrong way to work through the pain of coming to the end of one’s life. This is especially true for someone suffering with Alzheimer’s disease, a neurological disorder where the death of brain cells results in memory loss and impaired cognitive functioning. You must have a great deal of compassion, respect and patience when handling emotional topics, like end-of-life care and funeral arrangements, for someone with Alzheimer’s.
More than 5 million people in the United States have been diagnosed with Alzheimer’s, the most prevalent form of dementia. As symptoms get worse, people struggle to remember recent events, make decisions, and recognize familiar people. Eventually, your loved one will require constant care.
Alzheimer’s is incurable and irreversible. Though its progress can be slowed, once there is a diagnosis, you will want to take action to secure a comfortable future for your loved one. One way to do that is to have a conversation about final arrangements. This can be a difficult and uncomfortable discussion regardless of your loved one’s current health, but it can be even more unsettling when an Alzheimer’s diagnosis is on the table. Here are a few tender tips for starting that conversation and what you should ask to make sure your loved one has a say in his or her final arrangements. When planning a funeral with a person suffering from Alzheimer’s, you’ll want to know:
- How to start a conversation on such a sensitive topic
- What questions you should ask a funeral home director regarding final arrangements
- Ways to ask questions that are considerate of someone with Alzheimer’s
How to start a conversation about funeral planning
Talking about final arrangements isn’t easy, but that doesn’t mean it has to be hard, either. The sooner you have this conversation, the more salient your loved one will be when he or she participates. While it may seem easier to avoid the conversation altogether, it’s important to approach the subject with compassion and care. When you’re ready to discuss funeral arrangements, try to:
- Wait for the right time. Pick a time when your friend or family member is calm, joyful and lucid. If that changes mid-conversation, go ahead and pause the discussion until the next time your loved one is better able to discuss it.
- Have specific questions ready. If your loved one is in an assisted care facility, ask the nursing staff for tips on how best to ask your questions.
There’s no easy way to break the ice, especially for a loved one with a cognitive condition. Start the conversation by acknowledging this can be an uncomfortable conversation, but you just want to make sure their life is honored and celebrated as they would want. If your loved one seems able to handle that reality, continue. If it is too overwhelming, stop and try again later. Some ways to begin the conversation include phrases such as:
- “I know this is a hard topic, but would you be open to talking about your funeral arrangements so we can make sure to carry out all of your wishes?”
- “Even though it is a long way off, we love you very much and want to make sure we celebrate your life in a way that makes you happy and gives you peace. Would it be OK to ask you a few questions about final arrangements?”
- “When the time comes, I want you to have peace of mind knowing we planned things together and that your wishes will be fulfilled. I know it can be an upsetting topic, but would you be open to talking about what you’d like to be included in your memorial service?”
Your loved one might say they don’t care or they don’t understand why it matters. If possible, gently help them understand that funerals help people with the grieving process. Even if they only have a few small requests, you’d still love to know about them.
What questions to ask when planning final arrangements
When it comes to planning final arrangements, there are many details, both big and small, that a person can weigh in on. You’ll need to use your best judgment about what your loved one with Alzheimer’s is capable of understanding (you can also start with a funeral planning checklist). Some details you might want their input on include:
- What to do with the body, cremation vs burial, or donate to medicine or science.
- Having visitation before the funeral.
- Choosing the urn or casket.
- Ability to pay ahead of time for some of the funeral costs (learn more about pre-paid funeral plans).
- Holding a religious service, such as a Mass, before the funeral. If this is something your loved one wants included, ask them which religious leader you should contact at their place of worship. If they don’t have a point of contact, you’ll want to find someone to perform services in advance of their passing.
- What scripture readings, poetry, songs or images they want used.
- Picking out a burial plot or a place to spread ashes.
- Specific information to include in their obituary.
You may want to know if there are questions your loved one has. Sometimes, vague or open-ended questions can be frustrating for people with Alzheimer’s. If you want to give them space to talk, you can ask specific follow-up questions based on their answers. It’s important to not overwhelm your loved one. Remember, what you ask is just as important as how you ask it!
How to compassionately ask a person with Alzheimer’s questions
Sometimes, it is hard for a person with Alzheimer’s to find the right words, especially when having discussions that require a lot of thought. They might get distracted or take a long time in responding. When communicating with someone diagnosed with dementia, it’s important to be patient, not rush them, and give them plenty of time to express themselves. With their cognitive decline, you’ll need to keep these considerations in mind when talking to them about funeral planning:
- Ask simple, basic questions that don’t require detailed answers.
- Avoid questions that make them choose between two or more things. If you need to know a specific answer, like if they’d prefer cremation over burial (learn more about how cremation works), ask them separate questions.
- For example, instead of asking, “Would you rather be cremated or buried?” ask, “How do you feel about being cremated?” Give them time to answer, and then ask, “How do you feel about being buried in a cemetery?”
- Avoid questions that require their memory, such as, “Do you remember Aunt Sally’s funeral? Weren’t those nice flowers?”
- Have pictures on hand to show them. Let them point out elements they like or do not like.
Also, consider having the conversation a few times, which can be helpful in situations where memory loss is a concern. Having several discussions will reveal common requests in your loved one’s wishes.
For example, in one conversation, they may say they want a visitation, but other times, they may say they don’t. Each time, be considerate of the person’s mood. They may be irritable one time and upset another. If talking doesn’t seem to be working, you can try having them write out their wishes in an email or answering a paper questionnaire.
Planning the final arrangements for someone with Alzheimer’s is an unpredictable conversation from start to finish. If you plan to have the conversation in a calm space, like on a walk out in the woods, you might find the conversation flows more organically and peacefully. No matter how stressed you may feel trying to have the conversation, it likely won’t be as challenging as planning a funeral without knowing their last wishes. There is no specific right time to start a conversation about funeral arrangements, but it is important that you try to have one. Be sure your loved one knows you’re having this conversation out of love, respect and compassion for them.< Back to Consumer Resources