“I was in a state of great relief when my sister’s doctor finally told her she had Alzheimer’s. I said to my husband, ‘Now we can finally talk about it.’ But, of course, then the next day she had forgotten — because she had Alzheimer’s.”
It’s not easy for anyone to begin a conversation about how they want to live at the end of their lives — about the care they want, and the care they don’t want. But it’s both more difficult and more important to have this talk as soon as possible if your loved one has Alzheimer’s disease or another form of dementia.
The reason is simple: as your loved one’s disease progresses, and his or her ability to think and share thoughts declines, it will become more difficult for them to express their wishes. And yet, knowing those wishes will be a critical guide to help you through the many decisions that you may have to make.
It’s Always Too Soon Until It’s Too Late
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. We developed the original Conversation Starter Kit as a useful tool to help people have conversations about their wishes with their family members and loved ones.
After we posted the Conversation Starter Kit on our website, people contacted us about the need for an additional resource: a Starter Kit specifically designed to help families and loved ones of people with Alzheimer’s disease or another form of dementia who want guidance about “having the conversation.”
We know how hard it can be to start conversations about end-of-life care with a loved one. The primary reason we give for postponing is telling ourselves that “it’s too soon.” But as we say in The Conversation Project, “It’s always too soon until it’s too late.”
This is especially true when the people we love begin to lose their memory, cognitive ability, and ability to function. We often hesitate, however, because it may seem unkind to suggest that they are losing their mental ability.
We may fear that our loved one’s response might be denial, anger, or depression. It is tempting to postpone the talk until tomorrow, or the next doctor’s appointment, or after the holidays.
Being There for Your Loved Ones
There is no single way that people with Alzheimer’s disease or another form of dementia react to their symptoms. Some choose denial. Some worry privately. But most are far more aware than we think. Many, perhaps most, people who are experiencing cognitive decline — who lose their way home, cannot work the TV remote, or can’t figure out the tip on the bill — become frightened. Without a trusted confidant, they may feel vulnerable and lonely as the disease progresses.
Having the conversation about care at the end of life isn’t an intrusion or unkind. On the contrary, it may be the most intimate way to promise your loved one that you will be there for them. By listening carefully and respectfully, you share their worries and promise that even when they lose the capacity to make decisions, you will respect them and their wishes.
If You Meet Resistance
Be gentle. Sometimes it’s difficult for people to talk about the end of their lives because it means facing the reality of our mortality. It’s normal for people to insist that “there’s nothing wrong” with them.
Make it clear that the conversation is for everyone — not just for them. Have the conversation “both ways” — both of you tell each other what your wishes are for end-of-life care. Or, if the conversation seems overwhelming or confusing, ask if they would rather have a trusted loved one make these decisions for them.
Tips for Having the Conversation
- Start the conversation as soon as possible — There’s a great deal you can do to help the person you love have a good quality of life for as long as possible. Yet, remember that Alzheimer’s and other forms of dementia are terminal illnesses.
- Look for opportunities — Even though dementia is a long and steady decline, there are momentswhen a loved one may remember certain things (like music or distant memories) better than more recent events (like what they ate for breakfast). Use one of those moments to ask for more input about care wishes
- Have a series of short discussions — It’s important to have this conversation in small bites. Keep it simple. People with Alzheimer’s and other forms of dementia get overwhelmed quickly. Don’t expect to go through several pages of the Starter Kit in one discussion. And when you return to the conversation, you’ll likely have to repeat the questions you went through before.
- Don’t dismiss anxiety or fear — People in the early stages of Alzheimer’s disease or another form of dementia will often express anxiety about memory loss or loss of their ability to do things they used to be able to do. Don’t simply dismiss this — “Oh Dad, we all forget things as we get older.” Instead, this may be an opening to establish yourself as someone they can talk to — “Tell me more.” It can be an opening to begin a longer conversation.
- Having this conversation is important for you, too — This discussion may help you avoid the guilt, uncertainty, and depression that can accompany making end-of-life care decisions without knowing what your loved one would have wanted.
- Take care of yourself — Talking about losing a loved one before you actually lose them is difficult. Remember that you are doing the best you can. Get help; share this experience with a trusted family member or friend rather than hiding it.
We hope you find the Alzheimer’s Disease or Other Forms of Dementia Starter Kit helpful in beginning, and continuing, these conversations with your loved ones.