Dementia Caregiving at the End of Life – Finding Comfort in Planning Ahead

This post explores the responsibility of ensuring that a loved one’s end-of-life wishes are honored, even if they suffer from some form of dementia. As someone caring for an aging family member, your first concern is usually making sure your loved one’s routine needs are being met. Bathing and toileting, wound-care, meal prep, and multiple doctors’ appointments can often fill up much of the day, leaving little opportunity to attend to your own self. With the added challenges of assisting someone with dementia, it’s perfectly understandable that you may have little or no energy for an uncomfortable conversation about death and dying. In fact, it may seem like a terribly insensitive subject to bring up. The truth is though, that talking ahead of time with an elderly relative about their end-of-life decisions can fill an equally important need – the right to be heard and respected for their choices. Difficult as it may seem at first, this can actually provide comfort, relief, and peace-of-mind, not just for them, but for you, as well. Here are some things to consider: “End-of-life” planning covers several different issues, but a good place to start is with talking to your loved one about the kind of medical care they want and don’t want during the last phase of their lives. Some questions might focus on their priorities such as wanting comfort care only instead of aggressive treatments; preferring hospice care over spending final days in a hospital; or embracing quality of life over quantity. Much of these conversations focus on the person’s values, beliefs and what is most important to them, and even if your family member is in the early stages of a dementia diagnosis, he or she may still have a strong desire to make their wishes known. If communication is not possible, keep in mind that your personal understanding of their thoughts, feelings and concerns can also be used to help guide you in making decisions believed to be in keeping with their desires. An excellent guide to help you and your family become familiar with the issues involved can be found on the website CompassionandChoices.org. There are also two valuable options to help get the actual dialogue going. The first is AgingWithDignity.org. This organization makes use of the Five Wishes document, which addresses personal, physical, spiritual, and emotional needs at the end of life and is written in a way that can be easily understood by you and me. The other site is TheConversationProject.org, which actually offers conversation-starter kits to help individuals and families feel more comfortable when talking about end-of-life choices. Be aware that having “The Talk” with a family member is not the final step. Their wishes must be outlined in a legal document called a Living Will, also known as an Advance Directive. This spells out instructions regarding preferred medical care if a loved on is unable to communicate this information on their own. Essentially, it gives individuals personal control over their own bodies, even when they are unable to speak for themselves.   Along with a Living Will, naming a healthcare surrogate (sometimes called a Healthcare Proxy or Healthcare Power of Attorney) is just as important. This person becomes the voice of the patient by ensuring their Living Will is honored. If no Living Will exists, the healthcare surrogate may also make healthcare decisions based on what they believe to be the wishes of the person who is ill. Finally, another critical health-related document to discuss early on is the Do Not Resuscitate form, or DNR, which must be completed and signed by a physician and your family member. It states that CPR should not be performed if they stop breathing or their heart stops beating. In most cases, if the individual has dementia and is unable to make this choice for him or herself, the healthcare surrogate may sign this form on their behalf. There is nothing easy about having these kinds of talks, which can often be an emotional experience. As a family caregiver, having the courage to take the lead on this can actually offer an opportunity to create an even deeper relationship with the person you’re caring for. Just keep in mind that the key lies in reframing these conversations as what they truly are – acts of love. Judith Henry was formerly a caregiver and healthcare surrogate for both her parents. This experience led her to write “The Dutiful Daughter’s Guide to Caregiving,” a blend of financial planner, family therapist, and geriatric care manager. Judith is a speaker, workshop leader, and creator of “Finding Your Voice,” a writer’s group for caregivers in the Tampa Bay area. To learn more about Judith, visit http://www.judithdhenry.com.