Planning for the End with Alzheimer’s

February 2022

If you or a loved one have recently received an Alzheimer’s or dementia diagnosis, you may either feel pretty anxious about it, or it does not yet feel real. Coming to terms with the diagnosis can take some time. The Alzheimer’s Association has some great information on accepting your diagnosis if you need it. But when you are ready, it is important to begin planning for different stages of the disease, especially your end-of-life wishes.

Planning in itself can be a healthy coping mechanism as it allows you and your loved one to exert some control over the situation. Here are some of the items we recommend discussing sooner rather than later.

End-of-Life Wishes. Recording your end-of-life wishes can be as simple or detailed as you and your family desire. At the very least, we recommend completing advance directives to record your medical wishes. These decisions can be difficult on loved ones and making choices in advance can make the process smoother for those who care about you. In addition, taking steps to have meaningful conversations with family, friends and doctors about your wishes, choice for hospice or palliative care and funeral arrangements are encouraged.
Memory Preservation. If a loved one is in the early stages of the disease, there is likely a lot they can still remember. It can be tempting to rush to record everything possible. Instead, take a measured and caring approach. Try to create a relaxed environment and don’t worry too much about exact details. Encourage sharing of stories by everyone present, ensuring ample time for the diagnosed person to speak and avoiding quizzing that person as well. You could record the conversation as audio or video or assign a designated note-taker. If possible, try to do this in short increments and on different occasions. After all, the goal is for everyone to enjoy time reminiscing – not feel like they’re taking a memory test!
Plans for Different Stages. Both Alzheimer’s and other dementias have mild, moderate, and severe stages, and your or your loved one’s needs will change throughout the varying stages. Being aware of what is likely to occur at the different stages can help you plan. These plans become particularly helpful when it comes to care. What is best (and realistic) is different for each individual, and it is essential to take the time to lay out a strategy that makes everyone comfortable.
Legacy Preparation. Legacy often makes people think of grand gestures such as scholarships and buildings. But it doesn’t have to mean those things. Now is a great time to consider what you want to leave behind for your loved ones. There may be personal items of significance you wish to ensure left to specific individuals. You may also want to write letters or record videos for loved ones while the disease is in its early stages. No matter how big or small, now is the time to plan the legacy you will leave!

There is no one right way to navigate with an Alzheimer’s or dementia diagnosis and no one right way to plan for the future. This simple list is meant only to give you and your loved ones a place to start. Many excellent resources are available to those diagnosed with Alzheimer’s and their family. If you are looking for local help, we hope you consider Sharon S. Richardson Hospice Community Hospice for your palliative and hospice care. Our palliative care services can significantly benefit both the patient and their family as the disease progresses. Please call our team to learn more or request an initial consultation at 920-467-1800.