Marathon training is a popular athletic achievement these days. At-home runners block out hours for short and long runs, strength training, and pay top dollar for the opportunity to run events in places like Boston and New York. The history of the marathon, however, is less about the glory of outracing others in a magnificent display of physical prowess. Instead, the original marathon was, according to legend, run by the Greek messenger Pheidippides (try saying that ten times fast!).
He ran from the battlefield of Marathon to Athens in order to announce to the royal assembly that the invading Persian army had just been defeated. After running the entire distance without a break – just over 26 miles – he shouted deliriously, “we have won!” Then collapsed and died. Whether or not the legend is historically accurate, the story has a lot in common with the realities of end-of-life. A good death involves preparation and sharing important plans with a care team and communicating messages between loved ones. It is, in fact, possible to have the victory of a good death.
End-of-life Preparation for Dementia Patients
Preparation for and during end-of-life is hard work. There are physical, emotional, social, and spiritual mountains to climb as death approaches, and these are made all the more challenging for dementia patients and their loved ones. Among the healthiest ways to manage challenges during end-of-life is to be informed and to make clear preparations for a good death. If you’re reading this, chances are you are going to be among your loved one’s “coaches” as they approach the end. Information about the physical, emotional, and spiritual signs of impending death will help you manage the challenges of the dying process. All people, whether or not they are suffering from dementia, experience similar end of life symptoms. To learn more about the dying process, review our informational blog article, What Happens During the Final Days of Life?
Challenges for Dementia Patients During End-of-life
Physical signs that death is approaching include increasing amounts of sleep time, reduced interest in food and drink, restlessness coupled with confusion, and changes in breathing patterns. A dementia patient often still has awareness of these basic patterns of life and so your task as a caregiver is to narrate what is happening. If your loved one is sleeping more, don’t wake the person up. Instead simply be with them. Hold hands, stay near, and even speak. Your loved one can probably hear you and it is healthy and helpful for you to have the opportunity to say the things most important to you, whether or not they are able to respond.
Nutrition and Hydration
Do not force meals or liquids, as needs for nutrition diminishes. Instead, provide only that which increases comfort, such as ice chips, juice, or a mouth swab with water to help your loved one maintain the feeling of hydration. People in the process of dying are also commonly confused, especially those in the last stages of dementia. Note that information about location, date, and time will lose meaning and will eventually become irrelevant.
Rather than helping your loved one maintain a clear sense of their place in space, simply offer information about the immediate moment as needed. “It’s time to take your medicine now so that you won’t start to hurt” is essential, clear information. “Here’s an ice chip to cool down your mouth,” gives your loved one agency about whether they’d like to receive what you’re offering. As physical symptoms such as restlessness, fever, and shallow breathing set in, contact your medical and hospice care team for support.
Other Challenges
“Training” for the end of life in the realm of emotional, social, and spiritual needs often carries more weight for loved ones because it involves talking about the ultimate challenge: facing death. Death separates us from those we love, and therefore, to die well, means making the most of time together as your loved one prepares to depart. Among the best ways you can prepare for end-of-life with your loved one is hearing more about how they would like their life to be celebrated after they pass. Make funeral plans together by discussing songs or hymns your loved one may like or readings they have found particularly meaningful. If your loved one is suffering from dementia and you are especially close, take time to actually sing a few loved songs together. Having effective advance care planning documents such as a healthcare power of attorney and a living will can also help families to avoid stress and confusion.
Connecting Through Music
Dementia patients frequently connect well with music. Sing a few lines of a song or hymn and even if they can’t join in, chances are that they find it soothing. Dementia patients are not likely to offer specific information about the meaning of particular items they would like included in their funeral plans, so the job of the caregiver is simply to help them to recall favorite memories, experiences, activities, songs, people, etc. and see what would best fit a memorial or celebration of your loved ones’ life.
A Peaceful Goodbye
The equivalent of Pheidippides’ marathon victory message for patients and their families at the end-of-life is the chance to say goodbye. Find opportunities for close friends and family to come by for a final word, no matter how brief. Hold hands, share a favorite memory, offer words of how much the person has meant to you in life, and be willing to receive the words they are able and willing to offer you. The final challenge of death is not to simply manage symptoms, but also to connect well and then let go in your final goodbye.
Hospice Care for Dementia Patients
To help you with “training” for the challenges you and your loved ones will face toward the end of life, one of the best investments you can make is hospice care for dementia patients. Hospice providers know the signs of various physical, social, emotional, and spiritual challenges and have greater insight on how to manage them as they arise. They will serve as your coach in all the ways you serve your loved one during end-of-life, as well as connect you with treatment options to provide further comfort and care during the time leading up to death.
Contact Harbor Light Hospice for Support
Overall, the goal of end-of-life care is the ability to acknowledge that the race of life was lived and that a good death is the victory. For more information on challenges you may face in providing effective end-of-life care for a loved one with dementia, please contact Harbor Light Hospice by calling or sending a message online today.
