Dementia causing illnesses, by whatever name we classify them, are becoming more and more prominent. Dementia, and how to care for people with it, has become a big healthcare issue. 

Dear Barbara, my mother has FTD dementia. She is very vacant and stares through us all. She is unable to communicate, her muscles are contracting. She is eating and drinking less. We have been told she is now in advanced stages. I feel she may be waiting to come home from the hospital where she is again. We do think she still recognizes us. The hospital seems to think otherwise! 

Dementia doesn’t play by the rules for end of life. Withdrawing and sleeping can be present for years and does not signify approaching death. Not eating and not swallowing are your key signs. If we don’t eat, we can’t continue to live. Always offer food (be careful of choking), but don’t force food. 

About how much your mother knows: obviously I don’t know for sure, but I always operate with the belief “what if some part of them knows.”

I recommend talking to the person as if they understand. Share comings and goings, thoughts of love and thoughts of regret. Say what your heart needs to say. I believe some part hears and knows. 

Do I think she wants to come home? Yes, most people don’t want to be in a hospital. We want to be at home and with our loved ones. 

However, I do have a concern for you. Taking care of someone that requires 24/7 care is a huge responsibility. As a caregiver it is not only physically exhausting but emotionally draining. What kind of support system do you have in place for you should you decide to bring her home? 

Something More about…  Is Mom Waiting to Come Home?  FTD Dementia

Caring for a special person in your home who is facing end of life can be overwhelming. Having tools that will support you is vital. My guidebook, By Your Side, A Guide for Caring for the Dying at Home addresses end of life choices (life sustaining, comfort care), advance directives, and funeral planning. It details signs of approaching death (what to look for, what to do); describes end of life care at home; pain management; care of dementia patients at end of life; and, very importantly, how to take care of yourself as you fulfill your role as caregiver.   

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.