Late-Stage Dementia: The Chain of Communication

Here's a difficult but useful discussion to have with family members: When do you want to be called? That is to say, do adult children, siblings, and other immediate relatives want to know the minute your loved one seems to be in any new health crisis? Or when the end seems near? Or when?

Knowing their preferences can help eliminate later accusations such as, "Why didn't anybody tell me?" At the same time, it's a burden on a stressed caregiver to have to make a dozen phone calls every time there's a new symptom. Clarifying which circumstances warrant information helps everyone.

Try saying, "Look, Dad's health is stable right now, and this isn't any fun to bring up, but there's bound to be another change in his condition. If that happens, it would help me -- and you -- for me to know whether I should call you. What are your preferences: Do you want me to tell you every time he has a fever or urinary tract infection, just report what happens when we see the doctor, or only let you know about true emergencies when I'd like your input?"

Work out a communication chain to pass along updates, if you haven't already; it helps everyone. You only need to make one call, instead of 20. If you're dealing with relatives eager to know all the details as they happen, consider using e-mail updates, which you can send at your convenience, to convey subtle changes and other information about your loved one.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio

about 4 years, said...

the fine details on how to communicate at this stage which is where my husband is at right now. Thanks

over 6 years, said...

My husband is in late stage dementia. Is in geri chair during the day. When put to bed at night , he usually throws his arm above his head. This week the nurse has called me to say he has been biting his arm....hard enough to bruise himself. She put a med sleeve on his arm last night hoping to curtail the problem. Has anyone ever heard of this behavior??? It is shocking to me as are most of the new issues that happen at this stage.

almost 7 years, said...

Mom is still making me feel bad. She can't help it. Hurts so much to see her this way. Praying that she can get more content even in her own world. My grandmother was like this for ten years but never unhappy. Mom has not been happy long before they discovered the dementia. She will be 94 in September but still bothers me as she gets very mean to the people around her. I am not the only one. So sad though. Miss my mom even though we didn't see eye to eye. She taught me so much and I was daddy's girl and he is in my heart even to this day. The dementia made mom who was always demanding twice as bad. Thanks for letting me vent.