Is it common for a patient in the late stages of Alzheimer's to still know everyone?

11 answers | Last updated: Nov 13, 2016
Dena asked...

Is it common for a patient in the late stages of Alzheimer's to still know everyone?


Expert Answers

A social worker and geriatric consultant who specializes in dementia care, Joyce Simard is based in Land O' Lakes, Florida, and in Prague. She is a well-known speaker and has written two books, one focusing on end-of-life care and the other, entitled The Magic Tape Recorder, explaining aging, memory loss, and how children can be helpers to their elders.

It is uncommon for someone in the late stages of Alzheimer's disease to know their friends and families.   Be thankful!


Community Answers

Melodon answered...

My mother is in the final stages, when i take her something to eat or put her to bed she always tells me she loves me so much and what a wonderful woman i am except i'm her 50 yr old son. She responds to me though she hasn't called me by my name for a long time. She is comfortable with my wife helping her but doesn't verbalize with her very much. This was the part i dreaded most but now seeing that she is content and comfortable has helped to ease the sorrow of her not knowing me


Rosebyford answered...

My mother in law is 86. She walks all night and day and sleeps in between. Barely speaks, needs assistance with everything. Weighs 107 pounds. Must be put on the toilet. How long can we expect her to live in this way? How much worse will it get if she never has a fall?


Margieb answered...

I hate to admit or state this publicly but I catch myself getting very tense when I'm with her..... I want her to SNAP out of this, knowing she can't doesn't help my feelings. I am very careful to always be gentle and understanding with her but sometimes I feel it just welling up inside and want to run away and scream. Any suggestions?


Fiona answered...

MargieB, me again. I have been where you are. Luckily the lead care-giver at Mom's place (a Sunrise facility) was wonderful. When Mom started using wastebaskets for toilets, I was totally floored. This was only one of the many times I would sit at the lead caregiver's desk and sob, asking her what was going on, and how do I deal with it? She would gently explain to me what stage Mom was entering now. At that point, she said that Mom's brain knew to look for a receptacle, but had forgotten what a toilet looked like...a common manifestation of part of the late stage. So we hid all of the wastebaskets in closets and cabinets. Problem solved. This is so hard to watch. The Mother you have loved and looked up to your entire life becomes so diminished, and it's natural to want her back the way she used to be. I'd have given anything even for my Mom to start an argument with me, like she used to when she thought I was being too bossy. Instead she would be docile about accepting anything I did. I have cried many tears over the last 4 years, watching my once-feisty Mom disintegrate before my eyes...and even seeing her 3-4 times a week didn't help, because she would sometimes slip down the slide from one day to the next, so I never knew what I would encounter when I saw her. If it is at all possible, is there any way you can move your Mom closer to where you live? Even though I was expecting Mom's death for 4 years, knowing it would come at any time was no preparation for when it actually did. I had no way of knowing that night that I spooned pea soup into her mouth carefully, and when I was leaving she nodded as if to ask me to kiss her goodbye, and I teased her that I would treasure pea-soup-flavored Mama kisses...that would be the last time I would see life in her eyes. For the next 36 hours she was in a coma of sorts, and had no way of acknowledging that I spent hours next to her bed, rubbing lotion on her dry skin and talking to her, playing music, and crying. You don't want to miss that, if at all possible.


A fellow caregiver answered...

My Mother was ill for ten years, and we kept her in her home for the entire time. The last four or five years she became very aggressive, both physically and verbally...nothing like the Mom I had always known. I thought during this time, I had already grieved for the Mother I had lost. When she died there was a feeling of relief for her and me. But on the anniversary of her death, I began to get sick..lost a lot of weight in six weeks...and had test after test. Finally, it hit me...an acupuncturist ask me what was going on with my Mom and me, and I told him I thought my Mom died hating me. Now, I know my Mom loved me but somewhere along the way, I lost sight of my Mother. Now, one and one-half years later, I am finally grieving for my Mom and struggling with all the times I would get so frustrated and lose my patience. This is one of the hardest roads I have ever traveled and such a cruel disease.


Ctrindle answered...

I found a book that has helped me so much to understand my Dad and how to help him and at the same time still hold him in a place of honor and respect. The book is "Creating Moments of Joy" by Jolene Brackey. She also has a wonderful web-site that has some amazing "tidbits".. I'm so thankful for her and her amazing book. http://www.enhancedmoments.com/mm/bio.html


Andee8 answered...

Last year I found Jolene's book and it resonated with me... still does. I keep Creating Moments of Joy handy...so many helpful tidbits. I agree with ctrindle that her book is such a help and her website has more! Family, friends, and caregivers of men and women who have Alzheimers can benefit. I had already read the 36 Hour Day, which has good stuff for caregiving and understanding. BUT...Jolene's book is my heart. The author's words encouraged me to continue loving on my mom during visits; and, I see the person and celebrate her greatness (not just my mom, but also other residents in the same nursing home).


Tam cummings, ms answered...

It is unusual for a person in stage six or seven to be able to recognize or know their caregivers and/or loved ones. This is because the disease process, whether it is Alzheimer's, Lewy Body, Vascular, etc., has now caused significant damage in the lobes of the brain containing language (temporal lobe), memory, speech, rational thought, judgement, cognition, imagination (frontal lobe), and visual acuity and depth perception (occipital lobe). Think of the brain as a filing cabinet, for example. And think of each file in the cabinet as representing a memory. Memories, which are everything from how to sit up in a chair, how to walk, how to dress and eat, how to recognize a full bladder and know the dozens of steps to using the bathroom or how to how to recognize and know who specific people are, i.e. a son, a daughter, a spouse, are damaged and destroyed as the disease moves through the brain. Remember that by the end of the disease process, the brain goes from weighing three pounds to weighing one. Your loved one's files (memories) are being destroyed, cell by cell. As the cells die, the body flushes them out as part of its waste removal system. As the cells are flushed out, the brain shrinks. As the cells are flushed out, the files get little holes in them, bigger holes in them, and finally, the files are empty. Your loved one's memories of you are destroyed, cell by cell, file by file. You probably saw this action clearly in the early stages. She called you by the name of a sister or her mother or another relative, but she still knew you were you. Her files were beginning to be damaged, but the name she called you came from the family file of names. But in time, her file for you, who you are, your life with her, etc., becomes more and more damaged and as it is lost, so are all the other files related to you in the form of the ability to use speech, memory, cognition, and visual acuity (to help recognize who you are). Remember in this earlier stage, she also began to demonstrate that she was no longer recognizing herself as who she was, her age, her features, her face. Instead she was moving backwards in time. It was no longer 2012, it was 1990, then 1970, then 1950, 1930. Now she believes she is a young woman. The files for you are erased, gone. How could she possibly know you? Her brain only has old files, those files of her as a young woman. Files that existed before she was married, before she had children. The information about you no longer exists in her brain structure. Witnessing this change can be devastating for family members. I have seen sons and daughters no longer able to find the strength to visit because they take this brain damage as a personal insult, when it is in reality an end result of the dementia process. Try to find a way to be comforted by her responses to you not as her daughter, but as "that nice lady who brings me chocolate." Then she's not scared and frustrated by your insistence that you are her child, especially since she can't remember you, and hopefully you are not so hurt by those lost memories.


Emcd answered...

My husband was diagnosed four years ago. He does not recognize most people, but he still knows who he is, knows me and our daughter and her family. I am blessed.


Moos1 answered...

We just became aware that my Dad no longer knows my brother and myself (we share visiting everyday). He thought we lived in the memory care facility he did because we had grey hair. Dark haired people were care givers.