Allan Schwartz, LCSW, Ph.D. was in private practice for more than thirty years. He is a Licensed Clinical Social Worker in the states
This is an Email recently sent to me by an adult daughter witnessing the decline of her elderly mother. It’s not a decline due to physical health problems but due to Alzheimer’s disease. This Email is typical of the tragedy of what so many families go through as they watch their loved one become lost in the web of dementia:
“My 87-year old mother has been independent all her life. She’s paid her own bills, managed two homes, lived on her own happily. She’s a very bright lady, but she’s losing her memory… …
my mother is changing before my eyes. I hate the thought that my mother can’t manage her own affairs anymore. I’m afraid that one of these days she might not know who I am and I’m ashamed to admit that I’m hoping she passes away before this happens…
How do I accept my mother’s decline?”
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That last question, “How do I accept my mother’s decline,” is one of the hardest to answer of all possible questions about aging and life. It is an awful thing to compare tragedies but that is what I am about to do and I hope my readers will forgive me. When a loved one is diagnosed with a terminal disease, it’s shocking and traumatizing for all concerned, including, of course, the patient. All concerned have to face that dreaded time when a terrible loss will be experienced. If the patient and loved ones are lucky, there will be time to close unfinished business, provide advice to the surviving family and say goodbye. After the final moment is over, everyone faces the task of mourning, reviewing the past and, ultimately, going on with life, but with fond memories of a lifetime together.
Alzheimer’s disease is worse, in many ways, although that is not said to minimize the impact of losing a loved one. The tragedy of Alzheimer’s disease is that family and friends must find ways to endure while their loved one is still alive. How do you say goodbye to a someone who is still alive. The reason for this question is that, in point of fact, once lost to dementia, the personality of the patient ceases to exist while alive. These patients no longer remember their spouse, children and grandchildren. They no longer respond in the ways they did before the onset of this terrible disease. Very often they repeat things over and again, seem to not hear what is said to them, do not remember what was said a moment ago, seem confused about past and present appear to be completely irrational which, in effect, they probably are.
Many, perhaps most, patient with the symptoms of early onset of the disease either sense or know that they are losing control of their faculties. That is why many of them become depressed. Here, too, it is not that they know that they have a terminal illness that will end their lives but, much more frightening, if that is possible, that that they will live while no longer being their former self.
Adult children are forced to cope with many decisions and emotions once a parent is diagnosed with this disease. Among these is:
1. Whether or not to keep the parent at home vs. placing him or her in a nursing home where there is 24 hour supervision. This is important if the adult children are burdened with their children and jobs. At home, Alzheimer’s patients can wonder away and get lost, forget to turn off the stove if they are cooking and risk setting the house on fire, cause a flood and many other potential disasters.
2. Then there is coping with feelings of guilt if there was a life time of arguing with this parent. Then, because the patient forgets everything that is said and repeats the same questions, it is easy to become impatient and angry despite knowing that this is not happening deliberately.
3. Many adult children or other care givers feel very alone with this tragedy. In addition, are feelings of depression, anxiety and exhaustion from dealing with their ill parent.
It is a terrible thing to know that your parent is alive but not the same person they once were, to know that you are now a total stranger to him or her. It is a terrible thing to be the patient and, at early stages, know what is happening to you but not be able to do anything to stop it.
One of the best resources for information and help, as well as local support groups for everyone with this problem is the Alzheimer’s Association. The Alzheimer’s Association is a wonderful source of information and help and can be found at:
It should be stated that, through the association, there are available day programs for these patients that try to normalize their lives while providing structure and entertainment. Usually, these are for patients being kept at home. Transportation is available to pick them up and bring them to the program.
A later blog will deal with the symptoms of Alzheimer’s and how it differs from ordinary forgetting.
There is no need to be alone with this disease.
Your comments and questions are encouraged.
Allan N. Schwartz, PhD
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