This is a lecture outline from a presentation on helping relatives cope with dementia in a loved one.
Dr. H
Living With Dementia
C. R. Hillenbrand, M.D., DLF, APA
What can I do about dementia? I can help my ill relative or friend. If I do that, how do I keep from going crazy?
We live longer than ever: in America in 1900, men lived to be 55; now it is 78½ years. We die in one of three ways: 1. Suddenly, from an unexpected cause; 2. A steady decline from a progressive disease, with a dying phase; 3. Chronic illness declining slowly, with periodic crises, and then sudden death.
For most of history, Medicine could neither cure disease nor extend life. Living into old age required good luck. Dying was a family, community, and religious event. Most people died at home, so people were likely to care for them, and people had a personal and direct experience with dying and death.
By 1949, half of deaths occurred in institutions. In 1958, 60.9% of deaths were in institutions. In 1992, 80% of deaths were in institutions. Death at home with family care is now replaced by dying in an institution: this has distanced dying from living. Because we are mobile, children no longer live near the parents. Middle-aged adults may never have lived near nor taken care of someone dying. A long-distance phone call has taken the place of the experience of a loved one’s death. Yet, regardless of the cause that ends a life, the elderly remain awake (in most cases) and are able to communicate much of the time.
Guilt: As a result of not being near, and of seeing or not seeing the ill elderly person, the most common psychological reaction of a caretaker to a loved one with dementia is guilt. Why does guilt happen?
Gamel Abdel Nasser was president of Egypt for over 30 years. He wished to leave a monument that would allow him a favorable comparison with ancient Kings of Egypt. He decided that another pyramid would not do much good and would probably just irritate his people. After much thought, he decided to create an enormous dam on the Nile at Aswan. This High Dam would require moving 18 times the amount of material moved for the Great Pyramid. It would create electricity for all of Egypt and would increase the farmland by 30%. It would also flood the Valley of the Kings and the two ancient temples at Abu Simbel erected by Ramses II in 1200 BC. Egyptian hydrologists said it could not be done as did the Russians, East Germans, West Germans, French, and British. The explanations included lack of bedrock for the dam, the porous sandstone cliff walls, the two temples and the buried ancient wonders. It is impossible to leave an everlasting memorial if everyone you ask says it cannot be done. Despite hating all things American, Nasser gave his problem to an American firm who asked:
When do you need it?
Because in America, no one is ever helpless. Immigrants came to America to not be helpless: we are “Can Do” people, not held back by anyone. We came here to escape illegal control and suppression. There is always something that can be done for any situation. We are never helpless. We Americans are control-freaks and live in a land where rolling up your sleeves always works. We are rewarded for this at work, at home, and at church.
When something bad happens, I have 2 choices: either I had something to do with it (which causes guilt), or, I had nothing to do with it (which causes helplessness). These two normal but unpleasant feelings, guilt and helplessness, feel exactly the same inside of me. Most Americans name this feeling “guilt”, based on identifying the source of the bad feeling as internal rather than external. Guilt allows a tiny bit of control.
So if something bad has happened, it has to have occurred because of somebody’s failure. Because of my culture I cannot admit that I have been helpless. Therefore, I must have done something wrong: GUILT. The way to handle this normal feeling is to admit that I feel helpless because I am in a situation over which I have no control. Recognizing the feeling helplessness as a normal but unpleasant feeling will relieve my guilt. Now, what about my other feelings?
Burnout: Stress has effects. Dealing with infirm loved ones can be very frustrating. Frustration leads to loss of morale, or burnout: a conviction of personal helplessness caused by repeated defeats. I try one solution – it doesn’t work. I try another – it doesn’t work. I try another: nothing works. After a while, I conclude that despite trying, I cannot do anything, and, hence, I am helpless, or burned out.
The cause of burnout is having an unreachable goal, or having an unworkable method. Suppose my goal is to earn respect and love from others…this is clearly an impossible goal because love and respect are gifts freely given, not something earned. Suppose my goal is to help my loved one achieve as pleasant as possible final years and a good death. This is a possible goal. But my method is to live at the nursing home…The cause of burnout is having an unreachable goal, or having an unworkable method.
How Can I Tell If I Am Burned Out?
Causal factors: in the caretaker
“I am trained to have high expectations of myself.” “I am used to and expect a heavy workload.” “I am embarrassed dealing in privacy areas.” “I make decisions with incomplete and conflicting or untimely data.” “I have uncertainty much of the time.” “I have conflicts/problems with my spouse and my children.” “I feel I am a failure if I am not a perfect spouse/parent/employer /colleague.”
Causal factors: in the circumstances
“My loved ones are mostly chronically ill and difficult to treat.” “My loved ones are dying.” “There are treatments I don’t understand for illnesses I don’t understand.” “Our society tends to expect a perfect outcome.”
Causal factors: for the physician
“Hospitals regulate what is ‘quality care’.” “State and national boards regulate medical practice and medications.” “There is a lack of freedom to innovate or take risks without severe repercussions should treatment failure occur.”
My Physical Signs: change in appetite, nausea, urinary frequency, loose stools, insomnia, lethargy,
tension, sweating, increased pulse, palpitations, increased blood pressure, chest tightness.
My Psychological Signs: hard to organize my thinking, inattention, easy irritability and anger, easy frustration, sadness, demoralization, apathy, indecision, fear, withdrawal from support.
My Behavioral Signs: quickness to anger, easy frustration, suspiciousness, reluctance to let others see what I’m doing, feeling all-powerful not caring what happens, risk-taking such as self-medicating, use of profanity, putting off decisions: “freeze”, loss of sex interest, blaming others for my mistakes, feeling sorry for myself and unappreciated, working longer, loss of efficiency, being reluctant to exercise or take breaks, criticizing myself for spending less time with my relative, withdrawing from family responsibilities.
How Do I Prevent Burnout?
Primary: “Love thy neighbor as thyself,” not instead of thyself . Learn that experiencing stress is normal, and not a weakness. Arrange group get-togethers to discuss common problems. Get healthy role models – if you can find them. Use leisure time. Pick goals that are possible and avoid goals that are impossible, e.g., pleasing your parents/spouse/boss… Choose methods that work and avoid methods that don’t work. List three good things that happened that day when you go to bed. List positive affirmations.
Secondary: Develop and use hobbies. Plan and take family vacations. “Date” your spouse once again.
Develop a support network. Develop or re-contact close friend(s). Make realistic goals. Cooperate with family and friends. Delegate authority. Rotate undesirable jobs. Take weekends off. Take breaks: 15’ every AM, 30’ every day at lunch, and 15’ every afternoon; if working into the evening, 60’ for supper, then take 15’ every hour; this allows you to work a long time without burning out.
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