Alzheimer & Dementia

Caring for elderly or dependent adults is one of the most stressful portions of adult life. It is as much stress as tending to a newborn baby and perhaps even more difficult. With elderly parents with severe handicaps you have to deal with the legal systems and legal procedures for guardianship, medical management and financial issues. Time consuming and emotionally worrisome medical appointments and medical concerns are added to the burden. Adult children experience deep emotional loss and depression when there is a loss of parent’s conscious awareness or functions. Moreover there is often the strain of daily adversarial moments with the dependent adults who angrily express their frustration at not being independent or being in pain or confusion. On top of all of these variables, other family members to the care-giving adult experience strain so that there is often strain on marriages and grandchildren.

Woman as Caretakers
for the Elderly Parents and
those with Demenita & Alzheimer's Patients
by Dr. Carol Francis

Dr. Keena Stephenson explained in her book, Awakening Athena, that medical research uncovered that the two most stressful time periods in a woman's life is taking care of dependent children and taking care of dependent adult-family members. She reveals that physical symptoms caused by these two huge stressful jobs are primary stress-related reasons her patients come for medical treatment.

Speech and Language Pathologist, Susan Kohler, recognized the huge stress of caring for dependent adults. However, Susan Kohler discovered that enhancing the communication and connection between caregiver and care-recipient reduced the stress and unpleasantness of caregiving significantly.

As a consequence, Susan Kohler wrote How To Communicate with Alzheimer's. She provides readers with very easy and doable instructions as to how to increase the likelihood that you will enjoy your caregiving responsibilities. Also, she provides readers with tools that increase the likelihood that a confused, physically handicapped and cognitively challenged adult will be cooperative with you during those tough days and nights.

Thankfully, Susan Kohler, in her usual generous and kind fashion, has prepared a chapter for Evolving Women's Consciousness: Dialogue for 21st Century Women which gives us some pointers as to how we can face an inevitable task of taking care of our dependent-adult-loved-ones.

Chapter XVI

Woman as Caretakers for the Elderly Parents and
Family Members with Demenita & Alzheimer's
By Susan Kohler, MSCCC/SLP

CAREGIVER TO THE ELDERLY: RISING OBLIGATIONS

“Friends are an aid to the young, to guard them from error; to the elderly, to attend to their wants and to supplement their failing power of action; to those in the prime of life, to assist them to noble deeds.” Aristotle.

Women possess tenacity, courage and creativity that give them the strength required to do many things. In developed societies, she is a crucial entity in today’s work force, able to manage a household, be in charge of a company or non-profit organization, contribute artistic depth and sensitivity in all the arts and even serve in the military. Intuitively, she is healer, nurturer, tutor, and listener. We see her in all societies tending to her family without conscious agenda. Yet, there is a fast growing arena where women’s contributions are largely overlooked – Caregiver to the Elderly.

Recent statistics show the average caregiver is a woman age 46, married and working. While she still may need to administer to younger school aged children and even young adult children in her home with financial or emotional support, she is more and more becoming the primary caregiver to an aging parent or parents. In addition, statistics about professional caregivers, i.e. nurses, demonstrate that they are predominantly female, Data is relatively new on the number of these professional “caregivers,” who are also primary “caregivers” to an aging relative. This goes unnoticed largely because women tend to their daily tasks or jobs, and do not readily reveal their ever growing responsibilities to an older adult. As if there cannot be any more obligations squeezed into their day, taking care of a disabled adult is slowly becoming one more huge responsibility they have reconciled to put on their plate.

In recent years, I have heard from numerous women about the now extra-extra-curricular duties as the adult child-caretaker to their parents. One nurse at the local hospital told me she goes to check in on her dad daily after work. She often gives hours to make sure he has what he needs, before going home to her children.

One of my closest friends, moved the mother in with them so she can be looked after closely. I moved my mother into a secure retirement community on the east coast in a small apartment she can mange, where her meals are provided. I call her every night without fail to let her tell me about her day. I use the conversation to check that she is taking her medication, and making it to appointments on time.

Yet the examples above are basic care-taking compared to other cases I have been involved with as a Speech and Language Pathologist. Quite often the elder in need of care has some form of dementia or cognitive decline. This increases the burden of daily care tenfold, and involves more than just the primary caregiver. Dementia, cognitive decline, severe medical issues or Alzheimer's requires a large group. Usually, a caregiver and the disabled adult have contact with multiple doctors, nurses, therapists and peripheral assistants in the course of days or even weeks.

THE CHALLENGES OF A TYPICAL DAY

“Elder-caring has become our most difficult role.”

Cooper, et. all, Fourteen Friends’ Guide to Elder-caring, 1999

It is a well accepted fact that women are natural and nurturing with regards to caregiving. However, clearly eldercare can be most challenging. Being the caregiver to an elderly loved-one is an enormous burden that no doubt has a huge impact on the daily routine for the entire household, especially if the person needing care lives in the same dwelling. Let us look at a typical day, if there is such a thing as a “typical day.”

The following is only one moment during a long day of caregiver moments. This story is a true account told by my mother about caring for my grandmother. After the morning’s lengthy rituals of assistance in grooming and having breakfast, it was agreed upon by daughter and mother to do some shopping. Just before getting ready to leave for the day’s activity, my grandmother burst into the kitchen and sharply accused my mother of stealing her J.C. Penny’s charge card. My mother thought this was absurd. How could she possibly think that her own daughter would do such a thing! My mother could have felt disrespected and indignant. Instead, she called me since this is my professional training.

Family teams are always stronger than one caregiver especially at times like these. After my mother described this odd situation, I assured my mother that we would probably never know what possessed my grandmother to create this accusation. Cognitive slippage is always puzzling. Really, the reason why, was not that important at the moment. What was important was the “fear” and “mistrust” my grandmother felt. Right or wrong, her feelings were real and needed to be treated as such.

I advised my mother, based on years of experience with such odd moments, to go and sit with my grandmother calmly. Then, in a very calm, gentle tone say, “I’m so sorry that your card is gone. I feel terrible for you. Let me help you look for it. Together, I am sure we can find it.”
Look they did. Carefully, my mother helped her mother go through her purse, which was of course, is where it was. Within a few minutes, they found it. Happily, my mother placed the card in my grandmother’s hand. As tempting as it was for my mother to say, “See, I told you I didn’t steal it and so there it is!” She did as I had suggested and said, “Thank God we found it! I’m so happy for you!”
Effective caregiving requires many exchanges like these almost every day. Patients, strategic responses, kindness and connection take incredible emotional commitment and energy. Any other type of reactions, usually produce conflict, uncooperative responses and antagonistic feelings.

THE ROLE OF COMMUNICATION

“Communication is at the heart of every human interaction. We must connect with each other.”

Susan Kohler

How to Communicate with Alzheimer’s, 2004.This personal true story illustrates how a potential disaster can be turned around with patience and understanding and good communication. The foundation of caregiving I believe, is communication. Communication is at the heart of every human interaction. We must connect with one another in order to meet survival, social, and emotional needs. In short, human beings must communicate, relate, and connect. We are born with this drive to relate. You see it in a newborn baby who quickly learns to smile in response to human interaction. As we age, truly our delight and desire to connect does not become any less.

For the person who has failing cognitive functioning, the natural process of communication no longer functions in the style, efficacy, and speed as it could before. Take away a person’s ability to ‘connect’ with other human beings, and isolation, declining health, depression, and rapid loss of ability and quality of life will quickly follow. People who were once living as fully functioning, independent members of a community become dependent, helpless, burdening members of society.

COMMUNICATION TECHNIQUES CREATE THE EMOTIONAL CONNECTION

"We can do no great things, only small things with great love.” Mother Teresa.

Remember the strengths of a woman, the natural healer, nurturer, tutor, and listener. It is important to pull from all these attributes as a caregiver to the elderly. Attention to these personal qualities helps us to make the emotional connection needed in daily care and interactions. Emotional connection develops trust, cooperation, self-esteem and wellness for the person in your care. Likewise the connectedness felt by the caregiver is reported as giving them a purpose, and a sense of satisfaction. It is clear that making the “connection” results in good feelings for both caregiver and care-recipient. This connection is called the “emotional connection,” and is achieved by the use of good communication techniques.

It is wrong to assume that just by talking to someone, a connection will come to light. The emotional connection does not happen without our help. The wonderful feeling of connectedness is the result of two human beings with their attention engaged on each other. Caregivers must initiate this sense of connection for the elderly person to be successful in this simple but profound act.
Here are four useful strategies in communication that will facilitate the emotional connection:Get their attention Taking the time to enter a person's space, make eye contact, allow time to process incoming stimuli results in open-lines of communication between the caregiver and the person we need to engage.

Speak in a calm tone of voice .

Keeping yourself at a comfortable, close proximity, eye level, and using a gentle voice with clear intelligible speech and friendly body language. You vocal tones will likely be matched by the other person.

Use touchUsing an appropriate gentle touch is loving and calming and says “I love you.”
Learn to be a good listenerEmploying this simple strategy of listening will help you tune into the person. It may mean that you must be silent and learn to listen with your eyes as well as your ears to verbal and non-verbal cues.

These are just some of the practical techniques that connect caregiver to care-recipient creating a safe and loving environment. There are more useful techniques to learn. You can access a full explanation that will help you with your care-recipient in my book, How to Communicate with Alzheimer's.

As a Speech-Language Pathologist, I advocate mindful practices of these and other techniques to enhance the quality of your interactions. Today’s world reduces the meaning of communication in exchange for information especially with the invasion of electronic devices. Making the “emotional connection” is the interaction of the human spirit.

“Where two or more are gathered…there am I… “(Matthew 18:20).

BE FLEXIBLE

“Holding on to anger only gives you tense muscles,” Joan Lunden, Joan Lunden’s Healthy Living, 1977.

As I mentioned above, mindful practice of the communication strategies will develop your skills, and raise your awareness of how to make the important emotional connection to support your efforts in caregiving. It will draw from your naturally given characteristics of listening and showing compassionate care. Flexibility is key. Without flexibility, frustration is likely to surface. Think of flexibility as the antidote for rigidity. As I mentioned in the story of my mother and grandmother, flexibility was demonstrated. My mother let go of her agenda at the moment my grandmother became unreasonable. My mother let go of ever going shopping that morning if necessary, to ensure the safety and comfort of her mother. My mother’s initial reaction was to get aggravated. However, once she dropped her agenda, she let the encounter unfold wisely and her mother responded. Only, then did a working connection become renewed.

Practice your communication techniques. Practice makes perfect. Set some goals for yourself in using the suggested techniques. Start with one that seems practical to try, and make a note of your loved-one’s response and the feeling it created for you as well. Check yourself throughout the day. Develop a keen awareness of the nuances of communicating that will enhance your caregiving, reduce stress and improve the quality of life for both you and your loved-one.

Accept the communication difficulties that will arise. Caregivers report communication difficulties to be one of the major sources of stress in caregiving. As a caregiver, it is important to understand and accept what is in your control and what is not. Communication difficulties will become a stressful component of your duties if you do not address the need for making an emotional connection brought about by good communication techniques. Remember, what you do have control over. Learn and develop good techniques to create a positive environment for caregiving.

TAKING CARE OF YOURSELF

“A cheerful heart is good medicine; but a crushed spirit dries the bones.” Proverbs 17:22.

No one understands the physical, emotional, financial and social strain a caregiver goes through. Each situation is unique. Even well-meaning individuals cannot stand in your shoes. Caregiving most optimistically is an opportunity to learn all you can about caring for someone else. Simultaneously, at the same time, you learn about the part called “taking care of yourself.” You will be discovering new and challenging thins all the time. Many aspects of a caregiving role often catch us by surprise.

Sometimes new situations are immediate crises. Sometimes complications sneak up on us gradually. It is not unusual for caregivers to think they are alone in this role, and most are surprised to find out that there are so many others in the same situation. When people attend support groups, soon realize they are not alone and can share the challenges and rewards as well as. They find they can relate ideas for coping and practical information on caregiving. This not only increases their identity as caregivers, but can also makes them more understanding and supportive to advocate for each other.

Stay connected to friends, family and support groups. Learn when and how to ask for help, even if it is just for a few hours. Schedule time for yourself as you need it. This is not a selfish thing to do. Ignoring your needs will not do anyone any good. Why risk the health and safety of you and your loved one when there are so many places to go for help?

One of my favorite caregiver stories comes from a woman at a conference where I lectured. The woman proudly stood up and told the room that she buys a season pass to Disneyland every year. It was her way of taking care of herself, and in telling us this, we all smiled. What a delightful way to illustrate how to make “taking care of yourself” a priority. Think about this. Everyone will benefit from it. Family, work, your body and emotional well-being – everyone needs you at your best. It is your job to be healthy. So take the time and use whatever resources you need to stay well. Where can you go, physically, or spiritually to find the happiest place on earth?

THE REWARDS OF CONNECTING

“Alone we can do so little; together we can do so much.”Helen Keller

Even though caregiving comes with its inevitable share of challenges and frustrations, a closer look gives us as caregivers, an opportunity to observe some positive outcomes. There is a sense of contentment in spending time with the person needing care, improving relationships with other family members who share in the care, feeling like you make a difference, and connecting with other caregivers. The challenges of caregiving also open the door to personal and spiritual growth, a deepening awareness of life’s unanswered questions. Take a moment to think about all these ideas. In addition, are these rewards noticeable in your caregiving? Can you see how the rewards are the result of making “connections?”
What great rewards await you if you have the patience and mindfulness to try each day to improve your skills to make an emotional connection? In addition, consider in how you help facilitate the positive experiences of sharing, bonding, building self-esteem, and wellness in a person unable to easily express their thoughts, feelings, or relate to their surroundings. Personally, I have come to know the importance of making connections especially with the elderly, and I am dedicated to sharing this need, as we are all caregivers to our society. My moment of insight happened in a simple encounter at a nursing home years ago. My Personal Reflection: The Smile

An elderly woman sat in a wheelchair, being fed by a tube inserted into her stomach. She could no longer sustain herself by oral nutrition. Her face was expressionless. Her only form of verbal expression was, for the most part, babbled syllables. This tiny frail woman, babbled over and over until she became restless and agitated. It was as if her behavior was a cry to have someone, anyone, to pay attention to her. What was even more heartbreaking was the way in which no one, even me, made any effort to talk to her. In fact, it was apparent that staff made a conscious effort to avoid this resident. Not even a quick smile or simple social greeting was offered. Everyone walked briskly past the feeble woman.

On this particular day, I happened to be charting at the nurses’ station. The woman, seated in her wheelchair was rolled and parked (breaks locked) facing the nurses’ station by one of the aides. Just like any other day, the babbling began. Aware of her communication difficulties, my assumption was that she was simply unable to speak coherently. The relentless babbling became irritating, and I found myself unable to concentrate on writing.

As I forced myself to proceed, unexpectedly, without thinking, I happened to look up for a moment. In this moment her eyes met my eyes and abruptly, the babbling stopped. So immediate was our connection, it seems my subconscious stirred, and I was compelled to say, “Good Morning!”
With her eyes still locked on mine, the woman instantly broke into a smile. A beautiful broad, heart glowing smile was then followed effortlessly with the most intelligible speech I have ever heard, replied, “Thank you.” My heart warmed. Fading pangs of irritation vanished and were immediately replaced with an attitude of compassion. This was our emotional connection. Intellectually, I understood the need for human beings to interact, but I had not really felt the power of this connection from my soul, as I did in this moment. I have never forgotten that connection, and from that moment on I have never looked back. This moment, her smile and “thank you,” was my turning point which defined my purpose and mission to raise society’s role as caregiver to the elderly. As women, I realize, we give freely and naturally, without even knowing, in a caregiver role. We possess the attributes to demonstrate to others, this caring model of reaching out to others.

WOMEN AS ROLE MODELS

“We never know how high we are, till we are called to rise;
and then, if we are true to plan, our statures touch the skies.”--Emily Dickinson

Please accept this humble reflection of the importance of caregiving to the elderly and our duty to step forward as role models. We have the ability to encourage and inspire others to reach out and connect with our elderly and bring them into the fabric of society. We need to involve our spouses, partners, neighbors, children, health care providers, physicians, store owners, sales reps, clerks and politicians. We need to raise the consciousness of the group mind to “include” our frail elderly and help keep them nurtured, vital – connected.

Women should not carry this responsibility alone, but engage others to adopt healthy caregiving expertise as a job that employs everyone. In fact, at the heart of healthy caregiving, is developing the skills needed to make an emotional connection with others. As women, we possess the tenacity, courage and creativity that can incite others to unite us in helping the elderly.
Our strength grows deep from our spiritual centers. Our spiritual center makes us do great things. It makes us beautiful and loving. This is why we are here – to share this with one another and make “connections.”- Susan Kohler