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From personal experience, caring for a person with Alzheimer’s disease is often a series of grief experiences as you watch memories disappear and skills erode. Initially, the process itself can go unnoticed or at least be dealt with in some manner, until difficulties impact more areas of daily life and the disease can no longer be denied. For caretakers and their loved ones, this often produces an emotional wallop of confusion, anger and sadness. If left unchecked, these feelings can last throughout a caregiver’s long journey.
Providing care for a person with Alzheimer’s disease was described by my sister like "watching her kids in reverse." You can support and nourish your loved one’s independence and stability, but cognitive and physical regression will ultimately require 24 hour care. Although medical advances can slow early stage decline, Alzheimer’s currently remains a disease being researched in order to find a medical cure or a preventative option. With this difficult outlook, caregiving can become all-consuming as your loved one diminishes over a period of years. Grief, depression, and anger are common, but anticipating and learning about the disease can reduce your frustration, foster reasonable expectations, and prepare you for new challenges.
The commitment to Alzheimer’s caregiving is a remarkable gift. Learning all you can about what is happening and what to expect not only helps your loved one, it is the first step towards protecting your own total health.
Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving. In order to remain healthy, so that caregivers can continue to be Caregivers, you must be able to see your own limitations and learn to care for yourselves as well. It is important for everyone to make the effort to recognize the signs of burnout, In order to do this the caregiver needs to be honest and willing to hear feedback from those around them. This is especially important for those caring for family or friends.
Burnout isn't like a cold. You don't always notice it when you are in its clutches.
Think about what is being said, and consider the possibility of burnout.
- Feelings of depression.
- A sense of ongoing and constant fatigue.
- Decreasing interest in work.
- Decrease in work production.
- Withdrawal from social contacts.
- Increase in use of stimulants and alcohol.
- Increasing fear of death.
- Change in eating patterns.
- Feelings of helplessness.
Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended
- Participate in a support network.
- Consult with professionals to explore burnout issues.
- Attend a support group to receive feedback and coping strategies.
- Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).
- Exercise daily and maintain a healthy diet.
- Establish "quiet time" for meditation.
- Get a weekly massage
- Stay involved in hobbies.
By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. The best way to be an effective Caregiver is to take care of yourself.
From the first acknowledgement of mental changes to your loved one’s ultimate death, you are likely to experience a changing constellation of emotions, mind-numbing exhaustion, and altered relationships for a number of years.
Because caregiving is such hard work, you must learn to protect yourself first. These simple strategies will fit into your most demanding days and can energize you against the pitfalls of excessive stress:
- Schedule mini-workouts throughout the day. Regular exercise not only keeps you fit, it releases endorphins that keep you happy. Ten minute sessions sprinkled over the course of the day are easier to block out than an hour away. Take a walk or jog outside, dance to your favorite music, workout to an exercise DVD, or cycle to the store.
- Take time to play. In the early stages of Alzheimer’s disease, include your loved one in short walks, board games, or jigsaw puzzles. Join an online scrabble tournament, practice your golf swing, or play with a pet. A daily dose of fun is good medicine, and doesn’t require money, a car, or huge blocks of time.
- Try something new. Challenge yourself to learn a new skill while you are “on the job.” Order a self-paced foreign language program or try an exercise video game. From tennis to golf to pitching a strike, so-called “exergames” offer living room-friendly activities for every age and skill level. With just a few minutes of practice each day, you can flex mental muscle and relieve harmful stress.
- See the funny side. Humor is a well-known antidote to stress, sadness, illness, and boredom. Give yourself permission to chuckle at the absurdities you and your loved one experience, and surround yourself with laughter. Avoid heavy dramas at the video store and go for a hearty belly laugh. Your infectious good mood will replenish your inner resources and sooth your loved one.
- Ask for help. For someone who is used to operating independently, the realities of caring for someone with Alzheimer’s disease can be a real eye-opener. Those with strong support systems, creative respite arrangements, and regular time away not only fare better, they also find more satisfaction in their caretaking roles. Join a support group, schedule frequent breaks, and seek professional help if you recognize if you exhibit any warning signs of caregiver burnout.
Reflecting and thinking clearly while someone you love slowly disappears is tough, but this emotionally-charged experience also brings tremendous opportunity for growth, satisfaction, and love. By accepting each new reality and learning to hush your inner chatter, you can make conscious choices that promote happiness and improve quality of life.
- The desire not to think about what you are facing is normal, but you can grow beyond it. One of the biggest challenges you face is to accept what is happening.
- The process of this disease is predictable. Your loved one will lose functional ability and you will eventually have to make decisions on his or her behalf.
- You, not he or she, will have to change. Your loved one’s ability to change will become extremely limited and will diminish as the disease progresses. You will have to learn to alter your expectations and reactions.
Habits of thought and perception can create endless mental dialogues of “what ifs,” “why nots,” and “how could shes!” Consider these tips to silence negative voices and build reflective caregiving skills:
- Keep a daily journal to record and reflect on your experiences. By journaling your thoughts, you can mourn losses, celebrate successes, and look for those thought patterns that keep you from acting in the present.
- Count your blessings. A daily gratitude list can chase away the blues and let you focus on your loved one’s capabilities.
- Practice relaxation techniques. Relaxation techniques such as meditation, deep breathing, visualization, mindfulness, yoga, or rhythmic exercise can calm, restore, and promote happiness. Experiment with different techniques to find the ones that work best for you.
- Improve emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.
THE CAREGIVER ROLE
What is a Caregiver
The Caregiver Defined
Who Do Caregivers Care For
Accepting the Reality of Dementia
6 Steps to Successful Caregiving
Caregiver's Are Not Alone
Asking For & Getting Help
The Caregiver Code
Rights of a Caregiver
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Protecting Yourself From Burnout
Making Time For Reflection
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
Importance of Communication
Communicating With Someone Who Has Alzheimer's
Your Approach Sets The Tone
Think Before You Speak
Doing Tasks Together
Having Trouble Being Understood
Keeping a Dementia Journal
Making Caregiving Easier - Caregiver Notebook
Things NOT To Do
When It Just Fails
TIPS AND ISSUES
New To Family Caregiving?
Tips For Dealing with Aggression
Places To Turn For Caregiver Supoort
Take Advantage of Community Support
Random Tips From Other Caregivers
Providing Long Distance Care
When To Stop Driving
Dealing With Family Conflict
Tips on Sundowning
Ways to Reduce Sundowning Challenges (part A)
Ways to Reduce Sundowning Challenges (part B)
Helping Children Understand
Pet & Toy Therapy
Getting Someone to Take Medications
Tips For Medical Appointments
Dealing With Resistance
Tips For Day To Day
Intimacy And Sexuality
Visiting A Person With Dementia
Music And Dementia
Tips For Holidays And Gatherings
Art as Home Therapy
RESEARCH & DONATIONS