Starting Tips for the Alzheimer's Caregiver
- Dementia and Alzheimer's Care: Planning and Preparing for the Road Ahead
Dealing with a diagnosis of dementia or Alzheimer's in your family? This guide will help you prepare for the road ahead.
“Before the players on my football team took the field, we studied and learned everything we could about the team we were playing,” writes Coach Frank Broyles. “Preparation is the key to facing any opponent.”
Coach Broyles, engagaged in Alzheimer’s research when his wife Barbara was diagnosed with the disease. His football coach’s play book is the pattern for Coach Broyles’ Playbook for Alzheimer’s Caregivers.
The coach recommends, “Learn all you can about Alzheimer’s disease. It will help you prepare for the months and years ahead.”
Gather Some Resources
Coach Broyles Playbook for Alzheimer's Caregivers can be purchased in nineteen languages. It is a great resource, simple but detailed in 110 pages. It explains the three stages of the disease - early, middle and late.
Subheadings under each stage compare with the layout of the football game:
- pre-game planning
- coaches and special teams
- playing offense
- playing defense
- the training table.
The book comes with a 17 page booklet on Tips and Strategies which gives very practical and insightful explanation of the patient's behavior and suggestive helps for the caregiver.
Alzheimers.gov for people helping people with Alzheimer's offers valuable research information; video tapes and transcripts on different facets of the disease and links to the Alzheimer's Association, National Institute on Aging, VA Caregiver Support and other resource sites. Under their Caring for Someone page, there are questions and answers on everyday challenges and caregiving process.
Making Life With Alzheimer’s Easier by Lianna Marie Doherty deals with all the regular Alzheimer’s information; but in addition, it teaches practical ways to make the life of the Alzheimer's patient easier—how to understand her emotions, how to relate to her in a way that lessens her stress and frustration, foods she should avoid, and also how to deal with the caregiver’s emotions. It also contains stories of the author and other people who have been affected by Alzheimer's.
Share Your Feelings
Sharing my situation in How Alzheimer’s Upset My Mother’s Life and Mine paid off in great dividends. Many people responded by sharing their experiences with Alzheimer’s people they know or have cared for. One of the precious letters I received came from someone who was an only child like I am. Her report of caring for her mother really empowered me to believe that I could do as effective a job as she did. It gave me a sense of connection which I will forever cherish.
Share your feelings and resist the temptation to think that nobody cares, when in fact, there are many others who have their feelings bottled up inside, waiting to share with one who needs to hear.
Pick a Support Team
Coach Broyles compares the Alzheimer’s caregiver to the quarterback who needs the cooperation of the entire football team in order to score points. It is your job as a prospective caregiver to find and select family members who are available and solicit their support.
If the patient needs company twenty-four hours, the caregiver will need regular breaks—personal care time, time for spiritual and emotional nourishment at a worship service or prayer meeting, time to socialize so she does not lose contact with the outside world. Alzheimer’s caregiving cannot be a one-man show, not only for the caregiver’s personal benefit, but also because the loved one will not receive the best care from someone who is tired and frustrated. A good support team ensures that the caregiver is allowed time to exhale, refresh and reset.
Select a Primary Backup Helper
Apart from the daily responsibilities of caregiving, there are some essential matters to be handled. At some point medical care, bills to be paid, and legal matters concerning property will become too complicated for the patient. The caregiver needs access to all the pertinent information, but what if the caregiver should become too sick to manage, disabled or worse? A back-up helper should be selected before any such crisis occurs.
The primary backup helper may be selected from the support team, or may be some other family member who is acquainted with their arrangements. It would be wise for all concerned to know beforehand, so that there is no confusion when it is time for action.
Locate a Support Group
Members of the support team meet, share phone calls or emails, or write newsletters to encourage each other. To get help finding a support group in the United States, call the Alzheimer's and Dementia Caregiver Center at 800.272.3900.
On my Caribbean island of Saint Kitts, there is no organized support for caregivers. Alzheimer’s though cruel to the families of the few victims on the island, has not gained enough attention to warrant national consideration. On World Health Rankings (2010) Alzheimers/Dementia occupies the 16th slot in causes of death. That translates to 6 deaths (1.75%).
UPDATE: Re St.Kitts-Nevis
Below is a fifteen-minute video in which caregivers tell their story and demonstrate how community support can be helpful. It is worth the time to watch. Caregivers in other communities might get helpful ideas.
Focus on Staying Healthy
Health, physical as well as mental, is super-important to the caregiver. Basic rules of proper nutrition, adequate rest and regular exercise cannot be ignored. Food supplements are as important to the caregiver as they are to the patient.
Throughout the day, create and maintain a mood of peace, joy and contentment through:
- inspiring messages on radio or tape
- songs with uplifting lyrics
- motivational poems and quotes
- humorous videos
The caregiver’s preparation includes resources which, if habitually used, can negate the need for drugs as mood enhancers, tranquilizers or energizers. The state of the caregiver’s mind will determine the outcome of her struggles between faith and fear, hope and despair, serenity and worry.
“Have you tried prayer?” is sometimes asked as an afterthought when everything else has failed. It comes at the end of this article as “last but in no way least.” Prayer must be a habit for the caregiver.
The prayers of friends and supporters are also necessary. Submit your prayer requests to people who care, to prayer groups in your church and community, and even solicit prayer online. Never underestimate the power of prayer.
© 2012 Dora Isaac Weithers