Power Caregiving

By Mary Z. McGrath, Ph.D.

 

When the first signs of a serious illness occur in a spouse, friend or family member, one may feel very powerless and overwhelmed. Surprisingly though, when assuming the role of caregiver, whether directly in your home or indirectly if your loved one is in a facility or hospital, you can discover your personal power. By focusing on the job skills that you already have, you can move into the role of caregiver and become a powerful and effective advocate for the person experiencing a challenging illness.

Consider the skills you use in your professional job role. This could include work in the business world, education, other professions and parenting. Realize that over time you have sharpened your range of talents and skills in order to work successfully in your career or parenting role. Though these skills work for you on the job, they are also within you 24/7. It is a matter of naming them for transfer to another venue where they will show themselves in a different form. Then you can target them for maximum benefit to your loved one. Following are seven skills that professionals and parents develop to work successfully on the job and in their specific roles.

1. Communication: Fundamentally, this involves effective speaking and writing skills
used on behalf of someone who is unable to do that for themselves due to illness or loss of abilities. Caregiver communication also involves learning the communication styles and networks of those who assist your loved one. Notice the methods used for staff to communicate with one another on both a formal and informal basis. Once you learn how hospital or care facility staffers communicate among themselves, you can move your concerns forward. Make it a point to know when and how often team information sharing meetings or care conferences are held. Find out how care providers transfer information when making a transition between shifts or facilities. Then determine what you can do to ensure that the proper information flows along their communication networks and reaches the proper people on a regular basis.

Know that your questions and concerns are important and welcome by healthcare
facilities. Routinely ask to review your loved one’s current care plan and seek accountability for its application.  Post a sign in your family member’s or friend’s room stating your requests. You can gently remind health professionals by posting a simple message about how a special drinking cup enhances your dad’s eating independence. Suggest that they set the television to a favorite cable network or radio to a preferred talk station to broaden your husband’s world.

If you have home care help, list their duties in a spiral notebook and request that they
check off what they have accomplished in your absence. That way, you will get an idea of their pace and if your requests are reasonable. Encourage home care personnel to write their comments and questions for continued clarification and to maintain practical communication. This way, you will develop an open dialogue for the ultimate benefit of your loved one.

2. Organization: Caregiving brings another dimension to your life as you become
adept in an another arena. To better manage this added area of your life, create an extra column in your planner in order to address the specific concerns of the person that you assist. Keep track of developing priorities there and follow up as needs warrant.
When attending a care conference or medical appointment, come with a list of questions and concerns. In order to bring focus and clarity to these meetings, stating issues and concerns in writing for all in attendance helps save time for the busy professionals involved.

Consider creating a form in your computer using categories that fit for your loved one. For example, begin with a statement such as this: “Topics of Interest from the perspective of caregiver - THANK YOU!” Then list discussion topics under any of the following category headings that apply as follows:

Diet, Medical, Physical Therapy, Speech Therapy, Occupational Therapy, Social, Spiritual, Care Assistance, Psychological

Besides organizing papers with communication, organizing objects and spaces can be helpful. Keep daily items in a regular spot to add predictability to their lives. For example, place items such as keys and wallet in a box in the same spot. Organize drawers with items in the same part of the drawer. Place clocks, easy to read calendars and daily schedules in clear view. Review them regularly. Whether at home, a care center or hospital, your loved one can benefit from easy view of the time, date, day of the week (even noting a special holiday) and a daily schedule of events and expected visitors.

3. Application of New Learning: When approaching hospital or long-term care
facility staff, you encounter terms used commonly by them. As you would in any new job, make an effort to learn the vocabulary associated with these environments. Study up on the disease or disability that challenges your loved one so that you can meet the personnel on their turf with effectiveness and confidence. Seek out Web sites, organizations and groups that hold the concentrated information that you need. Study this as if you were preparing for a graduate certification! Then you will be able to integrate the information into your one-on-one caregiving as well as your exchanges with professionals at a clinic or a skilled nursing facility care conference. The more you know, the more you will learn. Being in a posture of constant openness to new information every step of the way empowers you as a caregiver and accelerates the opportunities for support for your loved one as well.

4.  Planning: When you leave after visiting someone in a care facility or hospital,
remind your loved one and the staff who work with them of the next time you will be returning by writing this information on a white board in their room or posting it on a visible note where they are sure to see it regularly. Ask facility assistants to reinforce this information through verbal review. Also tell them of upcoming outings or medical appointments.

When planning your own week, do so strategically by clustering appointments by time and location. Look at the big picture and consider including a social dimension to a medical outing. For example, stop for a treat after a doctor visit to add the balance of lightness and fun to a potentially serious outing.

Plan to prevent or decrease functional challenges by keeping specialized eating utensils and other important self-care items in an easily accessible and predictable spot. Have colored tape or bright colored dots or stars on radios to mark their favorite station. Mark the washer and dryer in a similar manner. Look at placement of rugs and install railings and grab bars in strategic spots. Add bright colored tape to facilitate easier visual focus on spots to place hands to make it easier to get in and out of the car.

Ultimately, it is a matter of figuring out what needs to be adjusted in the home, automobile or in their facility space so that they can function most independently and easily. Then, with proper planning and implementation, the loved one’s day will go more smoothly.

5. Flexibility: Analyze the environment, looking for what you can adapt for
optimal function. You may need to let go of where you have formerly placed items, what you may have planned for the use of certain space and how you had planned to spend your time. Place a priority on the needs of your family member, asking yourself questions in regard to their physical needs.

Do they need bright tape to signal the steps into the garage? Where is the best spot to
place furniture for easier passage and optimal safety? What kind of remodeling do you need to do to your home to ensure they can remain there for a longer time? What kind of automobile would best suit their needs? What kind of adaptive equipment would help them read, write and generally communicate in a more clear way?

What changes need to be made in lifestyle and schedule to accommodate your
loved one’s legitimate needs and to ensure their safety and opportunity? By thinking and acting with flexibility, you apply valuable work skills to the benefit of the person whose needs require the willingness of others to change and adapt.

6. Interpreting Situations: Have your antennae out wherever you go on your loved one’s behalf. Ask yourself ways you can include them in social exchanges through cueing and leading questions. How can you use your own mobility as well as visual, auditory and social skills to bridge areas where they experience challenges in function? Read the weather report and consider how temperature and moisture conditions will impact their function in places you plan to be in a given day. Adapt their clothing and use of assistive devices accordingly. Continuously consider how what is said, done, set up, or arranged will either benefit or impede his or her optimal function in any given location. For example, when being guests in someone’s home,  ask ahead about bathrooms, steps, rugs, or food served. Offer to bring special food or items to make the visit go more smoothly. This kind of social interpreting will help to promote your loved one’s success in a range of circumstances.

7. Sales and Marketing: Instead of promoting a product or service or even yourself,
think in terms of advancing the concerns of another person. Determine ways to bring medical and social service providers’ special attention to the specific situation and needs of your family member.  Utilize your skills to link the needs of your loved one to the offerings and support of these specialists and the opportunities made available by community agencies.

Point out the unique strengths and needs of your loved one. How can you
make them stand out in the mind of service providers who see many other individuals with serious concerns? Would it be through a follow-up note? A small recognition gift? Affirmation of their efforts and skills? Gratitude for all they do for your family member? Just as in business, building respect and goodwill goes a long way in this realm as well.

Beyond those mentioned here, make your own list of additional skills and include in
your supplemental list ways you can uniquely transfer your skills. Perhaps you have more training for this role than you realized. As time passes and you grow in awareness of ways you transfer your skills from work, education or parenting, you will function more effectively as a powerful caregiver.

Mary Z. McGrath, Ph.D is a speaker, author and caregiver. She works with schools, parents and organizations supporting wellness and the family’s potential.  You can visit her Website www.maryzmcgrath.com.

 

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