Care Partners

 

There are three Villages support groups that care partners should consider attending.

  • Monday mornings at the Tierra Del Sol Recreation Center. 9:30 to 10:45 a.m.
  • 1st and 3rd Thursdays at Bradenton Recreation Center. 3:30 to 4:45 p.m. Subjects of interest to those with PD and their care partners. Some attendees go out to dinner afterwards.
  • 4th Thursday of each month. Care partner luncheon meeting. Eisenhower Recreation Center. 1:00-2:30 p.m. Bring your own lunch.

The following is a summary of a care partner focus group that was held at the Bradenton recreation center during the summer of 2022.

 

Care Partner Stress

Introduction

On September 1, 2022, 70 residents of The Villages, Florida, gathered at the Bradenton Recreation Center for an hour working meeting that focused on Parkinson’s Disease care partners. After a 15-minute overview of care partner health statistics presented by a fellow Villager, the attendees gathered in groups of eight to develop lists of ideas that might lower care partner stress. This report presents the results.

Care Partner Statistics

  • Care partners report double the rate of health issues than those not providing 24/7 care.
    • 60% reported fair to poor health
    • 45% reported serious chronic health conditions.
  • A study reported in the Journal of the American Medical Association (JAMA) found that for stressed care partners 66 to 96 years of age, mortality was 63% greater than those not providing care.
  • Chronic stress shortens cell life. The result can be a 10-year shorter life span.
  • Stressors include:
    • Loss of hobbies, friends, and vacationing
    • Sleep deprivation
    • Isolation
    • Emotional and physical demands leading to depression and injuries.
    • Loss of intimacy
  • A stressed care partner can lead to reduced life expectancy for their loved one, called emotional contagion.
  • The good news. An unstressed care partner’s mortality and morbidity is identical to a non-care partner!

Ideas for How to Lower Care Partner Stress

Take a periodic daily break from the disease

Find personal time every day to disengage.

Golf; work in the yard; read; spend time alone working on the computer; spend time grooming; go for walks; go to the gym; join The Villages woodshop and make things out of wood; take a ride in a golf cart; put on a headset while finding a quiet place to be alone and listen to music; take time to participate in your favorite hobbies; swim; care-partner-only luncheons; take day trips without your loved one; talk to family and friends via the telephone/ text/ or video conferencing; go shopping (grocery store, craft shops, clothing stores, hardware stores, etc.); get a massage; relax by doing yoga; join a club to learn new things; take on-line educational courses; watch television; do crossword puzzles; lunch alone or with friends; do puzzles; meditate; cook; go to the movies or other entertainment such as at the Savannah Center or the Orange Blossom Opry; do the Hocus Focus in the newspaper; organize and participate in periodic day trip for care partners.

Take longer breaks from the disease

Go on a vacation either alone, or with friends and/or family. Take a vacation with your loved one where the care partner does not have to fix meals, where there is opportunity for the two of you to have time to yourself, travel challenges are minimized and there is a change of scenery. Cruise ships are a good choice.

Living Arrangements that may lower stress

Sleep in separate beds. Sleep in separate bedrooms. Plan each day ( perhaps a week or month in advance) and use a calendar to define each day’s activities. Use a computer calendar application such as Google calendar or Apple calendar. Prepare contingency plans for any unforeseeable event such as a fall (call lift assist or 911 if needed), trip to the hospital, trip to see the doctor, and so forth. Bring a trained service animal into your lives. Add home security and support devices such as Amazon Alexa, monitoring cameras, remotely operated door locks. Add a lift chair in the home. Add poles, railings and rope ladders that help the PWP get into and out of bed without stressing the care partner.

Support

Hire help for yard work.

Hire a companion to assist both the person with Parkinson’s (PWP) and the care partner, for household chores, grocery shopping, driving the car to appointments, home maintenance.

Network with other care partners. Find someone to share concerns, frustrations, or simply a bad day.

Things to do together

Eat out frequently and talk about things unrelated to PD.

Intimacy. A very personal, individual and couples-thing. Download the Parkinson’s Foundation paper on intimacy and discuss it as a couple. Seek professional help as needed such as your doctor, a psychologist, a marriage counselor, a urologist and or a gynecologist.

Develop friendships with people with similar challenges.

Attend as many PD support group meetings as possible.

Get hearing and speech evaluated so as to help improve couple communication. When talking to one another, look directly at each other.

Develop things you both enjoy and can do together.

Share responsibilities as much as possible; PWP needs to contribute as much as they are capable of.

Put yourself in each other’s shoes as a way of calibrating yourself.

Schedule a time each day to just talk to one another and share the good things that have happened.

Laugh a lot!

Driving

PWPs should consider not driving any longer due to risk to themselves, others, and their care partner. The PWP might listen to books on tape when riding as a passenger. Get multiple assist devices such as walkers, scooters, wheelchairs, and keep one in the car to reduce the frequency of need to load and unload devices. Get a larger car to make transport easier. Carry a small tote bag with all of the things the PWP will need when out and about. Buy one of the newer cars that have enhanced safety features.

Other

Have a glass of wine each day! Have a square of dark chocolate each day! Get and use a fidget quilt.

Take the Savvy Caregiver Course. https://www.caregiver.org/resource/savvy-caregiver-program/

Have the PWP wear a medical alert device.

PWP-specific findings

Do not resent care partners getting away for a few hours, a day, a long weekend, or a week or more.

For men with Parkinson’s, get rid of the machismo!

Keep care partner’s needs at the forefront of your thoughts and actions.

Care Partner Interview

Watch a 30-minute interview of Village’s residents Jane Masterson and Edmund Smith as they discuss their care partner and caregiver experiences.

Care Partner’s Creed

  • I take care of myself. I know that if I am not healthy and sound, I cannot care for another person effectively.
  • I accept that caregiving involves an incredible range of emotions, from anger to joy, from resentment to compassion. I accept that my feelings are not right or wrong, They just are. And they are as natural and unavoidable as breathing.
  • I ask for and accept help willingly. I involve my family, friends and the community in the care of my loved one. I understand that it’s not my role to do it all, nor is it best for my loved one.
  • I actively seek out information that can help me as a care partner. I recognize that information is empowering.
  • I respect the preferences and decisions of my loved one. I extend to that person the dignity and courtesy I would wish to receive if the tables were turned.
  • I recognize that change–good and bad– is a natural part of the disease progression. I remain flexible and open to change.
  • I celebrate the small successes and allow myself to grieve the disappointments. I share my feelings with those who can empathize.
  • I am mindful of my own needs, and I guard my rights as a care partner, I do not allow a disease to overwhelm the other aspects of my life.
  • I forgive myself my shortcomings, and I congratulate myself for the effort and love I put into being a care partner for the person I love.

 

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