FAMILY CAREGIVER NEWSLETTER
OCTOBER 2011

Support Group and Event Information Inside
THE POWERFUL CAREGIVER
This column is named after the class “Powerful Tools for Caregivers”, a six-session workshop on helping caregiving families thrive (not just survive). It is offered in Racine County several times a year

Stages of Caregiving 

When meeting a life challenge, it’s always helpful to know someone who has “been there” ahead of us and survived!  Authors Gail Sheehy (Passages in Caregiving) and Denise M. Brown (The Caregiving Years ) have travelled their own caregiving paths.  They generously share  insights and wisdom they gained from those years. Both authors describe a series of “stages” of the caregiving experience.  Denise compares the caregiving journey to a footpath along which we sometimes stumble and need something to steady us.  Gail likens it to walking a labyrinth with turns being milestones and the center being a place where we may feel the profound sadness that comes with facing our limitations and losses and our loved one’s mortality. We then proceed outward.  Our burden seems lighter as we accept help and re-engage in other aspects of our lives.

 We may arrive at these stages in chronological order, but we’re more likely to travel back and forth among them.  At any rate, it is good to be aware of them as we navigate through our individual journeys, for each stage has its pitfalls and lessons.

 Here is a very brief summary of stages experienced by two fictional caregivers who represent many of those I have had the privilege of knowing. 

Mobilization and New Normal (Sheehy) or
The Freshman Caregiver (CG) and The Entrenched CG (Brown)

Christine is a 38-year-old mother of three children who works full-time as a teacher.  Over the last several years, she has been helping her 88-year-old grandfather Harry, who lives alone.  He has rheumatoid arthritis and heart disease. At first Christine was only providing transportation for him.  Over time she has also begun doing his cooking, housecleaning, bills, and yard work.  
She has always been close to her grandfather, and she is glad she can help him in his elder years.  She has made many adjustments in other areas of her life in order to give him the best care she can.  She often goes to his house directly after work, while her husband participates in her children’s activities.
Lately, Christine has noticed that her grandpa appears unkempt, and she suspects that he is having more difficulty taking care of his own physical needs.  She wonders how she will add daily physical care to her already busy schedule.
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Dave is a 72-year-old businessman who retired two years ago.  He and his wife Shirley planned to travel a lot during the “golden years”, but last year Shirley had a massive stroke, which left her with paralysis and dementia.  She needs help with most of her physical care (called Activities of Daily Living).  Shirley was always a devoted wife, taking care of all household tasks and making sure Dave was comfortable and contented when he was at home.  At the time of the stroke, all Dave could think of was that it was now his turn to take care of her.  He has learned to cook, keep the house tidy, do all the paperwork, keep track of Shirley’s medication schedule, help with her physical needs, and transfer her safely to and from bed, chair, and toilet. Daily life in retirement is certainly not what Dave had planned, but he feels he has adjusted well to a “new normal” routine of giving back to his wife. He thinks wistfully of his golfing days and misses his buddies.  He has gained a considerable amount of weight since Shirley’s stroke, he has not been sleeping well lately, and he’s just not feeling well.

 Boomerang/ “I Can’t Do This Anymore) or The Transitioning CG 

One day Christine arrives at Harry’s house after work, and finds him still in bed, soaked with urine, very warm to the touch, and calling out for her.  She calls an ambulance, and after five hours in the Emergency Dept., Harry is admitted to the hospital with pneumonia and a urinary tract infection.  Christine spends as much time as she can visiting her grandpa, but she feels uncomfortable deep inside.  One night her youngest child says, “Mommy, I miss you.  I hardly know you anymore.”  Now she knows that she can’t go back to the same routine of caregiving.  She needs something to change.
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A year or so after Shirley’s stroke, Dave’s daughter notices that he is becoming more and more withdrawn and doesn’t seem to feel well.  At her urging, he visits his doctor who diagnoses depression, high blood pressure, and diabetes (all conditions related to stress)!  Among the treatment methods the health professionals put in place is their insistence that Dave accept help with caregiving.  

Coming Back or The Transitioning Caregiver
Chris confides in her cousin from a neighboring town, and together they talk with the hospital discharge planner and visit the Aging and Disability Resource Center. They are then able to piece together a care plan that includes a Personal Emergency Response System (e.g. Lifeline) to enable their grandfather to summon help; Meals on Wheels; and assistance from Skillbank workers with housecleaning and yard work.  Harry also attends Harmony Club once a week, which he enjoys.  Chris attends a Saturday support group for caregivers, where she meets other people on the caregiving journey.  A group of people from her church form a Care Team and take turns bringing Harry evening meals and being friendly visitors for him.  Chris  gains some peace of mind, especially when Harry is at Harmony Club.  She spends more time with her family, which is a pleasant change for all of them.
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Dave’s daughter arranges a family meeting, which results in the adult children setting up an online schedule to take turns caring for their mother.  The grandchildren, too, participate by taking turns with yard work.  Eventually, Dave hires a live-in caregiver.  He begins to reclaim his life and also to have more quality time with Shirley.  Together, they visit grandchildren, enjoy movies, and attend the SPARK program at the art museum.  Dave is able to go golfing once in awhile. With exercise, diet, and medication his physical health improves.

The Long Good-bye
 After some time Harry experiences more illness and several falls.  Chris realizes
 that he can no longer be alone at all.  She finds a residential care center and helps him move there.  She visits him often, and she realizes that she feels more like his granddaughter again and less like his caregiver.  They play the card games they used to play when she was a child.  She notices his mental and physical faculties failing day by day, and she sadly realizes that he will die soon.  She and her children visit often, take him his favorite foods, and let him know in many other ways that they love him, and he is an important part of their family.  When the end of his life comes and Chris looks on her caregiving years, she is glad (as are most caregivers) that she had this experience.  When her children are older, she returns to school and uses the knowledge from this journey to take up a career in eldercare.
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It is extremely difficult for Dave to realize that his retirement travelling dreams will not include his beloved wife.  Sadly, he begins to let go of what he planned.  He takes his grandsons on fishing trips and continues to golf and socialize with his buddies.  He attends a support group and meets other men whose wives need care.  It is good to talk about the caregiving experience with fellow caregivers!

Community Resources for Caregiving Families
This column highlights some of the many resources in our community. For more, see the Community Resource Directory available from the Aging and Disability Resource Center (638-6800 or www.adrc.racineco.com).
SPARK- is a program series that provides cultural programming for people with memory loss and their caregivers.  Started at the Museum of Modern Art in New York, it provides enriching experiences, including hands-on art activities, art conversations, poetry, dance and movement.  Call Tricia Blasko at 262-636-9573.
MEALS ON WHEELS -  provides (midday) meals to those who are homebound and at least 60 years old.  (Call 636-0727)
PERSONAL EMERGENCY RESPONSE SYSTEMS -   Several are available in Racine County.  Look on pages 72 & 73 in the Community Resource Directory.  You can access the Directory at:                  or call 638-6678 and request a copy by mail.
IN-HOME HELP - See Community Resource Directory, Pages 19-24. Call 638-6678 to request printed information on hiring in-home caregivers.
HARMONY CLUB  (898-8900) – A social model group respite program offering individual companionship, supervision, and activities.   (Call 898-8900).     
CARE TEAMS – Staff of the Senior Services Dept. of the ADRC are willing to assist caregiving families and those who care about them in forming teams organized to meet  particular needs related to caregiving.   For more information call:  262-638-6678 or email marilyn.joyce@goracine.org.      

SUPPORT GROUPS FOR FAMILY CAREGIVERS
Need someone to stay with your care receiver
while you attend a support group or class?
Call 262-638-6678 to learn about free respite care. 

First Friday 10:30AM-12Noon 
Alzheimer’s Association Group –   OCT. 7     
For Families Dealing with Alzheimer’s and other Dementia
Lincoln Lutheran Office Building, 2000 Domanik Drive
4th Floor, Enter through door on West side of bldg.

Second Tuesday 1:30-3:00 pm		OCT. 11
Yorkville United Methodist Church
17645 Old Yorkville Rd.
(3 Miles West of I-94, Just N. of Highway 20)

Second Saturday 10:30AM–12N      OCT. 8
Mount Pleasant Lutheran Church, 1700 S. Green Bay Road

Third Wednesday 1:30-3:00 PM    OCT. 19     
Burlington Senior Center, Eppers Room,  209 N. Main Street

Lunch Hour (12 to 1) “Brown Bag” group:  OCT 13-NOTE CHANGE
1717 Taylor Ave., County Service Bldg., 3 South Conference Room

Third Thursday, OCT. 20
Alzheimer’s Association Group  6:00-7:30 PM
Mount Pleasant Lutheran Church, 1700 S. Green Bay Road
1700 S. Green Bay Road

OTHER EVENTS FOR CAREGIVING FAMILIES
 “Talkin’ the Talk, Walkin’ the Walk”
A relaxing day for family caregivers.
Thursday, October 20 10AM-3PM (Includes lunch) 
Free to all Racine County caregivers
 Free respite care for your care receiver with prior arrangement.
 The beautiful location in Burlington is easily accessible from Hwy 11 or 20.
(See Insert Flyer and Map)

Paulette Kissee from the Alzheimer’s Assn. will be available for two Care Consultations at the County Service Building, 1717 Taylor Avenue on Oct. 13th at 1:45 and 2:45 PM.  Call Felicia Elias 638-6480 for appt.
To receive expert information and advice from the Alzheimer’s Assn. at ANYTIME, call the helpline:  1-800-272-3900.

       Marilyn Joyce, BA, RN, Caregiver Support Specialist
Racine County Aging and Disability Resource Center
1717 Taylor Avenue	         Phone:  262-638-6678
Racine, WI  53403                 Fax:  262-638-6378