LOOIE AND CANCER

I held Looie's Power of Attorney for the last twenty-two years. He also appointed me his Executrix and Personal Representative. I distinctly remember our conversation in 1978 because both of us were teaching at that time, we each were single and we were living independent lives.
Looie asked me if I would consider handling his affairs and medical needs if he could no longer be capable to remain independent. I asked him why he chose me. His answer was straightforward and with that darling smile of his he said, "Because you learned caring for others from the best, your mother Jean. Besides, Dick has Diane, and I choose you!"
Mom, a Registered Nurse, was the Nursing Administrator for a large residential care facility in the Metro area, and she has been the primary care giver for family members her entire marriage.

My first introduction to dying with dignity in the home was when my parents moved my maternal grandmother into our home. I was in high school at the time and my sister-in-law, Bobbie, was in Nursing School. With the guidance of Mom, Bobbie and I together walked through our first experience of home nursing and care giving. We quickly learned the importance of maintaining independence and dignity for loved ones who are no longer capable and will soon be passing on. We cared for my Grandmother for 18 months.

After cousin Dick's stroke, Looie would always ask me, "Remember our heart to heart in 1978 and how you promised to see to my desires and wishes, like Diane is doing for Dick, if something like this would ever happen to me?" How could anyone ever forget a promise to Looie?

On March 15, 2000, Looie called me at home and asked me to meet him in the emergency room alone. He explained little over the phone other than he was in for his annual Camp physical, bleeding internally, should be seen by a physician in the hospital at once and wanted to talk confidentially with me. My husband dropped me off at the hospital and I met Looie in the ER. We got him changed, settled in bed ready for tests and then we had our private talk at which point I made even more promises to Looie…
I then called my husband and parents to inform them to come meet us in the ER at the hospital. After a battery of tests, we learned that Looie had advanced cancer of the esophagus and stomach. Our next move was to determine what Looie wanted in the way of treatments, care, financial assistance, living arrangements and overall sense of well being.

The doctors on our team were wonderful. Straightforward and no holds barred. Looie explained he was weary, thought he was prepared and thought he may desire not having any treatments at all. He asked the primary care physician what would happen if he chose to do nothing.
"If you choose to do nothing, you will only have six weeks left."
Looie sat up and took notice on this, asking for more options. Our team of doctors, Looie, my husband and I finally determined the best options to fulfill Looie's desires and comfort level and then we moved on to phase two, radiation treatments.

Radiation treatments would lend the hope of six more months by reducing the tumor at the base of the esophagus, allowing nutrients to pass into the stomach. Looie had already lost several pounds, was suffering from fatigue and loss of blood. The radiation would also seal the tumor so there would be no more internal bleeding and Looie could begin his food supplement program.

Looie wanted to return to Camp for one last summer more than anything in the world, but found internal conflict with the idea of returning to camp being so sick. He wrote the Camp Director a letter saying he would not be returning. Our family supported his choice, however my husband, brother Skip and I urged him to return reminding him this would help to promote the healing process of the radiation treatments.
Looie rebounded, was able to take in nourishment, felt energetic and contacted the Camp Director again to discuss returning to Camp.
This was very important to Looie because from 1942 to 1999 there were only two years when there was not a Falling Branch on the Staff (when Looie was taking care of his parents and Dick was serving in The United States Army.)
Looie was a happy man returning to Camp 2000 - at peace with himself, his choice, the time allowed to him and at peace with God.

Before he left for Camp, Looie asked John and I if we would be coming down with a good old fashioned Camp Dinner for Visitor's Sunday this year, telling us of the days available and the particular day we should choose and why we will be choosing that day.
On June 25, 2000, we packed up the car, swung by to pick up Mom and Dad (Jean and Ed) and left to have the best Camp dinner ever with our cousin.

Looie returned home on the sixth of July to make an appointment with his primary care physician. He noticed changes, suffered chronic fatigue and needed to talk things out with the family. He had a Cat Scan that revealed the war of cancer was raging in his body infiltrating the lymph nodes, liver and lungs. He returned to Camp to collect his personal items and moved back home.

On the fifteenth of July we had our usual Saturday night family dinner at the folks house. Looie explained the Hospice program his doctor had been urging him to consider stating he couldn't move forward with this unless someone signed this Hospice contract with him. My husband, John, and I signed the contract for me to be his Primary Care Giver so he could die in the room in which he was born 76 years ago.

My next step was to pull it altogether on Monday, July 17, 2000, so Looie's desires and wishes would be met in a dignified manner.
My team consisted of Carondelet Hospice of St. Mary's Hospital in Blue Springs, Cancer Action in Independence, MO and Looie's cousins and friends as Secondary Care Givers.

Carondelet Hospice is a comprehensive source of services and support systems to help people facing a life-threatening illness live as fully, independently and comfortably as possible. Carondelet Hospice also offers family guidance and encouragement in responding to the patient's needs.
Looie's physician lead the hospice team which included a registered nurse and social worker to work directly with Looie, me and my team of Secondary Care Givers.
Others that would be added to the Hospice team included a home health aide, chaplain, volunteer and bereavement counselor as appropriate for family needs and wishes.
Should you have need for this in your life, it will comfort you to know that you and your family are not alone during this difficult time. A medical professional will answer your call 24 hours a day. For more information about Carondelet Hospice, ask your physician or call 816-655-5278 in Blue Springs or 816-943-2050 in Kansas City.

If you or a member of your family has cancer and you need information, help with prescriptions or knowledgeable people to tell you how to deal with some of your cancer-related problems, where do you go if you don't have Hospice? Cancer Action is a wonderful place to begin! Cancer Action helps cancer victims across the metro area with everything from information to medical equipment. This program was introduced to us by Laura, our Carondelet Hospice nurse.
Their mission is simple: Cancer Action is an independent non-profit agency serving the Greater Kansas City area. As a caring community of professionals and volunteers, we share a dedication to:
1.) Increase the quality of life of cancer patients and their caregivers 2.) Provide direct client services through professional and volunteer efforts 3.) Promote education and early detection

Cancer Action provides the following services:
Transportation to Treatments - Food Supplements - Companion Sitters/Phone Friends - Assistance with Medicines - Dressings and Bed Savers - Comfort Items - Hospital Bed Sheets - Support Groups - Counseling and Information - Donated Supplies - Hospital Equipment - Ostomy Appliances - Christmas Gifts - Cancer Related Films and Videos - Hemoccult Tests.

For more information or assistance to you and your family, please call 816-350-8881.
Looie requested that in lieu of flowers at his funeral, donations be made in his name to Cancer Action. Cancer Action is a United Way agency and your tax deductible donation assures the ongoing quality of free services for which Cancer Action is known. Cancer Action does not utilize government funding, reimbursement from insurance companies, Medicare or Medicaid. It is totally supported through local dollars and is able to help over 2,200 clients each year through excellent management of the funding it receives.

The Secondary Care Givers on my team were cousins of Looie; Ed and Jean Chandler - Martha, Susan and Harold Voss - John Minor Purcell, and Looie's loving neighbors and friends for 48 years, Don and Phyllis Reed.
Without this wonderful team, Looie would not have been able to accomplish what he wanted to accomplish most and last. To die with dignity, respect, independence, comfort and do it all in his own home.

Visiting Nurses' hours were from 9 AM to 5 PM so Mom, John and I took the night shift (7:00 PM to 9:00 AM).
Martha, Susan and Harold stayed with Looie during the day and Dad, along with Don and Phyllis, visited with him during the late afternoon and early evening hours. Don, John and I were also on call 24 hours a day.

Looie died one week after he, John and I signed the Hospice contract. His passing on July 22, 2000 was swift, gentle and in the presence of family members. And, yes. Looie died with a smile on his face…

The first important step is to define the needs of the patient and the caregiver(s).
Some important questions to consider about the patient are:
1.) What can they do for themselves?
2.) With what will they need your help?
3.) Are they able to prepare simple meals?
4.) Are they able to maintain the daily chores: i.e., laundry, cleaning?
5.) Are they able to live on their own?
And questions about the caregiver(s) are:
6.) What are your limitations?
7.) How much time are you willing to devote to this situation?
8.) What do YOU need help with?

Other helpful hints to remember are that you will want to determine how to prioritize individual needs for your loved one, yourself and your care giving team.
Find out what you as the "Care Giver" should expect.
Learn and resolve the financial considerations by discussing these fully with your loved one.
Find out what documents and directives have been set up and where they are located.
Always keep track of medications, dosing, times, amounts and functions of each medication.

The two most important things you as a caregiver can do are:
(a) Take time out to care for yourself and
(b) get help from others.

Care giving requires a large commitment of time, perhaps all of the extra time you have for yourself. When this happens, problems may develop. The best way to prevent the depression and frustration that could cause caregiver burnout is to hold back some time for yourself.

It takes tremendous stamina, patience and love to be the caregiver of a person whose mind and body begins to no longer function normally.
All caregivers must recognize that they, themselves, are normal people with abnormal stresses. Few are strong enough to withstand this trial without painful emotions. The Care Giver's Bill of Rights is sure to help you and your team...