April 3, 2000
Care Giving - Advice by Lee Law
In memorium Carol Law,
May 23, 1947 to March 28, 2000
I see the journey broken down into three parts where the care giver is concerned.
The First Stage
is cancer diagnosis and chemo treatments and surgeries and hospital visits. What help does the patient need? For instance, I did the laundry and fixed supper and generally cleaned the house and acted as host when family came to visit or friends and talked with my wife as she needed... I did the shopping when she was down from the chemo. I was always careful to ask her what she wanted to eat. Have some comfort foods available from frozen juice bars to chocolate. Favorite little things that the patient likes. After her first round of chemo she got her strength back and went back to work and I still did the laundry and house keeping and the meals so that she could rest. I went with her to every appointment and chemo treatment. and was there for each test, surgery and outpatient procedures except one which her sister went with her.
It was very important to the both of us because it affected us both in a big way and our life styles. We went every together and did a lot of things together. I am always there for her. I think from the very beginning she has wanted quality of life but others want to be aggressive in the treatment of their cancers. I think as care givers, we can advise but not make final choices for the patient. Caregivers know the drill: every two or three months to the docs, blood test or scan or mri's and then the wait for results while anxieties grow to new heights. They need our reassurances, and positive out-looks. Once the report is in, there is an adjustment period. I might add that a caregiver should get all copies of the reports.
The routine will change little, as long as the patient is stable and there is no progression in the disease. Children will require different information according to understanding level. Maturity also varies from child to child and counseling may be required to help them through this traumatic time. Offer a lot of "I love you", assurance and hugs. There is a grieving process, and it is healthy, but not easy. There are books that can help. Yet we are all different and approach grief in different ways. But to know is less frightening than to simply sense something is not right...
Metastatic cancer can be part of the first stage and melds into the Second Stage
Depending upon the patient's ability of self-care, Quality of life can be quite good after the starting the second stage of treatment, various options even ...
Most who work will quit work and go on SSDI (Social Security Disability Insurance). They automatically qualify at this stage of the journey.
Get all of the info that you can. The more, the better, much of the drill is the same as before, Drs., appointments, tests, waiting for the results. As the disease progresses the patient will require more and more care, as energies get less and less. Fatigue is the enemy. Personal Hygiene and other needs will become more and more difficult.
A polinux shower head, a seat that can be used in the shower, Cleanliness is important. Have a clean, cheerful bedroom, much time will be spent there.
The Third Stage
is the Hospice stage, a full care situation. The disease has advanced to the stage where the patient is dying and requires more physical and emotional care. I would advise care givers to get hospice referrals from the oncologist, or local hospitals, medical social workers, or even the yellow pages of the phone books, amd visit more than one.
It is very important that they offer services to help the whole family, and not just the cancer patient. They should provide some health care and regular visits by a registered nurse, a social worker, a bereavement counselor and a chaplain.
Never be afraid to tell the patient that they will be missed. Do not be afraid to tell them of your love for them. Carry out any last wishes they may have, if you possibly can. A good attorney can help and should not be too expensive unless the issues are extremely complex.
Long term health care insurance can be a big help in hiring someone to help with light house keeping, cooking, physical care.
Screening the phone calls, paying the bills, running the household, supervising the children, setting up medications for the patient, hair care.
There are numerous little things which make the situtation more comfortable, You just need to play by ear. They will tell you. Many times they just need to be held and talked to in a gentle way. Diet is more of a problem at this time because the stomach does not seem to want the same old things. Lots of ginger ale and fruit juices and solid foods as tolerated. Stay away from the fried foods. They are hard to digest unless the patient can handle it.
Have the phone numbers of doctors, and hospice people in easy access. Do not be afraid to call them in times of stress, or if you have a question.
Most of all, remember, as primary care giver, you need to take care of yourself. If you don't you could become a worse medical case than the person you are taking care of... When you do some good things for yourself, you will be able to do some good things for the person you are caring for.