The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility does not vary according to the caregiver’s’ relationship, although the emotional toll may vary considerably. In the event that a terminal illness is involved, the caregiver also carries that additional burden, and he or she may be at risk of burnout.
Cancer Commons offers to share those burdens with you. The 501(C)3 non-profit has helped over 10,000 people with the many aspects of the caregiver burden.
Cancer Commons Offers One on One Support
The association’s oncology experts are available to U.S. residents who have been diagnosed with advanced cancer or to their caregivers. After managing to absorb the diagnosis, many questions will arise. ”Is this the best option?” “How do we proceed?” “Other than being treating the patient with this medication, what else can I do?”
Cancer Commons can be of assistance at this point by helping the patient and the care giver create a personalized plan. The plan will be based on the latest evidence-based scientific discoveries.
You’re Not Alone
The webinar: “You’re Not Alone” can be accessed from the following link: https://youtu.be/ejeDDNfAdX8
The second event in Cancer Commons’ Pat Looney Educational Series for Client Empowerment is Entitled: “You’re Not Alone-Validating the Caregiver Experience. The webinar leads off with a warm welcome from Shelley Frisbie, CFO and COO, and features Deb Christensen, MSN, APRN, AOCNS, OCN, Director of Patient Services, who introduces the series.
The main feature is an interview with caregivers who have assisted their parents, spouses, children, friends and other loved ones in all aspects of their illness, including end of life care. The caregivers discuss helping patients through their struggles with metastatic cancer.
Mel, the first caregiver to speak, prefers to call himself a spouse rather than a caregiver. He and his wife never anticipated that she would be the first to die. Mel said they were not prepared. He said that he went from being a bystander to being very involved. He mentioned how quickly decisions have to be made such as a change of medicine. Mel suggested that if you take care of yourself, you will perform better at your caregiver duties. He gives a “hats off” to cancer common for all the help he received.
Janet was a care giver for her 37 year old son. She also never anticipated that she would be in this position. Janet learned that if she did not take care of herself, she would not be able to take care of her family.
Jessica was caregiver for her wife. She said that she was not prepared to handle anything like this. She held her wife’s hand and assured her they would get through their journey together. Jessica also said she found it was better to accept help. She described how good it felt to sit down and be served dinner. Jessica said she learned to treat herself better and it gave her strength. She said caregivers should acknowledge having taken care of someone and give themselves credit for caring.
Mike said when his wife’s illness began, he was not her caregiver, but her partner. She was able to take care of herself. His role was to drive her to appointments until the disease began to take control. Then it took more and more of his time and his involvement.
Deb Christianson advised people to learn as much as possible about the “new language.” Deb says to prepare yourself with foundational knowledge. She emphasized that oncology is a new language. She also advised people to ask their oncologist about next generation sequencing of tumors. She explained that molecular tumor profiling looks at mutations within the tumor.
Deb said that she has seen patients and caregivers at meetings and immediately recognized their very high stress level. Cancer Commons helps people prepare a plan. She said that there is no doubt creating a plan will ease the stress level.
Mindy has an immunology background and was very helpful to her mother- in- law. She offered to perform any and all services within her scope of expertise. She also challenged her mother- in- law to fight the cancer. Mindy said she was grateful to be referred to Cancer Commons. She said that if you do not feel comfortable with the answers you are getting, get another opinion.
Sharon was caregiver for her niece. Her family was supportive, but they had never faced anything like this. They made a decision to work collectively. Sharon said that Cancer Commons was incredibly important in helping her family better understand the second opinion and the diagnosis of the tumor board. Cancer Commons helped them understand the differences and it made decisions so much easier.
Keith was a caregiver for his wife. He looked up clinical trials for people who had pancreatic cancer. He emphasized the importance of taking care of yourself. Keith said that when he needed someone to talk to, he talked to the Lord.
Deb Christianson suggests gathering a team and deciding what each member is most qualified to do. To start with what you know and then reach out to organizations like Cancer Commons.
Neeraj was caregiver for his wife. He recommends morning and evening meditation, breathing exercises and affirmation.
Janet said she finally had to let go and accept help. She was always independent. When friends offered to bring food or go to the grocery store she finally accepted their offer and admits that it felt good.
Deb Christianson suggests learning how to let go and embrace a few moments of normalcy. Take time with your friends and take time for yourself. Deb also said to make a point of releasing any guilt you may feel.
She suggests not waiting to get palliative care and home health services, and to ask for social and spiritual support. Ask questions. Have those difficult conversations with your loved one. Don’t try to do it alone. Take advantage of counselling services.
The end result will be that everyone involved feels confident that no stone has been left unturned.
About the Caregiver Burden
The National Institute of Health defines “caregiver burden” as the strain or load carried by an individual who is caring for a chronically ill, elderly, or disabled family member.
Each situation must be considered as unique as the illness itself. Some caregivers are paid professionals and highly skilled. Whereas a spouse is usually unprepared and emotionally involved. Eventually he or she will feel the strain of caring for a terminally ill husband or wife.
It is suggested that the qualities of a “great caregiver” are that he or she must be patient, responsible, kind, and resourceful with a positive attitude. The patient must, at all times, be treated first and foremost as a human being, even if he or she is unable to communicate their feelings.
Caregivers sometimes have round the clock physical tasks and have an awesome, albeit stressful, role to fulfill.