When your seriously ill loved one comes home from the hospital, they become your loved one and your patient. Suddenly, you assume caregiving responsibility for a hospice patient who is very important to you.
The services of the hospice team will provide caregiver support, but you must step into the role as the day-to-day, primary caregiver. Your hospice nurse, aide, doctor, social worker, chaplain and volunteer will supplement the care you provide to your loved one, and the team can be reached any time of day or night for help.
Remember: no one can do it for you, but you don’t have to do it alone. The hospice team can be reached any time during the night or day for help. Yes, you will provide most of your loved one’s care. But be honest: you wouldn’t want it any other way.
1. What does it mean to be a caregiver?
When a patient is suffering from a terminal illness or life-limiting situation, and can no longer care for themselves, it generally falls on a family member or loved one to provide continual daily care for the patient.
Some patients may still be able to perform tasks like showering or brushing their teeth, yet cannot remember to take medications. Some patients may need help with everything, including help getting out of chairs or may need oxygen from a machine.
Being a caregiver means you have taken on the additional responsibility of helping the patient with these things. It is a big responsibility, but most people wouldn’t have it any other way. The duties may be demanding, but knowing you were there for someone at their most vulnerable time of life can be a source of comfort later.
2. What are the basics of being a primary caregiver?
Once you assume the responsibility of becoming a loved one’s primary caregiver, you will find much of your day-to-day life now revolves around that person’s care. They now become, in a sense, your patient, even though you’re not a medical professional. It’s also a patient who you love dearly and want to comfort.
Caregiving will require patience in many areas. Patients with extreme physical, mental or emotional requirements can be a tremendous burden. Financial, legal, social, family and other issues can take a heavy toll. Just as it’s not easy to raise a child, it’s not easy to help usher a loved one through the final stages of life.
Hospice care in home is designed to help support the primary caregiver in multiple ways, and ease the burden as much as possible. No one can do it for you, but you don’t have to do it alone.
3. How does hospice care help a caregiver?
The hospice team structure helps coordinate multiple visits to a patient each week. In addition to providing necessary medical supervision, check-ups and advice, these visits also help the caregiver know they are not alone.
The hospice care team also provides support that most people could never manage on their own. No one can be a trained chaplain, social worker, nurse, doctor and bereavement counselor at one time. By bringing the different disciplines (and others when needed) together, the hospice care team provides different layers of support that no one person could.
This supplemental care is centrally coordinated, so that it’s not up to the primary caregiver to worry about scheduling. The hospice team stays in touch and keeps you updated, and is always ready to answer your questions.
No one will know better than you how the patient does each day and the hospice team will ask for your input as the disease progresses.
4. What if there’s a problem in the middle of the night and I don’t know what to do?
ProCare Hospice is always available, 24/7. Call 702-380-8300, day or night with your questions. You can always speak to a clinician who can give advice or send a clinician to you if needed.
5. What if my loved one needs round-the-clock care?
If a patient’s pain and symptoms can no longer be managed at home, there are options. Some patients can be taken to a contracted bed in a hospital or other facility until symptoms can be resolved or managed. ProCare Hospice’s new, 14-bed inpatient unit can bring patients into a home-like, comfortable setting if needed, or if the disease progression has reached a point the patient needs 24-hour care.
6. How will ProCare help me as a caregiver?
Being a caregiver isn’t easy. As we say, no one can do it for you. But our team structure, our combined decades of hospice care knowledge and our supportive and compassionate staff, have created a structure to make sure that not only are the patient’s needs are met, but we help support the family and loved ones as well.Why? We are family-owned and operated. We celebrate families of all kinds. We know how important family is, and we are honored when we can care for your family with our family.
7. What are the responsibilities of a primary caregiver?
Being a loved one’s primary caregiver is a tremendous responsibility. Most people are unsure of what actually goes into being a caregiver. One of the biggest things to remember is, while no one can do it for you, you are not alone. The hospice care team is always a phone call away to answer specific questions, help guide you and make sure your loved one is comfortable.
Here are some of the responsibilities most primary caregivers have:
Personal care of the patient — Personal care mainly revolves around the basic hygiene activities that we take for granted when we are healthy. Personal care includes helping the patient stay clean and comfortable. As a patient’s primary caregiver, you can expect to assist with bathing and going to the bathroom, applying lotion to dry skin, keeping teeth clean, shaving, washing and combing their hair, providing clean clothes and bed linens and making sure the nails on their hands and feet are trimmed.
While some of this may sound basic, or not as critical as managing medicine, the psychological effects of keeping a patient clean and hygienic are powerful. There are no small jobs as a caregiver, because they all fold into making the patient comfortable in multiple ways.
Medications — The primary caregiver is responsible for making sure the patient’s medications are given at the proper dosage and time. It will be up to the primary caregiver to make sure prescriptions get filled, medicines are stored safely and only provided to a patient at the right time. Medications include anything from pills, to syrups, patches or injections.
It will be helpful to the hospice care team to note any changes, reactions, etc. the patient may have to certain medications, in order to adjust dosages or prescriptions as needed, so your loved one remains as comfortable as possible.
Basic medical care — No one expects a primary caregiver to do what a nurse does. However, your loved one and you will be more comfortable and confident if you can provide basic medical care to the patient. This can include cleaning and changing the bandages on pressure ulcers, taking the patient’s temperature, applying ice or heat or taking blood pressure readings.
None of these tasks are beyond most people’s capabilities. Depending on your loved one’s condition, you may also learn additional basic skills to help the patient remain calm and comfortable.
Medical equipment — It may seem daunting to learn to operate what doctors and nurses call DME, or durable medical equipment. However, basic medical equipment like oxygen machines, wheelchairs, lifts and hospital beds, are relatively simple to use and operate safely. A primary caregiver should always be the one to manage medical equipment, and not the patient or a friend or family member not used to the equipment.
8. How does hospice home care help the primary caregiver?
No one can do it all. The hospice home care team is dedicated to supporting the primary caregiver during their journey with their loved one. ProCare Hospice is family-owned and operated. We celebrate all kinds of families and we know that the best care comes from a family. That’s why we are honored to care for your family with our family.
ProCare Hospice is available day or night to answer your caregiver questions. Call 702-380-8300 and you will be connected to a caring clinical advisor, who can give you advice or send a clinician out as needed.
It’s a challenging but worth while journey to care for a loved one and we are here to help.