What is Caregiving?

Caregiving is provided by a diverse group of individuals to patients who can no longer manage their Activities of Daily Living (ADLs) or suffering from a cognitive decline. It can be temporary or last longer until the individual succumbs to their decline which can be years later.

Caregiving requires more than just physical work. It means being the patient’s health advocate, speaking up for patient’s needs and goals of care with your medical team. It also means you understand what the patient’s wishes are and learning what it means to die with dignity. Caregiving is extremely stressful and challenging work and most people do not have formal training or education on how to perform these tasks.

Most caregivers are uncomfortable with the type of work and discussions they are performing. They however understand that what they do is needed for their loved one and accept and adapt to ever changing needs of the patient. Caregivers are foced to deal with change and learn to balance the needs of the patient as well as their own personal needs. Education is the key to alleviating anxiety and improving overall patient and caregiver satisfaction. After all, would you not want to know what to do if something happened? This reason is why as an organization, Lenity Light Hospice is committed to education.

Caregiving is stressful and will challenge you in ways you did not think were possible. It will drain you of your energy and may strain your relationships with others as they feel they are being neglected. Finances may become a problem and emotions will always be involved leading to tension between the caregiver and other family/friends. It can lead to loneliness and isolation. Caregivers silently do what they must because of the immense love they possess while grieving silently for the loss of independence in their own lives. It is not uncommon to see caregivers struggling with depression, sadness and pain as they hang on to hopes for normalcy of their own lives.

These feelings of loneliness and depression are perfectly normal. Understand you are not alone and you are loved and appreciated for what you do. We are here with you every step of the way. When you self reflect you will see the joy and immense fulfillment that caregiving provides as you obtain new milestones and develop deep connections with family and with the patient.

Please review our caregiver resources for helpful downloads and ideas to help you during this difficult time.

Providing care for a loved one entering hospice can be challenging and we are here to help you.  Caring for a loved one involves so much more than just doing practical tasks of helping your loved one.  It is also about letting those you care about know how you feel and showing your love and commitment through your actions and words.  Our goal remains to try to promote an atmosphere of peaceful acceptance.  This process can be draining, and as caregivers, we all need a little support every once in a while.  This support allows you as the caregiver to do the important work of providing comfort and peace to those around you and to your loved one.

We are professionals who are experts in managing patients during this difficult time, and have the tools to teach you how you can help your loved one to be at peace and be comfortable. You don’t need to feel like you are alone, or don’t know what to do. We will teach you. We will be there for you and your loved one. We will get through this together.

Your loved one may speak of sadness and fear of pain or death.  Your presence and courage to face this situation with them will lessen your loved one’s anxiety and fear.

Many patients find support from local clergy is very helpful in coping with these issues. If you need assistance finding support, let us know. We also have spiritual counselors available for your and your loved one’s needs.

Expect confusion, and heightened/decreased level of consciousness. This is part of the normal dying process and is perfectly normal.

Expect a change in appetite.  Your loved one may not eat or drink as they once did.   This is part of the normal dying process.  Discuss with your Lenity Light Hospice team if you have any concerns or questions.

Understand Silence – Your loved one may have a weaker voice.  They may talk less and avoid long conversations.  This is normal part of the dying process.

Get help with tasks from family and friends.  The Lenity Light Hospice aide will also be available to help assist with aspects of care.

Take care of yourself – Being a caregiver requires incredible stamina and strength.   You are under incredible physical and emotional stress.  You need to care for yourself so you can be at your best when you provide care to your loved one.  Respite services exist to allow caregivers to receive breaks.  Talk to your Lenity Light Hospice team about options.