When someone you love receives a diagnosis of terminal illness, or is given a prognosis of limited life expectancy, life changes drastically for everyone involved – not just for the one who is ill. Someone who may have lived much of their life as the primary caregiver for others may now find themselves needing someone else to be the primary caregiver for them.
This can be a difficult adjustment for your loved one. It can be equally difficult for you if you are trying to arrange how to best provide for their daily care during end-of-life.
While navigating the non-stop waves of emotions that can overwhelm you and leave you drained, you still have to ensure that the increasing daily demands for the palliative care of your loved one are being met.
Who should be the primary caregiver for your loved one?
The question is, who will be responsible to provide the care your loved one needs? Should the care be provided by the spouse or another family member, or is it best to seek outside hospice care services?
There are many things to consider when trying to decide who the primary caregiver should be. While there may be different requirements related to the nature of the particular illness, we will cover some of the key considerations for choosing the best primary caregiver that apply in a majority of cases.
Should a family member be the primary caregiver during hospice care?
The primary caregiver during hospice care is often a family member or a close friend. There are other cases where an agency may be the best option. Ultimately, the decision comes down to what is best for the patient and their needs.
There are many reasons why a person may be inclined to take on the responsibility for this daily care and become the primary caregiver for the individual. It’s natural to want to help someone you love, especially if they once served as your primary caregiver, as in the case of a parent, grandparent, or even a spouse.
It is admirable to want to step up and serve the needs of a family member during such a difficult time. Depending on the nature of the illness and the extent of medical care required, a family member can provide a level of comfort and love that is incomparable.
The real question is, given the limited amount of time and other resources available, how can a family member provide the best care for their loved one during this process?
Here are 3 of the best ways:
- Be present – Very few people look back over their life and wish they had worked more hours or spent more time alone. Instead, they want to connect with those they love, enjoy conversation, and share memories.
If you can only be one thing, be present.
- Be open and honest – Often, when someone feels their time is short, they realize the importance of the remaining moments. They may abandon the tendency to “beat around the bush” and simply prefer to tackle difficult or uncomfortable subjects head-on.
Be open and honest. If it’s important to them, let it be important to you.
- Be available – This is another facet of being present. Being available means to be ready and willing to be present when needed. Your loved one has shifted into a different phase of life that likely views time and priorities much differently than your boss, for example.
Try to be available whenever possible. Be sure to let work, school, or other responsibilities know about the additional demands you are facing.
Should a hospice agency be the primary caregiver during hospice care?
We haven’t discussed the level of medical knowledge or training required. We also didn’t review specific care requirements for your situation. Some of the very best care that a loved one can provide has nothing to do with medical care. Often, choosing a hospice agency to serve these needs provides the freedom and opportunity for loved ones to simply be present, open, and available.
Depending on the level of care required, hospice agencies can provide trained caregivers who can provide quality care on a 24/7 basis. This may include helping with activities of daily living and managing medications and medical treatments. This option can provide peace of mind for both the patient and their family.
How respite care can benefit family caregivers
Being the primary caregiver for your loved one for end-of-life care can be physically, mentally, and emotionally draining. It is important to take care of yourself during this time. There are many resources available to help you cope with the challenges of caring for a hospice patient. You should also consider respite care from a reputable hospice care provider. Hospice respite care can provide you with a break from your caregiving duties, and can also help to ensure that your loved one receives the best possible care.