You thought you could do this at home. You might have even promised to take care of your loved one at home throughout the hospice journey.
But the situation has changed, and despite using all the resources available in this blog and drawing on the expertise of your hospice team, it’s not working.
You’ve thought of changing the venue of care from your home to a skilled nursing facility or inpatient hospice. You might even feel guilty for those thoughts.
Instead, here are some principles to consider as you review the options of care for your loved one:
You must practice self care in order to provide adequate care for others. This is why the airline attendant instructs you to “secure your own oxygen mask BEFORE helping children or others needing assistance”. We may believe we can bear any level of stress or effort needed to provide care at home because it is just for a short time, and then we will rest.
The truth is that we never know how long another will live and our energy is not unlimited. Just look at your loved one. They may need total care. That reminds us that all of us need care and assistance. Some days more than others. Just as a patient may decline quickly under the pressure of a disease, caregivers may also decline from the daily emotional and physical toll required by extensive caregiving responsibilities over an extended period of time.
No one is able to know what is best for the middle or end of the dying process at the beginning of the hospice journey. Even a last request may unknowingly be really the next to last request. Every decision is based on desires, resources, abilities, and needs. All of these things change. A patient who finds most comfort in the familiarity of home at the beginning of the journey may find greater comfort in pain management available only in a hospital setting with 24/7 observation.
We often hear a patient who wishes to be at home also expressing a desire to “not be a burden” to their family. Since we are all, at times, an inconvenience to those we love, the desire is actually to not become an extreme or detrimental burden to those we love. We need to honor the wishes of a patient who may become uncomfortable with the amount of care needed and physical/emotional cost to their family (or ability of the family) to provide care at home.
Be sure that providing care at home is not for the benefit of the caregiver at the expense of the patient.
Respect the assistance of medical professionals. Be willing to receive help that seems to be appropriate or necessary. There is no need to be the sole provider of care at the end of life. A team approach creates a greater range of options and resources for coping with the tasks of caregiving at the end of life.
Remember that making use of a hospice inpatient unit does not require giving up on all the advantages of homecare. The most important advantage of homecare is the people in your home. You can provide the same spiritual support, familiar face, voice and touch in a hospital setting that you do at home.
You will also be able to determine the amount of time your loved one spends away from home. By spending some time in a hospital setting, both you and your loved one will be able to make future choices based on experience. There may come a time when the patient is not as concerned or aware of his or her surroundings. As a person nears the end of life it is common to give less attention to details of the physical realm and more awareness of spiritual realities.
Be sure to practice self-care as a caregiver, balancing your own needs with those of your loved one.
To read Part 1 of this post, follow this link.
Ron has been involved in ministry to people for more than 30 years. As a chaplain with Holy Redeemer Hospice, he hears the life stories of patients daily and faces end-of-life challenges with each one. Along with being a member of the ethics committee, regularly presiding at memorial services and teaching hospice professionals, his primary joy comes in seeing the lessons of life revealed in so many lives rich with memories and questions.
Part of the perspective he brings to the hospice experience is placing this life event in the context of an entire life and generation of family history. As a chaplain, Ron works from a strong belief that the spiritual dynamics create a sacred space for hope and personal growth until the last breath and beyond, for both patients and caregivers. Honoring each individual path toward the end of life, he believes the work caregivers do and the reward they receive is more than physical. As a hospice chaplain, he considers himself a companion on that path.
On his own life’s path, Ron has been the clinical director of a residential addiction center, a community restorative justice organization, and pastoral staff. In addition to his work with hospice patients, Ron is a licensed marriage and family therapist working with families at all stages of the life cycle. This particular practice is enhanced by his own experience of nearly four decades of marriage, two daughters, and four grandchildren.