The Decline

Today I feel it is important to discuss a factor in patient care which not only obviously affects the patient, but affects the caregiver as well.

This factor is the changing health of the patient — either physically, mentally, or emotionally, or any combination of these.  There are times when a patient’s health may change rapidly, as in the case of a stroke.  But often the caregiver is witness to a slower decline of a patient’s health, such as in dementia or Alzheimer’s disease.  Awareness of the health decline is stressful for both patient and caregiver.  Because this blog is essentially for the caregiver, I will focus the discussion of this topic in terms of the caregiver.

Naturally as a patient’s health declines, there will be a need for increased care, placing an increased burden upon the caregiver.  Necessity dictates the caregiver must provide more physical care for the patient as the patient is able to do less for herself/himself.  The caregiver is also dealing with the patient’s emotions surrounding the fact of her/his declining health, as well as dealing with your own emotions as the caregiver.  It is during this time that self-care for the caregiver is of utmost importance.

As a caregiver, I tended to stay with my patients for years – 19 years with one, 17 years with another (these were simultaneously), 13 years with another.  I cannot begin to explain how I felt witnessing each of these patients decline in health, but I will try to give an overview.

As a patient’s health declines over time, or even suddenly, the caregiver may experience feelings of helplessness, or fear, or anger, or guilt, or sadness – usually all of them at one time or another.

The caregiver also begins to walk through grief.  Speaking for my own situations, I grieved who the person once was, before the decline, knowing that is was unlikely the patient would ever return to the point of health they were in when I first met them.  As an empathic woman, I also grieved for the pain or mental torment that the patient was having to walk through; this is extremely difficult to witness.  And I grieved the impending loss of this patient I loved, not knowing when that loss would occur but knowing that it was coming.

The caregiver begins to walk through a form of grief and loss of the patient, even though the patient is still living.  We walk through the denial, the anger, the sadness, and we try to come into acceptance of how conditions are now, rather than looking at the past or the future.

For myself, it was vitally important that the patient did not know the journey I was walking through with them.  I believed that would only place an extra burden upon the patient, and I refused to do that.  I tried to make it my job to lessen the patient’s burdens, whenever and however possible.

Therefore, this is where the self-care for the caregiver is vital!  Because the patient requires more of your time and because you are carrying extra burdens, it is vitally essential that you, as a caregiver, practice every category of self-care that you possibly can at this time.  The caregiver must eat balanced meals, get plenty of sleep, exercise, ask for help, connect spiritually and/or practice relaxation techniques, and, particularly. seek counsel.  Do not ignore the feelings of grief!  Talk with a trusted friend, family member, or pastor; seek professional help if necessary, join an online support group or attend a local support group.

A patient’s health decline should not be filled with sadness and negativity.  Make the most out of each day!  Remember to laugh and reminisce with the patient.  Find things which bring joy during the day and gratitude at the day’s end.

God bless you in your journey!  It is not always easy, but it is filled with reward.