What Happens When Your Care Recipient Has a Serious Illness?

By Faith Unger, M.Ed.
CaregiverU Program Director

What happens to the caregiver role when the care recipient has a serious illness? Well, for starters there are a myriad of decisions to make, starting with the decision to take the person to an emergency room at the medical center, and that’s quickly followed up by making the decision on which medical center. Should proximity be the deciding factor or should it be familiarity? Familiarity usually also means where there is an established patient record.  These decisions need to be made quickly under great stress. Then once the person is at a medical facility, there are many testing options and care options.  All will be up to you, the caregiver.

When the care receiver is admitted to the hospital, the caregiver becomes communicator and advocate in chief. The caregiver is the person who knows the care receiver best—the strengths, the weaknesses, and what works best.  I recently experienced this situation, and one of my weaknesses was that I did not know much about the medical community and the processes and procedures therein.  I learned much from my experience and now want to help you learn those things so that perhaps you will have a smaller learning curve when you have the same situation.

The hospital to which my spouse was admitted, included a medical team attuned to the needs of a patient with dementia.  There were tools in place to keep him safe, such as a camera which talked to him and alerted the nurses to needs, and a bed with sensors to alert staff when he seemed to be doing something unsafe.  Gel mats were placed on both sides of the bed to cushion a fall in case he tried to get out of bed.  I found the medical staff attentive to his needs, when I expressed the needs—and that’s another example where I needed to be the chief communicator and advocate.  I know his non-verbal cues and behaviors that are his means of communication.

Though the medical team was very aware of the special needs, the non-medical staff at times needed to grow in their understanding. For example, a social worker communicated to my spouse that he would be transferred that day to a skilled nursing/rehab, but did not communicate that to me. I found out because there was a voice mail message that requested pants for him for the transfer. Communicating with him and expecting him to tell me just doesn’t happen. Likewise, at the nursing home one day he told me that a committee of three talked with him about discharge. He knew no details nor the identity of the committee members!

While at the hospital, my care receiver had numerous tests and procedures.  I observed other very alone older adults being brought by staff to the treatment or surgical area and left there until other staff could come to bring the person into the room—looking scared and acting out of that fear.  Seeing that, I determined that my person would not be left alone.  That then also became a part of my caregiving job that of staying close, reassuring, and interpreting the best I could. For one of the tests, responses would be needed from my spouse. I couldn’t go in for the test, but just before going in I did my best to explain what he would be requested to do.  The technician was impressed by my effort; no awe needed, it was just calling up my teaching experience!

One of the things for which I’m very grateful is that all the legal documents were in place. I could provide to the hospital a medical power of attorney and advance directives. When my spouse’s health began to look precarious, a chaplain visited with me go over advance directive information. She was relieved when I could simply give her a copy of the completed document. I was relieved to not make those decisions right then.

The hospital social worker coordinated the transfer of my spouse from hospital to nursing home. Discharge instructions were not communicated to me but were given to the nursing home because they needed it to continue care. I, however, felt a need to know the information because I felt a responsibility to see that those instructions were carried out.  At the nursing home, I spoke with the Director of Nursing and she kindly went thru the discharge packet, allowing me to ask questions as we went. She created a feeling of partnership with me. I also went to the admissions director to introduce myself and to be assured that the admissions paperwork would be properly explained to me.  The admissions director then introduced me to the social worker who was supportive.

Part of the hospital discharge instructions included physical therapy to increase strength and steadiness so he could progress from wheel chair to walker. After discovering that the therapists came early and left early, I started dropping by on the way to work to talk with them about his progress and how I could support their work in my evening visits. Those conversations were essential to good recovery!

My morning visits also often included talking with the wound care specialist for updates on that progress.  Once my morning visits became routine, the nursing staff would chat with me so that I was able to support their work with my husband.  Visits before and after work were brief and, usually, for business. Visits in the evening were for my spouse, helping him to do things and doing activities with him that he enjoyed.

One of the staff that I wish I had visited with early on was the person at the nursing home who communicated with Medicare and sent Medicare progress reports. This was the person heading up the committee of three that I mentioned earlier. As a discharge date was being determined and discharge plans being considered, the information would have been helpful to me in making home care plans. When it was communicated to me, it came as a surprise. It was a telephone call making the pronouncement and all had been decided at that point.  There was no discussion. I had three days to order my home and life for that transition. Three days may have been plenty if I had been prepared for the possibility, but it came as surprise news to me and I felt overwhelmed.

For me, it was the suddenness of things that was hard. I can deal much better with change if I know what’s coming. I was a neophyte in the hospital and nursing home world, and often did not know the key players or the processes. My old family doctor used to say that the gold rules. What he meant by that phrase was that whoever pays, makes the decisions—and communicates with specific staff in the process. In this situation it was Medicare paying for care.  Those specific staff members communicating with Medicare know the process, and I needed to better understand the processes so one I could prepare for the changes.

When my spouse left the nursing home, the discharge instructions included provisions for home based care thru Medicare.  He received that for the week end after his arrival home. On Monday when I took him to adult day care so I could return to work, the services stopped because day care is considered community based care, not home based.  Perhaps if I had been more aware of what care was being considered in the discharge, I could have gotten community based care included. Or, at least, I would have been aware of the limitations of home based care. I would have been more aware if I had been with my spouse when the committee of three met with him to discuss discharge—which, as his caregiver, I should have been! Lesson learned—speak up early and often about that fact!

The health crises has ended now and normal life has resumed. For that I am so grateful, and my appreciation is really to all the skilled professionals who cared for him.  The glitches I’ve mentioned are not meant to detract from all that he received, but, simply, lessons learned that I hope can help others.

Reflecting back to that time, I realize that my major feeling was one of huge responsibility. As a caregiver, it was my job to make see that good care was given and the right decisions were made. Whenever I felt the tears coming, I forced myself to set that aside and just make the choices that would heal and restore his health.  When his health returned, I took time for myself to connect with people who love and care about me. At that time I felt okay about leaving him in the care of others because his health was now restored.  That’s important. A caregiver can only set aside self-care during a limited period of time. A caregiver is human, not a super power.  It’s important to recognize that.

There are good people out there in the world, and it’s because of them that my care recipient is now well and able to celebrate the holidays with family.  Family tends to come together for funerals and weddings and other “state” occasions. Well, I’m so grateful that we came together not for a funeral, but for a family holiday celebration!   Life is good.

Faith Unger is the Program Director for CaregiverU at AGE of Central Texas, which offers free caregiving classes year-round throughout Williamson, Travis, Bastrop and Hays counties. For more information, visit http://www.CaregiverUcentx.org.

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