Family Caregivers: Important Information Keepers and Potential Healthcare Agents

Family caregivers fill important roles in assuring the health and safety of their loved ones. I was the caregiver of my mother for many years as she faced increasingly difficult health challenges during her final 10 years of life. My husband has been the caregiver of his mother in various capacities since the death of his father two decades ago.

Caregiving for my mother-in-law

Currently, my husband and I jointly take care of his mother and her needs in various ways. We do not provide assistance with completing activities of daily living, but we do help to manage her health, medical care, and finances. Doing each of these things has been made much more difficult since she lives in an assisted living facility that we are not allowed to visit due to current restrictions.

I have taken my mother-in-law (MIL) to almost every medical appointment she has had in the past three or more years. I know her current and past medical history inside and out. The continuity provided by having a family member attend medical appointments is vital in ensuring that nothing gets overlooked or misinterpreted. After almost every visit, my MIL and I have a debrief moment where we make sure that she understands everything that was discussed because, sometimes, she doesn’t clearly hear the doctor.

Family caregiving during COVID-19

There have been times my husband and I have accompanied my mother-in-law to her appointments, but now with COVID-19 procedures in place, we don’t have that choice. Only one of us can accompany her to an appointment or the emergency room. In July, neither of us was allowed to help her get settled into the hospital when she was admitted directly from the ER. The hospital required the family to stay away for the first 48 hours, at which time results from a negative COVID-19 test might allow for one visitor per day for a brief period of time.

Increased frustration, decreased communication

It’s very frustrating to be kept away. There is so much vital information that might be overlooked if the family-caregiver-keeper-of-all-health-information isn’t able to provide that knowledge to the medical and healthcare staff. During my MIL’s recent hospitalization, her day nurse even refused to talk to me over the phone because I didn’t have power of attorney. As a result, it took three days before I could get someone to understand that my MIL has a history of developing pressure sores while in the hospital and requires a special mattress.

Actually, I think what happened was that my messages were disregarded and it wasn’t until a nurse or technician noticed skin breakdown beginning that my MIL received that much-needed special mattress. It’s tough to be the one who knows almost everything about the patient and to be the one who is left out in the cold.

Having a caregiver or care-partner

Someday I know that I will be the patient who needs surgery. Although my knees are doing well at the moment, they haven’t always felt that way. Osteoarthritis is taking its toll and I will need total knee replacements in the future.

My husband is my caregiver or care-partner as we say at home because we see each other as partners in taking care of our individual and collective needs. I manage my husband’s medications, order refills, and pick them up at the pharmacy. My husband keeps a keen eye out for when I need to slow down and rest. He can often detect trouble before I’m willing to admit that I need to change my activities lest I suffer the effects later.

Seeing the value of a support system

In considering the intimate level of knowledge I have of my MIL’s health conditions, it might be a good idea to begin to bring Rob to my own medical visits on a routine basis. I would like to know that there is someone else who has my back if I’m ever in a situation where I forget to tell someone a vital piece of information.

Even people who are doing well with their disease(s) — in my case rheumatoid arthritis, osteoarthritis, and multiple sclerosis, primarily — care-partner or caregiver who can help watch out for their best interests. If I have to be hospitalized anytime in the near future, I want my husband to know as much as I know about my health and to be able to fill in the details when I’m unable to.

Caregivers as healthcare proxies

To make this official, I need to assign a Healthcare Agent/Proxy at the very least. The form is very simple and only gets triggered if I’m unable to make healthcare decisions for myself.

If I want to document more details about my wishes, I should complete a much longer Advanced Directive. Then a copy of each completed and signed form should be given to the healthcare agent, family members, my doctors, the hospital, etc. Each state may have its own version of Advanced Directive documents, but they are often honored in other states.

Questions to consider

Do you have an Advanced Directive? If so, does your Healthcare Agent know all there is to know about your health and your wishes if you have made decisions about the care you wish to receive or not receive?

Please consider doing this. Having an Advanced Directive in place probably wouldn’t have made much difference in communicating with my MIL’s nurse during her recent hospitalization. But having signed Advanced Directives in place will help my husband if anything suddenly happens to his mother or myself and he finds himself in the positive to make some tough choices.

Be well,
Lisa

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