Family Caregivers – Advocates and Worriers for Seniors’ Well-Being

Most family caregivers have taken their senior loved ones to the emergency room, hospital or routine preventive procedures.

We wait at the bedside when they are hospitalized for one reason or another.

We also know the names of the staff at the doctor’s office and in the ER due to the frequency of our visits.

Even when they undergo a routine test, family caregivers are sitting on the edge of their seats for a number of reasons. We worry about how they will handle it, if they are scared or uncomfortable, how long it will take, and what the outcome might be.

It usually isn’t a pleasant experience for either person. At some point we will need to care for them but also need care for ourselves.

What if we are the ones who need medical attention?

Family Caregivers Worry

Family caregivers might worry more about the status of their senior loved ones when they are sick, hospitalized or even just spending the day at the medical facility for a routine screening procedure than they do when they need care themselves.

Our time spent getting our own healthcare in the system is time away from the one who needs our help the most. At least that’s the way we see it.

While we are being treated, we think about what might happen if…

…we need medical care immediately without prior warning

…we will be off our feet for a prolonged time and can’t care for our loved ones

…we can’t work due to illness

…there is no one who can fill in for us if we are sick or hospitalized

…a situation arises that could change the way our life goes day in and day out

Family Caregiver as Patient

What if you become the patient, if you need the doctor or hospital, have an injury requiring immediate treatment or have an adverse medication effect?

Have you made a plan for what will happen if you aren’t available for a period of time? Is there a ‘Plan B’ for who can complete daily tasks for your senior loved one?

Is there someone who can be with you if you are the one seeking treatment and need support?

It is important to build a strong network of people who can not only help your senior loved one but you, too, if you need someone to lean on. You need to be able to have the opportunity to recover quickly so that you can provide care to your senior.

If you aren’t strong enough, who will care for those for whom you care?

Caregiver as Patient Advocate

When your senior is undergoing medical care, many emotions can surface for family caregivers.

It becomes your job to be the advocate for your senior loved ones.

Family caregivers easily become mother hens, feeling as though we need to not only support but protect our loved ones. You want them to get well and be well cared for by the medical professionals in whom you have entrusted your beloved family member.

Sometimes, when we are in that position, it isn’t easy to trust others. We look around and wonder why things take so long or staff is too busy to help us in what we believe is a timely manner.

We want things to go well but we also want to be informed, dealt with professionally and treated with dignity in the same way we want our senior loved ones to be.

Family caregivers want to be team members – not antagonists – to those in healthcare.

However, that can be hard to achieve when we are the ones sitting at the bedside.

We can see how overworked the staff appear, which makes us wonder if mistakes can be made when there is an overwhelming amount of work for them to do and many players in a complex puzzle that must communicate well with each other before our seniors (and ourselves) get optimal treatment. One department needs to know what the other is doing and when a problem exists that could delay treatment. This information then should be passed along to the patient and caregiver so that our expectations can match our treatment.

Communication is Important

If we are scheduled for a procedure at one time and things are delayed two hours, don’t make us wait in the dark for someone to come on time — we will definitely be disappointed and frustrated.

Communicate with us so that our expectations meet our care delivery. We can handle a delay when we are informed. It is when we are not kept abreast of changes that our frustration and disappointment builds.

Sitting at the bedside gives a caregiver time to think about what they expect, what is acceptable and what isn’t when it comes to the care their seniors and all their family members receive when they require medical care.

Our expectations aren’t just about the hospital but also from the doctor and her office team, ancillary staff including lab and radiology staff, outpatient surgery staff, housekeeping staff, food service staff, and other support staff our seniors may encounter during care.

Thoughts as We Wait

We wonder as we wait and wait for something to happen in the healthcare system.

• What do we expect from the healthcare system and medical team?

• How do we want our loved one to be treated?

• Can there be too much communication or clearly explained information?

• What name should they call your senior – Mrs., Mr., dear, honey?

• What is timely treatment?

• How long should we have to wait when we have an appointment time?

• Will the healthcare team understand when our senior loved one has a cognitive impairment that might require special skills and consideration?

• Why is it our responsibility, not theirs, to track down medical codes billed erroneously to our insurance to avoid paying for what was preventive care covered under our medical insurance but billed as something else?

• Why do we have to fill out medical histories in different parts of the same system when all the questions have been answered more than once and should be in the electronic medical record they share?

• Do they ever clean the handrails of the beds because you watch them changing the sheet between outpatient procedures but no one ever cleans the rest of the bed?

• How do they protect your privacy when you can hear every word between doctors, nurses, anesthesiologists, patients and family members throughout the outpatient and emergency room units?

• How do we know if we got the right strength of prescription medications from the pharmacy – we can’t read the handwriting on the prescriptions?

• Are they all washing their hands before they give care?

• What does my senior do to get help when the nurse call light is hanging on the wall behind the bed instead of within their reach?

• What can we do to help our loved ones, we don’t want to be helpless?

Ensuring Our Loved Ones are Treated Right

Is it an unachievable dream to be treated right, fairly, promptly, professionally or age appropriately?

Do we have to appear to be angry or unreasonable because we have to bother the staff for things that should happen without us asking?

We know the staff is working hard but our senior loved ones are vulnerable. They may not be able to ask for help themselves, may not be able to hear the instructions given, or may be scared.

Understanding and patience are hard to come by when everyone is calling for help.

Caregivers can appreciate this but just want to feel that their needs are being met so they can ensure their senior loved ones recover quickly and get back home.

Remembering how it feels to be on both sides of the bed – giving and receiving care – will help us all feel better about being treated by the healthcare team.

We don’t seem to be able to avoid needing help all the time, but could try to empathize with each of our unique perspectives.