Caregivers Need Preparation

The more a caregiver knows about how to do things and what to expect, the better prepared they feel about facing what’s ahead when alone with the one needing care. When healthcare professionals send a patient home for a family member to provide care, they don’t expect expert performance. However, I don’t think they understand how the gap in background clinical knowledge between family caregivers and healthcare professionals impacts the understanding of training provided. The terminology used, the assumptions made, and standard hospital-based procedures reflect the lack of insight into healthcare professionals’ understanding of the needs of family caregivers who must take over providing the nursing role immediately upon leaving the hospital.

Care at Home is More Complex

A report co-sponsored by AARP and the National Alliance for Caregiving found that since 2015 a significant increase occurred in the complexity and level of care required to care for patients sent home to complete recovery. Patients needing long-term care rose from 59% to 63%, Memory conditions rose from 26% to 32%, and mental health problems from 21% to 27%. Short-term conditions correspondingly fell from 35% to 30%.

As a result of the above, caregivers showed a corresponding rise in declining health. One in five caregivers (21%) rated their health status as fair in 2020, while only 17% did so in 2015. Those who rated their health as excellent or very good declined from 48% to 41% during the same period.

Tasks Required are the Same as Hospital Procedures

With the increase in family members’ complicated care, caregivers must learn how to manage IV equipment, monitor respirators, provide home dialysis, put in tubes, and take them out again. Yet, hospital and home care expectations seem almost the same at times.

Caregiving is a 24/7 Job

Though family caregivers become semi-experts after many weeks of performing homecare duties, they initially feel overwhelmed and alone. Home health agencies provide fantastic support, but home health visits last maybe an hour and a half for a complex visit—usually only an hour. After that hour, the family manages alone. If a problem develops, they “wing it” until someone calls them back.

Family members lack professional training as caregivers. When learning a new skill, it helps to have a coach or instructor available to provide feedback and support. Caregivers need someplace to go where they can learn how to adapt a situation to the home environment. Just knowing someone else understands their problem helps provide reassurance and peace. That’s the purpose of this website.

Throughout this website, you can find information on how to do things. Sometimes it’s information about how to perform the treatment, details about medical conditions, identifying warning signs of danger, information on treatments, medications, products that work, what to do, and what not to do. I’ve tried to present covered topics I thought might help a new caregiver with limited healthcare knowledge and plan to add more as I hear from readers what they want to see. So please send me your ideas and suggestions.

Editorial

Family Members Receive Limited Training on How to do Things Before Discharge Home.

I worked in healthcare long enough to know that nurses are busy people. Though they prefer spending time with their patients, regulatory requirements make it necessary for them to do a tremendous amount of documentation. Therefore, they spend a significant amount of their time nursing a computer rather than the patient. The result is less time at the bedside for discharge planning and teaching with family members.

At best, nurses may get an opportunity to review one or two essential treatment goals before discharge, with the caregiver taking the patient home. Unfortunately, the person providing transport may not be the caregiver but may only be there to provide the patient with a ride.

Family members often cannot come to the hospital for training due to work, home responsibilities, or transportation issues. The accepted compromise for consistently providing patient education seems to be handing the patient pre-printed generic health instructions. Too bad that often the handouts don’t fit the patient’s specific circumstances and fail to reflect the specific needs of that individual.

Caregivers Learn Through Reading Material

After Lynn’s Multiple Sclerosis diagnosis, I was handed five magazines on the subject at a doctor’s appointment and told to call if I had any questions. The doctor spent time during the meeting explaining multiple sclerosis. However, being somewhat numb from the news’s shock, I absorbed little of what I heard. I was a nurse and familiar with the condition and medical terminology. Then, it struck me, “What if I had no idea what any of these words meant? It would be like listening to a foreign language.”

Medical People Speak a Foreign Language

Many people feel like they have entered a foreign country when interacting with healthcare personnel and programs. I get that. Healthcare has its language, dress code, rules, and culture. Often when first hearing a difficult diagnosis, they immediately react with shock. The brain shuts down to a narrow focus making it easy to get confused. If unfamiliar with medical terminology, the caregiver may misunderstand terms/words that sound similar, and misunderstandings can occur. Therefore, families may attempt new procedures but with incorrect information because they misunderstood the instructions.

Discharge Instructions Are Not Always Clear

The Joint Commission, which accredits most healthcare facilities, requires patients to receive teaching and discharge instructions before going home. However, I usually see pre-printed “one size fits all” forms. The forms allow the hospital to check the box for regulations but do the patients little good. Instead, patients need information specific to their condition and their home situation. Therefore, all discharge summary sheets should include the following:

a list of discharge medications,
treatments,
a date for a follow-up appointment,
a number to call if you get worse,
a summary of your stay/visit.

What’s missing is the detail. You also need to know

which medications you received the day of discharge and what you still need to take when you get home,
any changes to your medication schedule at home based on this admission,
what treatments do you need to do (how often and how long), and
when to call if there’s a problem.

Coming Home is Overwhelming

Once home from the hospital or doctor’s office, you often wonder, “Now what?” You feel overwhelmed by what’s ahead and afraid of doing something wrong and causing harm. It’s scary. In the pages ahead in Becoming a Family Caregiver, you will find help building the knowledge and skills you need to confidently care for your family member.

Here you’ll learn how to do things, why you do them, and what happens when you do. You will see that you’re not alone and find others like yourself. Knowing where to go and what to do will be much easier for you, and if you can’t find what you need, you’ll have someone you can ask—Me!