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Caregiving Perspective: Training Needed for Caregivers

Since I’ve retired, I’ve found myself on a mission to do something about the plight of caregivers. Why am I so stirred up? It’s because there is a severe lack of training for family caregivers. The lack of training is especially true in rural areas where families are expected to perform medical procedures with little to home health resources.

Challenges of home health care in rural counties

Did you know that in rural America where I live, many counties have no pediatric home health services at all? In some of those rural areas, even adult services are challenging to find. I now have access to adult services, but ten years ago, I did not. Now, the home health nurses that monitor my husband’s care cover five counties and travel over a hundred miles between patients.

Nurses who work for agencies funded by Medicare and Medicaid receive pay based on caseload; not how many hours they work. They receive compensation based on the complexity of the case. The compensation does not take into consideration the amount of time spent at the home training the family, documenting the care, or traveling to the location from the last patient’s home. Therefore, in the eyes of the nurses, their wages do not compete favorably with the local nursing market. Many nurses leave their jobs after a short stint of working long hours and driving hazardous country roads. Trust me; they seriously are underpaid.

Signifcant shortage of home health nurses in rural areas

The result is a significant shortage of registered nurses in rural areas to perform necessary medical procedures on patients sent home with tubes, wound care, IVs, ostomies, and other new devices.

Imagine you are a Primary Progressive MS patient who has a neurogenic bowel. You have decided to get a colostomy for better bowel management. Deciding to get a colostomy was a tough decision. However, for years, you struggled with a very time-consuming bowel regiment and fear of having “accidents.” Surgery has the potential to free you from these struggles. So, it is with hopeful expectations that you schedule the colostomy.

You’re on your own

The procedure goes well; however, you have some MS complications from the anesthesia and are unable to care for the ostomy yourself the first few days. Your insurance does not approve you to have additional time in the hospital for training. Your discharge occurs three days post-op as scheduled with a home health referral for follow-up teaching.

A nurse meets with you and your wife the night before you go home to show you how to take care of your colostomy. She has a booklet called “What You Need to Know about Caring for your Colostomy.” She adds that if you have any questions to call the hospital’s number printed on the front. She smiles, says, “Have a good night,” and leaves. You’re on your own.

Patients going home with IV lines

Unfortunately, this is not an exaggeration. Scenes like this are happening every day. Patients go home with IV lines that allow access directly to the aorta and other major blood vessels through PIC lines and Porta Caths. They must access these lines to prevent drops in blood pressure, give medications, or take in nutrition. Parents manage their child’s nutritional needs using feeding tubes. They calculate calories based on the amount of table food taken by mouth and the total calories needed per day. The amount left over at the end of the day is given using a tube feeding supplement.

The tubes at my house

Then there are the extra tubes that get used like the ones I do at my house:

  • intermittent catheterization
  • indwelling catheterization
  • external ventilator management
  • administer IV antibiotics
  • initiate oxygen therapy based on oxygen saturation levels and behavior

Using a catheter on my husband for the first time

I remember the first time I had to use a catheter on my husband. He was sent home from the hospital with catheter supplies after a nurse removed an indwelling catheter. The catheter had been in place a month, but the medical team forgot to order the procedures to wean his bladder from the catheter to prepare it for the removal. When they took the catheter out, the nurse told me, “Sometimes patients can’t go on their own when they have had a catheter in for a long time. If he hasn’t voided in the next six hours and he feels distended, go ahead and insert a catheter to empty his bladder. He might have trouble starting back on his own.

That was the extent of my instructions. The nursing staff assumed since I had been a nurse, I knew what to do, but no one checked to make sure that I knew how to perform a catheterization. I could have been a mental health nurse with no experience.

My daughter administers total parental nutrition to her child

My daughter has a nine-year-old child who receives total parental nutrition (TPN). An infusion pump delivers TPN through a central IV line that threads through the skin into the blood vessels ending near the heart. The child gets a continuous infusion of TPN around the clock. Mom has to do sterile dressing changes, IV tubing changes, hang the medication, and manage emergencies like Central line infections and broken IV line tubes. A Central Line infection results in an almost immediate temperature spike up to 107F and an IV tube break means possibly bleeding to death. It also means exposure to lots of germs pouring into her bloodstream.

More respect and training is needed

Parents, spouses, and significant others often do not get the respect they deserve from health care providers. The attitude given to family members by many in the healthcare profession is one of superiority. The difference in educational levels sets up a bias in expectations. Unfortunately, the training delivered is often minimal due to that expectation and insufficient to prevent post-discharge problems.

While not always true, most families want to do a good job. If patiently given information in a way that is understandable for someone not trained in healthcare, families jump at the chance to learn. Why aren’t they given the chance to learn as much as they can about the care needs of their significant other?

Training should happen while at the hospital

Families should be allowed to learn everything they can while at the hospital rather than left to learn on their own after they go home. Indeed, let them see the entire chart. Allow them to be in the room, see it all, hear it all, and answer their questions. They need to know and understand. Once home, there is no point of reference to know if what you’re doing is right or wrong.

Performing wound care, they wonder, “Does that wound look healthy or infected?” How do they know if they don’t know what it looked like before? It’s no wonder that a significant number of patients return to the hospital within thirty days of discharge with an infection or complication.

The changes that need to happen

I think it’s time for a change.

  • I think family caregivers should be allowed to receive reimbursement by insurance as paid providers of care when they stay home to care for their family members. Many are physically harming themselves, trying to work and care for the family at the same time.
  • Online training should be available as a free resource. It should be made readily available as a reference tool to help families know what they need to do in a pinch.
  • Hospitals and healthcare providers must immediately start to teach families and patients every time they meet with them. They need to tell them about everything. Tell the family about the patient’s condition, what risks to avoid, why those things are risks, and how they can help. Allow the family to be part of the team, indeed. In fact, the family should share the co-captain role with the patient and have an equal voice with the doctor in being heard.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Donna Steigleder moderator author
    1 month ago

    @teddy s. Your story strikes such truth with me. I worked in an urban hospital and lived in a rural area, and the degree of difference between the two worlds is miles apart. That may be unfair though that in some areas in the city home care is also not as readily available.

    I, unfortunately, have witnessed too many families sent home with such minimal preparation and expected to succeed in caring for their family member. I know first hand that as they are standing there learning the first time how to do a sterile procedure, they are overwhelmed with emotion that clouds their hearing. Therefore, they miss so much of what they need to hear. Once home, they don’t know what to do.

    That’s why I’ve started a website to train new caregivers how to take care of family members one they are on their own. It’s called “Becoming a Family Caregiver,” and it’s aimed at providing caregivers with resources on how to do things so they can at least watch a video and remember their training. I’m just starting it and have much still to do, but I hope it will help caregivers in need of support. So many have no idea where to go for help.

  • teddy s.
    1 month ago

    Donna,

    As I was reading this, it made me further realize how fortunate I was as a caregiver in some ways. My first caregiver experiences came while I was in New York City, while the final year was in rural Pennsylvania. Since I’ve been in both situations, I can tell you that not only is what you say true, but it goes far beyond a mere lack of training for caregivers. The entire mindset is different for rural vs. urban care.

    When Tracey first entered the hospital ER with a huge pressure ulcer at the base of her spine, the primary goal was to treat the infections, which were multiple and septic. By the time the infections were eliminated, she transferred to a hospital which specialized in wound care. By then, four additional wounds had developed, all progressing to stage 4. She now had an entire team treating her, and when I visited her every evening, there was always someone knowledgeable to explain what was happening and answer any questions.

    When the wounds had stabilized and she was ready to go home, they asked me to come in a little earlier so that they could show me how to change the dressings, what to keep an eye out for, and how to keep her catheter functioning properly. I spent about 15 hours in “training”, and they were very patient with me due to my own disability. Properly dressing deep wounds with only one good hand was something I needed to figure out on my own, and with their help, I got pretty good at it.

    She had a visiting nurse who was also very helpful and let me be present to show me how Tracey was progressing, and what to keep a close eye on. Every minor cut and scrape was a potential new wound, and the nurse and I worked as a team. She would schedule her visits late in the afternoon when she could so I could be there, and in time I was doing much of it on my own.

    When we moved to Pennsylvania full time, it took a couple of months to get here set up with a nurse, and then she would only be there once a week. I was there only once with the nurse, who immediately removed the dressings I had done only a few hours earlier, and redid them in what I saw was a totally insufficient way. When I asked her what was wrong with the way I did the dressings, she simply said it wasn’t the way was taught. Not only that, but she filed a complaint against me with her supervisor, and I received a call telling me that if I continued to interfere, they would cancel the service. They seemed not to care at all about the patient at all, only that they could go through the motions and charge Medicare for their “services”.

    So yes, there is a very big difference between city treatment and country treatment, and I was very fortunate to have had the opportunity to learn all I needed to from very competent and caring health care professionals.

  • Toddlius
    1 month ago

    Great article. I worry about being a good caregiver should something happen to my wife, who has MS (I do too).

  • Donna Steigleder moderator author
    1 month ago

    @Toddlius Thanks. Being a great caregiver starts with caring and you already have that part covered. If you ever need help in knowing what to do, feel free to contact me with any questions you may have. I’ve been a caregiver for over 28 years starting with a special needs child and now with my husband. I’m happy to answer any questions.

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