Caregiver Resources and Support

Caregivers Have Mixed Abilities

Caregiver Resources and Support Maybe Limited

     Initially, family caregiver resources and support may be limited. They enter the role with guarded expectations and mixed knowledge and skills.  They don’t know where to turn for help or information. Depending on their background, much of what they know comes from television or movies, classes taken in the past containing medical discussions, personal experience, and participating in family health events. The knowledge gained may or may not be accurate, but they have no way of knowing if it is without a resource to verify it. Often, myths circulate for years believed to be accurate but revealed as inaccurate when “put to the test.” Therefore, some of their “medical” knowledge maybe be family folklore or community practices that are not science-based, which could be harmful rather than helpful.

 

caregiver helping care recipient up from floor

 
Home Care is Different from Healthcare

     On the other hand, some caregivers have backgrounds that prepare them for the role—for example, my daughter and I. We both have healthcare backgrounds that gave us extensive foundational knowledge of human anatomy and physiology and nursing procedures and process.  We both have insight into general patient care principles and know how to locate resources. 

 

No Introduction to Diagnosis for New Patients or Their Caregiver

     I count my blessings that I had that background when my husband, Lynn, developed Multiple Sclerosis. Without that foundation as a starting point in my research, I would have felt lost because I received no information about caregiving from his healthcare team. We were handed some booklets on medications to decide which drugs he would take, but other than that, we were on our own. The healthcare team shared no information with me about the National MS Society or any other organization dedicated to MS. Therefore, my search for resources on what I needed to know was strictly hit or miss. 

Everyone Has a Story to Tell

     When someone asks for advice about caregiving, I first ask them to share their story–the medical condition that brought them to caregiving, their encounters with healthcare, what they know, and what they need.  I do this because family caregivers need resources and support, and I need to find out what is important to them and what they feel are their priority needs. Even if, in my opinion, the concern isn’t a priority, if it is to the caregiver, then that’s a good enough reason.  After removing the issue, they won’t feel overwhelmed, and some of the stress will be relieved. 

 

Build on Knowledge

     Once I know their story and what is important to them, I can build on the caregiver’s knowledge. I find it’s best not to have expectations regarding any particular level of expertise on anyone’s behalf initially, even with highly-skilled healthcare professionals. Nurses work in different fields of expertise. son and mother at assisted living facilityCaring for someone in the home differs from working in a hospital.  Plus, caring for a family member can be emotional. It often adds a layer of bias that acts like a clogged filter, making it more difficult to clearly and objectively see events and problems. Most hospital rules don’t apply in the home, and healthcare workers must adapt their thinking to a new environment where “sterile” is not required.

Identifying What You Need to Know Concerning Caregiver Resources and Support

When I worked as a home health nurse and received a new patient assignment, I always did a health assessment the first time I met the patient.  The purpose of the health assessment was to check out the patient from head to toe to see for myself if everything was in good working order.  I looked at each body part and asked about the functioning of every system. I checked out their mental status as well, including their ability to follow instructions and member information. As you can imagine, when I evaluate someone’s health status, I ask a LOT of questions. Here’s an example of some of the information I like to gather. 

I phrased the following as if I was speaking to a patient.

  1. Tell me about your medical history, including all known illnesses, surgeries, medical conditions, etc. 
  2. What medications are you taking daily, weekly, and “as needed.” Do you regularly drink or use any herbals products? What are they? Do you take any vitamins or use health products or other supplements?  What over-the-counter medicines or ointments do you regularly use if any? I ask how often, how much, how taken, why taken, any side effects? What do you use for pain management?
  3. What do you usually eat? Are you on any special diet? Do you have any difficulty swallowing, chewing, indigestion, or reflux? What about diarrhea or constipation? Is there any type of feeding tube or ostomy in place? If so, what type, how long has it been there, and what are the care procedures?
  4. Any issues passing urine? Are catheters used? Are there accidents?  If so, when do they occur?  How is the skin affected? Any urinary tract infections?
  5. Any problems with bowels? What is the bowel routine? Is there a colostomy? If so, what supplies do you use? How do you care for your colostomy? Do you have any difficulty with leaks around the appliance, and if so, how is the skin affected? Has there been any skin breakdown?
  6. How is your breathing? Do you find it difficult to take a deep breath? Do you use oxygen? If so, how much and how often? Do you use an Inhalers, a Nebulizer, or any other bronchodilator? What is your usual oxygen saturation? Any swelling of ankles or shortness of breath? 
  7. Any chest pain with activity? Is nitro used for angina? Do you have any heart problems such as irregular heartbeats or leaky heart valves?
  8. Are you on salt or water restrictions for kidney disease or dialysis?
  9. Do you take insulin or any other mediation to regulate your blood sugar?
  10. How is your eyesight? Hearing? Ability to smell and taste?
  11. Any breaks in the skin? Bruises, cuts, skin tears, or other skin damage? If so, where is it and how long has it been there? What are you doing for it?
  12. Do you have any numbness, tingling, loss of strength of limbs, sharp pains, or any new function loss in any area?
  13. What level of activity level can you achieve with comfort? Can you go beyond that point with discomfort, or it that your maximum range?
  14. Can you read, write, and communicate with both well, and are you having difficulty understanding either one? What is your primary language? How do you prefer to receive your information-by reading, observation, or doing?
  15. What is your mental status like usually, and does it change? If so, what makes it change? Is your memory good? Any other special needs?

      After completing a health assessment, you know your family member’s baseline health status. If you record that information, you have a point-in-time record of “where they were when” to use for comparison in the future. Such a record can come in handy when you want to determine if the progress made toward reaching goals over time.  On the flip side, if coming home after a hospitalization, it can be used to determine how much was lost compared to a prior event.

 

     Another valuable piece of information to know is your family member’s current lab values, radiology reports, or other medical reports and how they compare to normal ranges or your family member’s average results.  

 

Identify a Problem List

     You develop your list of problems to dress based on the information you obtained while doing your baseline assessment. There is no need to put everything on the list. You only want to include those things that affect the quality of life or have the potential for something worse to occur if you ignore them. Make a list of those problems because they need attention daily or at least weekly.  The remaining problems usually get addressed during routine daily care and at doctor’s appointments. They don’t need to have a special place in a plan because they are a temporary or minor issue.

 

Sidenote about ignoring problems:  There is always a temptation to ignore problems that are not screaming at you. That may work for a while, but I must warn you, those problems never go away; they just go into hiding. What happens instead is that they fester unobserved and get worse while no one is looking.  Then one day, they erupt. If you know there’s a problem that needs addressing, don’t ignore it.  Keep your eye on it and occasionally check on how it’s doing.  If you see it progressively getting worse, move it to the front of the line.

 

Develop Goals

     Depending on your family member’s condition, they may need either long-term assistance or your services may be needed for only a short time while an acute problem heals. In both situations, it’s a good idea to have both long-term and short-term goals to help you stay on track toward meeting your timeline

  • Your long-term goals may be coordinating services and treatments toward a successful restoration of health back to the level that exited pre-event.
  • Short-term goals should be attainable within one day or no more than a week.
  • Keep your goals focused on progressing toward recovery, encouraging them to do as much independently as possible.
  • Join forces with other disciples to share goals when you can, such as combining your goals with those of physical therapy.
  • Establish your goals on the first of the week and celebrate your victories at the end of the week. Keep the goals small and measurable. The easier to achieve, the better they become as means to provide positive reinforcement and encouragement.

 

Create Action Steps

     Coming up with action steps can be difficult for someone with no experience. You may be wondering where to go to get ideas to use. I recommend looking through the topics on this website to get some ideas initially. If you need additional information, seeking information from the resources listed under the Organization Resources page or Organizations Supporting Specific Conditions, Diseases, or Causes Resources pages.  Both Resources pages have lists of several organizations that have a wealth of information available to the public. You can also ask me for help, call your doctor, or ask other caregivers through Caregiver Connection.

 

     Keep your plan simple. Don’t make it elaborate or super complicated.  Keep in mind how much you already must do. When you can combine tasks so that one action resolves multiple problems, let that be the solution.  You don’t have to have a separate action for each problem.  You can have one action that takes care of 15 problems as long as it’s effective for each one.

 

     There are no rules for how you put your plan together–other than make it something that works for you.  All you’re doing is putting together an organized way of making sure you address your family member’s needs in a way that you don’t forget anything. One approach is to make a calendar of tasks that get done on certain days of the week.  Another way is to plan your activities around groups of similar tasks such as performing activities related to skin or wound care at bath time. Use whatever process seems easiest or most natural to you as a workflow. Doing so makes the process seem natural and makes it easier to follow without the need to think too much about what you’re doing.  

 

Implement Your Action Plan

     As you implement your action plan, don’t be surprised if some things don’t work. Expect that you’ll need to tweak it a lot. Until you get into the flow of how much time all the tasks take and what naturally follows behind something else, you will likely want to rearrange the schedule daily.  That’s fine. Keep at it until it feels like you have it where you and your patient feel comfortable. At that point, you will be in “maintenance” mode rather than crisis mode.  Savor the feeling because a crisis is just around the corner; it always is—to shake up your routine again.

 

How is Your Plan Working?

     It’s a good idea to periodically check your plan to see if you’ve overlooked anything that should receive attention and confirm that treatments are working. The way to do that is to compare what you have at that time to what you had when you first started, and the last time you checked.

     

     I recommend keeping a notebook with a table that has listed baseline information on anything you might want to track. For example:

  • Wounds: Date/list distance (L-R) /(top-bottom) / (deepest point-surface) / drainage
  • Wounds: Date/list distance (L-R) /(top-bottom) / (deepest point-surface) / drainage
  • Wounds: Date/list distance (L-R) /(top-bottom) / (deepest point-surface) / drainage
  • Wounds: Date/list distance (L-R) /(top-bottom) / (deepest point-surface) / drainage
  • Wounds: Date/list distance (L-R) /(top-bottom) / (deepest point-surface) / drainage

 

  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX
  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX
  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX
  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX
  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX
  • Insulin: Date/ Time/ Blood sugar XX / Insulin XXXX

 

  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat
  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat
  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat
  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat
  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat
  • Vital signs: Date/Time/BP/Pulse/Resp/O2Sat

 

     When you see grouped data, you can analyze information to see if any trends (similar behaviors) emerge over time. If you do not get the change you need, re-evaluate your plan, and adjust the action steps.  If you achieved your goal, take that step away and pat yourself on the back.

 

     Providing care to someone who cannot care for themselves is difficult. Often special equipment adapted to meet immobility needs makes the work less strenuous. However, new caregivers may need help identifying what type of equipment is available to meet their needs when first starting.  Finding the equipment after they hear about it is another challenge.  Once found, the impossible challenge that nearly topples everyone is the cost of the large equipment that is the most helpful-the transfer equipment.

 

     Good, back-saving, transfer equipment is not cheap.  To get insurance to pay the cost, it takes hours of paperwork and testifying before Senate subcommittees investigating healthcare fraud and abuse before getting approval. You can learn to transfer without the expensive equipment, safely but it causes a lot of joint wear and tear with muscle spasms adding their cries of alarm. Even doing it yourself, you should have gait belts, maybe a transfer board or side rails, and other devices to provide for safety. Whether you use the best equipment or you keep to essentials, if you provide care to people with mobility challenges, you need equipment to do it safely.  When starting, it’s good to figure out what is required, set priorities for purchase, and put together a plan for equipment needs.

 

     Some medical equipment can be cost-shared using health insurance.  Look at your health insurance benefits policy under durable medical equipment to find out your limits and exclusions.  We have purchased all our larger pieces of equipment using that benefit.

     I don’t want to imply in any way that individuals who have no training are not doing a good job in the care they provide. I think that family caregivers thrust into the role without any support and left to sink or swim are true heroes.  They sacrifice their lives for their family members, and most people who do not know what it’s like to be a caregiver have no understanding of how much they truly sacrifice. They do an amazing job, and many know much more about what is happening to their loved ones than the doctors and nurses who try to tell them what to do when they bring their family members into the hospital.

 

     However, I think that when someone becomes a caregiver, their lives would be made safer, and the care they provide would be more efficient, effective, and yes, safer if certain basic training were readily available. I think new caregivers should receive all of the following basic training topics:

  • Body Mechanics
  • Patient Positioning and Movements
  • Preventing Skin Breakdown
  • Recognizing Emergency Situations
  • Handwashing and Preventing Infections

 

     The above basic skills are fundamental to providing care safely. They protect both the one receiving care and the one giving care and apply to almost everyone who becomes a caregiver at some point.

Healthcare Regulations

 

     Healthcare systems, whether single hospitals or large enterprises, are regulated and licensed by the same organizations. Therefore, you can count on some consistencies among them.  The Joint Commission accredits all healthcare systems, and State Professional Boards license all health professionals. All healthcare facilities are regulated by the Drug Enforcement Administration, the Occupational Safety and Health Administration, and the Centers for Medicare and Medicaid Services (CMS), just to name a few.  Therefore, all of them use the same medical jargon, follow the same leadership chain of command, comply with the same standards of practice, and use the same medical terminology. They have no choice if they want to pass their inspections. That being the case, it is easier for those not in healthcare to learn the system easier.

Complaints

     While there are some differences from place to place, once you know the basics, it’s easy to pick up on the unique aspects of a place when you come there for treatment. The other nice thing about all of them having the same regulations is the ability to recognize the standards and violations once you know what they are. Therefore, if you feel that your rights are under attack, you can contact any of them about filing a complaint, and they can help you with the process.

Who’s in Charge?

     Wherever you go, you can usually tell the players by this general rule: (1) Doctors are the ones walking in front of the pack or sitting at the head of the table. If not at the head, they are sitting directly to the head’s immediate right or left. They have MD after their names. (2) The Chief Executive Officer or President leads the organization, is always in a suit, usually sits at the head of the table, and expects everyone to bring them whatever they need. Their job is to keep the system financially stable. The administrators/Vice Presidents do likewise. (3) Nurses are the ones in charge hour by hour. They are responsible for making sure the patient stays safe and gets well. (4) Therapists treat something – physical therapy, respiratory therapy, occupational therapy, etc. (5) Technicians run something – Radiology technician, laboratory technician, EEG technician, etc. (6) Aides, assistants, and partner assist with something – nursing aide, care partner, surgical assistant, etc.

Staying at the Hospital

     Being a caregiver in a hospital environment is different from being a visitor.  Caregivers often stay overnight with patients. I have stayed with Lynn at the hospital without going home for a month without a break, getting an exchange of clothes and supplies from my family as needed. Living in a hospital if a different experience.  When you need to survive as a visitor in a room, it’s helpful if you’ve talked to others who have also had to camp out in a patient room before. I have done it so often; I automatically know what to pack.

  • My soaps and shampoo products stored in bottles that I can use in public restrooms to take a sink bath, if necessary
  • Non-perishable food and beverages since I might not be able to leave his side to get something to eat
  • My medications already sorted per day in baggies, so they are easy to take
  • Slippers to protect my feet at night if I must get up
  • A sleep mask because the lights never go out (you might want earplugs too because it’s very noisy)
  • Cell phone and charger and my computer or tablet to stay connected to those outside the room (plus charger)
  • My pillow – the unit will usually give family linens and a blanket but not a pillow.

     I also bought a fold-up wagon to transport these items plus what I need for Lynn to and from our room and an electric cooler to store food and drinks in the room.

Family Needs Information

     If the caregiver’s family member is immobile, information on skincare and immobility is essential, and safety instructions prevent falls. I can’t stress how important both topics are for caregivers. If caring for someone fragile, a fall can lead to broken bones and a long term stay in bed with a downhill run toward total loss of independence within a few short months.

 

     Once a person is completely on bed rest if the caregiver is not familiar with skincare and how to position to prevent skin breakdown, the development of pressure ulcers often occur due to a lack of knowledge about how to prevent them. Once they start, they are difficult to heal. Often, the wounds become infected, and the infected wound leads to sepsis (infected blood).

 

Bedrest Leads to Pressure Ulcers

     Falls and skin breakdown both are disasters leading to the early death of family members all too often. Before the early death for weeks and months of pain and discomfort for both the caregiver and family member. If you learn to do good skincare and wound prevention early and know how to safely do a transfer, you can likely prevent this from happening.  Lynn has been immobile for over ten years and has only had quarter-sized skin breakdown a few times. It can happen, but you must be diligent and take it seriously. 

     Caregiving is expensive. Anyone new to the role needs information on accessing financial resources, what’s available, how to apply, and if they qualify for assistance. The Organizational Resource page has links to several organizations willing to help caregivers with their finances, Medicare or Medicaid application processes, and other issues caregivers face.

     “Always Be Prepared” was the Girl Scout motto (or what I remember it to be) from my childhood long ago.  I take that to heart when it comes to preparing for emergencies.  I have a page called Preparing for Emergencies I recommend you review.  You should consider safety concerns related to your family member’s medical condition, the equipment they use, medications, and any interactions between medications and food they eat. Develop an emergency preparedness plan in case a tornado or hurricane visits your hometown.  Would you know what to do? Don’t think it couldn’t happen.  One morning a spin-off from a tornado sent a tree through the front and back window of one of our cars in our driveway. You never know what might come flying by your window.

     Do you have a good strategy to reduce stress? Caregivers tend to store up emotions. They need to share those feelings with someone other than the immediate family.  An empathetic listening ear can go a long way in restoring a caregiver’s peace of mind.

Learning What You Need to Know

You Don’t Know What You Don’t Know 

  When starting as a caregiver, you don’t know what you don’t know.  Learning what you need to know comes from trial and error.  You try something that doesn’t work and find out you need to learn more about that subject. 

Determining What You Need

     Financial and cultural influences impact caregiver resources and support.   Needs are different in each situation. The secret to survival requires understanding the caregiver’s strengths and weaknesses concerning the medical needs of the care recipient and their life story.

Step By Step Approach

     Working through the following nine topics can help clarify some of those questions.  You can understand if a demand you feel is real or placed on yourself from your internal expectations. The following provides a general description of the topics. 

  1. Learn how to do a health assessment on the person under your care.
  2. Develop a plan of care based on a health assessment you completed
  3. Determine your equipment needs
  4. Learn any essential skills you may be missing
  5. Develop an understanding of how you will interact with the various healthcare systems and communities in the future
  6. If immobility is a factor, identify the potential risks and preventions.
  7. Discuss the impact of caregiving on personal finances and precautions to take to protect personal wealth
  8. Create an emergency preparedness plan for you and your family member
  9. Stress Management

← See details regarding topics on left

Caregivers learn to do health assessments.
Caregivers learn to do health assessments.
Caregiver supporting family member with mental health memory issues.
Caregiver supporting family member with mental health memory issues.
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