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Assessing Needs

Assessing Needs - Caregivers

Caregiver Needs Often Met By Unreliable Sources

     Caregivers enter the role with guarded expectations and mixed knowledge and skills.  Assessing needs for themselves or their family member is something very foreign to them. 

    Caregivers with no professional healthcare training either have no experience in dealing with medical situations  or gain knowledge through one of the following avenues:

  • watching TV or the movies,
  • taking healthcare classes in school,
  • illnesses or accidents experienced with family or friends,
  • cultural lore, religious beliefs, or family remedies passed down through generations,
  • scams or advertisements seen in media campaigns,
  • researching topics over the internet or reading books,
  • reading books or other literature on the subject,
  • asking neighbors for advice.

While most of these sources provide them with information related to the subject, the reliability and effectiveness may be inaccurate or even potentially harmful. When assessing needs, caregivers must feel confident in their source of information before they can feel comfortable making the correct decision for their family members.

Part of adapting to caregiving involves being prepared for the unexpected such as falls. Planning ahead for what to do when a fall occurs and you're alone to deal with the crisis helps to keep the panic down when it happens for real.
Part of adapting to caregiving involves being prepared for the unexpected such as falls. Planning ahead for what to do when a fall occurs and you're alone to deal with the crisis helps to keep the panic down when it happens for real.

Who Cares for The Caregiver?

What Happens When the Caregiver Can’t Provide Care?

    Sometimes caregivers also have medical problems that make it difficult for them to provide care. They get sick, need surgery, or have accidents. Either party may have a chronic illness or physical limitation that could flare. Who cares for whom if both have a sick day? What happens if the primary caregiver cannot get out of bed? Is there anyone left at home with the fundamental caregiver knowledge to assume the duties required? As you assess needs, making a plan for what happens if you, the caregiver, are not there to provide care is very important.  As you come up with a plan, think about the following questions.

Can a Staffing Agency Help?
  1.      Is there an agency in the area that they can call for help at the last minute who might be able to send someone as a substitute caregiver?

 In some rural areas, services are not always available for last-minute respite care.  Agency staffing for emergency 24-hour care is very expensive.  Would there be financial resources available to have someone come in if the resources were available? 

2.  Are there others in the family capable of adapting to caregiving responsibilities part-time as a backup? 

Have you trained other family members to replace you if you became sick or at least written out instructions on what to do in an emergency? 

    Consider Contingency plans!

Assessing for individual learning needs.
Assessing for individual learning needs.

Assessing for Individual Learning Needs

Everyone Has a Story to Tell

     Everyone wants to feel heard—to be important. When someone feels stressed, the pressure usually comes from storing up the emotion inside, keeping it to themselves, and struggling to solve it alone. When someone asks me for advice about caregiving, I know that most people need to tell their story as much as they need to receive advice. Therefore, I usually ask them to share with me what they think I need to know.

     Most of the time, if I leave the door open by saying, “tell me what you think I need to know,” I’ll get everything–the medical condition that brought them to caregiving, their encounters with healthcare, what they know, and what they need.  Other times, I need to probe. However, if I can get the family caregiver to tell me their story without probing, I’ll learn what’s important to them by how many times they mention it and in how many ways.

What is Important?     

     When an issue is important to someone, and they see it as a priority, if you as the caregiver dismiss it, you won’t get their cooperation as easily. Therefore, as you begin your journey as a caregiver, learn to listen to your family member carefully. If they repeat an issue often, they are giving you a signal about something important to them. Please find a way to try to appease them on that issue. If you don’t, it won’t be easy to move forward.  If you do, then you can build trust with them.

Build on Knowledge

     The other benefit from hearing their story is that you learn what they know. After learning the status of a caregiver’s or family member’s baseline knowledge, you can add to it directly or indirectly as you feel most effective to the situation.

   With caregivers, I try not to have expectations regarding nursing expertise on anyone’s behalf, including when I work with highly skilled healthcare professionals. Nurses work in a vast array of fields of expertise, from pediatric to psychiatry to trauma. Caring for someone in the home is significantly different from working in a hospital where supplies, equipment, and additional help are readily available.  

     Furthermore, caring for a family member may create an emotional conflict that hinders judgment. It often adds a layer of bias that acts like a clogged filter, making it more difficult to see events and problems clearly and objectively. 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.

Resource:

Prepare to Care Guide by AARP

 

Caregivers are at high risk for back injuries due to using improper body mechanics when moving family members.
Caregivers are at high risk for back injuries due to using improper body mechanics when moving family members.

Past Experiences Help with Assessing Needs

Caregiver researching a billing problem over the internet
Caregiver researching a billing problem over the internet
Assessing Needs Based on Past Experiences

     Some caregivers have backgrounds that prepare them for the role. I have a healthcare background that gives me extensive foundational knowledge of human anatomy and physiology and nursing procedures and process.  With that background, I have insight into general patient care principles and know how to locate resources. Having that experience and knowledge also gives me a sixth sense that something isn’t “right.” I pick up on subtle changes in the body because I know what normal looks like, whereas someone who knows nothing about how the body works would probably miss the warning sign.

On Our Own

   Most new caregivers are not as fortunate as I was when Lynn was diagnosed with Multiple Sclerosis (MS). Without having nursing training as a foundation in doing my research, I would have felt lost. However, with that knowledge, assessing needs for him medically and learning needs for me went easier by far.

      I feel blessed that we were so fortunate because most of what we know today, we learned on our own. We received little orientation to Lynn’s chronic health condition – MS. His healthcare team gave us a booklet that explained the different types of MS, but it only hit the high notes. There was nothing included about caregiving.

     Most of the information provided focused on choosing which drug he should take for his MS treatment. We received booklets on medications to help us decide which drug he should take to treat his condition, but at the time, we didn’t know enough about MS to understand what we were reading. His nurse shared information with us based on personal knowledge. Without that assistance, we would truly have felt lost.

    Other than booklets from drug companies, we were on our own to obtain information. We received no information from Lynn’s doctor about the National MS Society or any other organization dedicated to MS.  My search for resources on what I needed to know was strictly hit or miss. I happened to know from my RN training about some resources and started exploring those but wondered through the internet, gathering information from both good and bad sources otherwise.

Lessons Learned

From talking to other caregivers with similar experiences, here’s what I’ve found to be true.

  • The best source of how to manage at home is another caregiver. Sometimes the home health nurses can give you some guidance that they pick up from other families they visit but usually, you get answers by networking with other home caregivers.
  • Use caution when taking information from the internet. Read multiple sources to confirm that more than one source supports the same set of facts. Stay away from the “Ad” only sources since they may be trying to promote their products. If you use an “Ad” source, validate it with a non-ad source.
You don't have to take this journey alone.

Learning How to Do a Health Assessment

How to Do a Health Assessment

     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 part of the body and asked about the functioning of each body system. I checked out the patient’s mental status, including their ability to follow instructions and remember information. As you can imagine, evaluating someone’s health status requires asking a lot of questions.

     As a caregiver, you will want to know how to tell if something is wrong with your family member or if anything has changed since your last visit with them. I’ve written out some sample assessment questions to help you know what to ask when assessing various body parts and functions.  Some of these you would not apply if you saw the family member regularly but might be helpful if you took care of a distant relative. 

  1. General Knowledge: What are your current medical conditions? Which ones require you to see a doctor each year? Which ones require you to take medicine? Have you had any major surgeries where you had to stay in the hospital a long time or that took you a long time to recover? Are there surgeries that you still see a doctor about now?  Do you have any aches, pains, or illnesses that you have not seen the doctor about but are treating? If so, what are you doing for them?
  2. Medications: 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 use if any? How often, how much, how do you take it, why do you take it, any side effects? What do you use for pain management?
  3. Eating: What do you usually eat? Are you on any special diet? Do you have any difficulty swallowing, chewing, indigestion, or reflux? Is there a feeding tube? If so, what type, how long has it been there, and what are the care procedures? Any unexplained weight gain or loss. Any bleeding orally? Any nausea or vomiting?
  4. Urinary System: Any issues passing urine? Does the urine smell? What color is it? Do you get up at night? How often do you go? Are catheters used? Are there accidents?  If so, when do they occur?  How is the skin affected? Any urinary tract infections? Do you have any swelling of your ankles, legs, hands, or elsewhere? Are you on dialysis? Are you on any food or liquid restrictions for dialysis?
  5. Bowels: Any problems with bowels? What about diarrhea or constipation? How do you treat it? Any bleeding rectally? 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. Breathing: 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 inhaler, a nebulizer, or any other bronchodilator? What is your usual oxygen saturation? Any swelling of ankles or shortness of breath? Do you have a device to make oxygen at home, any oxygen tanks, or other oxygen equipment at home? Do you use a C-PAP or B-PAP machine to help you sleep at night?
  7. Heart: Any chest pain with activity? Do you use anything for chest pain if you get it? Do you have any heart problems, such as irregular heartbeats or leaky heart valves? Do your lips turn blue when you’re tired? Do you get faint or pass out when you stand up? Do you feel your heart beating in your chest? When? How does it feel?
  8. Diabetes: Do you take insulin or any other medication to regulate your blood sugar? What do you take and how often? How is that working for you?  What is your current blood sugar? Do you exercise? Do you test your blood sugar, if so, using what? Could you show me how and what you use? What is your diet? How is your skin? Feet? Circulation?
  9. Eyes: When was your last eye exam? Do you wear glasses or contacts? Can you see with them? Do your eyes hurt, drain, itch? Do you have cataracts? Can you see objects clearly at night?
  10. Hearing: How well do you hear in each ear? Do you have any ringing? Any dizziness? Do you use a hearing aid? Do they work?
  11. Nose/Smell: How is your ability to smell? Any odors you cannot smell? Are you sensitive to odors? If so, which ones? Do you have allergies? Do you get nasal congestion? If so, how do you treat it? Do you get nose bleeds? Do you need to sit up to sleep? How many pillows do you use?
  12. Taste/Teeth: How is your ability to taste? Is there anything you cannot taste? Do you have your teeth? If not, do you have dentures? How are your gums? Do they bleed? Do you get sores in your mouth? Any issue with bad breath?
  13. Skin: 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 about it? Do you have dry skin? Varicose veins? Does your skin tear easily? Are there any usual bumps, moles, lumps, or growths?
  14. Nerves/Sensation: Do you have any numbness, tingling, loss of strength of limbs, sharp pains, or any new function loss in any area? Does it change with positioning? Does anything else affect it? What do you do to help it? When did it start? Was there an accident associated with it? Had you started any new medicine just before it started?
  15. Activity: What level of activity level can you achieve with comfort? Can you go beyond that point with discomfort, or is that the absolute most you can do? How far can you walk at a continuous steady pace? How many flights of steps could you climb if each flight had five steps between landings?
  16. Communication: Can you read, write? Do you have difficulty doing either? Understanding either?  What is your primary language? How do you prefer to receive your information by telephone, text, email? How do you like to learn information? By watching someone do something, doing it yourself while someone watches you, by reading about it, watching a video, or a combination of these?
  17. Mental Status: What is your mental status like usually, and does it change? If so, what makes it change? Is your memory good? Do you lose things? Have you ever gotten lost? Do you have any other special needs?
  18. Sleep: How much do you sleep? How long do you sleep at one time? Do you nap during the day? Do you fall asleep when just sitting around watching TV or working on something? How much total sleep do you get in 24 hours? How well do you sleep when you do sleep? Do you take anything to help you go to sleep? Do you snore? Is your mouth dry when you awaken?
  19. Speech: Do you have any difficulty with your speech? Forming words? Understanding words? Getting the correct word to come out as you start to say it. Do you stutter? Have trouble with losing your voice? Have dry mouth a lot? Sore throats? Can others understand what you say, or must you repeat yourself to them frequently? Slur your words? Use the wrong words?
  20. Mental Health: Do you worry about anything? If so, what? Do you feel depressed? Sad? Do you feel hopeless, like life is not worth living any longer? Do you ever want to hurt yourself or anyone else? Do you sometimes lose control of your anger? What happens when you lose control? How do you feel most of the time? Are there days that you can’t do your usual activities? What do you do on those days? Where do you go? What makes you feel better? What makes you feel worse? Do you feel safe? Has anyone hurt you? Do you ever think you see or hear something that later you found out wasn’t there?
       Develop a Plan of Care

     After completing a health assessment, you have a baseline for your family member. A comparison with the baseline can show an improvement or decline in their state of health.  Initially, compare their baseline to what is average for their age, race, and gender. If you have access to their prior medical history, compare their current baseline to their medical history. Look at what is normal for them. It will tell you whether a low or high reading for their lab work should cause you concern or not. Suppose someone normally has a high potassium level and gets a high potassium reading back today as a lab value. In that case, I consider that an expected reading for them since it’s one the doctor would already know is an issue.  However, if they usually have a normal reading but today, it’s below normal, I would be concerned and call the doctor to ask what treatment we needed to start. Low potassium can cause the heart to beat irregularly.

Develop a Problem List

     Develop a problem list based on the information you obtained while doing your baseline health assessment. Include everything you found that was causing suffering in any way needed medication, any treatment, or had the potential to cause harm.  Prioritize them based on how they affect the quality of life or their potential to cause harm if you ignore them.

Make two lists.

  • Those that don’t need daily attention place in a folder to re-evaluate quarterly or more frequently if symptoms develop.
  • Those that currently need daily or weekly attention become the foundation for your plan of care.

     The conditions on your problem lists (both lists) are the ones you need to learn how to identify what is normal, warning signs of a problem, normal lab values, risk factors to avoid, how to treat problems as they develop to keep them out of the hospital, and anything else you can learn to keep them as healthy as possible to reduce your workload. Why?  Because the healthier they are, the better it is for both of your lives. 

Establish Goals

     Caregiving may be a short- or long-term commitment. Either way, determine your recovery goals. Then after setting your goal, evaluate your progress to determine if you are achieving them.  

Here are examples of goals.

  • Long-term goals: Coordinating services and treatments, so they return to doing everything they were able to do before their accident.
  • Short-term goal:  Today, he will get out of bed and sit in a chair for 3 hours. This week the patient will learn to button her shirt.
  • Keep your goals focused on progressing toward recovery.
  • Please encourage your family member to do as much on their own as possible.
  • If PT or OT come to your house to work with your family member, try to get everyone working on the same goals. Example OT and PT both may work on independent eating at the table. While OT works on hand-to-mouth strengthening, PT works on core muscle strengthening for sitting up.
  • 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 wonder where to get ideas. Start by looking through some of the topics found on this website. Then look through some of the organizations found on the Resources pages. There are lots to consider, and most offer guidance documents, toolkits, or other materials for you to consider. Look at several and decide what works best for you.

     Keep your plan simple. Don’t make it elaborate or complicated.  Keep in mind; you don’t want to spend time on busywork. Only add to the plan what is productive and helpful to your family member’s recovery. When one task can address multiple problems, let that one solution solve 15 problems if it can. You don’t have to have a separate action for each problem. 

     There are no rules for how you put your plan together–make it work for you. 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 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. Do what feels natural and what works easiest.

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 the plan a lot. Until you get a sense of what works, plan on making daily changes.  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 design mode.  Savor the feeling because something will happen to make you need to change it before too long—it always does. Learn to be flexible.

How is Your Plan Working?

     It’s a good idea to periodically check your plan to see if you’ve overlooked anything. You also need to confirm that you’re making progress.  You do that by comparing where you are now with your baseline measurements.

     You need to track your progress to determine if you are achieving your goals. With each treatment that can support a measurement, do one and record it. For example:

  • Wounds:  Record measure the widest point left to right and up and down. Then, using a q-tip, measure how deep it is. Describe the color, smell, thickness, or odor of any drainage.
  • Insulin:  Record the Blood sugar readings for the time of day and the amount of insulin given based on that reading.
  • Vital signs:  Record blood pressure, pulse, respiration, and oxygen saturation for the time of day. Note any unusual events associated with the reading, such as pain.

     When you see grouped data, you can analyze information to see if any trends (similar behaviors) emerge over time. After looking over the information, if you see an improvement, you can call the doctor to discuss changing the treatment plan or if a doctor’s order is not needed, make the change yourself.  If you achieved your goal, take that step away and pat yourself on the back.

Determining Your Equipment Needs

     Providing total care to someone with limited mobility requires a lot of strength, flexibility, and energy. Many times, unexpected movements cause muscle strain or back injuries. Special transfer or moving equipment (often called durable medical equipment or DME) helps reduce the risk of these injuries, but the cost is high. However, insurance may cover a portion or maybe all the cost of the equipment provided you obtain prior approval for the purchase. 

New caregivers, therefore, have two primary challenges related to assessing equipment needs.

  1. What type of equipment do they need? (brand, device, features)
  2. How do you obtain prior approval for the equipment from insurance?
What type of equipment is needed?

     Your options for DME medical equipment are huge.  Numerous companies produce durable medical equipment and push their products to customers through hospital and physician office contacts. Almost all equipment now seems like a Cadillac version compared to that of old and can offer you all types of bells and whistles. Therefore, determining what is best for you and your family member may be confusing, especially if the salesperson is a therapist working for commission, attempts to sell you every bell and whistle available as an add-on. How do you decide what you need or are likely to use?

  The best person to help you with that answer is either your physical therapist or doctor. Knowing your family member’s baseline, potential recovery maximum, and estimated timeframe for achievement is essential in making an educated guess. Therapists know which companies are selling DME equipment in your area and their customer service reputations. 

     Other referral sources can be staff in the departments of Physical Medicine, Rehabilitation, Physical or Occupational Therapy, etc., to serve as your consultants when trying to make decisions about mobility equipment or transportation needs.

     Tip: Remember to also buy safety equipment if recommended by the manufacturer and use it as directed. Individuals with immobility limitations may not be able to prevent an injury from occurring to themselves. It’s up to you to put safety measures in place to protect them.

How to Establish Medical Necessity     

    Before purchasing any expensive equipment, always confirm with your insurance company whether you need pre-authorization to obtain reimbursement for the expense.  Insurance companies only approve payment under pre-authorization if they believe the equipment is medically necessary.  If pre-authorization is required and not obtained, you lose the option of financial assistance for the expense.

      What does “medically necessary” mean? The equipment must treat or prevent an illness, injury, condition, disease, or symptoms of such and meet accepted standards of medicine for the use requested the requested. When you submit a reimbursement request for review to Medicare or Medicaid, the reviewer will look for the following criteria:

  • Is it Durable (can it withstand repeated use)?
  • Is it used for a medical reason that the patient has as a diagnosis?
  • The equipment is usually not useful to someone who is not sick or injured.
  • The patient will use the equipment primarily at home, not for work.
  • The lifespan of the equipment should be for at least three years or longer.

If you receive pre-authorization under Medicare for purchase, you pay 20% of the Medicare-approved amount, and the Part-B deductible applies. If you have secondary insurance, it may help pay the difference in the cost.  If you are using private pay insurance, you need to look at your coverage’s durable medical equipment section before purchasing equipment to determine your co-pay and pre-authorization requirement.  If you don’t, you may find out too late that you are stuck with an expense you could have avoided with advanced planning.

Medicare covers the following DME supplies:

 

Work Smarter: Not Harder

   I don’t want to imply in any way that individuals who do not have training are not doing a good job in the care they provide. Quite the contrary. I believe that anyone thrust into the role of family caregiver without the support and left to sink or swim on their own is amazing and, in my book, a true hero.  Family caregivers sacrifice their lives and dreams for their family members.

    Most people who do not know what it’s like to be a caregiver have no insight into the life and magnitude of sacrifice required of a caregiver. They do an amazing job of holding everything together. Many know much more about what is happening to their loved ones than the patient’s doctors or nurses. Often, it’s the family member who recognizes the subtle change before a medical “crash.” I expect people (except caregivers) would be amazed at the number of times a caregiver has intervened to prevent harm to a family member by a healthcare provider or staff member who was nonchalantly doing their job and not paying attention.

Better Prepared with Training

     However, the more a caregiver knows, the better prepared they are to prevent harm and take effective action. The more they know, the less time they spend re-doing what doesn’t work. They can choose the most effective option first to save time and money. Most important, they need to know how to protect themselves so they don’t get hurt. If something happens to the caregiver, who is going to care for them? Who will handle the laundry, pay the bills, fix the meals, go to the store, or care for the patient that needed care in the first place?  Who is going to care for you? 

For your safety, I think new caregivers should review the following training topics:

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

 

Healthcare Regulations

     Whether single hospitals or large enterprises, healthcare systems are regulated and licensed by the same basic organizations; therefore, healthcare regulations have standards of care and consistent regulations. For instance,

  • The Joint Commission accredits all healthcare systems that receive Medicare reimbursement.
  • State Professional Boards license all healthcare professionals like doctors and nurses.
  • All pharmacies are monitored by the Drug Enforcement Administration, the Occupational Safety and Health Administration, and the Centers for Medicare and Medicaid Services (CMS), to name a few.
  • CMS (Centers for Medicare and Medicaid Services) and the Office of the Inspector General (OIG)
  • regulate any facility that accepts Medicare, Medicaid, or CHIP.
  • OSHA (Occupational Safety and Health Administration) covers all workplaces, including hospitals.

Since all of them must follow the same rules, most use similar words to describe their rules and medical jargon, have a similar leadership chain of command, comply with the same standards of practice, and often have a similar complaint process. HOWEVER! While the rules are similar, they are not the same. Often localities use their own words and phrases. You, therefore, must check out the rules for yourself! Don’t make assumptions.

Complaints

     While there are some differences from place to place, once you know the basics, the ability to recognize the standards and violations begins easy. Therefore, if you feel that your rights are under attack, you can ask a leader for help in finding out what to do to access any of the above complaint processes.

Who’s in Charge?

     If you’re new to an organization and you’re trying to figure out who an unknown person might be, here are some tips for making an identification:  

  • When making rounds, a “Chief” or “Head” Doctor (the ones who have finished residency and are attendings) is the one walking in the front of the group or sitting at the head of the table. If not at the head, he is sitting directly to the head’s immediate right or left. (His nametag has MD after his name or shown on his lab coat.)
  • 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.
  • Nurses are the ones in charge hour by hour on the nursing units. They are responsible for making sure the patient stays safe and gets well.
  • Therapists treat “something” – physical therapy, respiratory therapy, occupational therapy, etc.
  • Technicians run the equipment – Radiology technician, laboratory technician, EEG technician, etc.
  • Aides, assistants, and partners assist – assist other healthcare professionals and assistants.
Staying at the Hospital

     Being a caregiver in a hospital environment is different from being a visitor.  Caregivers often stay overnight with patients. I once 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 is 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. Having done it often, I automatically know what to pack.

  • I store my soaps and shampoo products in bottles so I can wash in public restrooms.
  • Non-perishable food and beverages in case I can’t go to the cafeteria to get meals.  
  • I keep my medications sorted in baggies, with each day kept separately.
  • Non-skid for foot protection and to decrease direct contact with the floor (think hospital germs on the floor—yuck)
  • A sleep mask and earplugs because hospitals never sleep.
  • Cell phone, charger, my computer or tablet, and their chargers, and a safety extension since you’ll be plugging into patient care plugs.
  • My pillow – the nursing unit will usually share unit linens with families but not disposable pillows due to the cost.  Bring spare pillowcases for germ covering.

     I 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. I take all the above plus my clothes just for me.

     In addition, I pack a bag (or two) for Lynn.  I’ve discovered several items at our local hospital that they don’t keep on hand that Lynn needs for his routine care. I bring those items with me. I keep a supply pre-labeled or label a new batch if he started to act sick, so it’s obvious which are ours and what belongs to the hospital. He also uses special support pillows and other comfort products they don’t carry that I take with us. Each of them I label, so it’s obvious they belong to us. By the time I load our van to leave, it appears we’re moving in (or out).

 

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.  Here are some helpful stress management tips.

  1. Get to the bottom of what is really stressing you out. Don’t allow yourself to make up a simple explanation like, “my life is crazy.” Figure out what are the things in your life that trigger your heart palpitations and stress sweats. Try keeping a stress journal or find an app on your phone that’s easy to use and track the following:
  • When you realize you feel stressed, write down what is happening in your life—everything you consider a task that “must” be performed.
  • Write down what you are telling yourself about those things that must be done. Example. What will happen if they don’t get done or do get done or someone else does them first?
  • How do you feel both physically and emotionally?
  • How did you respond when you started feeling stressed? Did you do something, say something, call someone, emotionally react?
  • What did you do to feel better?

After you do this a few times, look for patterns of behavior or stories you might be telling yourself that could be contributing to your reaction.

  1. Although stress reactions occur involuntarily, you can learn to control them to some degree. You can learn what triggers stress and master your responses to the encounters you have with those triggers. When you confront a trigger, you can learn to respond in a controlled manner and reduce stress.  Once you learn to handle the reaction by either changing the situation or changing your reaction to the situation, you can choose to avoid, alter, adapt, or accept the trigger.

Avoid: You shouldn’t avoid a situation that needs to be addressed. When you avoid a situation, all you’re doing is putting off the inevitable and allowing it to fester and become worse. However, sometimes avoiding a situation can eliminate it.

Here are some examples:

  • Learn to say “no.” Know your limits and stick to them. Learn to distinguish between what you think you “should” do and really “must” be accomplished, or something negative will occur.
  • Avoid people who stress you out. Limit the amount of time you spend with them or stop seeing them.
  • Control your environment. If the news makes you tense, don’t watch it. If driving on the interstate gives you a headache, take another route. Hate to grocery shop; do online shopping.
  • Trim down your to-do list. If you’ve got too much to do, get rid of tasks that aren’t essential or ask someone else to do them for you.

Alter: You may not be able to eliminate or avoid something complete but look at how you’re accomplishing it. Is there a different way to do it that is easier and less stressful?

  • Learn how to become comfortable expressing your feelings instead of holding them inside. Try sharing with someone you trust how you feel about something you have been holding inside. As you become more comfortable sharing with a trusted friend, begin to speak up more with others that you need to tell how you feel about a topic of concern. Work on speaking up for yourself in a respectful, non-aggressive using words that clarify your meaning and express a desire to inform rather than harm.
  • Be willing to compromise. Be willing to change if you want someone else to do likewise. If you both are willing to bend at least a little, you’ll have a better chance of finding a happy middle ground.
  • Create a balanced schedule with periods of work and family life, social activities, time alone, daily tasks, and downtime.

Adapt: If you can’t change the stressor, try to change your expectations and attitude to obtain a sense of control.

  • Try to look at events from a more positive perspective. Rather than get upset about being in a long line, put in your earbud on your phone and listen to your favorite radio station.
  • Look at the big picture. Take perspective of the stressful situation. Ask yourself how important it will be in the long run. Will it matter in a month? A year? Is it really worth getting upset over? If the answer is no, focus your time and energy elsewhere.
  • Adjust your standards. Perfectionism is a major source of avoidable stress. Stop setting yourself up for failure by demanding perfection. Set reasonable standards for yourself and others and learn to be okay with “good” rather than striving for “flawless perfection.”
  • Practice gratitude. When stress is getting you down, take a moment to reflect on all the things you appreciate in your life, including your own positive qualities and gifts. This simple strategy can help you keep things in perspective.

 

  1. Exercise is a great stress reliever. Since many of us have no time to go to the gym or the money for a membership, here are some tips for getting your body moving to help with using exercise as a stress reliever.  A good goal is 30 minutes or more of exercise several times a week, but if you have never exercise, start gradually and build up to what you can tolerate. Just move. Here are some suggestions on what to try.
  • Take the dog for a walk.
  • Walk the aisles at a store.
  • Walk around your neighborhood.
  • Dance to music as you clean your house or do chores.
  • Use stairs instead of the elevator.
  • Park your car in the back of the lot to walk to work.
  • Get an exercise buddy to hold you accountable.
  • Play ping-pong or another activity with children.

 

  1. Connect to Others

One of the best ways to relieve stress is to have a close friend to call. When something is weighing on your mind, the thoughts keep rolling around inside, creating more pressure and weighing heavier with each review. However, it’s amazing how sitting down with a trusted friend and sharing your burden over a cup of coffee, or iced tea can release all that pressure like a balloon that’s been deflated. After a good heart-to-heart talk with a close friend, I feel ten pounds lighter walking away with the pressure gone that weighted me down going into the conversation.

Talking to a trusted friend who helps you feel safe and understood triggers the release of hormones the counteract the body’s response to the fight-or-flight response we have when we feel threatened. In addition, the same hormone helps reduce feelings of depression and anxiety. The best part of this news is that you benefit even if the person is just a good listener.  They don’t have to offer you any good advice or fix the situation for you. They just need to care and listen.

If you have difficultly building relationships, try some of the following:

  • Reach out to a colleague at work.
  • Help someone else by volunteering.
  • Have lunch or coffee with a friend.
  • Ask a loved one to check in with you regularly.
  • Accompany someone to the movies or a concert.
  • Call or email an old friend.
  • Go for a walk with a workout buddy.
  • Schedule a weekly dinner date.
  • Meet new people by taking a class or joining a club.
  • Confide in a clergy member, teacher, or sports coach.
  1. Find time for yourself.
  • Set aside time for yourself to relax and rest each day so you can recharge your batteries.
  • Participate in leisure activities that you enjoy daily. Occasionally, set aside a date night for yourself – a special night where you take yourself out for a special occasion alone or with a person of your choosing to do something unrelated to caregiving.
  • Keep a sense of humor. Learn to find humor in situations. The act of laughing is a huge stress reliever.
  • Learn some stress reduction techniques that you find comfortable and helpful. Some people enjoy yoga; others like mediation or deep breathing exercises. Explore different types of relaxation practice to see which appeals to you and give a few a try to see what helps the most.

 

  1. Manage your time better.

Over-committing leads to exhaustion, depression, and feeling overwhelmed.  You can’t focus on any one thing; therefore, you make mistakes and lose things. Trying to keep up, instead, you make things worse by skipping meals and sleeping less. Instead, what you need to do is learn to manage your time better. Here are some ideas:

  • Don’t over-commit – avoid scheduling too much in one day or scheduling appointments back-to-back. You know doctors always run late!
  • Prioritize tasks and do them in order. Do the things you dread the most first to get them out of the way.
  • If you have a big project to do, break it up into several small ones. You will feel a sense of accomplishment each time you finish one of the steps toward reaching the goal of finishing the entire project.
  • Delegate responsibility. Let someone else help. I know you can do it better than anyone else, but does it have to be perfect? It just needs to be correct.

 

  1. Maintain balance with a healthy lifestyle.

Besides exercise, other healthy habits will help you feel better. If you feel better, your life feels less stressful. 

  • Eat a healthy diet.
  • Reduce caffeine and sugar.
  • Avoid alcohol, cigarettes, and drugs.
  • Get enough sleep.

 

  1. Learn to relieve stress in the moment.

When you feel stress coming at you like a freight train, what do you do right then? How do you handle it? Try this.

  • Take a deep breath.
  • Look at a favorite photo, an object, view outside, or something.
  • Using all your senses, concentrate on what you see, taste, smell, hear, or touch. Focus in completely on that object so that nothing else exists for you in that moment—just that object—as you continue to take, slow deep breaths.
  • Do that until you feel yourself calming and relaxing.

 

https://www.helpguide.org/articles/stress/stress-management.htm