The Sun Always Rises and It’s Always Beautiful

   Our journey together toward his death was both uplifting and devastating.  By the end of that long road, though physically exhausted and emotionally numb, I realized that path had its own purpose.  I would do it all again without hesitation.  But this time I would not be so stubborn.

If I only knew then what I know now.

Hindsight is a valuable tool to rediscover the value of hope.  On a St. Jude’s Hospital commercial, a child cancer survivor says “hope is never ever giving up.”  Unfortunately, caregivers are often thrown into their roles without any advance notice and with little experience.  It’s truly a “learn as you go” adventure. At times, the burden can be overwhelming.  Caregiving can be a few weeks, a few months, a few years or even a life time. Giving up is not an option.  But there are so many small things I could have done differently from the beginning that would have made a huge difference.  It would all begin with a change in attitude.

Take care of yourself first. 

My home care team often reminded me to take care of myself first.  It was difficult to understand how anyone could think caregiving would be a heavier burden than suffering with a disease and facing death.  In my imagination, I covered my ears as I screamed at them for offering empty platitudes.  It felt selfish to take time for myself when my husband required so much care.  After all, he was the one suffering…not I.  I was strong, relatively healthy and knew that no one could care for him as well as I could. I needed to show my love for him by drowning myself in his care.

Fortunately, something beautiful always happens when your world falls apart.  I emerged with a new humility.  I can now understand that my hidden emotions, while normal, were clearly self-destructive.  My insight deepened with the experience of walking through that valley.  I can now integrate the lessons learned.  It is clear to me now that our 51 years together spoke loudly of the love we shared.  There was no need to prove it again by an over-zealous devotion to his care.  I can see now that I caused him anxiety and guilt when he saw me overburdened.  He blamed himself for his illness causing this stress in my life.  I felt weak at first in asking for help.  In hindsight, he benefited from having other people around him besides myself.  The activity and conversation brought a sense of normalcy to his life.   Our time together became less focused on ‘guilt and anxiety’ so we could enjoy the beautiful moments left to us.  I should have accepted help sooner rather than later. 

It is human nature to do everything you can to ignore a fresh wound in your heart.  You’re afraid you may stop breathing if you let the pain in. You pretend it isn’t happening.   It’s easier to not focus on emotions tearing through oneself by hiding in the details of caregiving.  Caregiving can become a ‘shield’ from the pain.  Now I am personally dealing with painful and debilitating autoimmune diseases.  I’m still suffering from physical exhaustion and lack of focus. I walk with a cane.  I fight feelings of agoraphobia from being housebound those eight years.  Two years later, I’ve become a statistic. My doctor says to me, “Be patient.  You have exhausted your entire system.  It will take time to heal.”  Realizing how forcefully I held onto ‘my shield,’ I invite you to learn from my mistakes.  I’m a survivor.  I’ll make it through.  I wish the same for you.

An Ohio State University study in conjunction with the National Institute on Aging has shown that caretakers caring for chronically ill patients may have their life span shortened by four to eight years.  In addition, they suffer from depression and auto-immune diseases.    Other statistics show that 30% of caregivers die before those for whom they are caring.   

With experience, my perspective on caregiving and life in general has evolved.  I don’t think we truly comprehend at the moment of a particular experience the intenseness of all the activity going on inside ourselves as we grow from who we were to who we have become.  I came out the other side with a wounded heart and worn body but with a fierce determination to embrace every single minute left to me.  I fully understand self-care now. Self-care is many things: from eating well, sleeping well, taking a break or a walk, enjoying precious moments like graduations and birthdays, going to lunch with friends exploring new relationships or just sitting on the porch reading a book…all without guilt.  Self-care also includes allowing yourself to “feel” your life while you’re in it.  Put away your ‘shield’ and know the sun always rises tomorrow and it is always beautiful, regardless of the burdens you carry. 

Embrace your team.   

Your home care team is there to help you.  They are knowledgeable, efficient and supportive.  That’s what you need right now, even though you may feel like your home has been invaded by stranger.  Unfortunately, privacy suffers when we become caregivers.  Our homes become “Grand Central Station” for medical staff, family, friends, caregivers and others who gather to help us.  Accepting help often involves sharing feelings, space, personal issues and sometimes even financial information.  It’s a trade-off worth making.  Accept that your team has your best interest at heart.  These folks will be your lifetime for the foreseeable future.  Try to view your home care team as you would a group of friends; each has their own distinct personality, strengths, weaknesses, levels of life and professional experience and levels of personal stress.  But as a group, they provide a support system that keeps you healthy and sane.  When choosing privacy over support…choose support.  You will have too much time for privacy later.

Ask questions.

Your homecare team has the advantage of education and experience. They are trained to help you go at your own pace.  However, it is up to you to set that pace by asking questions as they come up.  They have probably come across the answer to your issues working with other patients.  They have ideas, tips and resources to guide you.   No question is too trivial. Just one tiny tip can make a huge difference to make your job easier. 

I’d like to share how one tiny tip made my life so much easier.  My husband’s choice of outfit during his illness was tee-shirt and gym shorts.  They were modest if visitors came, yet loose and comfortable.  He could venture out of the house without changing clothes.  They were easy to launder and easy to get on him after a shower.  What could be better?    

Eventually he became more disabled.  He struggled to sit up and lift his arms.  His easy-going choice became a nightmare as I leverage my body to hold him erect while pulling the tee-shirt over his head and straight behind his back. 

One day a nurse arrived for a medicine check just as I finished his bath.  She noticed my struggle with the shirt and quickly stepped in.  Grabbing scissors from her bag, she cut the tee-shirt up the back to within three inches of the neckband.  She laid him flat and gently pulled the neckband over his head.  Then she put his arms in the front, tucking the back in along his sides.  Problem solved! 

It made perfect sense now that I saw it.  By leaving the three inches of the neckband intact, it kept the shirt in position properly across his front.  It was easy to get on him and solved the problem of bunching behind his back when he squirmed in bed.  How cool was that?

I have to confess I’m a fairly good seamstress.  It’s not like I can’t figure out a pattern and use a pair of scissors.  So why didn’t I think of that?  Looking back, I now understand how stress and fatigue rob you of the ability to look at things from a different perspective.  I got stuck in doing things the same say.  It’s the little things that will stump you.

I still had one final question.  What took me so long to ask for help?    I could have saved myself a lot of self-sabotage if I had asked questions sooner.   

Blend flexibility and consistency for more efficiency.

It’s easy to fall into rigid patterns, trying to maintain perfection in an imperfect world.  In the caregiver arena, your days (and nights) become regimented by patient care.  There are medications to give, meals to prepare, baths to give, exercises and laundry to do.  The list is long.  Then plug in paying bills, running errands, personal doctor appointments and other family matters.  It would be nice to take a shower and sleep.   This is where a caregiver subconsciously foregoes self-care in favor of keeping up with the “to-do” list for the patient. 

And then, just when you have your well-thought-out plans in order, some random event will cause a schedule change.  It’s frustrating.  Even though you understand some changes are inevitable, it still feels like it’s the proverbial “last straw that broke the camel’s back.”  Your patient has a really bad day requiring extra care, the medication doesn’t get delivered on time, the washing machine needs repair, you come down with a cold… all make for a bad day.

It’s particularly annoying when a favorite homecare team member can’t come to work as expected.   Sometimes the people we are most attached to will change jobs or become ill, no longer available to help.  Because those people are “constant” in our lives, these particular changes are the ones that frustrate us the most.  We become emotionally dependent on the security that comes with familiarity.  That’s normal.

Understand human resource issues around caregiving. 

There are two ways to address hiring help for homecare. 

1. First way: Advertise for a private person, interview prospects, run background checks, and decide who is the best fit. Then you must secure background and drug tests for the safety of the patient.  Once you make a decision to hire, you are in charge of training, supervision, payroll and taxes, etc.  You will be assured of having the same helper every day.  However, you may need to hire more than one to provide the care required for your particular situation.  The downside is that you carry the extra burden and expenses of being an employer.  That may include extra liability insurance, if you aren’t covered by your home insurance policy.  If the employee(s) gets sick or doesn’t show up for work, you and your patient are left without support…often in crucial times.  To find another employee(s), you must repeat the process.

2. Second way: Call a homecare agency such as the one I used. (Promise of Morning, POM.care) Generally, companies have similar policies developed from years of experience.  They are well-regulated and must adhere to guidelines.  From my own experience, I interviewed a few before I settled on POM.  I explored their policies, business practices, attitude, references and costs to determine the one I felt could work with the best.  Once I made the decision, the staff immediately arranged a meeting with me to discuss my situation in depth.  They swung into action to select helpers that could provide the care that would best serve my needs.  POM handled all personnel and payroll issues, including interviews, background checks, scheduling, training, employee drug and health screening and supervising the employee by monitoring their work closely.  They are insured and bonded.  As an equal opportunity employer, all homecare workers are carefully vetted and hired based on education, experience and references, regardless of sex, race or national origin. Most importantly, there was comfort in knowing the quality of the people coming into my home and knowing that if one helper couldn’t come to work for any reason, there was another competent worker familiar with my case.      

My idea in the beginning was to have one dedicated homecare team member to protect me from dealing with multiple personalities.  I wanted the same person that knew the intricacy of my husband’s particular personality and needs to be the provider of consistent care.  I didn’t want to talk new people through the process each visit.  Simple inquiries like:  where is the thermometer, does he like bananas, can he swallow his meds, can he be left alone, etc., drove me nuts when I was tired.  Of course, my husband had his preferences also and put pressure on me by saying, “I only want this helper.” These are normal reactions for a caregiver and the patient.  I didn’t understand at that time that there could be better ways to address issues of privacy, consistency and training. 

Nearly all experienced personnel will tell you that it’s safer and more efficient to train multiple helpers.  Those team members will train each other.  Other organization and communication tips (listed below) contribute to smooth transitions between staff.  More eyes on the patient assures there is less danger of little things slipping through the cracks.  Different levels of training, experiences, talents and personalities offer extra insight.  Utilizing all assets also provides variety for the patient and caregiver which, in the long term, contributes to a sense of normalcy.  It helps prevent isolation.  It’s healthier for the patient to bond with multiple homecare team members to stave off feelings of lost connections and insecurity. The old cliché is valid here, “Life goes on,” if a particular helper is absent.     

It’s important to remember the humanity of homecare team members as they often go to great lengths to avoid disruption to patients.  They understand the dynamics of caregiving so they empathize with the connection you feel.  They feel it, too.  It’s not unusual for dedicated helpers to put their own personal needs on the backburner to serve clients.  After many months of caring compassionately for a patient, it’s not unusual for them to experience a grieving process at their deaths.  It’s the company’s job to protect the employee’s emotional health, as well as their physical safety, to prevent worker burnout.

During the last six months of my husband’s life, I experience six deaths of dear ones:  a best friend, mother-in-law, two beloved nephews, a close brother-in-law and my husband.  It was heart-crushing.  I can only imagine how hard it is on homecare workers who put their hearts and souls into caregiving, only to suffer loss over and over again.  It’s important for all of us to realize we have a responsibility to those who choose careers that support us in our hours of need, even if it causes ourselves a bit of inconvenience. 

Work/home life is always a balancing act.  Employee’s lives require re-adjustment from time-to-time.  Your ability to understand why it is necessary and even healthier to establish working relationships with multiple helpers is critical.  It leads to security for both sides.  It’s reassuring to know there will always someone with whom you feel safe who can support you long-term.  It’s also reassuring to the homecare team member that, in the event of their absence for illness, family issues, bad weather, etc., your care will continue.   

From an administrative perspective, it is a company’s duty to ensure that your service is uninterrupted on the assigned hours. This can only be accomplished if team members are already familiar with your situation.  This requires your cooperation for multiple team members to share the responsibility of your assignment.  Flexibility and consistency are required from us all for the benefit of everyone involved. 

It’s helpful when you also understand that most homecare team members have other patients to attend, as well.  Notify the office as soon as you are aware you need a schedule change, an unscheduled break, additional hours or in the advent of an emergency hospitalization of the patient.  Advance notice allows everyone to reorganize and coordinate schedules in the most efficient manner.  Ask your company about their particular policies and follow them as closely as you can. 

Communication is key.

Good communication is key for several reasons:             

• It relieves you from the mental stress of trying to remember every detail.
• It helps organize and motivate the patient.
• It keeps track of medical and dietary changes.
• It preserved a “record” for future reference.
• It acts as a “things to do” list.
• It prevents having to discuss patient care details in front of the patient.
• It utilizes your helpers time and talent.
• It saves you time.

Develop good communication skills.   

The devil is in the detail when it comes to communicating with all the people on your care team.  It could be two homecare team members providing personal services or it could be an extensive team that also includes doctors, nurses, physical therapy, occupational therapy, respiratory therapist, mental health or pastoral care. They all will ask for the same detailed information to make all-inclusive evaluations on the patient wellbeing and treatment.  How do you keep track of all this information without trying to keep it all in your head?    

1. Tape a schedule of patient activities in a convenient place. The refrigerator is handy. It coordinates homecare workers by providing a checklist of preferred activities.  Mobile patients often refer to the list updating themselves on the day’s activities.  It can help the caregiver get patient cooperation to accomplish daily activities.  (See Example)

1. Hang a dry-erase board in a central location. It’s easy to delete and add changes making it an ideal place to leave notes between yourself and the caregiver. It provides flexibility for last minute requests.  (See example)

1. Keep a spiral-ring notebook/pen to notate patient observations. Patients often react to people around them invading their privacy by discussing every detail of their existence and healthcare. After all, the patient’s dignity has to be respected.  Using written communication allows the care team to communicate without making the patient feel on display.  It provides an efficient transition between homecare team member shifts.  It helps differentiate between minor and major information that can be shared appropriately.  Not eating lunch is a minor issue.  But refusing dinner and then breakfast the next day alerts you there could be a medical issue brewing.  Each page should represent a new day.  Provide a new spiral-ring notebook for each month (file the previous notebook away for reference).   Use a paperclip on the page you are currently using to find the page quickly.  (See example) 

Proper tools make the job easier.

It’s common for patients to deny the need for health aids.  Whether it’s a sense of pride or independence, folks can sometimes be their own worst enemy in this respect.  They fear aids will make them appear different or old.  The roll of a caregiver is to keep life as normal and comfortable as possible for as long as possible.  Aids can lead to enhanced independence and quality of life for both patient and caregiver.  Falls and other accidents can be avoided.   

There is always a time lag in prescribing, ordering and installation of aids so ask about them at the first sign of disability.  Act early when your patient exhibits weakness or avoids activities because of difficulty leaving the house, getting up and down, in and out of bed or into the shower.  If the patient is in denial, sit the aids in the corner in the patient’s line of vision.  Give the patient time to settle his/her own mind on using them.  On the right day, the patient will use them willingly.   If the patient’s diagnosis indicates a progressive disability will be inevitable, it may require larger adaptations such as remodeling a bathroom that could take even more time.  Be proactive to avoid long-term inconvenience.

Occupational and physical therapists are great at helping you find ways to make life easier.  Aids allow you both to save energy and strength for more pleasant activities.  Using them in incremental stages earlier rather than later as disability progresses will promote healthy self-care.  Every patient is unique, requiring different types of aids.  Check insurance and community resources to help with securing aids.  See examples: 

• Hospital bed: The term “hospital bed” conjures up visions of an invalid in a hospital atmosphere. A friend, a stroke patient with paralysis on his left side, slept for a year in his recliner because he could not get in and out of his regular bed. He said, “I’m not ready to get in a “hospital bed,” although he suffered from sleep deprivation.  After he realized how the bed could help him maintain his independence years longer, he was agreeable to the idea.  He could adjust it to his correct height.  He could us side rails and overhead lifts to turn over at night and get in and out of bed with minimal assistance.  With a side table, he could reach his phone, monitor and other personal items by his side during the night to relieve his feeling of helplessness. Within one week of transitioning, he admitted it was his mental attitude towards anything “hospital” that prevented him from accepting the benefits of the bed.  His wife had already suffered a broken hip by losing her balance moving him around.  The initiative of self-care aids protects caregivers as much as the patient.     
• Bed table: High tables on wheels that fit over or beside the hospital bed allow the patient to reach his daily items. It provides a high place for feeding, medications, bathing or shaving equipment. Using height appropriate items avoids caregiver fatigue.      
• Risers: When my husband first had trouble lifting himself out of the recliner, my son-in-law built a 6-inch wooden platform secured with hurricane strips to the chair platform. Different types of risers for chairs and beds can be purchased, as well.
• Stand assist: Risers worked out well until he could no longer lift himself with his leg strength out of a sitting position. Then the stand assist was very helpful, providing more self-care.
• Handle extenders: Long handles that fit over recliner levers so patients can reach the lever.
• High commode: 21” commodes are an easy and relatively inexpensive comfort change. I ended up changing all the commodes in the house because the family liked them so much better. 
• Bedside commode: Walking to the bathroom during the day is helpful for keeping up the patient’s strength. However, during the night, medication and drowsiness can cause a patient to fall.  Using a bedside commode prevents injuries.  Get one with a lid so it can be used as a bedside stool for putting on shoes, etc., during the day.  It is sturdy, height appropriate, has arms for security and easy to move around.  Covers can be purchased for them to hide the look of a “toilet” in the room. 
• Shower: Review your bathing situation. Even if it works for the patient now, consider how a patient can navigate using a walker, a wheelchair or is bedridden. If you can’t wheel a patient into a shower in a transport chair without running over doorways, cabinets or walls, you need to rethink your long-term plans.  Remodels take time to complete.  Be sure to measure carefully as looks can be deceiving.  Get help from experience people to lay out the plans because costly mistakes can be made.  Funds may be available through VA or other agencies to help with expenses.
• Shower gurney: As my husband became bedridden, his best treat was to be lifted into a shower gurney and wheeled into the shower. It felt so invigorating to him to be clean, relaxing as the warm water poured over him.  
• Safety Bars: Install safety bars beside commodes and in showers. Think outside the box as they are handy for other places, as well.  For my stroke friend, a safety bar was installed beside his den window where he could pull himself up from his wheelchair to look out over his farm and cattle. 
• Leg Straps: These are basically Velcro bands that go around the thighs above the knees. They are handy in helping to lift the patient’s legs in and out of the car. 
• Walk assist: This is a safety strap that goes around the upper abdomen. A caretaker can support the patient by walking behind them, holding onto the strap to prevent them from falling.  It helps to assist a person out of a chair or out of bed.  It prevents bruises from trying to hang on the patient’s arms and torso to assist them.
• Reacher: This tool allows a patient to reach up and down to bring small things closer to themselves. It prevents falls from patient’s getting dizzy from bending over and flexibility to patients unable to bend and stretch.    
• Seat belt extensions: These allowed him to buckle his own belt, and later allowed us to reach around him to buckle it for him. These were so handy I still use them today, especially with the children’s car seats.
• Transport or wheelchair: Transport chairs are light weight and narrow so they are easy to put in the trunk of the car or go through doorways at home. They are not as comfortable for long-term sitting but very helpful in day-to-day living.  When my husband was too weak through the parking lot at the park the Little League games, the chair allowed him to continue to cheer on the team.   Wheelchairs can be personalized to the needs of the patient.
• Entry ramps: Walking up and down a gentle slope is much easier and safer than climbing steps. As my husband progressed from just unsteadiness to walker to wheelchair, we already had the ramp in place to the front door.  You may consider adding a small ramp from the garage floor into the house or from a back porch or patio so the patient can enjoy outdoor living. 
• Stair lifts: These lifts help patients who have an upstairs or a basement. An electric chair allows the patient to gain access to hard-to-reach areas.
• Elevators: If one is fortunate enough to design a new home or do a comprehensive remodel, a home elevator could be an option. Just make sure it is large enough to accommodate a gurney from an ambulance service to retrieve a patient from those areas.    
• Clothes: Try pants with elastic waistbands and shirts with Velcro or pull over shirts to allow room to move. Avoid fitted clothes as they are very difficult for stiff-jointed patients to wiggle into. Think loose, not snug.  Some ladies prefer loose smocks rather than stepping into pants.  The easier to get into and out of the better.   Look for loafer-type house shoes that can go indoor or outdoor or shoes with Velcro.  Safety socks are a good option for walking around the house and warming feet.   
• Electric toothbrush: The weight of the brush along with the automatic movement saves patient energy and helps with coordination, whether used by patient or caregiver.
• Weighted utensils: These help with coordination and grip to add feeding independence.
• Adult bib: This is one of the best tools as it saves a lot of cleaning up and changing cloths.  
• Office chair: Using a padded high-backed office chair that swiveled on casters allowed us to turn his legs around and pull him up to the dining room table for meals. The back and arms provided security and comfort. The arms gave him support to stand up.  Be sure to always support the chair from behind as the patient sits down to prevent it from rolling backwards.
• Three-way baby monitor: A monitor allowed us to communicate when I was out of his room. I felt secure in leaving him sleeping while I worked in other parts of the house, went to the mailbox or rested on the back porch.  We could talk to each other via the intercom function.    
• Hoyer Lift: I didn’t know a Hoyer existed before our physical therapist ordered it for us. It was a life saver during the later days. We used it to move him from bed… to recliner… to shower chair… back to bed.  We lifted him to straighten the sheets or change his position in bed.   Otherwise, he would have been completely immobile.
• Basic supplies: It is handy to have your own blood pressure cuff, thermometer, oxygen/pulse monitor, pill crusher/splitter, heating pad, etc.

Consider decluttering.

Perhaps the hardest chore is rethinking our living environment.  Most of us have worked years to get our homes just the way we want them.  We naturally resist making changes at this late stage.  However, our lives have changed.  We are no longer the people we were before this disability.  Trying to integrate more people and equipment into already-cluttered lives that no longer fit you anyway creates a sense of being out of control.  I personally tried to survive by making small accommodations here and there.  Eventually, I was so cluttered I was uncomfortable in my own surroundings.  I couldn’t find a thing, let alone tell someone ese where to find it.  It all added to my stress.  Now I realize I should have used a “starting over” approach.   (See examples)

• Consider your changed lifestyle. If you are no longer able to play golf, it’s time to get rid of the clubs so you can get the car in the garage. If you no longer host large dinner parties, it’s time to par down the large serving pieces in the dining room.  If you have read all the books in the bookcase.  The bookcases would make a great place to organize patient supplies. 
• Pass antiques and unused items on. Children and grandchildren may have an interest. They will enjoy them more while they are still young. 
• Sell other antiques and unused items. Use the funds for other expenses in your future.
• Rethink areas where the patient will spend most of their time. If you have to move items out of the way every time you pass with a wheelchair or it’s a huge deal to sweep, vacuum or mop floors due to the amount of “stuff” in the way, it’s time to get rid of “stuff.” Try to minimize time spent housekeeping.
• Clean up flat surfaces like table tops, counter tops and vanities because you will need clean surfaces to hold trays of food, drinks, medical supplies, etc. while caring for the patient. Save time on future cleaning and organizing by doing it now.  Check cabinets and closets for all those things you stashed away and forgot. 
• Designate a central area for patient supplies. Appoint a single closet, bookcase or chest near the patient care area to organize the multitude of patient items that will accumulate. The care team needs one control area for patient care items, such as:  patient clothes, sheets, mattress pads, blankets, bed pads, personal urinary pads, bed pans, blood pressure cuff, thermometer, medications, bandages, cotton tips, tubing, electric pad, body washes, lotions, physical therapy equipment, other aids, fiber, glycerin suppositories, saline enemas, wash clothes, towels, body washes for bed baths, medical information folder with important telephone numbers in it, etc.   All over the house is not an option!  This gives you the freedom to not be available to find stored items.   
• Provide patient access to communication. Contemplate installing a computer, phone and TV in an area where the patient can access them. The patient may request a TV and phone in the bedroom, if the patient is bedridden.  Access to the outside world is very important. 
• Rethink the use of your space. Living rooms can become patient areas. Bedrooms can become sitting rooms.  Dining rooms can become office space. Accessibility is important.  Many wheelchairs and ambulance gurneys can’t fit now a narrow hallway and make a right turn into a small bedroom in case of an emergency.  Another room may be more accessible for the patient than a bedroom.  It’s more important for the patient to maintain family contact than to have a perfect designer house.  My mother refused to be hidden away in a back bedroom.  Her hospital bed was set up along triple windows in a den that looked out over the back yard.  We installed bird feeders outside the window and planted a flower garden within her line of sight.  A sofa bed was added for when she had visitors or we wanted to sleep in the room with her.  It allowed Dad to spend his evenings in his recliner watching TV with her before he went to his bedroom.  It helped her stay involved with the family as long as possible.
• Think about transportation. Is your patient mobile? How difficult is it to get in and out of your vehicle?  Stepping up or sitting low creates a disadvantage for most patients.  Can you easily get a transport chair in the back?  In lieu of changing your own vehicle, there are services available that will take you to and from doctor appointments. Research them ahead of your transportation needs. Perhaps a child or friend has a vehicle that you can use to transport the patient or will drive you.  Can you pull a vehicle onto a level space that prevents a patient losing balance while transferring?  How will you transport in bad weather?

Automate everything.

Over the last ten years, our world has become automated.  I knew better ways existed but I procrastinated in taking advantage of them.  Do yourself a favor.  Be proactive in making your life easier.   

My pet peeve was mail clutter.  Every time family came by the mailbox, they checked my mail.  In truth, I would forget for days to do it.  I was grateful.  However, the mail got dropped in various places all over the house.  I was constantly picking up and stacking piles of mail.  Even as I dunked them all into a basket to await the first of the month, I felt overwhelmed.  If I was searching for a particular piece of mail, I had to dig through the entire month. 

Eventually, I learned to get ahead of the game.  I began using an app from my credit union that allowed me to add all the details for each creditor.  When I was ready to pay a bill, I opened the app and directed the credit union how much money to send.  I got a confirmation notice when the bill was paid.  Getting statement by email helped eliminate clutter. 

There were a few other activities I was able to schedule that helped me stay on top of my life.  (See examples)

• Reduce mail clutter. Change to online statements for both bills and medical. This requires you to have a smart phone or computer for email, which seems common today.  If you prefer to get paper copies still, paying bills online will at least allow you to pay the bill quickly if you pay the same amount each month.  Signing up for budget plans with utility companies allows you to pay the same amount each month. 
• Order prescriptions in three-month supplies whenever possible. Check your pharmacy to see if they deliver. Some pharmacies will coordinate your medications so they are all due for renewal on the same date. 
• Find support for outdoor chores. Make advance arrangements for a helper who will mow your yard and do small chores such as refreshing the mulch in your shrubs or taking your trash to curb. If you don’t have a family member with the time to help you, try asking around the neighborhood.  I was lucky enough to find a teenager who wanted a part-time job.  He dependably kept the little things done in the yard for a reasonable fee. This allowed us to spend a few quiet moments on the back porch swing enjoying the yard. 
• Make all your personal important appointments as far in advance as is feasible… now. Remember haircuts, medical, dental, visual, audio, dermatology, mammograms, or other annual tests. Self-care is important.  Plan for outings with family and friends.  Add important events like birthdays, anniversaries, etc.  It’s easier to stay involved when you don’t depend on how you feel at the last minute to make a plan. 
• Schedule patient appointments as far in advance as is feasible. Although these may be dictated by immediate health situations, planning ahead allows you to find transportation and make other necessary arrangements.
• Keep a central calendar. It’s important for all people involved to have access to the calendar. List all appointments and caregiver hours in a central location so all parties can easily schedule around planned activities without having to constantly reschedule appointments. Busy medical personnel involved in homecare often call at the last minute to schedule home visits.  Sometimes an aide or family member may give permission for that visit, only to find out the you or the patient has already scheduled an appointment for that same time.  Coordination is important.    
• Update your address book. You may need current information about family and friends at a moment’s notice. Do it now while you have a few minutes. 
• Prepare greeting cards. Stay in touch by acknowledging birthdays and anniversaries of family and friends to whom you are attached. File them by month.  Each month, mail those cards to keep you in contact with those you love.  Keep a stash of thank you cards and stamps so you can quickly acknowledge thoughtful actions.   
• Schedule maintenance. Normal maintenance on heating, air conditioning and automobiles is less expensive than repairs.
• Organize and automate your finances. Automatically deposit resources. Have insurance and other important payments on autopay.  Save time and stress by streamlining as much as possible.    
• Prepare a General Power of Attorney. A well-drafted POA allows the caregiver to advocate for the patient. Without it, no one will discuss any personal. medical or financial information with the caregiver about the patient.  In order for you to handle caregiving effectively, you must put this in place immediately.  The general rules are: prepare the POA, sign before a Notary, file a copy with your County Clerk’s Office, retain the original in your files and make several copies as you may need them at a moment’s notice.
• Make a will. AARP reports that 45% of Americans 55 and over do not have a will because they haven’t gotten around to doing it. If you are one of those, now is the time to make a will. If you die without a will, the state will determine who inherits from you and that often leads to family battles.  Even if you have limited resources, make a will.  Free Will, Legal Zoom, Quicken Will-Maker, and Rocket Lawyer offer quick online services for free or low-cost services.  If you have significant assets, it is recommended to see an attorney as the lay person can easily miss something important.
• Prepare an Advanced Directive. These are documents stating how you want medical decisions to be made in case you can’t make the decision for yourself. It also states who you want to make those decisions for you.  You may allow your representative to override or change the directive.  
• Make funeral arrangements or prepare written instructions. These should not be part of a will as a will may not be read until long after a funeral. If a caregiver to have a heart-to-heart talk with the patient to discover the thoughts and wishes.  These talks can often be a bonding moment.  Do it while you can. 

Authored by Judy Harrison,

a marketing and public relations

entrepreneur with over 30 years

of caregiving experience. 

• Tips in this essay are meant to be informative in nature, do not constitute medical or legal advice and should not be construed in that manner.
• Free Will, Legal Zoom, Quicken Will-Maker, and Rocket Lawyer are online services found by Internet research. You may contact them at your own risk. Research carefully before entering into any agreement. 
• AARP is the American Association of Retired Persons, an organization that advocates for the elderly and community enhancement. You may find the organization at aarp.org
• Ohio State University and National Institute on Aging Study – a decades long study on stress affecting caregiver health article written by Earle Holland 8@osu.edu

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