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The Heart of Caregiving, A Guide to Joyful Caring

Introduction to the Dual Six Principles of Care

You have two hands. One hand to help yourself, and the second hand is to help others. ~Unknown

When we place our hands together, we balance the outward flow of energy, giving care to others with the inner flow energy, of self-care.

Keeping our hands close to our heart and mind, we balance the energies of our thoughts and spirit, while protecting our bodies.

We can provide safer, more consistently loving care, at the same time. I invite you to be with each chapter to learn and practice the gems of self-care, along with the caregiving tips.

Nursing, especially my hospice experience, has taught me that being before doing helps me to have more of what I want in my life.

BEing, Before DOing, Helps me to HAVE more of what I want in life.

When we treat ourselves with respect, as a caregiver, we all benefit from optimum care.

This is the “How To” of forming a secure and rewarding caregiver-client attachment. I developed a caregiving strategy that bridges the best of analytic and relational psychology with the every-day physical needs of clients and families in practice.

The art of caregiving reaches deeper than good communications theory, into the nitty-gritty of emotional release, safety and connection.

Six dual Principles of self-care and caregiving:

FIT-DIGNITY FUN-INDEPENDENCE FREE-SAFETY FAMILY-COMMUNICATION FINANCE-INFECTION CONTROL FUTURE-PRIVACY

DISCIP-line and the meaning of your Right Hand

The principles that guide the discipline of nursing are held in the right hand. The bottom line thinking to provide this discipline, consistently, may be spelled out to help remember them. These bottom line principles of DISCIPline may be applied to any situation and may be easily remembered. The last four letters of discipline rest upon the right wrist and the “DISCIP” in the palm and on each digit of the right hand represent the six principles of caregiving; dignity, independence, safety, communication, infection control, and privacy.

See the photo of right hand and the video link below or go to author’s website.

Dignity is held in the palm of the right hand. Respect is the center of all caregiving.

Independence is represented with a thumbs-up for what you are able to do for yourself.

The pointer finger represents safety, just like when your teacher or mama may have shaken that finger in your face; it was a way to caution you and keep you safe.

The middle finger represents a very specific communication in some cultures. In this instance, it stands for and represents all communication.

The ring finger represents infection control. I experienced, firsthand, many a hangnail that turned into painful infections.

Last and not least, the pinky finger represents the need to provide a little privacy.

Peace and the meaning of your Left Hand

Your left palm holds peace and being FIT.

The left pointer finger represents gifting your time, attention, energy, thinking and being FREE of clutter, physical and mental.

The middle finger represents FAMILY, in the center of the left hand.

The ring finger holds the key to our FINANCES.

The pinkie finger holds and represents the FUTURE.

By taking tiny steps daily we can reach our bigger goals more easily.

In my experience, a positive mental attitude will bring success every time. Freedom from fear is very liberating and possible. Being present to the reality of the moment helps to shift away from the monkey mind of distress. Being in the moment, allows us to be able to take action and separates us from the paralysis of the negative thinking. Negative thinking examples are what-if and if-only.

An open mind on all subjects and toward all people is worth striving for. This self-discipline of openness will allow us to grow the wisdom of understanding people, while being engaged in the labor of love, caregiving.

Often we need to take time to reflect, realize and remember the strengths we have to offer. The willingness to share these blessings with others will best guide our actions and build our faith. This faith will grow our hope of future achievement and provide financial security.

Your caregiving can grow only as much as you do.

If you want to change your results, you need to change your thinking and actions. According to T. Harv Eker, our thoughts lead to feelings, feelings lead to action, action leads to results.

T->F->A->R

Results equal Health, Wealth and Weight

We live in a world of cause and effect, which is tempered by what we have seen, heard and experienced.

Emotions almost always win over logical thoughts and actions. With awareness, understanding, and choice we can choose, as many times as it takes to successfully change behavior.

If your motivation for caregiving comes from fear, anger or needing to prove yourself, your caregiving will not bring you happiness.

Are you ready to choose a new model of caring?

Try the following exercises. Remember a challenging caregiving incident, and write it down. Do you see how you have a choice now? Release and create new caring experiences.

There are no happy victims.

Complaining brings more to complain about.

Practice optimism.

With your hand on your heart, say out loud, with positive energy and zest, these statements:

I create my own level of happiness.

I focus on being responsible for my own happiness. I am an excellent caregiver.

I focus on opportunities versus obstacles.

I admire other successful caregivers.

What is your willingness to change?

Are you willing to grow bigger than your problems?

Be prepared to be an excellent receiver and you will become an excellent giver.

Do not limit your love.

Focus on the results. You can provide excellent care to others AND care well for yourself.

Thoughts are seeds.

Actions connect the inner thoughts to the outer results.

Caregiving becomes easier when you are willing to do what is hard.

When you are uncomfortable, you are growing.

¨Four positive T. Harv Eker quotes to post as reminders:

“How you do anything is how you do everything.”

“Where attention goes, energy flows and results show.”

“You can choose to think in ways that will support your happiness and success, instead of ways that don’t.”

“Training and managing your own mind is the most important skill you could ever own, in terms of both happiness and success.”

The heart of caregiving is a combination of optimum self-care and the important discipline of nursing. The discipline of nursing includes caring in a loving and professional way.

To harness our healthy caring we can provide consistent, effective care to our loved ones. We benefit, greatly, by discovering the balance and focus of providing optimum self-care.

Are You Ready To Grow?

We need to treat ourselves with dignity by providing for our own health, before we are able to provide care with dignity for our loved ones. To be well balanced and focused in life, self-care needs to be balanced with caregiving. Both self-care and caregiving, with awareness, need to be practiced consistently.

To give optimum care to our loved ones, all six dual principles of self-care and caregiving need to be practiced, regularly. The more you practice, the more skilled you become.

Each chapter includes dual principles of self-care and the mirror actions for caregiving.

Chapter 1 focuses on the first dual principle of being FIT for our own self-care and caregiving with DIGNITY. By focusing on our own mind, spirit and body needs we are more aware and able to assist the mind, spirit and body needs of the person we are caring for.

Having a system in place for this optimum self-care will save many a headache and heartache.

See the Tips at the end of each chapter for a proven success system. What works for one caregiver may not work for another. What works at one time in our lives may not work in another time.

Chapter 1 will begin to share the secrets of successful self-care and caregiving. To be FIT we need to balance all three parts of ourselves; body, spirit and mind. Our body, spirit and mind each need three things; fuel, exercise and rest. When our thinking is correct our success and happiness are nearby.

When we are in balance, our focus and caring are more easily maintained.

Start Your Day (or end your day)

Two thumbs up for remembering to have fun and spend 15 minutes writing, or enough time to fill three pages, and answer the following questions:

What Am I Grateful For?

What Do I Appreciate About Myself?

What Do I Appreciate, About My Life?

What is my Focus for Today?

How May I Remain Balanced?

How Can I Be of Service?

Left Hand: You, truly, hold peace in the palm of your hand exercise.

Whenever you are stressed, simply breath-in peace, with your left hand over your heart and breath out stress. Repeat this several times and you will find a moment of peace that you can return to at any time or place. Close your eyes, if this helps you to focus inside for a moment. Remember to make choices that feed your spirit.

Spirit

Our caregiving spirits may be fueled by special quiet or creative time. Often this refueling time is represented by creative space and meditative time. Meditative time can be simply breathing in and out with attentive presence. For some caregivers this refueling is being in nature and for other caregivers, it is daydreaming. Expression of our spirit through the art of making things with our hands can be very fulfilling. Reading something inspirational; like a story, a poem, a quote, or other inspirational guide, provides exercise for the spirit.

Inspiration may come from listening to music, watching a video or movie, praying, giving to others and simply being in community.

Sometimes, simply being aware of another person’s perspective can be uplifting. Resting our spirit by letting go, to a greater source, is healthy. In other words, acceptance can be a balm for the heart and soul. Spirit may be refilled in many ways; meditation, yoga, song, prayer, poetry, and nature are just a few examples.

In my own experience, our right hand brings us closer to our Godliness by serving others. Our left hand gives us strength to face each day, by grounding us with our own needs met.

Below are the words to Debbie Friedmont’s song, called The Angel’s Blessing. These words represent some of the ideas from The Heart of Caregiving.

“May our right hand bring us closer to our Godliness. May our left hand give us strength to face each day. And before us may our visions light our paths ahead. And behind us may well-being heal our way. All around us is Schechinah. May Michael be at my right hand, Gabriel at my left. Before me Uriel, behind me Raphael and above my head the divine Presence.”

Schechinah is the Hebrew meaning for the presence of God or ‘she who dwells within’. Angel Michael is known as the commander of God’s army, a person of authority; someone who can think and do. Gabriel is God’s messenger & has a horn for judgment day. Gabriel is at my left to assess if I am balanced and focused with my self-care. Uriel carries a light in his palm or flaming sword to light the way, representing our awareness. Raphael carries a trumpet and represents healing.

“I have had the honor of working with Sonia at Salinas Valley Memorial Hospital. She is the utmost professional, very compassionate and respectful of all patients and their families, as well as her coworkers. My husband and I had the blessing of her assistance during my mother-in-law’s illness and passing – we could not have survived without Sonia’s help. Sonia has always responded enthusiastically to my calls for volunteers to work in the community. Evaluations from those who participated always loved her knowledge and enthusiasm. She is a blessing and joy to work with.” ~Marta Martinez Fife.

Caregiver Asks: Will I Survive?

Overwhelmed caregivers ask, “Will I survive a caregiver?”

Maybe.

To know for sure, follow those who have walked in your shoes.

When you walk upon the road of caregiving do you have directions?

“Is there even a map?” you ask.

More “caregiving maps” are available to today than just a short decade ago thanks to books, support groups, online resources and interactive support, help lines, educational conferences, and retreats. It wasn’t always this way. Caregiving seemed to be a silent journey to be endured alone.

Early on, during my walk along the caregiving road, I lamented to my father’s attorney that caring for my father was the least of my burdens. Most of the weight I carried was his unresolved estate-related matters.

I hated that my father didn’t make decisions earlier. At age eighty-five he wondered why I was concerned. “I’m going to live another fifteen years!” he exclaimed.

A year later, when he could no longer live independently, my husband and I moved him into our home in California.

It fell on my shoulders, his conservator, to seek closure on the many unfinished and partial details he left on scraps of paper.

It wasn’t easy and my role drove wedges among my sister, brother, and I, which remain in place to this day; nearly a decade and a half later.

At $250 an hour, my father’s attorney shared two simple analogies:

You decided to pick up an acorn and instead got the whole oak tree!

You decided to pick up a grain of sand and instead got the whole beach!

In a strange way, the pictures he painted made me feel better.

Surviving caregiving is your choice!

Seriously!

Too many caregivers die prematurely during their journeys. Many die trying to do and be everything for their loved ones. Instead, they exhaust themselves to death leaving their loved ones behind.

To survive and even thrive you need to accept that you can’t do everything yourself.

In order to survive, thrive, and find JOY along the way, follow these three tips.

ONE: Take care of yourself first.

Dr. Dosa, gerontologist and author, includes this as the first tip for caregivers in his NY Times bestselling book, Making Rounds with Oscar.

You’ve likely heard this before. “Take care of yourself first,” is repeated in every presentation, educational session, and in helpful tips for caregivers; yet few of us heed this advice. Instead, we retreat from others and get crushed alone by the weight of caregiving. We slowly fall into depression, become ill, and some of us may even die.

If you want to survive, take care of yourself first; otherwise you won’t be around long enough to take care of your loved one.

Sometimes, all it takes is stepping away for five minutes. Other times, it means asking for help so you can take a day-long, weekend, or longer break to regain perspective and balance in your life.

Once you’ve committed to taking care of yourself in order to survive as a caregiver, take the next step.

TWO: Learn about your loved one’s disease or illness so you know what to expect.

Talk with others who are walking along the same caregiving road. Join a support group. Mine became my life-support group. You’ll be surprised how much you thrive as a caregiver when you have the support of people who speak the same language and shed the same tears (of JOY) as you.

As you learn what to expect, you’ll likely find that you have more options. Holly Whittelsey Whiteside advises in The Caregiver’s Compass, to be flexible in your approach. The more you are aware of who you are, your needs, and limitations, the more flexible you can be in welcoming the changes to your life that come with being a caregiver. Once you’re taking care of yourself and thriving as a caregiver, you may even find the JOYs.

THREE: Care for your loved one as you want to be cared for if you had the disease or illness.

Once you learn enough about your loved one’s illness or disease to walk in his/her shoes, you’ll discover a whole new way of caring with greater compassion. Surprisingly you’ll gain more strength, because your care is directed from an empathic answer to the question, “How would I want to be cared for if I had this disease or illness?” The honest answer to this one question will dramatically improve your approach to caregiving.

Little things will stop being as irritating. Instead, you’ll find more reasons to laugh as you journey forth with your loved one. You’ll find precious JOY in that moment when your husband, wife, or parent remembers you and calls you by your (correct) name.

Survive, thrive, and even find the JOY in caregiving following these three tips. They are not always easy to follow, but if you keep focused on them day-to-day, you’ll do much better as a caregiver than if you ignore them all together. I know. I survived, thrived, and even found the joy.

Eldercare and Caregiver Burnout – Your “Caring” May Be Contributing to Burnout!

Eldercare and caregiver burnout can be avoided by learning to manage your “caring”.

Family members are always happy to assist their aging loved ones. As the care giving experience begins, many family members choose to care for their aging loved one themselves. The caregivers are enthusiastic and energized. Caregivers experience personal rewards caring for their aging loved one.

Eldercare for an aging loved one can be unpredictable and intermittent. What once used to entail a few weeks or months now often extends for years. Recent studies show that the average duration providing caregiving is 4.3 years; and 29% of caregivers have provided care for longer than 5 years.

As your aging loved ones needs change, so do the responsibilities of the caregiver. As a consequence, the increase demand on the caregiver creates chronic stress.

Many caregivers believe that “caring” is giving attention, worrying about their aging loved one, avoiding saying “no” to any request and a feeling of always having to be available at a moments notice. Most caregivers contribute to caregiver burnout by not setting limits and boundaries, and avoiding the telltale signs of chronic stress.

Many caregivers believe that if they are not available to do everything for their loved one they will be perceived as uncaring. Caregivers often create a dependency between their aging loved one and themselves. This dependency is a bond that the caregiver eventually becomes to resent. Anger, depression, guilt all contribute to chronic stress.

More on Eldercare and Caregiver Burnout …

The most important thing a caregiver can do is to make themselves a priority. Experiencing the physical and mental deterioration of your aging loved one and feeling helpless and overwhelmed creates a scenario for a spiral into the caregiver becoming a patient.

The first step to avoiding caregiver burnout is to be aware of the signs of chronic stress.
The next step is to acknowledge those signs and take the necessary actions to explore options for remedies.

Signs of caregiver burnout are…

Difficulty with sleep, falling asleep, staying asleep
Feelings of fatigue, lack of energy (physical and mental) even if you had a good nights sleep
Easily becomes angered or unusually irritable
Difficulty focusing or making decisions
Feelings of anxiety, frustration, guilt, depression or grief
Feeling of hopelessness
Lack feelings of joy or moments of happiness or enjoyment
Neglected your own health and personal care
Have a chronic health condition
These are just a few of the signs of chronic stress and caregiver burnout. If you have experienced any of these for a period of longer than 2 weeks, or if your caregiving has interfered with you having any type of normal life, you should seek help.

It is important that you do not ignore the signs of chronic stress or caregiver burnout. Significant health consequences could occur from ignoring those signs.

There is good news about avoiding caregiver burnout. There is clear and effective treatment for chronic stress.

Take time to consult with your physician to get the proper care for yourself.

You must take care of yourself before you can help take care of others.

Stress relieving strategies that work involve rewiring your emotional responses to situations and to assist you in getting back to a more balanced life. Simply put, take the
negative energy or thoughts and replace it with positive ones. This take thought and practice, but over time can be an effective method for changing your perceptions and feelings.

Other strategies to utilize:

Acknowledge that you are making a difference in someone else’s life. You are valuable and useful
Determine what is ultimately important and your goal for caring for your loved one
Prioritize and create a routine
Acknowledge you and your loved one have limitations. Forgive yourself and those around you for those limitations
Do not hesitate to request assistance from others. It will make you a healthier and happier caregiver
Research community resources
Make yourself a priority
Learn to take time and relax, and have some fun along the way
Take a break when necessary-and be aware of when you feel a need to take a break
Use relaxation techniques
Stay connected to family, and friends. Take time to enjoy activities with others
Talk out your feelings with others – Join a support group – Have a family meeting – Seek professional help or talk with your spiritual counselor
Eldercare and caregiver burnout is avoidable. Being aware of the signs of chronic stress and taking action to overcome the challenges of caregiving will lead to a healthier, happier quality of life for everyone.

Similarities in Caregiving Experiences

No matter what your partner has that requires a caregiver many of things that a partner caregiver goes through are the same. Every caregiver has feelings of frustration and even helplessness sometimes. Many partner caregivers have had to go through problems with a nurse or doctor that won’t treat them as a family member of the patient. Finally every caregiver has to figure out how to balance caregiving and being a partner. Fortunately these similarities can be good place to start when talking to other caregivers about your experiences.

Caregiving Feelings

I would be surprised if anyone’s goal in life was to have a partner that needed caregiving. Watching your partner fight something that will eventually kill them or that causes them to be in pain all the time is hard. It is easy to feel helpless when you just want to take it all away for your partner but all you can do is hold their hand and watch. It is easy to get frustrated when the medicines aren’t working or, even worse, the medicine is causing problems in other areas. These are just two of many common feelings that partner caregivers share.

Prejudice Towards Partner Caregivers

One of the worst things that a partner caregiver can go through is to not be treated as family by doctors and nurses. When your partner trusts you to be their caregiver then the doctors and nurses should respect that but not all do. This isn’t just a problem for caregivers. Most of LGBT community has to worry that they won’t be allowed to speak for their partner if something was to go wrong. There are quite a few people in the medical profession that won’t count partners as family and don’t want to talk to them.

My Personal Caregiving Experience

I often resented the times when I had to say that I was Dee’s caregiver just to get her medicines. If Dee was with me she usually pointed out that I was also her wife. I wasn’t just her caregiver; I had been her wife years before I became her caregiver (thanks to a little Vegas wedding). I was so proud of her strength and courage that she displayed while she was fighting her battle with a rare cancer. I just wanted to shout from the rooftops that this awesome woman was my wife but sometimes I had to hide it just to get her the things she needed with the least resistance. Talk about frustrating!

We were luckier than many couples. The Nurse Practitioner that we had seen for years never once questioned us going to our yearly appointments together and always answered any of our questions. Dee’s cancer doctor never once ignored my questions and understood that my answers to his questions where from the both of us. Of course once Dee filled out her Power of Attorney for medical decisions he didn’t have to worry about getting in trouble with his bosses. Still there were nurses in the cancer center that had issues with me answering questions about Dee’s care and medication and they would act like I wasn’t even in the room. Beyond making me mad, it would get Dee upset which in turn would make me angrier. She had enough to deal with battling her cancer and she didn’t need the extra problems of dealing with a discriminating nurse.

Balancing being a partner and a caregiver can be hard sometimes. After all there was a relationship before the medical incident or illness struck and hopefully it was a good one. Sometimes when a person gets sick or they are facing the end of their life, they get down right unbearable and they don’t want a partner anymore. Then you are faced with caregiving for the same person that you struggling with your personal feelings over. I have a hard time trying to figure out how I would feel if I’d had to take care of Dee while she was hollering at me or throwing things at me. I know that people have had to face this sort of thing with their partners and I have to thank my lucky stars that Dee handled it in a more positive way.

Share Your Experiences

There are probably many more similarities between partner caregivers then I have listed here. This wasn’t meant to be an all inclusive list but just a sampling to show people that they do have things in common with other caregivers. Hopefully if you haven’t already joined a community, you will consider doing so now. I had often wished that I had people to talk to who could really understand what I was going through. In fact Dee herself wished that I had people to talk to and even tried to convince me to start talking to one of my ex-girlfriends because she knew that we were friends who had lost contact. While it is too late for me now, I hope that my experiences can help other partner caregivers and that together we can support each other.

Family Caregiver Mediation

This is the sequel to the last edition’s Update on mediation. It explores family caregiver mediation. Caregiving is a rapidly increasing role for families, but it has been a popular topic of research for years. A critical role found in families does pertain to care and nurturance. The primary caregiver role generally falls first on the spouse, then an adult child, usually the daughter. Love, devotion and loyalty are frequent reasons given by primary caregivers for taking on the responsibility of care. Yet, studies have shown that a greater amount of strain results when the caregiver-recipient bond is strong indicating need for research on family discourse.

Common themes found in the caregiving literature are stress, burden, and most recently, conflict. Family relationships can provoke conflict; even more so in caregiving because family structures are so radically altered by the caregiver role. In the case of caring for Alzheimer’s patients, it’s the demand involved in round-the-clock caregiving which challenges the system and the response. Ultimately, the family’s functioning; its physical, emotional, social, and monetary resources are challenged by caregiving.

As noted in literature on caregiver mediation written by The Center for Social Gerontology in Ann Arbor, Michigan, “demographics illustrate the need for effective solutions for addressing and resolving problems that arise in caregiver situations. According to a recent report by the National Alliance for Caregiving and AARP, nearly one in four families in the U.S. are involved in caring for a friend or relative age 50 or older. Of these 22.4 million families, 41% are also caring for children under 18; almost one-third of the families provide care to two or more relatives or friends, and 64% of the caregivers are employed and trying to balance caregiving with work.

Pressures faced by caregivers easily erupt into disputes with the elder who requires the care or with other family members whom the caregiver may feel are not carrying their fair share of duties or who may disagree with the things the caregiver is doing, including how the elders’ money is being managed or spent. TCSG states, “in our extensive work on these issues, we have seen repeatedly that the pressures and demands of long term caregiving can, and all too frequently does result in two reactions. First, family disputes and conflicts get worse over time with the frail elder person who needs long term care being placed in the middle of the dispute. Second, petitions are filed, often inappropriately, to place the elder under guardianship, usually in the false hope that such court- ordered intervention will enable decisions to be made which will solve what are, in reality, family caregiver disputes; and with guardianship often being used to place the elder in a long term care facility, with the resultant loss of home, autonomy and dignity.

There is little doubt that caregiving is associated with increased family conflict and with heightened concerns and anxieties about neglecting other family members. In a report by Toseland others , “the “paucity” of family interventions to address these conflicts and anxieties is noted. Toseland et al go on to say that when family members are willing to participate, family counseling can be effective in addressing these issues.” TCSG’s literature notes that a largely unexplored alternative to counseling or therapy is mediation.

The Center for Social Gerontology was awarded a federal grant from the Administration on Aging (AoA) and a state grant from the Michigan Department of Community Health (MDCH) for a local and national multi-state family caregiver mediation demonstration project which was implemented last year. Susan Butterwick serves as Directing Attorney for the Caregiver Mediation Project. She states that mediation is not therapy or counseling. It is a one-time intervention to help resolve conflict and facilitate important decision-making in families about the care of an elder person, and it may be the most effective way of solving the dispute that is causing so much concern to the family members at the moment.

Mediation provides a unique tool in such cases for elders, families and caregivers to move beyond impasse into positive decision-making that meets the needs of all parties, while, in many cases, avoiding costly and unnecessary long term care services. Family caregiving mediation, like general mediation, provides a cooperative, non- adversarial setting for families to discuss their concerns in privacy and with confidentiality. The mediator serves as a neutral facilitator who has no connection to the case or situation The mediator does not decide the outcome or determine who is right or wrong; and there is no force on the disputing parties to reach agreement – it is a consensual process in which all parties must agree in order to have an agreement. The mediator listens to the concerns of all the parties and their ideas on how the matter might be resolved, facilitates the conversation, and helps the parties develop and agree upon a workable solution themselves.

Under TCSG’s demonstration project, the mediators have undergone additional specialized training in elderly, family, caregiver, and guardianship issues. Butterwick strongly recommends that mediators who work with this population take additional training in order to better understand the issues a mediator encounters when working with families, caregivers and frail elderly persons. Butterwick says the TCSG three-year demonstration project is now in its second year. To date, several families have been assisted in resolving difficult disputes and have reached decisions in mediation concerning family visitation, living arrangements, home repairs, financial arrangements, caregiver respite, and medical decision-making, care, and guardianship issues.

Karen L. Rice, LNHA, Gerontologist and Mediator is in private practice in Scottsdale, AZ. She serves as contract mediator and faciliator for OhioKePro; the CMS Quality of Care Mediation Initiative, Advisory Board member for SeniorLink of Boston, and internationally, works closely with Canada and the Alzheimer`s Society on education and certification for mediators, the development of the International Elder

Caregiving For Alzheimer’s is a Thankless Task

Caring for someone with Alzheimer’s is quite literally a thankless task. Which is not to say that it’s unappreciated, but aside from the first few months of an early diagnosis, Alzheimer’s sufferers are generally oblivious of their own condition and naturally cannot comprehend the sacrifices made by their loved ones to provide care and keep them healthy?

But please don’t read the above as being a condemnation of the unfortunate souls that have no control over what has happened to them. Clearly, the tragedy of Alzheimer’s is that sufferers very early on “forget” they are ill. Rather read it as a recognition and acknowledgement of the selflessness and integrity of their caregivers. I say this because I think something happens in the heart of most caregivers that gives them the resolve to commit, in all likelihood, the next decade of their life to the care and protection of the person they love the most in the world. And sadly at the same time that a caregiver is making this internal resolution, they are also coming to terms with the finality of the diagnosis “Alzheimer’s” and grieving everything that means for their relationship.

Too often, the tragedy and heartbreak of the caregiver is pushed to the background, as the Alzheimer’s sufferer becomes the identified patient and the focus of everyone’s attention. Tragically, in addition to the personal commitment a caregiver makes to the care and well-being of their loved one, they often are subconsciously abandoning many of their own personal goals and desires. Caregivers, while taking on all these new tasks and challenges that they never expected, are subconsciously strapping themselves in for the long haul.

Stubbornness is Born

Rising to the occasion; facing financial, legal and other new responsibilities requires a certain amount of tenacity and determination. For this reason I find that caregivers seem to be uniquely strong-willed. Maybe it takes a stubborn streak to be able to focus on the day-to-day grind of meeting the needs of another adult that has lost the ability to reason and make their own ‘safe’ decisions. But while stubbornness can be a positive personality trait when it keeps a caregiver going month after month, year after year; it can also be a negative trait when it suppresses an open mind to new and alternate solutions. Stubbornness can lead to inflexibility and can prevent us from accepting and opening up to new concepts and ideas. It narrows our field of vision. Like blinders on a horse our focus is reduced to what is in front of us at the moment.

As a Gerontologist I have seen it over and over again, maybe you have too. Too often I meet a caregiver that is wound up and ready to explode. It is obvious to everyone around them that they are extremely stressed out. Unfortunately they often have trouble admitting it, even to themselves. They will tell you that everything is under control. “I’m fine”, they say. And, tragically, to the extent that they are “fine”, they are heading for a very big crash. Besides the toxic effects of stress on one’s health. They are closed off to the concept of surrender and the acknowledgement that they need help. But that is exactly what every caregiver needs…help. And I will tell you why:

Stress

Caregivers need to acknowledge and overcome long-term stress. It is a good bet that long-term stress is responsible for the statistics that more than 50% of caregivers die before the person they are caring for. That’s right, half of all caregivers “check out” before the “identified patient”. Why do you think that is?

Dr. Jamie Huysman, the co-founder of Leeza’s Place, gives a great talk. In his speeches you can often hear him suggest that caregivers need to “take the oxygen first”, referring to the preflight instructions that we hear every time we fly. This is an excellent illustration of the average caregiver’s dilemma. Flight attendants, when giving preflight instructions, tell people traveling with children, that if cabin pressure is lost and the oxygen masks are deployed, they should put their own oxygen mask on before helping their children with their mask. The reason is that there are only a few seconds before you lose consciousness, and in order to be effective and save others, the parent (caregiver) needs to see to their own needs first. (or they won’t be around to see to anybody else’s needs later).

So I plead with my caregiver clients. concede that you need help, start taking more care of yourself and be willing to hand the job over to others whenever you can,. Remember that alarming statistic from above that over 50% of caregivers die before the person they are caring for. Well add another 5 – 15% that become incapacitated and no longer able to continue caregiving for their parent or spouse. The causes are many, it might be a stroke, or a serious cancer, or a fractured pelvis. Unfortunately, I have seen too many a cases of older adults with profound Alzheimer’s whose caregiver is out of the picture. I know this from managing assisted living communities for almost twenty years.

Over the years I have spoken, one-on-one, with hundreds of caregivers. My overwhelming impression is the unwavering love and commitment they have to their loved one. They genuinely believe that no one can care for their parent or spouse as well as they can. They believe that no one can possibly know their loved one as well as them. To a great extent I agree, and this is why I continue to recommend that they take action to preserve their health. Because if something happens to them, who will care for their loved one? So to manage their stress I encourage caregivers to use adult day care, to find respite care options, and to attend support groups. For example; adult day care gives them a day off from their 24/7 caregiving, respite care allows them to run errands and see to their own health care appointments, and in support groups they can share their experience with newer caregivers, while learning from more experienced caregivers. Most of all, caregivers need a way to shut down the stress response in the body. A topic for another article, I will tell you briefly that stress is a physiological response that causes the brain to release hormones and neurotransmitters into the body, that in turn alters our physiology for survival. Which is great in the short-term, but if left on too long, like in long-term or chronic stress, it causes damage to organs and the immune system. Resulting not only in burn-out, but in illness and scary statistics that say caregivers are a coin-flip away from…well… you know.

Board and Care

I also recommend board and care and assisted living. Usually, this is the option that caregivers are very specific about NOT doing. And there you have it, before I can finish my sentence: they are railing how they will never allow it. These stubborn caregivers have made up their mind, sometimes years earlier, and unfortunately they are not about to listen to anything that challenges their predetermined notions.

But there are some very good reasons for being open-minded about assisted living. For example there comes a time, especially with Alzheimer’s Disease, that the care needs of the sufferer are greater than the caregiver’s ability to provide them. Given this circumstance, it would be a terrible disservice to the loved one, to keep them at home with inadequate care. Tragically, what generally happens is caregivers put this off too long. Unfortunately, when you wait too long, the only placement option is going to be a nursing home. Your loved one’s care needs at this stage become medical not custodial, and therefore surpass the services offered by assisted living or board and care. You effectively have over-shot the window for board and care and are left with only the nursing home option.

The best way to decide on this sensitive topic is to go visit 2 Assisted Living Communities and 2 small Board & Care homes. This will give you a good cross-section of what they are like. It’s never too early to go look. Get the information and brochures and put them away for future reference.

Caregivers: Ten Important Questions to Ask Before a Hospital Discharge

Do you have a loved one, parent, child, friend or even yourself who is about to be discharged from a hospital stay?

Read before you proceed. Ten important questions to ask before you take your loved one home that could be a life saver.

1. What is the Prospective Discharge Date?

When a loved one is admitted to the hospital, the last thing on the mind of a caregiver or family member are concerns about them being discharged. Initially, all of the caregiver’s or family’s concerns are focused on the present. For example, concerns of what is wrong with the patient, what kinds of treatment the patient will undergo, and whether or not they will be fine are all commonplace during this time. The caregiver and family members of the patient realize that, unless the untimely happens, the patient will be discharged from the hospital at some point. The discharge most likely will happen sooner than expected. Based on today’s statistics, the average hospital stay for a non-complicated patient is 1.5 days. Due to Medicare, Medicaid and private insurance regulations, hospitals and institutions are discharging their patients sooner than expected and utilizing other available resources such as rehabilitation centers, assisted living facilities, nursing homes, and course, the patient’s family.

Technically, the discharge planning for the patient starts at the time of admission. As soon as a patient is registered into the hospital system, a team is ready to plan the discharge. The caregiver and family of the loved one are part of the discharge planning team that includes the physicians, nurses, social workers, case managers, and all other medical personnel involved in the patient’s care. With this information on hand, the caregiver and or family of the patient must understand that they are an important part of the discharge planning team. Therefore, they must be informed, assertive, and proactive to obtain the best possible outcome for their loved one.

2. Who are Your Teammates?

It is imperative that the patient’s caregiver or family meet with the discharge planning team, in order to understand their role and what to expect from them. Know them on a first name basis, meet with them, and collect their phone numbers.

a) The Patient

The patient is the most important member of the discharge planning team. It is easy for all those involved with the patient’s care, as well as the patient’s family, to assume that once a person is lying on a hospital bed all decisions are made by somebody else. However, it will ultimately be the patient, depending on their age and condition, who will make the decision of their care following discharge.

b) All Physicians and Specialists Involved

Keep in mind that the physician that provided care during the patient’s hospital stay is not necessarily the one that will continue care after discharge. Today, more and more, hospitals have what is called a Hospitalist. A Hospitalist’s involvement with the patient is limited to treatment and care required while in the hospital. Upon discharge, the patient must follow-up with their primary care physician. In other words, after discharge you may not be able to contact the discharging physician or Hospitalist for follow-up orders, refills or consultations. It will be very difficult and frustrating for you to try to contact him or her and ultimately they will refer you to the primary care physician. Obtain all prescriptions and services that the patient needs to continue after discharge. This includes equipment such as a hospital bed, wheelchair, oxygen, supplies, and home care services. Ask for these orders/prescriptions before the patient is discharged. If your loved one received care from any kind of Specialist, make sure that you have their names, specialty, addresses, phone numbers and their office manager’s name. Ask if your patient must follow-up with them and make an appointment as soon as possible.

c) Clinical Personnel

This includes nurses, therapists, clinical managers and others involved in the patient’s care. As well as the other team members, know them by name and obtain phone numbers where they could be contacted in case of questions or concerns. Learn what their responsibilities are when the patient is admitted and how you could get in contact with them if needed after discharge. Make sure that you get the name and phone number of the Nurse Manager of the unit where your patient was admitted.

d) Case Manager

Every patient admitted in a hospital or institution is assigned a case manager. This person plays a key role in the discharge planning process. Get to know her or him well. This individual is your line to sanity during the first few hours after discharge. The Case Manager is the one that coordinates the whole process. When a strong, positive relation is developed between the patient, caregiver, family, and case manager, the process is usually easier and less stressful for all those involved. The case manager will arrange for the equipment needed after discharge, home care services or hospice, referrals or placement to other health care facilities such as assisted living facilities, nursing homes or rehabilitation centers and transportation if needed.

e) Caregiver and Family Members of the Patient

Another extremely important team member in the discharge planning process, and most of the time the most difficult to coordinate, is the caregiver and family. It is important to identify, without a doubt, exactly who is in charge. Call for a family meeting and designate who will be taking the responsibility of coordinating the patient’s care after discharge. Keep clear in mind that the caregiver position cannot be an assumed or imposed one. There are options available to be considered before making this decision. Caregiving – whether at home or outside the home – is one of the most stressful, life disturbing experiences anyone could ever live. I recommend that the person that is considering taking this responsibility take the Caregiver Assessment Test. This will provided some insight of the potential caregiver’s strengths and weaknesses before undertaking the task.

3. What are the Patient’s Diagnosis or Diagnoses, Prognosis and Life Expectancy?

Be very clear and specific about this. Ask for the specific name of the diagnosis or diagnoses. If unknown or difficult to understand, ask the person providing the information to explain it in simple words or to write it down for you. Research and educate yourself on the matter. The caregiver and/or family must be fully aware on what to expect after the patient is discharged. Ask about prognosis and life expectancy. This will be a difficult subject to deal with. Healthcare professionals sometimes have difficulty dealing with this topic themselves, and could be very evasive about it. The caregiver has the right to know, contingent with privacy regulations, the patient’s condition to be able to make the best decision regarding the patient’s after care.

4. What are the Best Options for After Discharge Care?

There are as many answers to this question as there are patients, diagnosis and conditions. It all depends on the patient’s specific condition, prognosis, life expectancy, age, availability of caregiver and family support system. The options include but are not limited to; the patient’s own home, family and friend’s homes, nursing home facilities, rehabilitation centers and assisted living facilities. The caregiver or family must make a self-assessment to determine the best options for their loved, as well as themselves. If you, a family member or friend decides to undertake this task, I have created a simple tool that the caregiver could use to determine if care giving at home is an option. Take this simple test before you make any decision.

Talk with the patient’s physician, case manager and other members of the discharge planning team, including other family members. Reach out! This will be your salvation once you start this journey of caring for someone at home.

5. What Treatments and Procedures will have to be Continued After Discharge?

Now more and more it happens that patients are being discharged from the hospital in need of continued care such as therapy, treatment or procedures. Even if the patient will receive home care services, usually these services are provided for a limited amount of time and the caregiver is expected to continue to perform them after the services are terminated. From insulin injections, tracheostomy care, colostomy care, wound care or dressing changes and everything in between. Many of these procedures do not require a professional to perform them but the caregiver must be instructed on how to perform them. Educate yourself, observe the healthcare provider performing these procedures while in the hospital, request a one on one, hands on instruction session. Plain and simple, get ready! It is up to the caregiver to get ready for the task. Clinical personnel will not volunteer to instruct the caregiver on certain procedures unless the caregiver demonstrates an interest in learning or it is specifically ordered by the physician.

6. Will My Patient Continue the Same Medications and Treatments Before They Were Admitted?

I wanted to list this question as a serious issue that needs to be addressed independently. In my experience as a nurse and caregiver, medication non-compliance is one of the most frequent reasons for the patient to be readmitted to the hospital. Most of the time, the patient and/or caregiver assume that a medication or medications are to be continued or discontinued without understanding the consequences. It is standard practice that when a patient is admitted into the hospital all of the medications that are taken at home are reconciled. The same procedure applies at discharge time. Make sure that a list of medications taken at home is brought in upon admission of the patient or shortly after. At the time of discharge, request to speak with the clinician in charge of your patient’s care. Go over each one of the medications in the patient medication profile. Ask for indications, dosages, frequency and route as well as possible side effects and or allergic reactions. If a new medication has been indicated during the hospital stay, ask if it is to be continued after discharge. Be certain to request prescriptions for all those new medications. You do not want to find yourself in the situation of needing a medication, not having a prescription from discharge and it is a holiday. Good luck!

7. What are Possible Signs and Symptoms I should be Aware of?

It is here where the absolute understanding of the patient’s diagnosis and prognosis comes into play. Signs, symptoms and actions to take depend on the patient’s condition and vary with them. Request a conference with all those involved in the patient’s care i.e. physicians, specialists, clinical personnel, and case manager or social worker. Ask all the questions that you think are pertinent to your patient’s condition and prognosis. The ideal situation will be that the conference is held with all participants at once; however, most likely that will not be the situation. One thing is certain; you must have a face-to-face conversation with all the disciplines mentioned if you want to survive the first 24 hours after discharge. Get educated, be assertive and proactive, request, demand and expect. Most hospital personnel welcome the caregiver interested on a fast recovery or the best outcome possible of their loved one, but in today’s fast environment the caregiver should assume a very assertive position.

8. Who is Responsible for the Patient’s Financial Obligations?

This should be asked right up front. Do not assume that the caregiver is responsible for this obligation. Have an honest talk with the patient, if possible, on how he or she plans to meet their financial obligation with the hospital or institution. Request an appointment with the office of financial affairs at the hospital or institution to discuss the patient’s bill status. Familiarize yourself with all medical insurance policies that the patient might have. Bring with you all of the identification cards, copies of insurance policies including any supplemental health insurance policies. Request an itemized bill. Obtain the name and phone number of the person you are dealing with. You will need to call back regarding this issue and you need a person that knows you. This will prevent the aggravation of having to tell your story to several people repeatedly.

9. What do I do During the Days Just Before Discharge?

The panic is overtaking you. Reality is sinking in. Your loved one is coming home tomorrow. You have accepted the responsibility of taking care of him or her at home. Welcome to the club. There are millions of members in this club. Hopefully, you took the Caregiver Assessment Tool Test before you assumed this responsibility.

Today you will collect the patient’s belongings that will not be needed for the rest of the hospital stay. Make sure you go over every item that was brought with the patient at the time of admission. This includes eyeglasses, dentures, any equipment such as wheelchairs or walkers. If possible, ask the patient if there is anything else that was brought in that you are not aware of. If anything is missing, this is the time to speak with the personnel that took care of the patient and start a search. Do not wait until the day of discharge.

Make sure that before discharge, care is already coordinated and in place. This is equipment, supplies and services such as home care. Contact the home care agency that is supposed to service your loved one and inform them of the prospective discharge date. Get a contact person’s name and phone number. Contact the case manager and inform him or her of any discrepancies in the coordination of services.

10. Today is the Day, What do I do?

Today is the day. Discharge day. Emotions are running high. Make sure that you are available at the time of discharge. It is imperative that you are there during this process. On this day, you will take last inventory of the patient’s belongings. Get prescriptions from the hospitalist. Talk with the nurse that is in charge of the patient’s care and request all medications that remained unused. Ensure these medications are on the list of medications that the patient is supposed to continue after discharge, as well as all supplies. These medications and supplies were already charged to the patient. Request a last-minute conference with the hospitalist to be clear on instructions that were already discussed. Clarify any doubts and ask questions. Avoid the feeling that you are taking their time or interfering with their schedule. They are there for you and your patient. Now, it is time to go home.

Steps to Hiring an In-Home Caregiver

There comes a point when using family and friends for care is not enough and professional assistance is needed. Often this occurs when a loved one needs daily-if not around the clock-care and assistance with daily activities such as showering, eating, and dressing. Family and friend caregivers often don’t have the time to take care of minor household activities, thus leaving them undone. Hiring an in-home caregiver can help ease the workload and provide a loved one with the care she needs and her family with the security of knowing she is in good hands.

Assess Needs
Before hiring an in-home caregiver, the needs of the individual must be assessed. Does she need assistance with daily activities? Does she require a special diet? Does her medication or daily health need to be monitored? A physician or other qualified professional should perform this assessment to determine the individual’s needs in terms of professional, in-home care.

Assess the Budget
While some insurance plans cover in-home caregivers, others do not. Therefore, creating a budget is important so that family know how much they can spend on a weekly and monthly basis for their loved one’s in-home care. Enlisting the help of numerous family members can help lighten the financial burden and open the door to more in-home caregiver options. Contact the loved one’s insurance plan to see if a portion of the care is covered. A doctor’s referral may be required for coverage.

Create a Schedule
With the assistance of an in-home care service, a caregiver schedule should be drafted. Outline what hours and days the caregiver is expected to work. If around-the-clock care is needed, this must be specified with the agency so that the duties can be split among several in-home care workers.

Visit an In-home care Agency
Numerous in-home caregiver agencies are available, but not all provide the same services or level of services. Family and friends should look for in-home caregiver agencies that:
• Do background checks and screenings on all caregivers
• Carry workers compensation insurance for their caregivers
• Are large enough to substitute qualified caregivers if one is ill
• Accept insurance, including Medicaid or Medicare
• Can provide a variety of caregivers based on an individual’s specific care needs
• Only hire highly trained and certified caregivers

Selecting a Caregiver
An in-home caregiver agency typically provides families with a few caregivers to interview. It is important to not only assess the caregiver’s background, education, and experiences, but also assess his interaction with the person he is taking care of to ensure an appropriate level of comfort.

Some important things to look for during an in-home caregiver interview include:
• Asking for references and following up on them
• Ensuring the caregiver has the skill-set, education, and experience with the type of care a loved one requires
• Ensuring the caregiver is physically capable of handling all in-home care tasks, such as lifting a person to and from a bed
• Watching for a positive interaction between the caregiver and the individual to make sure they can get along with one another

Hiring an in-home caregiver may seem like a daunting task, but with the assistance of a reputable in-home caregiver agency, most families can find the right caregiver for their loved one’s needs without hassle. Although the idea of giving up control for some is difficult, an in-home caregiver allows your loved one to retain her freedom and independence while still receiving the care she needs.