Banish the Worry Gnome – A Reflection

In a previous blog post, I discussed the topic of worry and caregiving. I gave some tips for steps you can take as a caregiver to untangle yourself of needless unproductive worry. There is a wonderful Chinese proverb that advises us: “That the birds of worry and care fly over your head, this you cannot change; but that they build nests in your hair, this you can prevent.”  March 18 nest-918898_640

As a caregiver, you may be concerned that if you stop worrying, this is a signal that you do not care anymore. You may hear your inner voice saying, “Caring is providing care. My caring for people is an expression of love in my life. I worry because I care.” Your family and friends are calling you a “worry wart.” Can you shed this part of your personality? Rest assured, you can!

In this reflection composed by my mentor and friend, Merle Stern, we ask you to take a few minutes to explore, examine, and untangle caring from worrying. Find a few minutes in your busy schedule, along with a quiet space, and a journal close by to write your reflections.

When you feel ready to begin, gently close your eyes and focus on your breathing. When you breathe in, feel your body relax. Focus on your neck muscles, shoulder muscles, then all the muscles in your body. When you breathe out, feel the tension leave your neck, shoulders, your whole body. Let go of the struggle to control unwanted thoughts and feelings. Become aware of the present moment and your commitment to a change that is consistent with what you value most in life.

March 18 gnome-411125_640Gradually, begin to visualize the part of you that is worrying most of the time. Visualize that part of your personality as a gnome. For the time being, free yourself from worries by encapsulating them into that gnome. Send the gnome away for a while so that you can have some peace and quiet as you examine more carefully your list of worries.

Get a sense of what it feels like to be free from worrying. Are you feeling less tired, not dragged down? Are your physical and emotional energies starting to re-charge?

Now take a closer look at some of the areas that may be causing you to worry needlessly.

  • Is there a situation that needs to be addressed immediately or in the near future? Can you be proactive and productive? If so, identify what you might need to put into place to achieve the outcome you desire.
  • Is there a situation for which you are taking responsibility, but have no control? Is this a situation that needs to be accepted because you have no control over it?
  • What are the areas of your competency? What are some situations that you know you can handle if and when they occur? What are areas where you could use others’ help in handling?
  • What unproductive, needless worries will you leave encapsulated in the gnome whom you have banished?

As you bring your reflection to an end, gradually become aware of your physical surroundings, the sounds, and the light that has been shed on this area of darkness. Focus your awareness on your breathing. When you are ready, record whatever insights you have. How will these insights enable you to move forward in your life? What has been the value of this experience? How will you integrate this into your daily life?

If you are so inclined, draw a picture of your gnome, worry warts and all! When you begin to feel overwhelmed with worry and concern, take a look at this gnome, and banish him/her again.

I wish you peace, patience, and joy in your caregiving today and every day!

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Feel free to share this reflection with family and friends, but please credit Merle Stern as the author. I would love your feedback. You can reach me at: Vicki@Caregiverfamilies.com.

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Worrying vs. Caring

I recently traveled to Guatemala. At the end of one of our excursions, our tour guide handed each of us a goodbye gift. It was a small handcrafted pouch of “worry dolls.” He explained the legend surrounding this custom.

Worrydollcraft as featured on Etsy

Worrydollcraft as featured on Etsy

Many generations ago, the indigenous people from the Guatemalan highlands created these dolls as a remedy for worrying. Before going to sleep at night, a person would tell their worry to as many dolls as necessary. Then they would place these tiny dolls in a cloth pouch and put it under their pillow. The dolls take over worrying so that the person can then sleep peacefully through the night. In the morning the person awakens without the worries that the dolls took away.

There is a Swedish proverb: “Worry often gives a small thing a big shadow.” I used to be a “worry wart” in my teen years and early adulthood. My worries usually came from anticipating the worst that could happen regarding a situation. This was the stressful part – anticipation – and usually the worst never came about. Worry was really a drain on my body and spirit. The process of maturing taught me that worries don’t change the outcome of things.  As Corrie ten Boom wrote, “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”

One of my consistent worries while caring for my mother was what would happen to her if she were taken alone by ambulance from her assisted living facility to the hospital while I was at work. I describe this in my memoir, Elegy for Mom. This actually happened on several occasions. My worry was that she would not be able to describe what was wrong or the location of her pain. Consequently, the doctors wouldn’t know what to do to begin treatment. Each of those times when I arrived at the emergency room, Mom appeared calm. She seemed to know she was in a hospital. I was the frightened one – not Mom! I later found out that the nurse at Mom’s assisted living facility had given the medics a file folder containing all her health issues and medications to take along with Mom in the ambulance.

When you care for a loved one with dementia, I don’t believe you can ever be completely “worry-free.” There will be times when you will worry. You may even feel by worrying that you are doing something “useful.” Perhaps you are underestimating your ability to cope with the challenges of caring for a person with dementia. Worry can take a toll on your sleep, tax your immune system, drain your mental and physical energy, send your anxiety levels soaring, and turn into a cycle of self-perpetuating negative thinking.

Sometimes worry can be a good thing. For example, if there is an actual threat, it may spur you to take action or solve a problem. However, if you find yourself starting to become overwhelmed with worry, here are a few questions to ask yourself:

  • Is your worry productive or unproductive? Will it help you or hurt you?
  • Does worry limit you and cause you to panic or freeze from thinking clearly?
  • How much does worry interfere with your life?
  • Is the problem solvable rather than an imaginary “what if?”
Image courtesy of Stuart Miles

Image courtesy of Stuart Miles

Negative moods, like guilt and shame, even physical states like pain, tiredness, or fatigue can fuel worrying. Worry hinders rather than facilitates effective problem solving. It is not an alternative to coming up with practical ways to tackle a problem. Try these suggestions to resolve the matter:

  1. Talk about your worry to a close friend or family member. Getting it out often helps make it easier to see the real issue for what it is. A trusted family member or friend may help you find a more useful and practical perspective.
  2. Write it out. Make a worry list and then order them. Jot down what triggered the worry. What is the worst that can happen? You may start to see patterns.
  3. What is one small step you can take to start improving the situation? Can you come up with a Plan A, Plan B, or even a Plan C, if needed?
  4. Learn more about the issue. Perhaps reading about the disease, or discussing health issues with a doctor can ease your mind so that you have an idea if the situation is to be expected as part of the disease progression.
  5. Try to lift your mood if you begin to feel that worry is zapping you further. What can you do to make your life more pleasant?
  6. What early messages did you get about your capabilities? Give up the belief that worry will be the solution to the problem.
  7. Before your worries begin to overwhelm you, seek professional help.

Caregivers need all the physical, mental, and creative energies that they can muster. Save your energy for productive things, and try not to let worry drain you. Give yourself credit for challenges that you have overcome in the past. Have confidence in your ability to deal with the challenges that await you.

Get a good rest each evening in the knowledge that you did the best you could that day as a caregiver and you won’t need those worry dolls. Poet Ralph Waldo Emerson has these words of wisdom:

“Finish each day and be done with it,

you have done what you could.

Some blunders and absurdities no doubt crept in.

Forget them as soon as you can.

Tomorrow is a new day,

you shall begin it well and serenely.”

I wish you peace, patience, serenity, and joy in your caregiving today and every day!

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The Center for Clinical Interventions in Perth, Australia, has an educational module about “What? Me Worry?,”  an excellent detailed overview about worrying. Check it out here: http://www.cci.health.wa.gov.au/docs/GAD_2_2015_Worry.pdf.

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I composed a prayer based on a line from Psalm 40, to help alleviate worries. Check it out on the “Resource” section of my website: https://caregiverfamilies.com/inspiration/.

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Exercising Muscle Memory – Part 2

In Part 1, I introduced a person-centered approach to caring for a loved one with dementia. This approach is based on the philosophy of Dr. Maria Montessori: to treat the individual with respect, dignity, and helping them remain as independent as possible, for as long as possible. Feb 18 thumbnail_Braincartoonv2

It is a framework, designed to work with “muscle memory,” the type of procedural memory – the “how” of memory.

In this model, the activities of daily living, such as dressing, eating, personal hygiene, etc., are broken down into easy sequential steps. You provide the encouragement for your loved one to do these activities as much as they can. This process taps into their “muscle memory” so that they don’t lose their ability to do these simple tasks through lack of doing them.

Persons with dementia lose their ability to plan, initiate, and carry out daily activities as the disease progresses. In the early stages of illness, there may not be noticeable changes. For example, in dressing themselves, they may put on clothes that have spots and stains without realizing this. They can, however, still find their clothes and put them on in the order needed. In the middle stages, you may find that they wear the same clothes day after day, or mix colors and patterns that don’t match. They begin to have trouble buttoning buttons, or zipping zippers. In the late stages, they may put outer garments on first and undergarments on top, forgetting the proper order.

To explain how this person-centered Montessori approach works, here are a few examples using key principles mentioned in Part 1. Some organization, preparation, and patience is needed on your part as caregiver.

  1. CHOICE

Your loved one has been making choices all his/her life and needs to feel they have some control of their life. Depending on the stage of the dementia, if they can still make a selection of what clothes to wear, ask them to choose between two items. For example, would they like to wear the blue shirt or the white shirt? The black pants or the grey ones? Help make it easy for them to make a decision. You might also inform them that today is the day you go to church, or to a doctor’s appointment, or out to eat lunch. In these cases, they may want to dress up a little more than in everyday clothes.

  1. INDEPENDENCE

As caregiver, you provide the necessary encouragement your loved one requires to dress themselves. You might just need to lay out the pieces of clothing in the order they should be worn. If your loved one is in the middle stages, handing them one piece of clothing at a time may be all that is required. Prompt or cue them how to put their clothes on, button buttons, zip zippers, tie shoelaces. It may take a little extra time, but the important thing is that they do it themselves. Your patience is required here so that you aren’t tempted to take over to hurry up the process.

  1. DEMONSTRATE

As the dementia progresses, your loved one’s ability to process words will deteriorate. Showing how to do things in small steps is better than giving instructions. By using less language in your interaction, you help allow them to focus all their attention on what you are demonstrating, rather than trying to find the “right” words to respond to your questions. This also lessens their frustration as they try to imitate your actions.

On the few occasions when I helped my Mom get ready to retire at night, I stood beside her in the bathroom. Next, I gave her a warm, wet washcloth in one hand and the bar of soap in the other. Then, just rubbing my hands together, I pretended I was rubbing soap onto the washcloth. Mom responded by doing the same, washing then rinsing her face and hands. Feb 18 face cream-1327847_640After handing her the towel to dry, I brought out her favorite facial cream, “Oil of Olay.” Mom had used this toiletry product for years. Rubbing my cheek, as if to put on the cream, was a signal for Mom to do the same. It didn’t take many words – just demonstrating so that her “muscle memory” could kick in and take over.

  1. SEQUENCE

If you stop to think about it, a task as simple as brushing one’s teeth involves many steps to completion. Breaking down everyday tasks into their basic, simplest components allows your loved one to focus on one step at a time.  You want them to be successful in this task, so you may need to adjust the steps to match where they are in the disease process. Putting the toothbrush next to the tube of toothpaste on the counter may be all that is needed. In the middle stages, you may have to cue them to take off the cap, squeeze the toothpaste on the brush, wet the brush, brush up and down, rinse their mouth, etc.  In the later phase, you may even need to guide their hand as they brush their teeth, and hand them a glass of water or mouthwash to rinse. Watch so they don’t swallow the mouthwash thinking it’s something to drink.

  1. MEANINGFUL ACTIVITIES

This principle describes the introduction of activities and routines that are meaningful to our loved ones. These activities help activate their senses and stimulate their minds. To ensure success, take into account your loved one’s interests, hobbies, former occupation, likes and dislikes. The important thing is to try to plan activities where there is no right or wrong way or winners or losers. Here are a few examples:

  1. Heather O’Neil, from Yorkshire, UK, has a website, “Creative-Carer.com,” where she posts some of the therapeutic activities that she plans for her mother who was diagnosed with mixed dementia. Her mother Margaret was an artist. Each week, Heather organizes materials for an artistic activity such as card making, crepe paper flowers, etc. Her mother has won competition awards for her pieces and gives out many of her creations as gifts.
  2. Harry Urban has been living with Alzheimer’s for over thirteen years and doesn’t let his dementia get to him. His hobby is woodworking and he displays many of his creations on his Facebook page. He delights in challenging himself to carve difficult pieces.
  3. For a former fisherman, try giving him a tackle box with lures and flies to organize or the materials to make them.
  4. For a baseball fan, looking at or collecting Hall of Famer baseball cards might be enjoyable, or even just playing a game of catch.
  5. A golfer might like to practice putting golf balls on an indoor/outdoor putting mat.

Many dementia care facilities in the USA are incorporating Montessori principles. The benefits to following this person-centered approach are many but here are just a few:

  • An increase in self-esteem
  • An increase in motor skills
  • An increase in interaction
  • Stimulation of the senses
  • A sense of accomplishment
  • A reduction in anxiety.

One last recommendation – be flexible and willing to adapt to what your loved one is able to do on a certain day. What was of interest one day may not be engaging to them the next.

I wish you peace, patience, and joy in your caregiving today and every day!

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To visit the website and see photos of Heather O’Neil and her mother, go to: Creative-carer.com. Her Facebook page is www.facebook.com/CreativeCarer/.

Harry Urban’s Facebook page is www.facebook.com/Harry.Urban1/.

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To read about how Montessori methods are used with students and senior residents with mild dementia, click here: http://www.therobertsacademy.org/school/approach.html.

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Brookstone sells an indoor putting green mat for under $40.00. Check it out here: http://www.brookstone.com/pd/putting-mat-with-hazards/797547p.html.

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This 4-minute video, “Thelma’s Story,” shows the Montessori practice in use: https://youtu.be/lUfhr67oTA8

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Exercising Muscle Memory – Part 1

Practice — practice — practice! This was a kind of motto of mine as a young girl rehearsing for an upcoming piano recital. Little did I understand at the time that my music lessons and practice sessions were an effective way of developing “muscle memory.” Feb. 4 Braincartoon (2)

Wikipedia defines muscle memory as “… a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for the task, eventually allowing it to be performed without conscious effort.” Muscle memory works when you drive a car, ride a bike, eat, tie your shoelaces, type on a keyboard, play a musical instrument, etc.

I recently came across two websites that discuss ways to encourage persons with dementia to exercise their muscle memories and focus on what they still can do. Both sites describe a person-centered Montessori approach. Based upon successful methods that were used by Dr. Maria Montessori, this approach attempts to keep a person as independent for as long as possible by focusing on tasks and habits related to procedural memory.

Maria_Montessori in 1913To digress for a moment, Dr. Maria Montessori (1870-1952) became the first female doctor in Italy in the 19th century. She was a physician, educator, and innovator. She worked with children with intellectual disabilities and developed a method to teach them to read and write. By 1910, her philosophy and method of teaching and nurturing youngsters was applied to students in mainstream schools. The emphasis is placed on self-determination and self-realization. As Dr. Montessori puts it herself, “Never help a child with a task at which he feels he can succeed.” Her teaching methods are still in use today in Montessori schools all over the world.

How does all this apply to care of our loved ones?  Persons with Alzheimer’s and dementia are often confronted with what they can no longer do, such as routine activities of daily living. They may struggle with simple tasks like dressing themselves or brushing their teeth. The key principles of the Montessori method can give you, the caregiver, an understanding of how better to focus on your loved one’s capabilities, engaging them in meaningful interactions and helping them remain as independent for as long as possible.

Alzheimer’s Australia, an advocacy agency, in conjunction with Monash University in Melbourne, Victoria, has developed a wonderful resource, “Relate, Motivate, Appreciate,” that details this person-centered approach. (See link below.) Here is a summary of the twelve key Montessori principles of engagement, as listed in this resource:

  1.  The activity should have a sense of purpose and capture the person’s interest.
  2.  Always invite them to participate.
  3.  Offer a choice whenever possible.
  4.  Talk less. Demonstrate more.
  5.  Physical skills; focus on what they can do.
  6.  Match your speed with the person you are caring for. In other words, slow down!
  7.  Use visual hints, cues, or templates.
  8.  Give them something to hold.
  9.  Go from simple tasks to more complex ones.
  10.  Break the task down into steps. Make it easier to follow.
  11.  To end, ask, “Did you enjoy doing this?” and “Would you like to do this again?”
  12.  There is no right or wrong. Think engagement.

I wish I had been aware of this approach when I was caring for my mother. At times I felt it was hit and miss when trying to engage her and keep her active. Be flexible and willing to adapt to what your loved one is able to do on a daily basis, as each day may be different. I hope you will share your experiences of your attempts to help your loved one regain control of aspects of their life and retain their abilities for as long as possible.

In Part 2 of this topic (an upcoming blog), I will delve further into four of the principles listed above, and detail specific things you can do in helping your loved one exercise their memory muscle.

Oh, and by the way, I never became a world class pianist, but I still play the piano for my own enjoyment and relaxation, albeit this memory muscle is a little “stiff!”

I wish you peace, patience, and joy in your caregiving today and every day!    

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Here is the link to a 72-page booklet developed by Alzheimer’s Australia, in conjunction with Monash University: http://qualitydementiacare.org.au/wp-content/uploads/AlzheimersAustralia_Montessori_Resource_WEB.pdf.

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Another website that details the Montessori methods for dementia care is: http://keepingbusy.com/learning-center/montessori-principles-for-dementia/.

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The Dementia Action Alliance has a sixteen-minute video, “Person-Centered Matters, Making Life Better for Someone Living with Dementia.” This video highlights the positive aspects about helping people live fully with dementia, told through the stories of five people living with the condition at various stages. You can watch it by going to: https://www.youtube.com/watch?v=5R3idi0e1eg.

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If you found this blog beneficial, please share it and “like” us on Facebook:

https://www.facebook.com/CaregiverFamilies/. Sign up for my free newsletter that accompanies each new blog with extra tips and resources for my subscribers.

 

A Reflection on the Language of Touch

A hug can provide solace. A gentle massage can soothe and calm. Holding hands can reassure. In short, “touch” can be a powerful “therapy” that comforts a loved one with dementia.

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Some of my best memories in caring for my mother center around sitting together on the porch of the assisted living facility, without saying much, but just gently stroking her hands and seeing her smile.

I realize that not all family members feel comfortable about touching or hugging their relatives. There can even be issues rooted in a fear or stigma that touching a person with dementia will result in “catching” the disease.

If you are caring for a loved one in your home, caregiving might inevitably involve touching intimate areas, like changing incontinent pads or panties, toileting, or bathing a relative of the opposite sex. How do you become comfortable with the vital role that “touch” plays?

The first step is to reflect on the nature of touch as one of our most basic human needs, no matter age or physical or mental condition. The second step might be in confronting your own reservations about touch. For a person with dementia, the need to be comforted and reassured by the loving, gentle touch of a hand or hug can be life-affirming, decreasing their feelings of anxiety, fear, or loneliness.

The reflection below was composed by Merle Stern, to guide in a deeper understanding of the importance of the gift of “touch” in your caregiving role. In her own words, Merle notes: “I remember many years ago, as though it was yesterday. I took the two week old baby from the arms of her mother and held her close to my heart. The synchronization of the baby’s heart beat with my own heart beat was a memorable experience, and at that moment I became aware of the power of touch.”

Jan 21 baby hugged cropped-1345736_640

To begin that inward journey of processing your personal experiences, you will need to withdraw to your sanctuary – that quiet place within you and surrounding you. Then, gently close your eyes and focus your awareness on your breathing. Experience the space around you and become at one with it.

Now, try to think of touching as a language: a language that speaks to the innermost sense of who we are; a language that has the potential to convey the depth of a relationship. The person whom you touch, and their response to your touch, has the ability to create a bond, and to build bridges that transcend words and invisible barriers. It simultaneously penetrates two different worlds.  

Take a moment now to gently stroke your arm. Feel the softness of your skin as your touch communicates gentleness and tenderness. Note how you are giving and receiving at the same time. After a few moments, and through the medium of your touch, try to communicate different issues; for example approval, objection, or whatever comes to your mind. Become aware of how and what you are feeling simultaneously, both as the transmitter and receiver of that touch.

Focus again on your breathing. After a few moments scan over some of your life’s experiences, making notes in your journal as you go along:

  •  The touch that conveys your joy and well being;
  •  The touch that conveys your appreciation/gratitude for help given by a stranger;
  •  You have not seen a person for a long time and you reach out with a spontaneous hug – a hug that enhances your bonding and friendship that transcends time and distance;
  •  The way you touched a child who came to you for comfort and solace;
  •  The touch that expresses “welcome,” and one that expresses “goodbye;”
  •  The difference in touch when you stroke a kitten or dog, or other pet animal;
  •  The touch that conveys your compassion, empathy, and understanding.

 Jan 21 grandma enbraces child-577494_640

Again, scan over your life and become aware of your own personal “touch history,” making notes in your journal as you go along:

 Visualize yourself as a baby, reaching out to touch your mother’s breast or comforting your teddy bear;

  •  As a young child, the experiences of being touched by your mother, father, brothers, sisters, aunts, uncles, and grandparents;
  •  As an adolescent and as an adult;
  •  As a parent to your child;
  •  As an adult child to your parent;
  •  As a spouse to your spouse.

Now reflect on your touch as a caregiver. Become aware that as you touch that person’s body, you are also touching his or her life. You invoke long forgotten memories of what once was and no longer is.

Throughout your caregiving, your touch conveys a variety of messages. Some of these messages include: your loved one is important; they are lovable; they do not need to be afraid; you are present with them on their journey.

Now, reflect on the possibility that the last touch in this person’s life may come from your hands. What would you like this last touch to convey, as you bid goodbye to your loved one who is transitioning to another realm?

Finally, take a look at your hands – the hands that will convey what words cannot. Feel your appreciation for your hands and the blessed gift of touch. Make a note in your journal of the value of this experience and how it can continue to enrich your life.

 hands-holding-together

Our experiences of bonding often center on the sense of touch and communicate much more than words ever could. The British-American anthropologist Ashley Montagu sums it up in his 1971 landmark book, Touching: The Human Significance of the Skin: “Touch conveys fondness, security, closeness, warmth, concern, and encouragement, and makes [older persons] feel an increased sense of trust and well-being.

I wish you peace, patience, and joy in your caregiving today and every day!

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Sincere thanks go to Merle Stern, my friend and mentor, who composed this reflection. Feel free to pass it on to family and friends, but please give credit to Merle and this website.

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Dave Otis, a licensed massage therapist, wrote easy directions for healthy self-massage exercises for hands, face, and neck. Check these out by going to: http://www.unh.edu/health-services/sites/unh.edu.health-services/files/media/PDF/Stress/SelfMassage.pdf.

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For a comprehensive article on “How Skilled Human Touch Can Transform Person-centered Dementia Care,” go here: https://www.nhqualitycampaign.org/files/Compassionate_Touch_White_Paper.pdf.

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My sister Marcia and I published a journal called My Blessings Journal. It can be a useful tool to introduce you to the joys of journal-keeping. To order a copy through my website click here: http://caregiverfamilies.com/book/.

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If you found this blog beneficial, please share it and “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Sign up for my free newsletter that accompanies each new blog with extra tips and resources for my subscribers.

 

Alzheimer’s and the Senses Part Five: Touch

“To touch can be to give life,” said Renaissance painter, sculptor, architect and poet Michelangelo. I was privileged in 2014 to visit the Sistine Chapel in Rome and view Michelangelo’s fresco painting of “The Creation of Adam.” You may have seen this classic painting of God’s near-touching finger reaching out to bring “life” to Adam.

The scene is unforgettable! I wonder if Michelangelo knew that touch is the first sense developed by the body.

Michelangelo's "Creation of Adam"

Michelangelo’s “Creation of Adam”

Our sense of touch is a basic human need, a lifeline that can communicate love, safety, care, reassurance, and trust. Touch is not an emotion, but emotions are formed through the physical, psychological and spiritual effects that we experience through this unique sense. Persons with Alzheimer’s or other forms of dementia do not lose their capacity for human emotion or their recognition of a caring touch.

Compared to our scientific knowledge of the other senses, our understanding of the sense of touch, and in particular how it is processed in the brain, is limited. According to neurobiologist Dr. David Linden, “genes, cells and neural circuits involved in the sense of touch have been crucial to creating our unique human experience.” Yet, writes Dr. Linden, the body’s touch circuits are “a weird, complex and often counterintuitive system.”

How the Brain Processes Touch

Our sense of touch does not have a specific place on the body where it is located, for it is found all over the body in our skin. Our skin is the largest organ in the somatic sensory system. The somatic sensory system has nerve endings and receptors that help us feel when something comes into contact with our skin.

Chart of skin

Chart of skin

When the touch, pain or heat sensors in our skin are stimulated, they send electrical impulses to our neurons. The neurons then act as a relay team, passing the electrical pulse from neuron to neuron until it reaches our spinal cord. Our spinal cord then takes the signal and sends it to our brain to translate it.

Neuroscientists have discovered that there are two distinct but parallel pathways in the brain for processing “touch” information. The first pathway is in the region of the brain called the primary somatosensory cortex. This is the region that analyzes and processes information about the “facts” of a touch, such as vibration, pressure, texture, temperature and location.

The second pathway processes social and emotional information and activates brain regions associated with social bonding and our pleasure and pain centers.

Aging and Touch

Humans crave touch. Just as babies thrive and respond to being held, as we age our need for touch remains. Unfortunately, our sense of touch steadily deteriorates as we get older. Every year, starting at around age eighteen, we lose about one percent of our tactile sense. Some researchers explain that this could be the reason elderly people are so prone to falls – they get less tactile information from the soles of their feet when wearing shoes.

The Physical and Emotional Benefits of Touch

Research studies document physical and emotional health benefits of using “touch” in caring for a person with dementia. The physical benefits include:

  • Lowering of blood pressure
  • A decrease in pain
  • An improvement in mood
  • A decrease in stress-related cortisol
  • A decrease in heart rate
  • An increase in sensory awareness.

As to the emotional benefits, touch can communicate multiple positive emotions such as love, safety, care, reassurance, trust.  Hugs, holding hands, a caress, or other physical gestures of affection can ease your loved one’s mind, help them feel less isolated, decrease their anxiety. Studies have shown that a person giving a hug gets just as much benefit as the person being hugged. For a person with Alzheimer’s, compassionate touch is a language of the human heart.

How You Can Help

1.  Active Tactile Stimulation

The brain “feels,” so tactile stimuli is brain stimulation. The most sensitive parts of our body and those with the most nerve endings are our fingertips and mouth. Each of our fingertips has about 3,000 nerve receptors.

A person with dementia naturally gravitates toward tactile stimulation when they explore the fabric of their clothing or the smoothness of an object in front of them. Every solid object has texture, temperature, and shape. They can benefit from activities that involve handling a variety of objects to experience texture. These could include: squeezable balls, sensory “blankets,” activity muffs, finger painting, “clay” work with Play-Doh.

Go for a walk in a garden or woods and let your loved one touch leaves, tree bark, and flowers. Bring the feel of the outdoors inside by filling a tray or basket with similar objects like shells and coral to replicate the seashore, or acorns, pine cones, and various branches.

Incorporate “touch” into their daily routine, like folding warm laundry, sweeping the floor, arranging flowers in a vase, drying dishes, brushing a dog’s fur coat, knitting or crocheting.

2. Passive Tactile Stimulation

My Mom always seemed to want a handkerchief in her hand. She told me it gave her a feeling of reassurance. She also enjoyed carrying around a small purse that had a few items tucked in it like a comb and coin purse.

One of the ways I found to calm and comfort Mom when I visited her in the assisted living facility was to give her a weekly manicure. A pedicure and combing/brushing hair are other forms of passive tactile stimulation.

Giving a hand, foot, neck, or upper back massage is also a way to connect and communicate. Make sure your loved one gives you permission to do so. Do not surprise them. hands-holding-togetherUse a little massage oil like lavender or lemon balm to add to the sensory experience.

When temperatures change in the fall and winter months, make sure your loved one is kept warm both inside and outdoors. They may not be able to tell you when they are hot or cold. Sitting wrapped in a soft blanket can provide comfort and warmth to an anxious person. Cover sofas or an armchair with fake fur or sheepskin.

3. Pain

Be on the alert to pain in your loved one at all stages of the disease. Pain often goes undetected, under-recognized, and under-treated in persons with dementia. Most studies suggest that the experience of pain is elevated in persons with mild to moderate Alzheimer’s disease. However, pain sensitivity in the late stages is unclear, according to Sciencedaily.com.

Beside facial expressions like grimacing or frowning, some signs that your loved one is in pain include: guarding, bracing, moaning, sighing, aggressive behavior.

The bathroom and kitchen are places where scalding and burns happen. Adjust the water heater to 120 degrees Fahrenheit, and/or install anti-scald devices for water taps. Check into automatic shut-off devices for stoves and ovens. Unplug appliances when not in use.

Michelangelo symbolized the power of touch in his magnificent painting of the act of creation.  Create opportunities each day to “give life” to your loved one. The sense of touch is truly fundamental to human communication, bonding and health.

I wish you peace, joy, courage, and patience in your caregiving today and every day!

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Read more about touch and the elderly at: http://www.comfortkeepers.com/home/info-center/senior-care/the-power-of-touch-and-what-it-means-for-the-elder#sthash.f1NaePg5.dpuf.

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Dacher Keltner, UC Berkeley psychology professor and faculty director at the Greater Good Science Center, shares insights into touch therapies in this eight-minute YouTube video: https://youtu.be/GW5p8xOVwRo.

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The Alzheimer’s Association of Australia has a “Help Sheet on Pain.” You can find it here:

https://www.fightdementia.org.au/files/helpsheets/Helpsheet-CaringForSomeone11-Pain_english.pdf.

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For easy directions about giving a hand massage, check out: http://www.wikihow.com/Massage-Someone’s-Hand.

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Food for Thought: A Reflection on Taste

If you’ve seen the 1968 musical film “Oliver!” you may recall the song the orphans sing as they gather in the bleak dining hall for their main meal of the day. They yearn for “…magical food, wonderful food, marvelous food, heavenly food, beautiful food, glorious food!”

Peasant Family at Lunch by Albert Neuhuys

Peasant Family at Lunch by Albert Neuhuys

Food and our sense of taste have the power to transport us to a realm of wonderful or unpleasant memories, tasty or bitter experiences. Family celebrations and meals can be a meaningful part of the holiday season. Pamper your loved one by serving them “comfort” food or traditional holiday food that they ate growing up. Engage them in the preparation process. See if this will perk up their taste buds and appetite, especially if they have not been eating well. Even when memory is diminishing, the capacity for imagination and fun is still there.

 

In this reflection below, I ask you to think about food, and the marvels and wonders of your taste buds, and their inherent power to distinguish different tastes and combinations of tastes.

Find a spot conducive to your being quiet mentally, emotionally, and spiritually. Become aware of your breathing. Feel your shoulders relax. Try to let your mind go blank. Feel at peace with yourself, your surroundings, the world, and the people in your life.

Taste is influenced by many factors. For example, having a slice of hot toasted homemade bread slathered with butter and the marmalade made by a dear friend, tastes very different on a leisurely Sunday morning in the winter versus a hot summer day when you are rushing off to work, or have to tend to several errands.

Imagine for a moment if all fruits or all vegetables tasted the same way. How would it impact you?

Food and Culture

Become aware of the immense sources of pleasure brought to you by virtue of your taste buds.  If you were to confine food to sustenance and pleasure, your experiences in life would be limited: to connect with other cultures; to express an appreciation and acceptance of other cultures; to build bridges; to move beyond your boundaries; to introduce and encourage others to do the same.

How has your taste of food changed along your life’s journey or has it remained the same?

Is there a specific taste that appeals to you and for what reason? Is there a specific taste that you dislike and for what reason? What is your comfort food?  In what way does it soothe you?icecream-sundae

Tracing Your Roots

Now bring to your conscious awareness experiences of your life’s story, the roots of which you can trace to taste. Identify the many ways in which food and your family are closely linked.

december-17-holidaydinner-1060352_640What foods connect you to your family traditions, background, beliefs, cultural heritage, and celebrations?

What were the preferred tastes in your family – sweet, sour, bitter, salty, spicy? How did your family incorporate the different tastes of each family member?

What are the stories around family recipes that go back several generations, even to people you have never met but who have influenced you?

Evoking Memories

How does the taste of certain foods evoke memories of people whom you have met along your journey in life?

Are there certain foods that you have never tasted but have concluded that you do not or will not like? What are some of the places you have traveled and the foods you have eaten that are now part of your repertoire?

In the fullness of time, do you believe that taste can impact on the type of person you wish to become? What is the gift of your sense of taste?

Take a few minutes now before ending this meditation to write in your journal. Record what you want to take away from this experience and how it may help you become an even more knowledgeable, compassionate caregiver.

I wish you peace, patience, and joy in your caregiving today and every day!

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I owe a debt of gratitude to Merle Stern for composing this reflection as part of my series on dementia and the senses. Please feel free to share this meditation, referencing Merle and this website.

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Monica Heltemes is an occupational therapist with nearly twenty years of dementia care experience. Have fun with this activity about food that she posted recently on her website, “MindStart.com:”  http://www.mind-start.com/cinnamon-roll-sensory-Alzheimer-activity.html.

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What is spiciness? Watch this 4-minute TED educational video, “The Science of Spiciness,” by Rose Eveleth: https://youtu.be/qD0_yWgifDM.

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The choices you make about what to eat can have a lasting effect on your brain. To learn more, watch this TED-Ed lesson, “How the Food You Eat Affects Your Brain:” https://youtu.be/xyQY8a-ng6g.

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Here is a four-minute snippet from the movie musical, “Oliver!” This is the song the orphans sing before their meal of gruel: https://youtu.be/t9ZoZhfdo0A?list=RDt9ZoZhfdo0A.

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Alzheimer’s and the Senses Part Four: Taste

Taste is one of our five basic senses. It is essential for life, for it regulates our food intake and choices, nutrition, and overall health status.ice-cream-cone-1635436_640The current belief is that humans detect five taste sensations: sweet, sour, bitter, salty, and umami (savory). These taste qualities combine with oral sensations like temperature, aroma, texture, and spiciness to produce “flavor.” Flavor helps us recognize whether we’re eating beef or pork, a pear or apple, etc.

How Our Sense of Taste Works

When we’re born, we have about 10,000 taste buds in our tongue, roof of our mouth, and the lining of our throat. The taste buds are the sensory organs, clustered in projections or bumps called papillae. Taste buds perform the “task” of recognizing and generating the signals that lead to the brain. According to the Monell Chemical Senses Center, “Each papillae can contain one to seven hundred taste buds, depending upon its location on the tongue, roof of the mouth and in the throat. Each taste bud contains 50 to 80 specialized cells. At the top of each taste bud is a taste pore, a small opening where a few cells are exposed to the inside surface of the mouth. dec-5-taste-budThese exposed cells contain the receptors (microvilli) that detect taste stimuli.” The cells that are activated communicate with other cells within the taste bud, and relay messages to nerves traveling to the area of the brain known as the gustatory cortex. Some areas of the tongue are better at responding to certain taste than others.

Smell and taste are intertwined functions in our brain. As we age, we start to lose our taste buds. By age twenty, we already have only half the number of taste receptors we had in childhood. There is an even further decline as we continue to age. As we age, our ability to smell also declines. Food may begin to taste boring and bland, similar to when you have a head cold and blocked nose. Taste sensitivity and food preferences may change across our lifespan and are determined by many factors, including genes and experience.

Nutritional Health and Taste

Taste and appetite are closely linked. The taste of food in our mouth signals nerves to cause a release of hormones and enzymes in our saliva, stomach, intestine, and pancreas. These all contribute to how we digest, absorb, and metabolize nutrients as they are processed in the stomach and intestines, and then absorbed into our blood stream.

Persons with Alzheimer’s may develop a loss of taste due to the way the brain interprets the sensation of taste. They may adopt new food preferences and an increase in unhealthy cravings. Heavily flavored foods, either sweet or salty, can be more appealing to people with dementia because they don’t experience flavor in ways they once did. A preference for sweet foods seems to be innate in all humans. Enhancing food with herbs and spices may stimulate the appetite.

november-17-spices-1144423_640-1

In the later stages of Alzheimer’s, people may lose an interest in food and eating, and even forget that they have eaten. They may also be at a stage where they do not recognize the foods served to them or forget how to eat and use utensils.

How You Can Help

Taste is an important sensory experience that influences health. Here are a few ideas recommended by the National Institute on Aging:

  1. Ensure your loved one gets food with vitamins and minerals to stay healthy. Give them a variety of high-calorie, healthy foods to eat or drink, such as high-protein milk shakes.
  1. Foods that are bulky, sticky, creamy, and thick stay in the mouth longer and stimulate taste and sensory receptors for a longer time.
  1. Try marinating fish, beef, or chicken in sweet or tart fruit juices, sweet and sour sauces, or salad dressing.
  1. Prepare some food and beverages with lemons or oranges to give a tart-like taste. This stimulates the mouth’s sensory nerves and the sweet and sour receptors.
  1. Discuss the use of diet supplements with their doctor if you think they are not getting enough important nutrients and calories.
  1. Keep a routine, if possible, by trying to serve meals at the same time each day. This helps the body “get ready.” Eat meals together.
  1. Make meal time as pleasant as possible. Lessen distractions by turning off a radio or TV and putting on soft music.
  1. Sometimes a full plate or too many items on the table are distracting. Keep the dining table free from clutter.
  1. Check your loved one’s dentures to make sure they are tight fitting and in good condition. Sore gums or painful teeth could also be problematic.
  1. Serve bigger portions at breakfast, the first meal of the day. You may even have to revert to five small meals a day with snacks to ensure that they are getting enough nutrients.
  1. If your loved one has diabetes or high blood pressure, check with the doctor or a nutrition specialist about what foods to limit.
  1. If your loved one is at the stage where they have difficulty using utensils, switch to finger foods such as: cheese, chicken fingers, shrimp, fish sticks, sandwiches made with pita bread, fresh fruits, vegetables.
  1. In the later stages, your loved one may no longer be able to chew or swallow easily. Food must be soft enough to eat, such as: yogurt, soups, ice cream, applesauce, custards, bananas, mashed potatoes and gravy, milk shakes, and smoothies.
  1. Cold drinks are easier to swallow than hot drinks. Add thickeners to thin liquids such as coffee, tea, water or broth because these are hardest to swallow. Avoid using straws that might cause swallowing problems.
  1. Allow plenty of time for them to chew and swallow each mouthful. Don’t hurry them. You may even have to say “swallow” to remind them while gently stroking their neck in a downward motion.
  1. Your loved one may not eat much at certain times, no matter how well you plan or cook. They may simply not be hungry when you are ready to serve the food.

The sense of taste has a tremendous impact on a person’s quality of life. Caregivers play an important role both in encouraging and identifying eating-related problems. It can be a challenge when your loved one does not want to eat. Understand that eating is a complex process for a person with dementia: from forgetting to eat, to seeing food clearly, to the mechanics of scooping up food and bringing it into one’s mouth, to chewing and swallowing. Keep experimenting and tracking what you’ve tried. A relaxed and flexible approach to mealtime is important. Look at this as a time to connect with your loved one rather than a task to “get through.”

I wish you peace, joy, courage, and patience in your caregiving today and every day!

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For more nutrition tips, go to: http://www.alz.org/care/alzheimers-food-eating.asp.

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Dementia advocate and trainer, Teepa Snow, demonstrates tips on “Helping a Person Eat and Drink in Late Stage Dementia,” in this six-minute video:  https://youtu.be/sNPAESrllgQ?list=PLoHm_hpg785tIVS6Hbfm7UslSUMlZF3KX.

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The National Institute on Aging has an excellent article, “Encouraging Eating: Advice for At-home Dementia Caregivers.” It is a few years dated, but still contains good information. Check it out: https://www.nia.nih.gov/alzheimers/features/encouraging-eating-advice-home-dementia-caregivers.

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Final Gifts

It’s black on white – June 30, 2006 – the date on my mother’s death certificate. Even though she has been deceased for ten years now, Mom is very much with me in spirit today. I feel so blessed that I was able to be present when she passed away in the emergency room of a local hospital.november-angel-hand-and-rose-1548085_640

As I wrote in my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, “The images of her lovely, sweet toothless smile, her gentle spirit, and her last peaceful breath continue to stay with me” (p. 105). I learned so much from her throughout my life, but that day the lesson for me was not to be afraid of death!

My friend, Father Tom Schroer, S.M., Ph.D., had a similar experience with the death of his mother. He vividly remembers his mother’s last day of life, Saturday, March 24, 2007. In her fragile bedridden condition under hospice care in a nursing facility, his mother called each of her four children by name to hold her hand. Fr. Tom recounts it this way: “Taking my turn, I and my mother gently caressed each other’s hand for several minutes, without a spoken word – just the exchange of warmth and tenderness. It was a moment in time that I can still recall and feel deeply and gratefully whenever I want to return to that bedside image.” It is his mother’s “final gift” of warmth and tenderness that he continues to “unwrap” whenever he wants to recall that blessed exchange.

Alzheimer’s is a progressive and terminal disease that cannot be reversed. In 2015, it was the sixth leading cause of death. Alzheimer’s is a disease of the brain, but not the spirit. In the final stage of the disease your loved one usually can no longer communicate verbally. They are totally dependent for all their care, and for you to advocate and attend to their personal needs. There are still many opportunities in the last hours to connect with your loved one and honor their spirit and life.

It is important that we, as caregivers, ensure that our loved ones have a “good” end-of-life when that time comes. Our tasks at this phase of their life’s journey must be one of attentiveness, and  creating a soothing, peaceful atmosphere, no matter if they are at home, in an assisted living/nursing home, or hospital setting. It can be an opportunity to experience deep intimacy. Hopefully, prior to this time you were able to put plans in place for their end-of-life wishes and desired medical care.

How can one tell when it is near the end of life with a person with Alzheimer’s or other form of dementia? There are symptoms of later-stage dementia that can signal when a person is near the final stage of their illness. It is best to consult a family physician or hospice worker to diagnose this, but several symptoms include:

  • No speech, or limited speech to single words or phrases that may not make sense;
  • May sleep more during the day;
  • Inability to walk or stand, problems with sitting up, and become bed-bound;
  • Bowel and bladder incontinence;
  • Decrease in appetite;
  • Need help eating and may develop swallowing difficulties;
  • Weight loss;
  • Need help with all facets of daily activities;
  • Reduced ability to understand what is being said to them;
  • May develop infections such as urinary tract infection or pneumonia.

Even though their spoken language may be severely affected, your loved one may still use non-verbal communication and behavior to show their needs and feelings. Doctors tell us that even when they can’t speak or smile, their emotional memories remain. “Even if your loved one’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains,” notes Harvard Health Helpguide.org. While they may not be able to remember what you said, they can remember how you made them feel.

Here are a few things that you can do to make their end-of-life as comfortable as possible:

  1. Surround them with pictures and mementoes.
  2. Play their favorite music.
  3. Read aloud from their treasured books.
  4. Give them hugs to reassure that you are there for them.
  5. Hold their hands, gently stroke their arms, massage their arms or feet.
  6. Reminisce about life stories that bring comfort.
  7. Brush their hair.
  8. Check if they are in pain by looking for signs, such as facial expressions (grimacing), body language, crying, agitation.
  9. Continue talking to your loved one, even if you don’t think they are following what you are saying. They may still understand at some level and respond to the tone of your voice.
  10. Be willing to say goodbye and give them permission to “go.”
  11. Provide for a chaplain or spiritual leader of their faith community to visit and minister to them.

november-dusk-1004436_640Meaningful connections like these will help you meet your own emotional needs, as well as your loved one’s. Share the list above with family members or friends who may be reluctant to visit because they don’t quite know what to do or say that could provide comfort.

In their book, Final Gifts, hospice nurses Maggie Callanan and Patricia Kelley give examples how the dying leave behind gifts of wisdom, faith, and love for their loved ones to recall and carry close to their hearts. Being in the presence of a dying loved one can help us face our own mortality and teach us important lessons for living. Jade Alexander, author of Where Two Worlds Touch, describes her mother’s “final gift” this way: “Mom taught me how to love with my whole heart, how to organize my life around what really matters, how to be a good person, and how to accept and appreciate what is.”

“Unwrapping these ‘final gifts’ enables us to begin the healing and transforming of the incredible pain and sadness experienced with the loss of our loved one,” notes Fr. Tom.  The “final gifts” empower us to begin to establish a new connection with our loved one. St. John Chrysostom, an early Christian writer, wrote: “Those whom we love and lose are no longer where they were. They are now wherever we are.”

I wish you peace, courage, patience, and joy in your caregiving today and every day!

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Many thanks to Fr. Thomas Schroer, S.M., Ph.D., for sharing his experience and thoughts to use in this blog.

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Dementia trainer and advocate, Teepa Snow, talks to a group of caregivers about “Letting Go at the End of the Disease” in this short video: https://youtu.be/mNJxq4J5kYY.

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Dr. B. J. Miller is a palliative care physician at Zen Hospice Project who thinks deeply about how to create a dignified, graceful end of life for his patients. Take fifteen minutes to savor this moving talk, which asks big questions about how we think on death and honor life: https://youtu.be/apbSsILLh28.

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Create a personal website to share updates about a loved one’s health journey by going to: https://www.caringbridge.org/how-it-works.

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Take a few minutes’ break to listen to this beautiful rendition of the songs “Amazing Grace and My Chains Are Unbound,” by the Brigham Young University Singers: https://youtu.be/X6Mtpk4jeVA.  

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End-of-Life Decisions and Care

Let’s begin at the end. What do most of us wish for at the end of our lives? Dignity? Comfort? Respect? Love? These are the things I want for myself and my loved ones. If caring for my mother taught me anything, it was to be as prepared as possible for when that time came for her. november-luminous-sky-1107952_640

My experience with death in our family has been very limited. Neither I nor my siblings were present when my father passed away in the hospital in the early morning hours. Fortunately, I was present when Mom drew her last breath while she lay in a coma in a local hospital’s emergency room ten years ago. It was a peaceful passing!

I asked a friend of mine, Fr. Thomas Schroer, S.M., Ph.D., to share his thoughts and experiences with death and the dying. Fr. Tom’s mother was attended by hospice staff while in a nursing facility. He also has accompanied several dying individuals in their last hours. Fr. Tom shared   that it is important to have well-trained and caring professionals assisting families at the crisis time of a loved one’s impending death. It’s an exhausting emotional roller-coaster ride. Family members are bound to experience a range of emotions, even conflicting ones, when caring for a dying individual. In such a situation, caregivers are in need of support, as well as the dying person. “I remember so well the relief I experienced when hospice care providers arrived to assist my family during my mother’s last days,” writes Fr. Tom. “The healthcare professionals were committed to making her as comfortable as possible. We could now focus completely on supporting one another and my mother with the confidence that she was in good hands.”

Fr. Tom highly recommends reading the book, Final Gifts, by Maggie Callanan and Patricia Kelly, two hospice nurses. “As nurses for the dying,” write these two authors, “we see ourselves as the counterparts of birthing coaches or midwives, who assist in bringing life from the womb into the world. At the other end of life, we help to ease the transition from life through death to whatever exists beyond.”  As family caregivers, we increase the probability of the dying process taking place in the most lovable and caring manner possible, if we are able to envision the dying process as a “second birthing process.”

Since you want the best care possible for your loved one, a hospice provider can assist you in making that vision a reality, even in the familiar surroundings of one’s own home, if that is preferred. Health insurance will usually cover the expenses. It is important to check out in advance the reputations of the hospice providers in your vicinity. Fr. Tom notes that not all organizations are equal in terms of their professional excellence and care.

Death is part of everyone’s life cycle. However, it is rarely a topic for serious family conversation until a crisis. My family was so fortunate. Our parents took the initiative early in their retirement years to meet with a family lawyer to draft all the necessary papers for wills and advanced directives. They prepaid for plots at their local cemetery. My oldest sister was designated executor of their wills, while I was made their health-care surrogate. Following Mom’s diagnosis of Alzheimer’s and vascular dementia, I arranged for our parents to meet with a geriatric care manager/financial planner. My parents discussed these plans with all the family members. Dad kept all their important papers in a portable metal file case, with copies at the lawyer’s office. This made it easy for us to know where to look if anything happened to either one of them.

nov-writing-1149962_640Legal advanced planning is the best plan to have. This ensures the decisions you and your loved one wish will be honored without the expense, delay, or loss of legal rights that can go along with the court appointment of a guardian. If someone dies without a will, their estate goes into probate. The probate court then uses the laws of the state to decide who inherits what. If you already have formal documents in place, take a few minutes to review them now, in case they need updating.

My recommendations to caregivers include:

  1. Start the conversation with your loved one while they are still able to tell you what kind of end-of-life treatment they would accept or not accept. “The Conversation Project” offers a free starter kit online to help family members begin these discussions. (See resources below.)
  2. How would you/they want to be remembered? What matters most to you/them?
  3. What level of medical interventions do you/they want? CPR? Feeding Tube? Artificial nutrition? Pain control?
  4. Make sure end-of-life wishes are honored, not only with a living will or advanced directive, but also a POLST (Physician Orders for Life Sustaining Treatment). The POLST is a medical form that is legally recognized in many It spells out end-of-life treatments that you want or don’t want. Medical personnel, especially EMT’s who come by ambulance in a crisis MUST follow the instructions on a POLST. (See resources below.)
  5. Designate a health care surrogate for yourself and your loved one, as well as a person you trust who can serve as your agent with durable power of attorney. Consult with an attorney before making or revoking a Durable Power of Attorney.
  6. Look into what your local hospice services may have to offer if and when it comes time. If you think your loved one is nearing that time, discuss this with your family doctor. You can request an evaluation by a hospice organization yourself, but the formal request for services will usually have to come with a physician’s request.
  7. What type of spiritual practices and memorial traditions would you/they want?

Endings are extremely important and deserve our loving attention to details. Maggie Callanan notes, “Our dying is the ultimate signature on our life’s story.” Talking with family and friends, consulting with health and legal professionals, bereavement experts, and spiritual advisors can help you work through the grief and loss issues you will inevitably face. Knowing you have done all you can as a caregiver to be prepared will help you get on with life and loving and making wonderful memories in the current phase of your loved one’s life journey.

I wish you peace, patience, and joy in your caregiving today and every day!

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Many thanks to Fr. Thomas Schroer for taking time out of his busy schedule to share his thoughts about end-of-life care!

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The Conversation Project is a nonprofit organization devoted to helping families have conversations about end-of-life wishes. Their website is: http://theconversationproject.org.

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The National POLST Paradigm is a website that provides information about Physical Orders for Life-Sustaining Treatment: http://polst.org.

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Here is an interview with hospice worker Maggie Callanan, one of the authors of Final Giftshttps://youtu.be/kojj-OrS5Jk.

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Dr Jennifer Bute has released a series of short videos discussing dementia issues from her inside perspective as a person diagnosed with early onset dementia. Watch her seven-minute video about end-of-life issues: http://gloriousopportunity.org/dementia-issues.php.

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The Alzheimer’s Association has information to help with end-of-life planning at their website: http://www.alz.org/care/alzheimers-dementia-planning-ahead.asp#ixzz2lDd6TML2.