Beyond Coping: Having a Great Life!
Pam LeBlanc writes on Austin360.com: Exercise helps patients cope with Alzheimer’s Disease. Pam gives the example of John Duncan, a man with Alzheimer’s who enjoys life more with regular personal training than he did before personal training. The personal training experience gives him better strength, balance, mobility, and cognitive function. Thank you, Pam for a well written article.
To add to Pam’s article, I want to point out the depth of the impact that the personal training experience has on persons with Alzheimer’s such as John Duncan. The impact goes far beyond “coping”. When a person with Alzheimer’s is having a good time exercising, listening to music, making love, or simply holding hands, they are having a joyful life.
The word “coping” implies a contextual background of struggle, loss, or unfortunate circumstances. Seeing a “background”, for the context of an activity or how an activity occurs for a participant, is a higher cognitive function. Being aware of a context or background requires holding the past and future in mind at the same time with the present focus of attention. As Alzheimer’s progresses, background and context disappear as the mind only holds the present experience. Even if it is a memory that is the focus of the moment, the particular memory is experienced in the present without an additional context.
For John Duncan, training is its own enjoyable experience. During the workout, he is only present to his participation and is not concerned with whether or not he has Alzheimer’s, what he will do tomorrow, or what he used to have for a profession. His experience is not one of coping, but one of enjoyment of movement, fitness, nature, and the companionship of his personal trainer. He is free of worry and engaging in a workout in a way that is worthy of the aspirations of the most cognitively sound persons. John is well cared for. While enjoying his workout, John is having a great life!
Yes, exercise can improve the functions of the body, including the brain. But, the real lesson here is that the goal of therapies and interventions deserves to go beyond coping, relieving symptoms, and restoring function. Sometimes restoration is something that will not happen. The true goal is to have a great life, enjoying all that life offers that is available for the person to enjoy.
– David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Outcomes of Alzheimer’s Treatment: What Can We Strive For?
There is very little we can do to treat Alzheimer’s Disease. There are many ways we can treat people with Alzheimer’s. We have no path to eradicate Alzheimer’s from the body. We do have the means to bring joy, love, and comfort to the person with Alzheimer’s and their family and friends.
Don’t fight it. Don’t resist it. Let go of your dreams for a future that will never happen. Reconnect with the purpose of your life. Create a new dream consistent with the physical reality of Alzheimer’s Disease. Live a life of love and joy.
Let’s take this one step at a time.
- Don’t fight it. The usual desired outcome of the treatment of disease is the alleviation of symptoms and the return of function to levels prior to the onset of the condition. With the therapies available for Alzheimer’s today, I’m sorry, that is not happening. So, we have to adjust our expectations and create a new vision for the outcomes.
- Don’t resist it. We can’t turn back the clock to regain the cognitive function prior to the onset of Alzheimer’s. We can’t stop the progression of the brain deterioration. Perhaps someday, but we can’t arrest this disease today. Rivers will always flow from the mountains to the sea. Carrying seawater up the mountain will only make you tired; it will not reverse the flow of the river. Today, we have no way to reverse the cognitive decline of Alzheimer’s, so let’s collect our energy and go with the flow.
- Let go of your dreams for a future that will never happen. You never planned on a life with Alzheimer’s Disease, so don’t be surprised if your dreams for your future are inconsistent with the presence of Alzheimer’s. This attachment to a future that is now inconsistent with the reality of Alzheimer’s is the great source of disappointment and sadness that accompanies Alzheimer’s. If you have Alzheimer’s, you’re not going to manage a large investment fund or be the project manager for the construction of a new skyscraper. If your spouse has Alzheimer’s, your conversations are going to be different than they were in your spouse’s cognitive years.
- Reconnect with the purpose of your life. Love, joy, beauty, companionship, contribution, and community are always available. Sooner or later we all return to earth, ashes, and dust. When our bodies are spent, we become the raw materials for new life. The purpose of life has not changed since the dawn of time. If your happiness is conditional upon the presence of something that did not exist two thousand years ago, then consider that you are disconnected from what is really lasting and nurturing.
- Create a new dream consistent with the physical reality of Alzheimer’s Disease. Who will share the caring duties? Who will share the love? What do you like? Who can you do it with? What else will you find to do when Alzheimer’s withdraws an activity from your access? This is where those with cognitive abilities must imagine and act for those with Alzheimer’s.
- Live a life of love and joy. I prefer love and joy to the available alternatives. You might not choose your physical diseases, but you can choose how you experience your life. You choose what is important in life and to what you give your attention. You can give your attention to losses and that which you do not have and will never have, or you can give your attention to what is available that you like and in which you find fulfillment. The focus of your attention IS your experience of life. I suggest you bring your attention to the love and joy in life. If you don’t see it, keep looking. It is there as long as the sun shines and the wind blows. If you don’t experience the love and joy in life, then your attention is on other, non-joyful, matters. Finding the joy and establishing yourself in it requires constant effort of the most rewarding kind. Keep at it!
OK, your life is not as easy as reading a blog. I suggest you gather with friends, family, and your community. Having a joyful life requires working on finding joy and then working on cultivating joy. It’s a big job that is most effectively done with others. Can you think of a better purpose of your life or better outcome than love and joy?
– David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
The Purpose of Life is Found in Caring
An editorial in The Florida Times-Union warns that the US is on a track to spend $40 trillion on Alzheimer’s care in the next 40 years. Are there a solutions to this problem?
Yes, there are solutions. These require new thinking. The thinking that memory care needs to cost $84,000 per year is broken. The lack of strong medical models for intervention, prevention and cure call for sustainable care models.
The solution resides in our neighborhoods and families. Keep in mind that you have a place in these statistics! The one-in-eight mentioned who will develop Alzheimer’s includes your parents, your siblings, your friends, your neighbors, and YOU! Are you the one diagnosed or among the seven friends and family members?
So, let’s make it personal and assume that YOU have the diagnosis. As your cognitive abilities decline, how will your emotional and spiritual health be cared for? How will you avail yourself of the beauty and joy the world still offers? Who do you want near you? Whose face will bring you comfort? Whose touch will make you feel alive? What music will make your spirit dance?
You live in a place you love, don’t you? Isn’t that why you moved into your neighborhood? Do you have friends or family in your neighborhood? Do you belong to a religious organization or service club in your neighborhood? Do you know the people you see at the grocery store or hardware store or park or bus stop? If the answer to all of these is “no”, then consider enjoying your neighborhood more or moving to someplace you can enjoy.
The current model of $84,000 per year care is based upon moving you away from your neighborhood to a place where strangers will attend to what needs they can until you are dead. It may be a difficult long journey for your friends and loved ones to visit, so visits will be infrequent. There’s not a budget to get you to your Rotary Club meetings where you’ve had lunch on Tuesdays for the last 30 years, so you will have to make due with whatever appears from the mysterious kitchen and an activity designed for people like you. The problem is that you are not like other people and your friends and family know what you respond to on levels beyond cognition.
It costs about $100 per day or $36,500 per year to care for a person who is not well enough to live on their own. Every neighborhood should have such a home. This cost level is achieved at a home with 10 to 12 residents when there is a mixture of residents with and without cognitive impairments and physical impairments. Concentrating and segregating persons with Alzheimer’s degrades YOUR quality of life, drives up costs, and isolates you from the life you have created for decades.
A solution involves creating a home in your neighborhood where you can go to complete your life when living in your home becomes unworkable. The solution involves you participating in caring for your family member, friend, and neighbor while you are still able and receiving the care of others when you need to.
Your “primary caregiver” needs support and you need the support of more than one person. It is a lot of hard work to keep joy afloat in your life and it is the most rewarding work! Before your cognition declines too far, organize your friends and family with lotsahelpinghands.com so that many people can share the effort of helping you complete your life in a loving, dignified and enjoyable way.
Caring for others is not a burden and distraction from the opportunities of life. Caring for others, and being cared for, is the POINT of life. Yes, I am revealing to you the meaning of life! Remember that when we share the load, we can carry any weight. When we share the work, we can build a structure of any size or a road of any length. To ignore life’s opportunity to live and complete life in community is to be ignorant of the source of joy and happiness in the world.
The frailty that accompanies the completion of life is our invitation to participate fully in life. When we engage in this process as a community, it is enriching. When we outsource love and care, it is very, very expensive.
– David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Joy: The Antidote to Misery and Suffering
To pursue joy is not to whitewash the challenges and sadness of life. Sadness, fear, and challenges are very real experiences. These experiences distract us from the joys of life and it is critical to the happiness of everyone to complete them and move through them appropriately and NOT GET STUCK. We see supporting examples of this in many cultures around rituals and practices of burial and grieving. There is an appropriate (although not precisely fixed) time for grief and an appropriate time to move beyond grief.
There is a distinction between validating an experience of fear and validating that which is feared. Here is an example from my past: When caring for Carl through the early stages of Alzheimer’s, I have a valid experience of fear of handling his care when in the future he would become incontinent. I know it will happen. I’m grossed out by the thought of it. Will he let me help him? What if he is combative? However, I do not need to validate incontinence as being fearsome. Doing so would only impede my ability to move through my experience of fear and be prepared to handle assisting Carl with toileting and incontinence. In truth, incontinence is not fearsome, it is just human hygiene. It is also true that it is valid and common for people to have a fear of assisting the incontinent when they have no experience in doing so.
So, at that time of fear I look for what is joyful: Carl is my friend. He trusts me to care for him. Making sure he is clean and comfortable is one way to express my love for him and give him a good life. When I help him use the toilet at a concert hall, we can comfortably get back to our seats and enjoy the music. When I help him in the family restroom at the stadium, we can get back to enjoying the ball game in comfort.
In this way, looking for joy helps us acknowledge, complete, and move through times of fear, sadness, and loss. It is OK to experience these feelings. It is not OK to be stuck there, bear with it, and just get through a miserable day to recreate the misery tomorrow. That is a life of suffering and I insist we interrupt suffering with joy. The alternative is unimpeded and uninterrupted suffering. I’m not OK with that, are you?
I stand for people having joyful lives in any and every circumstance. Will you join me? What do you stand for?
Find your joy!
– David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Beautiful Mortality! A Letter to Those With Alzheimer’s
My Dear Friend,
Great sadness and disappointment are born of hope and attachment to a future that never was and never will be. Waiting for joy in the future or looking for joy in the past denies us of the only source of joy: the present. We only experience love in the present. We only experience laughter in the present. Even our memories are only experienced in the present.
In a blink of time we are born, live our lives, and are gone. There is always one part of the body that malfunctions first. With Alzheimer’s it is the brain. Some people live only minutes, others hours, others years, and some live for decades. Very few live more than a century.
Who are we to complain that we are mortal? It is our mortality that gives us appreciation and beauty. It is in our mortality that we experience our senses, love, friendship, and companionship. As your Alzheimer’s progresses, your body and your emotions will still respond to touch, music, and warmth. As your brain fails you, celebrate the rest of your being. Surround yourself with love, laughter, and colors. Give the gift of a cheerful countenance to those you love and your love will live on in them after your body is gone. That is how people have lived from the dawn of human kind. The names of our ancestors are gone, their worldly deeds are gone, but we still can experience their joy in the language and culture left for us.
Find joy in this world, my friend. Find joy in trees, in animals, in the wind, and in the sea. Find joy in the eyes of your family, in their breath, and in their heartbeats. Search for joy in no moment other than the present. Long for no past or future. The promise of life is here and now and it is beautiful! In a hundred years we remain in the love we live today.
With all my love,
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Joy: The Primary Focus of Care
I assert that love, joy, and companionship are the fundamental requirements of Alzheimer’s care. Any other care that may be regulated and enforced to ensure physical health and safety should be delivered in the context of ensuring the presence of love, joy, and compassion. If the delivery of food, shelter, medicine, hygiene, and other physical care is made in the absence of love, joy, and companionship in the experience of the receiver, then the delivery is inadequate.
Physical suffering is obvious to a third party and therefore easy to regulate and intervene upon by an observer. Mental and emotional health are less obvious and require much more attention to discern and attend to. Spiritual health is still more subtle. The cultivation of understanding of the mental and emotional health of another person is accomplished in the context of personal relationships over time. Particularly skillful and sensitive persons can sometimes gain insights to the joy and suffering of an individual quickly, but time and relationship must be respected as the primary sources of authority. Spouses, family members, and carers with long-standing relationships and observable commitment to a person being cared for can create a mentally and emotionally safe environment that overrides some apparent physical hazards or threats.
In situations where the person being cared for has dementia, great considerations must be addressed when removing a person from their mentally and emotionally safe environment to provide a more physically safe environment. If the provision of a physically safer environment causes enduring mental and emotional misery, a great assault on the person’s humanity is committed. The person with dementia is often unconcerned and unaware of their physical condition and their world perception is in the mental and emotional realm. With Alzheimer’s related dementia present, Maslow’s hierarchy is askew and the sense of love and belonging is a more basic need than physical safety. In this context, without love and belonging, a physically sustaining environment is a prison of loneliness, sorrow, and grief with no hope for parole.
An article on Chill4Us.com explores the question “What good is it making someone safer if it merely makes them miserable?” as a legal inquiry. The crux of the problem is in the headline, which implies that misery is unrelated to safety. This is a false premise. Misery is a threat to the safety of basic measures of health of the human condition: peace, love, and a sense of belonging. To introduce misery is to threaten these securities. Misery is an unsafe condition.
In the physical human form we experience the mental, emotional, and spiritual worlds through the relationships we develop with others and the physical world. The only proper context for physical care is in support of a JOYFUL mental, emotional, and spiritual experience.
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
The Upward Spiral of Joy
Today has everything the world offers. Look no further for your next action or your next joy. The door to the world of joy is open today.
Beware expectations of the future. We have only today. Today the world turns. Today the world turns. Today the world turns. What is a day? Why slice up your life. We have only this breath, this breath, this breath.
Collect the joy of today into your heart. The future you imagine arises from today only. Look around for the beauty and love that today offers you. Yes, today offers you non-joy AND today offers you JOY! What are you filling your mind with? What are you filling your heart with? Choose your filling! What will it be? Sadness, mediocrity, or joy? I recommend the joy with a generous topping of love.
I recall Carl’s Alzheimer’s progressing:
Carl looks at me, confused as to how he should feel. He seems to notice what busy minds miss: he’s never had this moment before. However I am being, Carl mirrors me with magnification. If I am sad, Carl is sullen. If I am happy, Carl is giddy. When I am with him, I am his world. I notice this, so I make an effort to fill myself with love and joy. I pay attention to be clear in my communication with my wife so I can carry happiness from my marriage with me into my visits with Carl.
I discover an upward spiral of joy. If I show up with joy and love in my heart, Carl begins to reflect it back, making me more at ease and happier still. If I am forgiving with him, he finds comfort in my presence making me aware that my efforts bear fruit in his peace. For me it is like walking into the house of life with a stairway down into the dark basement and another to the patio on the roof under the open sky and sunshine. We always have that choice. I like the view from the roof. It is more work to climb the stairs, but that is where the joy is.
Be at peace with today. Create an upward spiral of joy!
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
The Difference Between Alzheimer’s and Dementia
People at my talks often ask me, “What is the difference between Alzheimer’s and dementia?”
According to the Merriam-Webster Medical Dictionary, “disease” is “an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.”
A disease is physical: “an impairment of the … body or one of its parts.” If you look at the brain of a person with Alzheimer’s disease after their death, you find plaques on the brain that impair nominal functioning.
Dementia is a symptom of disease. When the “vital functions” of the brain are modified in such a manner as to cause wandering, hallucinations, or particular other behaviors or cognitive failures called dementia, these are symptoms.
So, a particular disease has a particular physical pathology. “Dementia” has no particular pathology. According to the definition of “disease”, dementia actually falls into the symptom or expression of the disease; the interrupted or modified “performance of the vital functions … manifested by distinguishing signs and symptoms….”
In other words, dementia is not a disease, but the signs and symptoms of disease. You will not find dementia in an autopsy. This is why we speak of “Alzheimer’s related dementia” or “dementia related to multiple strokes.” The disease is Alzheimer’s in one case and strokes in the other. The symptom is dementia.
Love,
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Hiring Friendship in a Care Home
Are you happy with all the caregivers at a facility where a loved one lives?
The job descriptions of caregivers do not say “friend”. So, don’t expect it. Their performance is not evaluated on their friendship. So, don’t expect it. The structures of the homes and the evaluation of performance of managers and administrators do not emphasize friendship. So, don’t expect it. That is unrealistic.
It is more natural for a person to befriend and love another person than it is for them to put on a uniform and go to a job for a shift of 8, 10, 12, 24, or 72 hours to keep records, follow procedures, be mindful of regulations, and tend to whatever pleases their supervisor. It is unrealistic to think that it is more difficult and takes more time to train a person to be loving and compassionate than it takes to train them to bathe, dress, transfer, feed, and assist another person in the use of a toilet. People who are suitable to care for the elderly and frail have experienced friendship, joy, love, and companionship for many more years than any formal training in policies, procedures, and regulations.
Why are people with Alzheimer’s and other conditions of frailty dying of boredom, loneliness, and helplessness in beautiful homes staffed by capable, “well trained”, compassionate people? Because it is UNREALISTIC to expect joy and companionship to flourish where the center of efforts is on business structures and regulations.
Only when the joy, love, and companionship of those being cared for are the measures of effectiveness and success of caregivers, staff, and administrators will the opportunity for joyful living and a comforting completion of life be fully realized. When a caregiver is asked, “What do you do for a living?” they should be able to respond, “I love people.”
How do you do this if you are running a care home? You begin by putting love and concern for the joy of your residents and staff (yes, staff) first. Only joyful staff can cultivate joy for residents. Then put joy and friendship first in the job descriptions. You must expect it and participate in it. Pay the staff well and give them shifts that leaves them energy for their families. Train them to first attend to the joyful experience of those they care for. There are some simple approaches to this in my book, Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s.
If you want assistance in making joy and friendship central in the lives of residents and staff for a home you manage, then I will help. I am committed to making a joy filled life available to people in all circumstances. I have done it and I know what it takes when Alzheimer’s is present. What are you committed to?
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
David is the founder of Holistic Community Living, a Colorado nonprofit founded to operate and teach others to operate neighborhood-based assisted living homes where people can complete their lives with those they love.
Friendship – the Vehicle of Joy
What can make the difference in caring for someone with Alzheimer’s Disease?
Friendship.
When caregivers and those with Alzheimer’s are friends, they are watching out for each other. A friend does not miss an upset and can enter your world in a moment and hold your hand and lead you through any darkness into a smile. Love between friends is palpable. There is no loneliness in friendship. When you are with your friend and you are in your friendship, joy is available! Circumstances do not matter. A friend does not turn their back when you are in need. A friend has time. A friend listens closely to both verbal and non-verbal communication, knows what you like and what makes you laugh and uses that knowledge to lift your spirits. A friend delights in your presence, appreciates your every breath and tells you.
Am I suggesting that every relative, caregiver, social worker, and staff person in a home caring for someone with Alzheimer’s should be committed to the person with Alzheimer’s as a lifelong friend? Yes. This is an environment that can not fail to produce a joyful life for all. While this does not remove the medical condition, it cures the dis-ease. When every dollar spent on Alzheimer’s produces a smile on the face of a patient, family member, caregiver, or friend, then Alzheimer’s will be welcomed as a wellspring of joy. Let’s put the money where the joy is.
When someone looses the past, give them a present of love and joy. Do not rob their present with sadness, remorse, and pining for disappointments of plans for a future that never was and will never be. Share love NOW. There is no other time.
Love,
David
David Lazaroff is author of Live It Up! 10 Ways to Share Joy When Your Friend Has Alzheimer’s. David coaches family and friends of people with Alzheimer’s Disease in creating a fun and joyful life. Contact david@holistic.com
