Dementia Caregivers Quotes

To care for those who once cared for us is one of the highest honors.

Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.

Caregiving often calls us to lean into love we didn't know possible.

In the heart or every caregiver is a knowing that we are all connected. As I do for you, I do for me.

I love you but I got to love me more.

By loving you more, you love the person you are caring for more.

The power of intuitive understanding will protect you from harm until the end of your days.

Many of us follow the commandment 'Love One Another.' When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the 'Love One Another.

First do no harm. -Hippocrates Second, do some good. -Anne M. Lipton, M.D., Ph.D.

A mom’s hug lasts long after she lets go. ~Author Unknown

Never give up hope! If you do, you be dead already.

Never give up hope. If you do, you'll be dead already.--Dementia Patient, Rose from The Inspired Caregiver

My caregiver mantra is to remember 'The only control you have is over the changes you choose to make.

Offering care means being a companion, not a superior. It doesn’t matter whether the person we are caring for is experiencing cancer, the flu, dementia, or grief. If you are a doctor or surgeon, your expertise and knowledge comes from a superior position. But when our role is to be providers of care, we should be there as equals.

This woman had no idea who I was. She has no idea I was once a smoker, was thrown out of boarding school twice and a certified rebel with strong opinions. To her, I was new, fresh, immaculate to the bone. This was all strangely wonderful.

You will never experience personal growth, if you fear taking chances. And, you will never become successful, if you operate without integrity.

Never give up hope. If you do, you'll be dead already.-- Dementia Patient Rose in The Inspired Caregiver

Caregiving will never be one-size-fits-all.

Be like a duck . . . keep calm and unruffled on the surface but paddle like the devil underneath. —Unknown

Memory is so integrated into every aspect of life—from thinking, to communicating, to forming and sustaining relationships, to creating continuity, meaning, and coherence—that its disappearance is incomprehensible. We simply have no cognitive framework that allows for its absence in others.

I believe that most caregivers find that they inherit a situation where they just kind of move into caregiving. It's not a conscious decision for most caregivers, and they are ultimately left with the responsibility of working while still trying to be the caregiver, the provider, and the nurturer.- Sharon Law Tucker

Everything is in the process of being forgotten. But who we are—who we have been in mood, in personality, in character—persists much longer

She looked like some damn fool angel that didn't even know the name of God.

In Dementialand I was able to see for miles without the yesterdays and tomorrows obstructing my view. It was difficult and so simple all at the same time.

I saw my mother with eyes opened and not curtained by her motherhood or my ego.

The idea of disassociating from one’s surrounding, of taking a step back was rather clever on my mother’s part without her notice.

People who have dementia need to have structure and routine every day, in order to get a better day.

Age On Purpose. Be intentional in your journey. You define aging. Don't allow aging to define you. It renders helplessness.

Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver…It is an approach that everyone can use. It can help slow you down some so you can make the best possible decisions for your care recipient. It also helps bring more balance and ease while navigating the caregiving journey.

Even though people experiencing dementia become unable to recount what has just happened, they still go through the experience—even without recall. The psychological present lasts about three seconds. We experience the present even when we have dementia. The emotional pain caused by callous treatment or unkind talk occurs during that period. The moods and actions of people with dementia are expressions of what they have experienced, whether they can still use language and recall, or not.

Does she know she is not well? Does she know how she was before? Does she remember her past? Then I realized "what about us", our 43 years of marriage, does she remember that past? She recognizes me well but how far back? Did our marriage begin in 1979 or 2017 when she was diagnosed? I wasn't sure where I was in her memory, her friend or her husband.

Memory, then, is not simply about remembering, and memory loss is not simply about forgetting. An altered memory is about more than pluses and minuses, deficits and surpluses. A dramatic change in memory changes everything because memory has a hand in everything. Memory is so integrated into every aspect of life—from thinking, to communicating, to forming and sustaining relationships, to creating continuity, meaning, and coherence—that its disappearance is incomprehensible. We simply have no cognitive framework that allows for its absence in others.

For me as a spouse of a husband who is sexually competent, this is a big issue for me. Not because I desire sex, but because he does. He has become like a child in many ways. Yet, even as his abilities and personality diminish, he still wants us to act like we always have as husband and wife.

How do I connect with my wife and get her to connect with me? This is always a constant desperation on my part especially because she doesn't speak. I am always afraid she will stop connecting with me, especially when I get that blank look, that daze into no man's land. That is the day I am trying to avoid. Everyday, every moment I can, I try to create an opportunity to “connect” to avoid her shutdown.

The real scary moment for me is when she wakes up in the morning and I greet her, she stares at me as if she doesn't recognize me. There is a gaze and no "connection" which really scares me. I ask her "do you want a big kiss or small one" and she sometimes gestures a small one. If no answer I just kiss her anyway and she responds with a smile, now I am "connecting". I pray that gaze of no recognition in the "wakeup" never lasts forever. "Please God, don't let her go into Neverland

Things are never going to be the way they used to be. Choosing to see situations with a different perspective improves everyone’s attitudes and temperaments. Also, you are more likely to achieve a favorable outcome for both of you. Changing your mindset will affect a positive change in theirs.

There are two main approaches that help during this period of changing roles: (1) recognizing and acknowledging changes as they occur and (2) allowing yourself to grieve what was and is no longer. Few approaches to change cause more pain than clinging to old patterns. The more we insist on having what has been, the harder it becomes to see the joy in what remains. And the good news is that there is a great deal of joy yet to come your way.

The fear brought on by a loved one’s dementia diagnosis is staggering. We’re on a bus ride down a congested street, and there’s no driver at the wheel. Here’s where we say that if you aren’t freaking out, you clearly don’t understand the situation. The future looms large. The most dire scenes play through our minds. We hardly know where to start. Much of our fear comes from feeling like we’re totally unprepared to take on the task ahead. Most of the time, we are totally unprepared. Have you ever watched someone else walk through dementia caregiving? Probably not.

One of the things Mom’s journey with dementia has taught me is this: Life is in the small things, like the word “Amen”—a simple agreement, a yes to words prayed, and a statement claiming the promises of God. I’ve cried and begged for Mom not to have to go through this valley of loss, but it has come regardless. Now my one plea is that—in all that she has or will lose—she will never lose the love of God and her family. That is a truth worth saying “Amen” to.

I like to remind people that dementia caregiving is a voluntary job. As harsh as it sounds, we always have the right to walk away. Nobody has to do anything. We may feel like we have no choice in the matter. But feelings aren’t facts. The fact is we all have the right to say no. I just want you to remember that there are other options. If it ever becomes too much, you don’t have to sacrifice yourself in the process. What is the value of the rescuer going down with the one in danger? Not to mention that you deserve to survive with a shred of sanity still intact. We caregivers are notorious for ignoring our own needs until we’re forced to take care of them. We go without sleep. We eat too much junk food or forget to eat at all. We don’t have time to exercise. We isolate ourselves because no one understands us anyway. We foster these habits at our own peril—and that of our loved one. The reality is that none of us is superhuman.

The losses caused by dementia aren’t as clear as a loss by death. When someone dies, we know when it happened. We know how it happened. We take part in certain rituals to mark the event. Our sorrow is understood by others who offer condolences and support. Those things don’t happen with the slow but inevitable losses of dementia. What we experience is called ambiguous loss. Ambiguous loss and the subsequent grief can come from two scenarios. Either someone is physically absent but emotionally present or they’re physically present but emotionally absent. They’re here, but they aren’t here.

Sorrow and grief become constant companions as we experience losses both big and small. Dementia has been called “the long goodbye” for a reason. Anticipatory grief is also a part of the caregiver’s journey. We know how the story ends from the day we hear a dementia diagnosis. We try not to dwell on our loved one’s demise, but that reality bubbles just below the surface of our everyday lives.

True wisdom lies in the deliberate pursuit of a life filled with purpose, mindfulness, and compassion. Live each moment with intention, for it is in these moments that the essence of life is truly discovered.

Tears water our eyes. "Remember," mom soothes, "like the beautiful blooms beneath the weeds, Nana is still Nana underneath.

Stay with them in the time and place in which you find them. THEY CANNOT ENTER YOUR WORLD, BUT YOU CAN ENTER THEIR WORLD.

The part of the brain that holds music, prayer, poetry, and art are least affected by dementia.

Why do milking stools have only three legs? Answer – Because the cow has the udder Sometimes, you've just got to laugh.

When you were born, You cried and the world rejoiced. Live your life so that when you die, The world cries and you rejoice.

The author "nails it" in terms of how to deal with a parent's dementia. Rather than browbeating the subject, the author "plays along" and tries to enter the subject's own dementia-challenged "reality." The book contains excellent coping strategies and methodology for dealing with someone suffering with and enduring the pain of dementia or Alzheimer's. It does so with sensitivity, candor and laugh-provoking humor.

It is often difficult to answer the same question repeatedly, but it is more difficult for them to realize they never seem to have answers to life's questions. Try to look at life from the perspective with which your loved one is living. It will help you see things differently.

The events of life are not so important. The moments are essential. It is all about relationships.

So began a kind of magic in Dementialand that took place most nights after the day’s sun went down.

Violet believed that Jewish people made good doctors and lawyers, a thought that came to the front of her head suggesting she might need one.

Violet screamed into her pillow so loudly she scared herself. Her head hurt. It was as if all her memories were trying to kick their way out. They were finished and wanted to leave.

Even though people experiencing dementia become unable to recount what has just happened, they still go through the experience—even without recall. The psychological present lasts about three seconds. We experience the present even when we have dementia. The emotional pain caused by callous treatment or unkind talk occurs during that period. The moods and actions of people with dementia are expressions of what they have experienced, whether they can still use language and recall, or not.

It all started with that damn fall. My mother pressed a full roll of paper towels against her head to stop the bleeding and drove to church. Her fall and bloody eye would have been a poor excuse to the Gods who appreciated the sacrifices of a good martyr.

Her eyes were trained to see the missing parts of the world.

Her memories got dizzy and fell out of her head.

Violet wasn't sure what she was saying. Words fell out of her mouth with no mind and no malice.

Violet kept her visits private and never told me where she went. I really never asked. I believed the dementias gave her special powers.

There is magic just outside our memory.

An angel with dark hair caught Violet. His soft curls were loosely pulled back and tied together at the base of his neck. He wore Jesus sandals made by Nike.

Screams broke the holy deadness in the church. "Violet, vwaht on God’s earth happen to you?"... "Oh Lord, she'za been mugga." The rank of service reversed its order. The ladies were now the apostles of the moment.

Violet unwrapped everything old as if it were a ribboned gift given to her by the Gods.

My mother made that dress. She’s somewhere in its unsettling pattern.

My mother had a way of accessing the energy of the people around her. There was no need to know their name, who they were or how she knew them. She didn’t recognize their surface. She went much deeper.

The lady roommate said very little and chopped off the better parts of her story.

There were thousands of secrets hidden in her purse, secrets and memories that took her elsewhere. She held onto them tightly and kept them to herself. Even God did not know of them.

When our expectations match our companion's capabilities, there is less stress for both parties. This is the secret to improving the dementia caregiving experience.

ahead and do this. If you will reach a point at which you will need Medicaid to pay for your loved one’s nursing-home care, Medicaid will require you to take some of the last remaining funds and preplan the funeral, to be sure that your loved one’s estate provides the funds for this final act.

They lived with us. Maybe there were twenty or more. At one time I counted 28.

My mother is in a home for people with dementia. She’s stuck in the past. The caregivers, of course, don’t know what a wonderful and exciting life she had before the Alzheimer’s. I put a large photo of Mother in her youth on her apartment door. The nurse and the helpers responded so favorably that I hoped to do more along the same line.

Former Chief Neurologist at Miriam Hospital, says Mellor's book "...offers a wealth of information for caregivers," while "the mixture of prose and poetry is refreshing.

I'm in awe of people who deal with Alzheimer's, because they have to deal with death 10 times over, year after year.

When someone you love has dementia, you too experience a form of anticipatory grief, but yours may extend over a longer period of time (for some, as long as 20 years) and be socially unrecognized and surrounded by uncertainty.

How do I connect with my wife and get her to connect with me? This is always a constant desperation on my part especially because she doesn't speak. I am always afraid she will stop connecting with me, especially when I get that blank look, that "daze into no man's land."That is the day I am trying to avoid. There are different things I do, depending on the moment and situation we are in, always taking every opportunity I can to promote interaction with her.

Within a year of retirement, Dad showed the early signs of dementia. By 2017, his symptoms were declared mid-stage by his family physician. It's a sad truth, but ultimately, we don't choose the course of our lives.

We need to allow our loved ones to have ownership of the negative emotions regardless of our full understanding. This is not about whether they should or should not feel a particular way. All that matters is how they are feeling and what needs to be done to help them achieve a positive emotional state.

My name is Mary, an Occupational Therapist here in Austin, TX. I’ve been working as an OT for over 9 years, and I decided to create my own OT consulting company here in Texas. Over these past 9 years, I’ve worked in nearly every OT setting and my passion has always been helping those with dementia, along with providing caregiver help & support.

Here’s a routine you can try this week. Write down the five senses: sight, hearing, taste, smell, and touch. For each sense, name two things you love. You now have a list of 10 delights. At the end of each day, look at your list. How many delights did you give yourself that day? Make a goal of not letting a day pass without indulging a minimum of two senses with something you love.

Part 3 takes a look at the challenges of diagnosing and treating brain diseases. What should you do if you notice the early signs? Are they symptoms of another health condition that mimics dementia? Why have our research and clinical trials failed so miserably in coming up with cures and drugs to treat neurodegenerative ailments? What treatments are available at all levels of severity? How can a spouse remain healthy while caring for a partner with dementia (caregivers have a much higher risk of developing the disease)? Dementia is a moving target; caring for someone with the disease can be one of the most challenging jobs ever undertaken. No one learns in formal schooling how to deal with a loved one whose brain is in irreversible decline. For some, the brain changes are slow and subtle, taking years or even more than a decade for symptoms to become pronounced; for others, it’s sudden and rapid. Both circumstances can be difficult and unpredictable

Like Carl Sandburg’s ‘Fog,’ dementia comes creeping in on little cat feet and then sits on silent haunches looking around. The shift from partner to caregiver demands a new stance with your spouse or life partner and with yourself. I became increasingly responsible for both sides of the relationship and all it’s concerns. The world began to tilt.

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Minimize the fear of caring for someone with dementia, and preserve the caregiver’s sanity with personal, functional tips to understand and cope with the disease.

They wheeled my father up. "Hi Dad," I touched his hand, which was locked down under a thick restraining belt. His sweat pants were stained with food; the socks on his feet were twisted and wrong. "We'll meet you inside," I yelled. My father craned his neck and answered: "Two. Four. Seventeen." The New York Times Magazine, LIVES

When I interview caregivers and ask what the church can do for them, the most common response is: They simply want the church to be present in their lives through the journey of dementia. They do not want to be alone.