Alzheimer's 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.

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.

The phrase 'Love one another' is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect. It may be our sons or daughter-in-laws, our neighbors, friends, cousins, stepchildren, or stepparents whose love for us has assigned them to the honorable, yet dangerous position of caregiver.

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

Embracing a healing presence requires you to just be in the moment together.

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.

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

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.

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

He was having one of those lucid moments that make you, as a loved one of an Alzheimer's victim, forget for a minute or two that this is all really happening. You can forget about the disease and its toll and confusion and suddenly engage with the same person with whom you conversed profoundly for so many years, until it all started to go haywire. In that moment I wanted to know what I think so many Alzheimer's caregivers crave to understand: Do you know what has become of you? Can you, so lucid now, see how you act when you are not like you are now? Does it make you sad? Does it make you ashamed? The reprieve right there at the red light was momentary, even illusory. But there for the taking, right in front of me--so obvious that I almost panicked over what to talk about. Do we discuss his beloved baseball? His beloved grandchildren? Me--how I'm doing, how much I miss him? No. As much out of curiosity as concern, I wanted to talk about him. "Dad," I said, "you are losing your mind. You know that. How does that make you feel? How are you doing with that?" "I'm doing the best I can with what God has given me," he said.

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

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

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

One goal of the mindful caregiver is to find ways to not feel ‘dis-eased’ in the caregiving process.

I don't regret any of the treatments we tried or the care-giving I did. My only regret is that I wasn't able to cure him.

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

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day. I

As your care recipient’s advocate, be involved, don’t accept the status quo, and don’t be afraid to voice your concerns.

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.

The problem is understaffing. The problem is undertraining. The problem is high caregiver turnover. The problem is paying minimum wage. The problem is the eldercare industry. (I could go on, and so I will: The problem is undervaluing the elderly. The problem is fear of aging. The problem is fear of dying.)

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.

There are times when we cannot function and we need to withdraw and regroup. There are situations that we know we cannot handle. In spite of all the pushing and urging of friends and family who insist that we will have a wonderful time, the patient senses that it will lead to his mental devastation. If I do not listen to my body and withdraw from the overstimulation, it takes several days for my intellectual abilities to return. This is very frightening because I can’t help wondering each time this happens if I’ve pushed myself totally over the line of no return.

It may seem paradoxical to claim that stress, a physiological mechanism vital to life, is a cause of illness. To resolve this apparent contradiction, we must differentiate between acute stress and chronic stress. Acute stress is the immediate, short-term body response to threat. Chronic stress is activation of the stress mechanisms over long periods of time when a person is exposed to stressors that cannot be escaped either because she does not recognize them or because she has no control over them. Discharges of nervous system, hormonal output and immune changes constitute the flight-or-fight reactions that help us survive immediate danger. These biological responses are adaptive in the emergencies for which nature designed them. But the same stress responses, triggered chronically and without resolution, produce harm and even permanent damage. Chronically high cortisol levels destroy tissue. Chronically elevated adrenalin levels raise the blood pressure and damage the heart. There is extensive documentation of the inhibiting effect of chronic stress on the immune system. In one study, the activity of immune cells called natural killer (NK) cells were compared in two groups: spousal caregivers of people with Alzheimer’s disease, and age- and health-matched controls. NK cells are front-line troops in the fight against infections and against cancer, having the capacity to attack invading micro-organisms and to destroy cells with malignant mutations. The NK cell functioning of the caregivers was significantly suppressed, even in those whose spouses had died as long as three years previously. The caregivers who reported lower levels of social support also showed the greatest depression in immune activity — just as the loneliest medical students had the most impaired immune systems under the stress of examinations. Another study of caregivers assessed the efficacy of immunization against influenza. In this study 80 per cent among the non-stressed control group developed immunity against the virus, but only 20 per cent of the Alzheimer caregivers were able to do so. The stress of unremitting caregiving inhibited the immune system and left people susceptible to influenza. Research has also shown stress-related delays in tissue repair. The wounds of Alzheimer caregivers took an average of nine days longer to heal than those of controls. Higher levels of stress cause higher cortisol output via the HPA axis, and cortisol inhibits the activity of the inflammatory cells involved in wound healing. Dental students had a wound deliberately inflicted on their hard palates while they were facing immunology exams and again during vacation. In all of them the wound healed more quickly in the summer. Under stress, their white blood cells produced less of a substance essential to healing. The oft-observed relationship between stress, impaired immunity and illness has given rise to the concept of “diseases of adaptation,” a phrase of Hans Selye’s. The flight-or-fight response, it is argued, was indispensable in an era when early human beings had to confront a natural world of predators and other dangers. In civilized society, however, the flight-fight reaction is triggered in situations where it is neither necessary nor helpful, since we no longer face the same mortal threats to existence. The body’s physiological stress mechanisms are often triggered inappropriately, leading to disease. There is another way to look at it. The flight-or-fight alarm reaction exists today for the same purpose evolution originally assigned to it: to enable us to survive. What has happened is that we have lost touch with the gut feelings designed to be our warning system. The body mounts a stress response, but the mind is unaware of the threat. We keep ourselves in physiologically stressful situations, with only a dim awareness of distress or no awareness at all.

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.

Book Excerpt: ”While she was still physically with us, she was not the mother I knew before Alzheimer’s. …. I had grieved her loss and yet she was not gone…I knew I would miss Sallie when she was gone, but I already missed my mother.

The literature has only these words of comfort for a patient and her family at this stage. Remember, there is still a living spirit inside this diminished person, the spirit of someone you love.

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.

The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you—not to mention literally gave you life—and taking their fragile body in your hands like a newborn, tending to their every need.

It's one thing to see someone with cognitive trouble for a few days as a guest in your home or at quick, chaotic family celebrations. Actually living with him in his home is a whole other plane of reality check.

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

When you feel yourself getting frustrated, let go of whatever is causing that feeling. Your loved one will only feel the frustration, and not remember or understand the reason. They'll blame themselves.

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.

I began to realize that I could not make sense of his world and that My Love could not teach me.

I believe it was overcoming the fears that gave me the strength and wisdom to recognize that I would be ‘strong enough’ to be a caregiver. I was not trained, but I evolved.

I was the one carrying the burden of emotional residue. He had no idea what was happening

I pushed him because I knew that something was wrong and he turned to me and said, “I don’t like being like this.

When I got home, I told Steve about the meeting and asked him if he minded me being so vocal. His response was, “NO, I want to stay alive, too.

How can I be both the patient, attentive caregiver and still have fun being myself? It's a balance and it's not easy.

Aside from balancing the roles of being a caregiver and being myself, it is difficult to balance my parents' needs and my own needs.

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.

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.

Almost two-thirds of these six million people are women. Almost two-thirds of the caregivers for those Alzheimer’s patients are also women.

life insurance and health insurance policies because sometimes, in the fine print, there are allowances for a certain number of hours of outside care.

To be the best—and most patient—caregiver possible, you need the right approach. It starts, as I explained in chapter 1, with recognizing that Alzheimer’s is an enemy you cannot defeat. It continues, as I told you in chapter 3, with protecting your own health.

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Each day do something to make others smile and your heart sing.

catastrophic

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.

Seventy percent of caregivers say they feel unable to leave their loved one alone, even in their home.

Many caregivers live in quiet desperation like this, feeling as though they are alone and helpless. Even in a room of sympathetic caregivers, this woman felt alone. All of the things that had worked for others seemed to fail in her situation. It felt hopeless.

As the level of care increases, your role will shift. The type of care needed will be based on keeping your loved one comfortable and staying connected to them. Helpful caregiving principles at this stage include: •Closeness beyond words •The importance of touch •Eyes closed, ears and heart open •New and quieter ways of being together

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.

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

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.

physical and mental states of Alzheimer patients' caregivers, cancer patients, and people with HIV; reduces the symptoms of asthma, rheumatoid arthritis, and eating disorders; and positively addresses a host of PTSD symptoms. In fact, a recent pilot study of eleven veterans diagnosed with PTSD found that after a dozen sessions of narrative therapy, not only did over half of the veterans experience a clinically significant reduction of PTSD symptoms, but a quarter of them no longer met the criteria for PTSD.

Biomedicine locates sickness in a specific place in an individual body: a headache, a stomachache a torn knee, lung cancer. Medical anthropologists instead locate sickness and health in three interconnected bodies: the political, the social, and the physical. The prevailing political economy impacts the distribution of sickness and health in a society and the means available to heal those who are sick. For example, poor individuals worldwide are more exposed to toxins that make them sick, while the rich stay healthier. The social body constructs the meanings and experiences surrounding particular physical states. It determines the ideal physical body, legitimizing biomedical practices like plastic surgery to attain it. The social body also determines the boundaries of the physical body. Some cultures locate sickness not in individuals but instead in families or communities. As any caregiver knows, we live the sickness too. And while biomedicine can cure diseases it flounders with permanent hurts, troubles of the mind, states present from birth or that are incurable or progressive. In biomedicine, these states are stigmatized and feared. We medical anthropologists have a term for this: social death.