Caregiver Support

Posted by Lisa C. DeLuca

According to the formula for determing stressful jobs in the workplace, people who are independent appliance repair men have one of the most stress-free jobs around. They have high control (i.e. control over their own schedule, whether or not they accept you as a customer, etc.) and they have low demand (they fix it when they fix it.)

Jobs with low control and high demand, on the other hand, cause the most stress. Think of family caregivers.

Studies have shown that the mere perception of having control reduces stress, even if the perception is false. Making a list of everything that feels so out of control can be helpful. When looking at the list, you may find that you can gain control of some of these things by using some creativity.

Do the same with the demands. If at the end of the day the demands are more than what is humanly possible to meet, this may motivate you to accept help.

If a loved one needs surgery, the caregiver doesn't perform it, a surgeon is hired. The same principle can be applied to other types of care, whether it is bathing, monitoring, or cooking/feeding.

Spouses, when they are well, take care of each other. When one becomes ill, the well spouse not only has to take care of him, she also loses the support for herself she once had. This is an enormous shift. There is no rule that requires the spouse to do it all alone. Feeling the stress of it is a normal part of being human, not a sign of failure. Enlisting help is an act of problem solving that can benefit both parties ,and create a more peaceful atmosphere that is conducive to mutual healing.

Posted by Lisa C. DeLuca

When elderly parents have a crisis, adult children are the ones they turn to. Yet when adult children have perfectly legitimate ideas that will help parents or avert crisis, the parents often won't let them implement these plans. The adult children, rightfully, grow frustrated.

On the other hand, parents naturally expect to be in charge of their own lives and don't want their children taking over and discounting their parents' abilities to know what is best for themselves. Parents often resent it when their adult children criticize how they are managing, and presume to know what's best from a distance.

What is needed is a new, respectful collaboration.The late Murray Bowen was a genious when it came to helping people break out of old, futile, family patterns of relating. Bowen helped people "differentiate" from family members. This means to take a position of difference while still remaining emotionally close. This is a lifelong task for all adult children to master, whether their parents are sick or well.

It involves listening as well as talking. It involves acknowledging the other's position as well as honestly stating your own - not by criticizing the other person, but by revealing something about yourself. For example, "It makes me so sad and worried to see you working so hard and never getting time to yourself. I would be so sad if you became ill too," instead of, "You aren't taking care of yourself and it's silly to think that you have to do everything, you should just get some help."

It involves validating the other's position without agreeing with it. It involves a loving intent and generosity of spirit, and getting past old wounds. It's another opportunity for healing that caregiving provides.

Posted by Lisa C. DeLuca

To this day, many people struggle with the stigma associated with depression, whether the stigma is imposed by society or by themselves.

Psychological, social and spiritual stress (think of family caregiving) can bring out symptoms of biological illnesses, whether its shingles, migraine headaches, frequent colds, diarrhea, acne, ulcers, high blood pressure, heart disease, anxiety or depression. Many psychotherapists encourage people to solve their problems on all levels: biological (if necessary), psychological, social, and spiritual (when the patient is spiritually inclined.)

Most people wouldn't dream of treating a skin condition or heart disease with psychological, social or spiritual treatment alone. More importantly, people usually don't blame themselves for those problems the way they blame themselves for depression. Yet it is scientifically proven beyond doubt that depression is, among other things, a biological illness. Self-blame, feelings of failure and inappropriate guilt are symptoms of depression. Could a depressed person's self-blame be their depression talking? A contributing factor to depression is a tendency for self-blame. Self-blame could certainly be fueling further depression, even as the person is trying to heal.

As a human race we have not yet learned exactly how to heal our bodies with our minds, though advances are being made. Until then, medicine is often helpful and sometimes necessary to treat bio-psycho-social illness like depression.

Still, all the logic in the world doesn't matter when it comes to core beliefs. Caring for self or others who are depressed is a complicated matter. Listening to people's beliefs about their depression may be as important as, or even more important than, expressing one's concern and offering "the facts."

Posted by Lisa C. DeLuca

It's so easy to say "have your elderly loved one see a doctor at the earliest sign of memory loss." But how do you convince another family member to face the fact that she might have Alzheimer's?

It is too scary to contemplate being mentally compromised. Denial kicks in. People in denial over their memory loss will often make up reasons why they didn't know things, why they forgot. They may blame you, say that you never told them. Underneath the defensiveness is probably deep fear, conscious or not.

In general, it can help to suggest to the family member that "Many people ask their doctors for routine memory testing as they age and that they are smart to do this so that they can learn ways to slow inevitable memory loss." This can "normalize" getting tested so they feel comfortable doing so without having to admit that there may be something wrong with their memory.

Still, family members in denial will probably not be motivated to follow through on their own. Offering to accompany them can help. If it is your spouse who is having problems, make an appointment for both of you.

The way your family always copes with stress and communication is the way it will cope when someone starts losing their memory. This may or may not work well. But the courageous can always keep lovingly trying new ways and hoping for some small progress.

Posted by Lisa C. DeLuca

One of the family issues most fought over is money.

One of the most avoided topics of conversation in families is death.

One factor in most family struggles is power.

One of the most contentious issues in sibling rivalry is equity.

Health care planning is nothing if it is not about these four horsemen: money, death, power and equity.

Health care planning is critical if families are to retain power over their finances and the medical care received by their loved one if he or she becomes incapacitated. However, sometimes trying to do the right thing can cause conflict, avoidance, fear, suspicion and arguments among family members.

This is why it is so important to consult a good elder law attorney. Spouses should do this together. However, if it is left to the adult children, there may be differences of opinion so the attorney becomes even more critical. This neutral party will be able to supply the family with objective facts, as well as logical, well-reasoned, advice.

It can be important to include everyone around the table with the attorney because when people get left out they often feel suspicious. Family members need to feel that they have access to the same information as everyone else, as well as to the person giving it.

Although this process can cause upset or discomfort, it can be done with patience in a loving way. Keep revisiting the issue. Keep trying. Agreements may not be reached over night but persistence pays off.

Considering the emotionality around these issues, family caregivers should remember to pat themselves on the back if and when they get these legal matters in place, It's just one more courageous thing family caregivers do.

Posted by Lisa C. DeLuca

Aside from the concrete demands of caregiving, caregivers must navigate an emotional minefield.

• They must deal with grief, loss and disappointment – their own and that of the patient.
• They can feel total love and complete negativity toward their loved one all at the same time.
• They can become caught up in guilt about being the healthy one, guilt over their negative feelings, guilt if they have any joy while their loved one is suffering, guilt about taking care of themselves when their loved one is worse off.

Members of the mental health profession have been saying for decades that mental and physical health are all tied up and shouldn’t be treated as unrelated entities. Anyone who wasn’t convinced of this before will be, once they see the health statistics on family caregivers.

Those caring for loved ones are roughly twice as likely to experience depression, colds, flu, back injury, cancer and other illnesses. Those caring for someone with dementia are twice again as likely to develop depression. This cannot all be accounted for by physical demand alone.

When a loved one falls ill it is truly a crisis. But if the illness is chronic, caregiving will be a way of life and balance must be achieved, physically and mentally, if the caregiver is to stay well too.

Marathon runners wouldn’t think of running the race without water stops. Caregivers need water. They need things that will rejuvenate, revitalize, replenish some of what is depleted. If health and quality of life are the goals, the caregiver’s water, like the patient’s medicine, is not a luxury, it is a necessity. What kind of water do you need?

Posted by Lisa C. DeLuca

As illness progresses, the patient’s world gets smaller. Real moments of connection between people are sometimes all that matters of what is left. For a caregiver, these moments can be healing too, especially if the relationship has been rocky. Moments of connection can be defined simply as when an inner truth is revealed by one person's words or actions, that is heard, received and genuinely accepted by the other.

Anyone contemplating the questions of death and connection, should read Mitch Albom’s Tuesday’s With Morrie (NY: Doubleday, 1997). Morrie lived a purposeful life right up until he died. His life and death were meaningful - for himself and for others – because he expressed his love for and interest in others who came into contact with him, all his life and during his illness. He sought to bring and keep them in his world during the process of his dying.

It’s a risk, reaching out to others like he did. People risk rejection when they do this. They make themselves vulnerable. The risk runs both ways. Morrie took this risk, but so did his former student, Mitch, who reconnected with Morrie knowing he was dying. Mitch could have closed himself off to prevent feeling the sadness of the loss he knew was coming. But instead he opened up and moved toward Morrie, strengthening their connection. This enriched both their lives, and it made the loss of Morrie more difficult for Mitch to bear.

Connection can even be possible in the case of dementia or Alzheimer’s, where the person the caregiver knew is slowly lost over time. This was beautifully expressed by Jack, a caregiver, in the Caregiver.com article, ‘Alzheimer's: She Wanted Two Kisses’ by Gwendolyn de Geest.

Caregivers keep hope for meaningful connection alive.

Posted by Lisa C. DeLuca

A long time ago I read somewhere that fear of dying was not fear of death, it was fear of a life not well lived. Those facing old age or end of life illness are facing more than just physical symptoms; they are coming to grips with life and how they lived it. Whether they acknowledge it aloud or not, there it is.

A family caregiver has to deal with her own feelings about what is happening to the patient and what is happening to herself as a result of the patient's illness. The feelings can be complicated for both parties. There can and will be conflict and difficult moments.

Caregivers themselves may be at the age when they are doing their own life reviews too. Caregivers of any age may feel that caregiving responsibilities are pulling them off of the track they wanted their lives to take, and that they are missing opportunities for a meaningful life. Others may feel trapped in a role that they would never have chosen but yet, ironically, it expresses who they are and what they value. Others may feel that they are making an important difference in someone’s life, maybe for the first time.

Through my psychotherapeutic work with people I have come to believe that many people judge whether or not their lives are well-lived by how connected they have felt - to others, to the world, to their Creator, to their true inner selves, and to their purpose.

Caregiving is about connection with others. Whether they are providing care themselves, arranging for the care, or just visiting, caregivers are keeping the chance for meaningful connection between two people alive, even when it can be difficult to do so. This may be their most important role.