You, the Caregiver
Managing Your Own Needs as Well as Those of Your Loved One
Real courage is when you know you’re licked before you begin,
but you begin anyway and see it through no matter what.
— Harper Lee
Soon after Janet and her husband, Paul realized their lifelong dream of moving into a lovely beach-front condo in central California, Paul was diagnosed with Alzheimer’s disease. Janet arranged her activities around Paul’s increasing need for care, companionship, and supervision. She took him to his doctors’ appointments; she cooked, washed, and cleaned up after him; she routinely accompanied him to the only restaurant he was willing to grace with his presence: Taco Bell. She frequently stayed home with him, to allay his anxieties over her absence; she watched the weather channel with him—his favorite channel—day in and day out; she was up with him in the middle of countless nights, calming him down during his restless episodes of insomnia.
In the meantime, Janet neglected to follow up with her own doctors’ appointments.
Attending to Paul’s care-needs became her top priority, leaving her with little time to do the things that she used to enjoy. In order to mitigate his anxieties, she had to stop going to the places she loved. She no longer went out with her friends, who in turn stopped inviting her. Paul’s isolation slowly became hers. She seldom found herself without Paul by her side, and even at home he followed her as closely as a shadow. Privacy quickly became a thing of the past for Janet. She was fatigued but she pushed on, plowing through stress and sleep deprivation.
She felt an intense sadness for Paul’s condition. Caring for him was the only thing that mattered to her. This went on for years until the day that Janet collapsed, paralyzed with dread, grief, and exhaustion. She sobbed for hours. She cried, I can’t do this anymore.
Janet’s experience is not unique.
Caregiver:
A person who gives care.
It is such a self-descriptive, widely used, and recognizable term.
Have you ever thought about what it really means to be a caregiver?
More specifically, what it means to be a caregiver for a loved one with dementia?
Family caregivers are those who step in to assist in performing necessary tasks that a loved one is no longer able to perform alone. These tasks vary as needed, but generally include assistance with practical matters (handling insurance, paying bills, taking over household chores, or coordinating with family and friends); assistance with personal care (bathing, dressing, eating, and taking medication); and assistance with emotional care (facilitating activities, providing companionship and affection). Family caregivers may provide hands-on direct care or long-distance supervision and managerial care—yes, long-distance caregivers are caregivers too!
In dementia care, the need for assistance begins long before full-blown dementia sets in. Patients with Mild Cognitive Impairment (MCI) or who are in the early stages of dementia, although able to make their own decisions, may need help managing schedules, monitoring finances, and keeping a social calendar. A close friend or relative, most often a spouse or adult child, may offer help, not fully realizing that this is the beginning of a caregiving relationship. Some caregivers work as a team: Mother and daughter assisting dad or perhaps siblings working together to assist mom. But in the majority of cases like Janet’s, there is a single caregiver who takes over most of the care responsibilities.
As dementia progresses, the patient’s needs become more personal and more time consuming. Dementia often causes changes in personality and communication skills that caregivers may find unsettling. Physical and emotional needs become more demanding and a caregiver will need outside help from family members, friends, professional caregivers, and community organizations. While a family caregiver may be able to manage alone all the care during the early stages of dementia, in the later stages this is simply not possible because of serious safety risks for both patient and caregiver.
But when is it time to let go? Identifying exactly when care responsibilities become too demanding is one of the biggest challenges for the caregiver of a dementia patient. Dementia generally progresses gradually, in small increments, over the course of several years. And so do the tasks of caregiving. Given the incremental nature of the disease and the requirements for care, the caregiver may not recognize the point when the demands of the necessary care outstrip the caregiver’s capabilities. Many family caregivers fail to realize that they are caring for two people: their loved one with dementia and themselves. Both need care. Both have needs that must be met.
Caregivers commit their time, energy, and financial resources to provide for their loved ones and to compensate for all that dementia continuously erodes away. They are deeply affected by the stressors of caregiving. They live with a persistent grief that continues to be reloaded and renewed by small daily losses. Dementia takes away in subtle, insidious bites. Every bite hurts. Although not afflicted with dementia themselves, caregivers may find their judgment also clouded by the physical and emotional demands of their work.
The caregiver must recognize all the stressors under which she is living. There are physical stressors related to the demands of providing assistance with everyday personal needs, involving those related to personal hygiene, housekeeping, laundry, and general cleaning. There are financial stressors: Dementia care is expensive; costs are estimated to be three times higher than other conditions! There are environmental stressors: The home must be modified to accommodate the unique needs of a patient with dementia, and companion caregivers may find themselves living in an uncomfortable setting. There is also the social stressor of isolation as the once-vibrant relationship with the patient becomes remote and his care needs leave the caregiver less time for a social life. Finally, there is emotional stress. As the mind deteriorates so does the relationship, which becomes one-sided. The caregiver must learn to live with the patient’s withdrawal, forgetfulness, repetitiveness, and increasing dependence, while juggling multiple responsibilities alone and experiencing every stage of grief at once, every day, month after month . . . with no end in sight.
Sadly, as a result, the needs of a person afflicted with dementia are often allowed to eclipse the needs of the dedicated family caregiver. The caregiver must be diligent in making sure her own needs are met, otherwise she may become collateral damage to dementia. A damaged caregiver, a beaten-down caregiver, a caregiver depleted of her energy, joy, resilience and, eventually her health, is unfit to provide care.
In Janet’s case, she neglected to do the things that brought her joy, dedicating herself instead to what provided Paul with pleasure. As dementia eroded his activity levels bit by bit, the range of things he enjoyed dwindled to a predictable, monotonous pace. Routine is very soothing for people with dementia, but can be torturous for others. The beautiful beach that stretched before Janet’s home was no longer an invitation, but rather a sad reminder of the life she and Paul had intended to live. She failed to recognize the toll her style of caregiving (lacking in self-care) was taking on her until she collapsed, exhausted by Paul’s dementia.
We all know that stress has its consequences: Dementia caregivers are at elevated risks of developing certain health conditions, such as high blood pressure, anxiety, shingles, heart attack and, most ironically, Alzheimer’s disease.
Do not become dementia’s collateral damage.
Make sure your own needs are high among your priorities. Get rest and plenty of sleep. Seek ways to provide respite time for yourself, and do the things that give you joy. Keep your hobbies, carve out time for yourself, and most importantly, get assistance and support. Help is available, and you need all the help you can get.
Perhaps Janet’s biggest mistake was to keep Paul’s dementia a secret. She was embarrassed by his diagnosis. She tried to preserve his legacy and shield him from judgment by friends and extended family. In doing so she essentially deprived herself of their support and assistance. Unaware of Janet’s caregiving predicament, friends did not understand why she had stopped returning calls and they slowly began distancing themselves. Janet’s self-imposed isolation, although not intended as such, contributed to her ultimate meltdown. She had always been there for someone else, but no one was there for her.
There is no shame in having dementia. Caregivers who are open about their experiences with dementia and share them with friends and family often receive waves of loving support. Most people want to help and be there for you. All they need is your permission to reach out and a little direction on what you need—not everyone knows how to deal with dementia.
Accept help. Friends can provide rides, companionship, respite, humor, and affection—things we all need. They can gift you with a break. Your safety and wellbeing depend on it. Don’t go at it alone until that inevitable moment when you can no longer take it!
Service agencies and associations can also provide assistance. In-home helpers are trained to provide every level of care in the home, according to what you and your loved one require. Daycare centers provide much needed respite for caregivers, and care specialists at the Alzheimer’s Association can keep you informed about the disease and the resources available in your area. Support groups can provide you with emotional support and practical advice for dealing with dementia-related challenges. Reach out. Get help.
Luckily for Janet, that’s just what she did. She first reached out to a friend who recognized the precarious state that she was in and was willing to help by making some calls on her behalf. The Alzheimer’s Association was contacted and, among other things, it provided referrals to local agencies that specialize in caregiver and patient support.
Paul was enrolled in a daycare center, where he received supervision, participated in programs that were appropriate for his level of dementia, and found much-needed socializing. A transportation service was hired to take him to and from the day center so that Janet did not have to drive him. After a stimulating day of activities at the center he would come home tired, ready for dinner and bed. And he would sleep through the entire night, to Janet’s delight!
In Sight
Call of Duty - Sam, Laura's husband, flatly refused to attend the day care center. Laura finally told him: We need the money. Being a man with a strong sense of responsibility for his family, Sam no longer objected to going to what he now believed to be his job.
A social services organization paired Janet with a volunteer, a care-buddy, whose only job was to accompany Janet on her long walks on the beach, while Paul was safe at the day center. Janet looked forward to the companionship of her care-buddy, with whom she felt at ease to talk about the stressors of her duties as caregiver. It helped tremendously to be immediately understood by someone familiar with caregiving issues and who was so sympathetic to her situation.
Janet’s care-buddy took her to a spouse caregivers support group. Talking to others in the group and listening to their stories, Janet realized that she was not the only one struggling with the demanding nature of dementia caregiving. It felt good not to feel alone. It felt good to find a safe place to talk about dementia, and lost dreams, and sleepless nights, and the boredom and the loneliness of being the single cognitively-able spouse left in the marriage. Others felt the same way, but somehow they had learned how to laugh about it, finding humor to dissipate some of the sorrow and disappointment. With time, Janet would learn this too.
Later, when Paul’s condition required more intensive care, an in-home care agency sent a team of caregivers to stay with Paul at all times. Janet could sleep better now, knowing that someone was awake by Paul’s side and was prepared to assist him, should he need help in the middle of the night.
Paul died years later peacefully at home, under the loving care of a hospice team.
Janet acknowledges that she could not have made it without the help of all those agencies, volunteers, caregivers, nurses, and friends who stepped in to assist her. Actually, their help had always been available. All she had to do was ask.
Help yourself by asking for help. Allow those who can and want to help to do so. Remember you are caring for yourself as well. You are valuable, and your safety and wellbeing are important. There is a lot of help available. Make good use of it.
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