What does a Caregiver Need to Know?
By Christine Nicholson, RN, MSA
It starts with changes. At first, it is just little things. Like having to mow the lawn, going to the grocery, needing transportation for a trip to the doctor- a funny feeling when you’re on the phone that maybe something isn’t right.
Maybe, subtle differences – your wife doesn’t seem to have the energy to do things the way she used to – the kitchen’s not clean, and the laundry’s not done.
Then worry – variations in behavior or medical circumstances – your husband just isn’t the same or your wife isn’t taking care of herself the way she always did.
But no one seems concerned yet – except you!!
Then it happens – the stroke was so sudden, no warning, what will happen? What does the doctor mean?
Now you’re a caregiver – welcome to family caregiving.
Caregivers need to know
When we step in to provide help to family or friend, we don’t think of it as “caregiving.” We’re just helping out, doing what people do for each other. But when individuals no longer are sure how to help each other or the helping becomes frustrating, confusing or too time or physically consuming- then our role changes, and we become a caregiver.
Recent studies indicate that one in every four families is providing care to an elder or other loved one. This care may be in the form of financial help, homemaking or household repairs, providing transportation or actual, hands-on-personal care.
When we become involved in caregiving, depending on the caregiving situation and involvement, the flavor of relationships, the nature of the activities and everyday routines begin to change. Perhaps that involvement is providing direct care such as housekeeping or assistance with bathing.
Perhaps it is providing long distance emotional support - frequent phone call, cards and visits. Or, perhaps others are in control and ignore your concerns, and you can only stand aside and worry. Beware that caregiving for another is a part of life today. Further, there are resources to aid the special needs that caregivers have and support the decisions caregivers have to make.
The family caregiver is responsible for and impacted by the practical, physical, emotional, financial, social, and medical needs and limitations of a chronically ill, disabled elderly or frail family member or other loved one.
When you’re a Caregiver
Caregiving takes on many faces. Each situation is unique. One may be caring for a parent, spouse or an adult child with disabilities. A caregiver may be an only child or perhaps have physical or mental limitations of his or her own – yet have full responsibility for the care of another. The care receiver may be close by or live thousands of miles away.
Many of us will first enter caregiving in a time of crisis. For others, there is ample warning of the coming need for help – perhaps due to a chronic condition or severe injury. As the caregiving role is assumed, the caregiver will be asked to respond to many new activities and circumstances. In order to meet the challenge on a continuing basis:
- Caregivers need to know what the problems are and what can be expected
- Caregivers need to know what can realistically be done about them
- Caregivers need to know how to find the best information and services
- Caregivers need to know how to find advice that can be trusted
We face change in our own way. Sometimes elders will cling to old ideas and issues of independence in what seems to be foolish or unsafe ways. Anger and denial are often present when things change and affect feelings and actions in unexpected ways.
Individuals diagnosed with a chronic illness find their own way to manage. Many times it is done by collecting information and strength from those around them and from past experiences. Sometimes, the response is heroic – sometimes, the choice is an unhealthy one. Most often, people and families work hard to make the best of an illness or disability by making accommodations and providing encouragement. Essentially living life to the fullest as much as possible is surely the goal. Caregiver and care receivers have a special relationship to one and the other. Remember, that each in their own way is a giver and a receiver of attention, kindness and love.
Caregivers need to develop a comprehensive care recipient support network to aid in keeping life as planned, organized and efficient as possible. In order to know what one is faced with, information must be gathered from many sources. Physicians, nurses, social workers and other therapists may be available to give assistance. Federal agencies and national disease organizations are excellent sources of practical advice and may provide support groups or other networking opportunities. One’s personal caregiving network should include not only the loved one’s health care providers, but the vendors of goods and services that are needed to maintain his or her daily routine. It is just as important for the caregiver to add to the support network the people or groups that he or she can turn to for caregiver help and support.
If one is a long distance caregiver, knowing the names and telephone numbers of a loved one’s neighbors, friends and faith community is also important. Communication, however, is a two way street. Caregivers need to be easily reached by the numbers of people who are involved in the support and care of a loved one.
Planning is important and caregivers can begin by locating community services, organizations and local agencies that may be needed in the future. Caregivers also need to become familiar with insurance plans, legal and financial documents, assistive devices and other products designed to help frail elders or those with disabilities to function at their highest level.
Since chronic illness or disabling conditions are by their nature long lasting, caregiving situations are ever changing. A treatment therapy or service that was right for yesterday is not necessarily going to be right for today. Even within stable periods, various options should be investigated that might improve upon the current situation.
These options may include home care companion service, senior center and alternative therapies such as chiropractic, acupuncture or massage therapy. Repairs or modifications may increase the safety of the home environment, enabling an individual to remain in his or her home rather than have to seek an institutional type living facility.
It is often difficult to think of new ways to do things, particularly when one is under stress. We all have a tendency to keep things the way they are during those times. However finding other ways of “caring” may be of benefit to both caregiver and care receive. Many alternatives can potentially increase the quality of life for a loved one by providing interesting activities and increasing physical or mental well-being, thereby increasing the independence and quality of life for all involved.
An essential skill to be developed is learning to take care of the caregiver. Too many caregivers expect that they can “do it all” - an attitude that may lead to burnout and unnecessary health-related problems. It is important to spend some time each day in both physical and spiritual/emotional activities to reduce stress, think clearly and maintain a generous spirit.
It is important to learn as much as possible about a loved one’s condition and medical/social plans for treatment:
- What can be expected in the future?
- What are warning signs of problems?
- What are the best ways to provide assistance and encouragement?
- Have there been changes to the financial capability of the family?
- What will happen to other relationships?
- Is there the time, energy or skills to provide the assistance needed?
- Will there be changes to work schedules or to other commitments?
Developing a realistic approach takes time, knowledge, commitment and good communication between all parties. Knowing what to expect allows us to think about how to cope- to be prepared. This approach helps to manage expectations. It helps avoid providing too much or to little assistance in the present and helps both caregiver and receiver to plan for future needs and activities. For caregivers and their families, as well as the care receiver, this is a long term process- sometimes painful, sometimes exhausting, but often a most rewarding time of family life.
Talking to each other about one’s wishes for future care and what plans have already been implemented should be a high priority for each family before a crisis occurs. Caregiving has become another phase of life, like getting married or having children – it’s essential to be prepared.