We are an ever-changing society. We are living longer, more women are working outside the house, more children need care after school, more debilitating illnesses and there are more medical advancements to prolong life. These are exiting news and should be very happy to be living in these times. But it has its drawbacks. We are an aging society with not enough long-term care facilities to keep up with the growth. Even communities are having difficulty meeting these needs. Caregiving has become a national problem. Therefore informal caregiving comes into play. With many women working, children are coming home to empty houses.
Again care giving is needed. With new debilitating illness and no immediate cures, again caregiving is essential. With the cost of medical care rising, many individuals are remaining at home to receive essential care. Patient care is going home because hospitals are discharging patients earlier to avoid absorbing costs that were previously covered by insurance plans. According to a recent article in the Nursing Spectrum Magazine the percentage of Medicare patients discharged to home care doubled between 1981 to 1985, due to the Medicare limitations imposed at that time.
Hospitals are no longer the only places that high-tech care can be delivered to patients. An extensive number of these services are now provided in-patients homes every day. (Andreola 4). In the book, Woman On The Front Lines, Jessie Allen and Alan Pifer describe the situation in brief: “Population aging is the major driving force in the caregiving crisis in America. Although the number of children needing care is also growing, it is the rapidly expanding elderly population that presents the most important challenge” (49). Statistics supporting this were reported in a recent Pharmaceutical Journal as follows:
The growth in home health care is a necessary result of the (graying of America); 62 million citizens will be over 65 years old by the year 2025. Nursing homes now care for 1 million of our elderly and infirm. I can not imagine a scenario that will call for the construction of enough long term care facilities to care for this rapidly increasing population. In 1994, about 7. 1 million Americans are expected or receive some type of medical care at home, up from 5. 9 million in 1987(Product Management Today H1-H2). At some time in our life we will probably all experience the roll of caregiver.
The job description varies from cooking meals for a person, to caring for an invalid or terminally ill patients for 24 hours around the clock. I think an all inclusive definition of who a caregiver really is, was best stated in Caregiving, a money Management Workbook, A common definition of caregiver is a person who provides unpaid help to another person with one or more every day activities such as dressing, bathing, feeding, toileting and moving from bed to chair or at least two other activities such as grocery shopping, managing finances, housework, meal preparation, transportation or administering medications ( AARP 5).
Although many care givers are spouses both men and women and some young or single people, according to all reports the “average” caregiver is a woman between 45-55 years of age. She is usually still employed outside the home commonly has a family of her own to care for. This is better known as the “Sandwich Generation”. There are about 10 million people in this country that are in need of home care services. Most of these people will receive these services from informal caregivers mostly family and friends. For the frail and elderly this can mean the difference between independence or going to a nursing home.
Being at home in familiar surroundings offers comfort and security. Many suffer from dementia and become disorientated or confused. Being at home minimizes their confusion since the patients needs are meet in their own turf and according to their own daily routine. Caregiving can be a fulfilling experience or it can be emotionally, physically and financially draining. Many times the caregiver does not realize that as time goes on and the patients condition deteriorates, she he becomes totally involved and begins to neglect her own physical and emotional needs.
Many caregivers are unable to get good nights sleep even though they are exhausted from the daily routine. Hypertension is another major complaint of the caregivers. Many develop depression. A dear friend and neighbor who has Parkinson’s Disease and Prostate Cancer was being care for by his wife. She never complained and was always cheerful. Recently he fell and injured his leg, at the same time she received a notice from the insurance carrier stating she would have to obtain other coverage. Within a few days she went into a state of depression.
She expressed fear of not being able to take care of her husband and felt a tremendous amount of guilt. It was necessary to get her professional help for her depression in order for her to continue her effectiveness as a caregiver. Caring for the Caregiver an article found in the Bergen Record makes note that: The primary is to overwhelm and exhausted to realize they need help. At Englewood Hospital nurses work with family members on stress-reduction and show them how to nurture themselves (Terrazzano H1-H2 ). Not all caregivers are so extensively involved.
In my experience as a nurse I have found that a spouse or an immediate family member is generally more devoted to the personal and medical care needed. This includes treatment medications and oxygen when needed. However someone not in the immediate household has fewer demands placed upon them. Nevertheless the advantages of home environment can still be maintained for the patient. Let us examine some issues and concerns of caregivers and some steps to make the roll of the caregiver more comfortable and productive.
Before all else the recipient should have a physical examination and a physician who is experienced in the treatment and care of the patients illness should do a firm diagnosis. The patient should feel comfortable with the choice of physician. Make sure the doctor will be available to answer questions as they arise and that he shows a real interest in the patients’ welfare. After a decision is made as to where the caregiving will take place, this location should be made safe for the patient. For example keeping medications and poisons locked, removing scatter rugs and if necessary gates on the steps.
All of these precautions will depend on the patient cognitive ability and physical state. Assessing the patients’ daily needs and activities will give the caregiver a broad picture of hours per day needed. For example at mealtime, is a special diet needed? Maybe small frequent feeding would be easier tolerated by the patient. Try to feed the patient at times they normally would eat. Trying to keep consistency in the patient life can have just the opposite effect in the caregivers life. Personal care depends on how capable or dependent the care recipient is. Is the person continent or incontinent?
Do they need help with bathing or dressing? These situations can be very difficult for many people, whether they are the patient or caregiver. The patient may feel a loss of dignity or self esteem and the caregiver may have difficulty dealing with this especially if a parent is involved. Where there is little or no physical impairment, patient activities need to be fostered. For example “busy work” akin to occupational therapy should be meaningful and satisfying. This builds self-esteem and gives the care recipient a feeling of productivity. Behavioral problems can occur causing an increase in stress for the caregiver.
This can e caused by the patients’ illness, medications prescribed or simply lack of freedom brought on by age. For example dementia may cause a combative attitude which the caregiver may not be prepared for. Medications can cause depression or fatigue and age can limit the routine activities, causing frustration. Discussion and Conclusion It is apparent that with the aging of the population availability of sophisticated in home treatment equipment, and the reduced insurance coverage for hospital stays, an ever increasing burden will be placed on the informal caregiver.
This can be beneficial to the care recipient because it enables them to benefit from all the modern technology previously reserved to the hospital. At the same time they reap the rewards of familiar surroundings and personal communication or touch and in the company of family and friends. This has brought about unanticipated difficulties for the caregivers who had no way of anticipating, the emotional, physical and financial burdens which would be presented to them.
Previously the caregiver could only rely on others who have been through a similar situation, for comfort, support and direction. When there were no support groups or modern medical technology, patients were referred to a hospital or nursing home if the caretaker was unable to handle the problem, this possibly leading to guilt. Now support groups, home care agencies, non-profit organizations and professional care, can be supplemented as the situation merits. The Alzheimer’s Disease and Related Disorders Association, for example, offers extensive literature for informal caregivers.
These range from the anticipation of becoming a caregiver, advise on financial planning, how to manage home care, and planning for problems that may arise, to caring for yourself through support groups and counseling services. These are many other auxiliary services offered to help the caregiver meet her own personal needs. Some of these include Meals on Wheels, The American Red Cross and FISH, which is a Volunteer organization offering transportation on a limited basis for those who have no other means of transportation (American Red Cross, 15).
Adult Day Care Centers may give the caregiver some much-needed free time. Home Health Services Care bring in professional nurses or health aids as the situation requires it. Hospice offers support for family and patients both physically and emotionally, increasing as the patients’ condition worsens. The informal caregiver many times underestimates her value to the recipient of her care and society at large. Society had focused on the need for quality care at manageable costs for the aged and infirm. It minimizes hospitalization and maximizes at home care.
This could be accomplished by using unpaid and inexperienced caregivers. The need now is for this same society to recognize just how much of our health care responsibility has been taken by these dedicated though sometimes involuntary people. Society needs to provide them with even greater formal support. To do less would surely cause some of these caregivers to require the same care themselves. Personal Experience I can truly relate to the information obtained for this research paper. I have been a caregiver to a friend who lived in my neighborhood and to my mother who lived with me.
The care and emotional involvement were very different. With my neighbor I saw a rather dramatic change into a state of depression in a very short time. I was able to look at the problem more objectively. My friend’s children did not live close by, but they made the final decision from my observations as to the care of their mother. Her illness was such that with medications the prognosis was expected to be favorable. She eventually recovered. When my mother came to live with me after my father’s death I thought it would be an easy transaction since they visited very frequently.
My mother could hear most of a conversation with a hearing aid; she was totally deaf without it. As time went on we noticed behavioral changes. She became depressed probably because of the loss both my dad and her independence. If I talked about visiting my father’s family she became agitated and defensive and told me I didn’t love her. I tried to get her to participate in activities at the Senior Center but she refused stating she couldn’t hear and knew no one. At this time she was physically capable of going anywhere and doing anything she chose to do.
I demanded that she attended one Senior meeting and I would go with her. After the first meeting she wanted to “try” a second and from then on it became a daily activity she really looked forward doing. The same held true for group trips whether it be one day or a week. She refused to go. Again I told her she must go and if necessary I would come and pick her up if she was unhappy. Again she enjoyed the experience and reacted positively. Role reversal was very difficult for both of us to accept. As the years progressed my mother was diagnosed with Pancreatic Cancer.
I knew that as a child when she was sick she was sent to live with an aunt causing fear and stress she never forgot. We decided to take care of mother at home. Being an only child most of the decisions and care would be my responsibility. The decision not to try chemotherapy on the advice of two physicians left me feeling guilty. She was 74 years of age and by the time the diagnosis was discovered after much testing it had metastasized to other organs. My mother died 2 months after her diagnosis and within that time deterioration was very dramatic.
It was very difficult for me emotionally to care for her. I saw the strong robust woman I knew as my mother reduced to this frail, bed ridden, incontinent little person who needed oxygen to breath and was in a lot of pain. Since she was deaf our only communication was non-verbal or touch. I called the hospital and they came to check on us once a week. Bandages and supplies and medications were unlimited through Hospice. A social worker came to talk to me and a psychologist called me every week and for one year after mothers death.
I had unlimited use of pain medication that I could use at my discretion to keep mother comfortable. Touch was her greatest comfort. I was so fortunate to have one of my three children still home but ready to go to college and a husband who was so supportive, comforting and willing to help. It is so true that as a caregiver during difficult times you loose track of time and your own needs. After my neighbors illness I felt good knowing I could help. During my mother’s illness and after her death there was always the question “Did I do the right thing?
” or “Could I have done more? ” Care taking can play havoc with your emotions and guilt can prevail if allowed to. In both cases I must admit it was a truly fulfilling experience. Works Cited Allen, Jessie, and Alan Pifer. Woman On The Front Lines Washington DC: The Urban Institute Press, 1993. “Alzheimer’s Disease: Services You May Need. ” Alzheimer’s Disease and Related Disorders Association Inc. 1990. “Alzheimer’s Disease and Related Disorders: A Description of the Dementia’s. ” Alzheimer’s disease and Related Disorders Association Inc.
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