Caring for a loved one in the end stages of Alzheimer’s disease can be a very trying and difficult time for family members, friends, and caregivers. While the patient may become increasingly unaware of their mental and physical deterioration, those left tending and supporting the individual are charged with the heartbreaking task of keeping the patient comfortable and secure during their end-of-life struggle with Alzheimer’s.
Progression of Alzheimer’s disease
Alzheimer’s disease progresses in a rather uncommon fashion. While some patients stricken with the disease seem to follow a steady pattern of decline, others may spend years of slow deterioration of their mental and physical faculties. Regardless of the speed of decline, Alzheimer’s care for late stage and end-of-life is a struggle shared by countless caregivers.
While the patient’s condition advances to the end stage of life, there are many things to consider when planning for appropriate care and support. Alzheimer’s disease does not seem to follow a consistent timetable in respect to measuring the length of end-of-life support. Some Alzheimer’s patients may enter this last phase of the disease with only days to live, while others may linger on, requiring months of end-stage care. Caregivers, physicians, and family members should develop an outline of the necessary arrangements that must be made on behalf of the patient during this stage of the disease.
In general, most Alzheimer’s sufferers will require a high level of physical assistance and care as the disease progresses toward the end of life. A plan of action regarding the likelihood of supplying 24 hour care for the patient will be necessary. Orchestrating such intense support and supervision can be quite complicated. Enlisting the help of family and friends, along with the use of home health aides if applicable to the individual situation, can be of great assistance to the primary caregiver(s) who may be over-wrought with the burdens of tending to an Alzheimer’s patient.
Initial stages of Alzheimer’s
During the initial stages of Alzheimer’s, patients may present with a variety minor deficits in memory and possibly physical coordination problems that seem to be of little significance to the daily living of the individual. However, as the disease presses on, minor regressions in memory and functioning increase to such an extent to which a loss of independence becomes inevitable. Dealing with the emotional upsets of a loved one who cannot care for themselves properly due to the disease can be a very trying task. Many Alzheimer sufferers are still aware enough to recognize that things are no longer as they were before the illness. This can create a duel problem for caregivers who, on one hand, are finding it difficult to maintain a balance between their own individual lives and caring for their loved one, and the sadness of helplessly watching their loved suffer from this disease.
Late stage Alzheimer’s
When Alzheimer’s disease reaches its last stage, new problems and concerns begin to surface. The patient will undoubtedly be unable to communicate with loved ones in a comprehensible manner. At this unsettling stage of the disease, loved ones responsible for the majority of care will be tending to tasks such as bathing, feeding, toileting, and dressing. Once the end-of-life stage commences, the realization of the finality of this disease may begin to weigh heavily on the caregiver(s).
A common issue that most caregivers face during a loved one’s battle with Alzheimer’s disease is caregiver burnout. Learning when to ask for help in the caring for the patient as well as knowing where to seek it out is vital. Setting time aside in order to regain focus and well-needed rest is essential for the caregiver. It is unfortunate that many feel guilty when taking a day or two off from caring for their loved one. Seeking out a moments reprieve from the seemingly endless responsibilities that involve tending to an Alzheimer’s patient in the last stages is highly recommended. Many caregivers come down with physical ailments due to the fact that they concentrate soley on their loved ones needs, neglecting their own. Planning down time is vital to remain an efficient caregiver.
An important facet of caring for an individual with Alzheimer’s is time management. Caregivers may find themselves frustrated at the increasing amount of assistance their loved one requires once the disease begins to progress. Caring for an individual with Alzheimer’s is best accomplished by adhering to a strict schedule in order to maintain a sense of normalcy, not only for the patient, but for the caregiver(s) as well. Establishing a set routine will make the transitioning between alternating caregivers much smoother. Setting clear times and responsibilities for each member of a caregiving team is essential.
Once a clear schedule of caregiver duties has been made, it will become important to pay attention to subtle signs of pain and discomfort that the patient may be experiencing. Communication in the end stages of Alzheimer’s becomes mostly nonverbal. Close attention must be made to the patient’s comfort level at this time due to the fact that the individual will not be able to express their needs verbally. Facial expressions, bodily movements, and overall demeanor of the patient will allow the caregiver(s) some clues as to the comfort and state of being of their loved one during this difficult time.
Home Care Assistance
In the event that home care is a viable option, the caregiver will need access to various equipment in order to make the last moments of the individuals life as comfortable as possible. A hospital bed and wheelchair may be needed. The likelihood of the patient becoming incontinent during the end-of-life stage increases as well. Physical limitation may require the caregiver to seek out assistance in keeping up with daily hygiene issues for the patient. Consideration should be taken as to the possibility of having to lift or move the patient in order to maintain their comfort level.
The Emotional Tole For Caregivers
Late stage Alzheimer’s disease brings along with it many conflicting emotions for caregivers. Dealing with the grief, sadness, and possible depression during these last moments of the patient’s life can come in many forms for caregivers. Each person has their own unique way of handling such emotions. Often times, caregivers will try to push the grief to the side in order to avoid upsetting others during this difficult time. Understanding that these feelings are a normal part of the grieving process can help the caregiver move through this stage effectively.
There are several places a caregiver can turn to for help in making the transition into the end-of-life phase of Alzheimer’s disease. Aside from rendering the assistance of family and friends, hospice services can provide much needed help to caregivers. A hospice team of professionals are available in home and at nursing facilities to support the patient and loved ones during such a difficult time of loss. Respite care is also an option for providing short-term care in the event that a caregiver needs some time off or is unable to care for their loved one for brief period of time.
Nursing Home Care
Most often, Alzheimer patients in the late stages of the disease require nursing home care. In this event, loved ones who previously were in control of administering direct care and support may still take part in their care, yet on a more limited basis. Healthcare professionals at the nursing home facility are usually very willing to follow family instructions as to the type of care given to the patient.
The end-of-life care does not necessarily cease with the passing of the patient in many cases. Support groups, hospital and nursing staff, as well as social service administrators can offer much support to the family members and caregivers following death. Caregivers who take full advantage of the services that are provided for them tend to fare better in the long run and are more readily able to return to some form of normalcy once their loved one is gone.