Coping with Alzheimer's disease places a caregiver in an exceptionally difficult situation. Someone within the family unit usually assumes the care giving role, typically the spouse or one of the daughters. Most family members who find themselves in the care giving role soon discover to their dismay that they must be available 24 hours a day, 7 days a week. Most of the time this care is provided unselfishly and without payment, many times setting a career aside so that the care may be provided.
This places a tremendous burden on the family member, whether daughter, wife or son, and affects all of their relationships with others for many years to come. The family member must have a support system in place early in the disease process, or they will find themselves burnt out before the going gets tough. Then, when the going gets tough ... Too many times, the caregiver succumbs to illness because they did not take adequate care of themselves.
The person responsible for the care of someone with Alzheimer's must have other family members and/or friends of the family available to provide respite care as they struggle with the burden they must carry. Choosing to carry this burden alone is unwise.
The primary caregiver will find that coping with Alzheimer's means that they must learn to juggle the lives of two people, without losing their life in the process. The caregiver must learn to be hyper vigilant never knowing how the next moment may play out but having to deal with whatever comes about. Many find that they must walk an extremely fine line between being the daughter, son or wife, and being the caregiver.
As the role reversal takes place, the caregiver will find themselves dancing to an ever changing tune, always having to be quick on their feet adjusting to the characters they must play in the lives of those they love. They must become adept at being illogical when necessary, because logic usually will only make things worse. They must find the ability in themselves to avoid the truth, when that avoidance causes less agitation and suffering for all concerned. They must learn to set the concept of black or white aside, and learn to live within the foggy regions of gray.
The most difficult thing that they will encounter, however, is when their loved one no longer recognizes them as someone they love. This statement is ambiguous for a reason. That is how life will be. Nothing is in stone. The person for which they are caring will gradually lose themselves to Alzheimer's disease and find themselves floundering in confusion. Their loved one will not remember that their caregiver is someone that they know, love and trust.
In the later stages of the disease, people are no longer recognized for who they are. Language no longer makes sense. Activities that were once effortless are beyond their capabilities. It is difficult to see this happen to a loved one. It is painful to continue caring for someone who distrusts your every move, and no longer loves you as they once did, when you only have their best interest at heart.
All individuals who find themselves in this care giving role must learn to put their feelings aside so that they may care for the person who is slowly slipping away from themselves and all those around them. If they are not able to do this, they will have to relinquish that responsibility to someone who is for the good of all involved.