Family Members and Loved Ones - The Other Victims of Alzheimer's

Alzheimer's Disease strikes it's victims with a cruel twist. The victim is somewhat insulated from the reality that the disease is ravaging their brain especially during the later stages - while the victim's loved ones deal with that knowledge on a daily basis.

The National Institute on Aging estimate that as many as 4.5 million Americans suffer from Alzheimer's Disease. Approximately 5% of people 65 to 74 years old have the disease while nearly half of men and women 85 and older suffer from the disease. While Alzheimer's Disease is more prevalent in the older population, it is not a natural part of aging. www.nia.nih.gov/Alzheimers/Publications/adfact.htm Although Alzheimer's Disease is primarily a disease associated with aging, the youngest diagnosed victim is just 27 years old. Alzheimer's Disease runs it's course in 2 to 25 years with the average patient living for four to eight years.

The natural progression of the disease leaves the patient unable to care for themselves and that care normally falls on their spouse. Since Alzheimer's usually affects members of the older population, that primary caretaker may also be in that same age group. Consider the senario where a couple has woked hard their entire marriage for the comfortable retirement. Now, all of a sudden, that dream of a comfortable retirement is dashed by an Alzheimer's diagnosis. Suddenly, that couple is thrown into the mix of doctors, medications and therapy to try to stave off the symptoms, and all too soon, the battle falls on the undiagnosed spouse. All of the decisions, the research, the finances, the budgeting, the feeding, the bathing, brushing the teeth, combing the hair, diapering, and clipping the fingernails and toenails consume every waking minute of the caregiver's day.

During the first stages of Alzheimer's Disease, the primary caretaker may feel uncomfortable taking the patient to family and social functions. There is a huge element of society that has difficulty dealing with any terminal disease and Alzheimer's Disease is no exception. The fact that the patient is no longer completely lucid with intact memories tends to make these social functions difficult. Each ensuing stage is more difficult until finally, total care requires that the patient no longer attends social functions. At that point, the isolation felt by the caregiver can be overwhelming. Following are some suggestions for the family and friends of the Alzheimer's patient's caregiver:

1) Visit as often as possible and pay attention to both the patient and the caregiver.
2) Stay in contact by phone when visiting is not possible.
3) Remember the holidays. The patient can no longer remember an anniversary or birthday, but if the caregiver is also the spouse, they need to be able to acknowledge and celebrate those anniversaries and birthdays. Bring as many celebrations to the patient and caregiver as possible.
4) When the patient no longer needs anything, buy something for special ocassions that will make the caregiver's life a little easier.
5) Continue to invite the patient and the caregiver to social functions. The right to decline should be with the caregiver.

Inevitably, the patient either dies or requires hospitalization or full nursing care due to other diseases relating to aging, and the caregiver is no longer needed in that constant cycle of care. The caregiver now is free to continue with his or her life. The life they knew before Alzheimer's Disease has changed significantly. The guilt the caregiver feels can be emotionally crippling. This is the time when those invitations can be accepted and life can resume a little bit of normalcy. The importance of continuing to extend the invitations throughout the process becomes more even more important.

The cruel twist of the disease lasts long after the patient is gone. The surviving spouse has lost years of socialization and probably will need to be gently re-entered into society. The world of the caregiver that became a microcosm out of necessity can feel very big and cold with no purpose. It can be a very difficult process to expand that world to include familly and friends.