“Alzheimer’s disease is often called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone,” reports The Family Caregiver Alliance.
The disease can run its course from two to 20 years and turn a fully functioning adult or senior citizen into a helpless individual.
The McGowan Institute for Regenerative Medicine in Pittsburgh, www.mirm.pitt.edu, points out that “today, home-based care for Alzheimer patients may entail tremendous economic, emotional and even psychological costs. Family caregivers often give up time from work and forego pay to spend 47 hours per week on average with an affected loved one who frequently cannot be left alone.”
In many ways, the effects of Alzheimer’s disease on the family can be as devastating as its effects on the patient.
Receiving the diagnosis is traumatic for everyone. The early effects of Alzheimer’s on the family consist largely of processing the diagnosis, learning about the disease and preparing for the future.
Individuals with AD may begin to say things and act in ways that are offensive and hurtful towards others. A gentle woman may become violent or a careful man become reckless, and as the Family Caregiver Alliance, caregiver.org, points out, family members need to learn “to differentiate between the disease and your loved one” in order to keep from internalizing these actions as purposefully inflicted wounds.
As AD progresses, and the patient loses touch with reality, the strain on family members, especially those providing care, becomes greater. FCA says, “people caring for loved ones with AD frequently feel isolated, and it is common for caregivers to suffer from grief and loss as the person they are caring for changes.”
During this stage, safety also becomes a critical issue, forcing family members to approach their loved one as a child who has few inhibitions. This is also a time for considering day care or nursing-home options, which may be a devastating line of thinking for families who hoped they would be able to provide for their loved one at home.
If a family chooses to keep the AD patient at home for the duration of his life, the later stages of the disease require extensive care. Patients must be fed, moved, cleaned and diapered, and these tasks require families to be constantly present and available.
At the very end of a patient’s life, some families opt for hospice care to help meet the physical and medical needs of the patient with AD. FCA recommends that “families caring for a loved one with end-stage Alzheimer’s should give thoughtful consideration to placement in a skilled nursing facility, where adequate management and supervision can be provided.”
FCA cautions that, “getting appropriate emotional support through counseling, a support group or other family members is extremely important.” Support groups are an excellent resource to help families connect with other individuals being impacted by the disease and to avoid the isolation that often comes from caring for individuals with AD. The Alzheimer’s Association has excellent resources.
For many families who have lost a member to AD, the loved one’s physical death seems a sad reminder of a mental death that may have happened months or years before. Families may struggle to process and grieve appropriately.
The Fisher Center for Alzheimer’s Research Foundation, www.alzinfo.org, encourages hurting families to work towards healing by practicing grief work, which “includes the processes that a mourner needs to complete before resuming daily life.
These processes include separating from the person who died, readjusting to a world without him or her, and forming new relationships.” Although it may be difficult, intentional grief work will enable a family to heal and treasure the memory of their loved one.
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