Alzheimer’s, A Disease Without Boundaries
By Karin LaRocca, R.N., BSN, CEO of In Your Home Care, Northshore LIVING WELL Magazine
Very often the initial symptoms appearing in a loved one with Alzheimer’s disease are remembered in hindsight, a little like viewing an accident in the rearview mirror. At first, his difficulty in recalling words may seem like nothing, perhaps no more than a lack of sleep or a “senior moment.” Then she may begin repeating herself, asking the same questions over and over again. It usually becomes more obvious when he becomes increasingly forgetful, sometimes not remembering why he has gone to the store or how to drive home on streets he has known for years. By now, even a spouse or adult child in some state of denial will realize this is not a case of normal aging.
In addition to losing their cognitive faculties, victims of Alzheimer’s often demonstrate personality and behavior changes. They may become more contentious and demanding. And, as terrible as Alzheimer’s becomes, it is often the family member who serves as the primary caregiver who bears the largest burden.
Few families have been left untouched by this insidious disease. Alzheimer’s, after all, is a disease that does not discriminate. It affects people of all backgrounds, ethnicities, socio-economic status, and education. What many families fail to focus on, however, is not just the person with the disease, but the caregiver.
Many caregivers experience such symptoms as denial, anger, social withdrawal, anxiety, depression, sleeplessness, and irritability. In short, caring for a spouse or parent with Alzheimer’s often leads to burnout.
Since Alzheimer’s is not a disease like cancer or diabetes that is necessarily visual, other members of the family may not know what the caregiver goes through. Even in the later stages of the disease, Alzheimer’s patients can manage to cover up so well that even adult children or siblings may see a totally different side when they visit or call. Yet, caring for a loved one with Alzheimer’s can be an all-consuming 24-hour-a-day, seven-day a week grind.
What can caregivers do to reduce the burden? The Alzheimer’s Association and other experts offer the following recommendations:
- Manage your stress level. High levels of stress, which are very common with primary caregivers, can cause physical problems. Use various relaxation techniques to ease the stress and consult your doctor.
- Take care of yourself. Caregivers can’t ignore themselves in the process of helping their loved one. Watch your diet, exercise and get plenty of rest. Take time out for shopping, entertainment and getting away.
- Become an educated caregiver. Find out where there are support groups or contact your local Alzheimer’s association to learn more about how to cope.
- Be realistic. Many of the behaviors that occur with Alzheimer’s disease are beyond your control and the control of your loved one. Yes, you can grieve, but you must also focus on the positive moments.
- Do legal and financial planning. Consult an attorney and other specialists to discuss legal, financial and medical issues. These decisions need to be tied up sooner rather than later.
- Give yourself a break. This is considered the most important step – and the one that you can least ignore. It may mean exploring home care, adult day care options or respite services. Home care may include companion services, a home health aide who can assist in helping with the activities of daily living (bathing, dressing, toileting and feeding), homemaking services to help around the house, or skilled care to assist with medication and other medical services. It can be live-in or hourly. Adult day care may offer music and art programs for the Alzheimer’s patient. Respite services can allow the caregiver to re-fresh her batteries by going away for the day or taking a much-needed weekend break.
- Don’t be a martyr. If at all possible, don’t do it alone. You can’t live like this for too long. Seek the support of family, friends and community resources.
Alzheimer’s disease destroys lives – and that can include the life of the caregiver as well. The adult children for one client, who called us about sending them a companion to help their mother care for their father, said they made the call after reaching the conclusion “we have already lost dad, we can’t lose mom too.” With a dedicated person taking some of the responsibility off her shoulders, their mother was able to leave the house for several hours every day. She could take long weekends to visit her children and grandchildren. It allowed her to slowly get back to being herself again.
In Your Home Care may be reached at 985-641-5083.