Coping with Alzheimer's by Sandra Liebler, M.S. Ed. Published: June 2005 So, today the doctor confirmed what you’ve been suspecting for a while-Mom has Alzheimer’s Disease (or something like it—what difference does the correct label make when you’re dealing with her forgetfulness and occasional confusion?) You have learned that the behaviors and deficits you have observed in Mom may have a number of possible causes, but the results are the same: she has “dementia” and it will more than likely get worse as time goes by. What can you do now? What should you do now? Now is the time to do some homework, rather than “manage by crisis” as things progress. It is important to plan for later while keeping as much normality as possible at each step of the way. Mom should be involved in this planning- after all, she’s the one most affected by what’s happening. Her wishes should be spelled out early on, while she can take part in the discussions and she can be assured that you are not plotting behind her back. Is her physician tuned in to the needs of the elderly population, up-to-date on the latest research for treatment and management of dementia, and, more specifically, tuned in to your mom? Dementia is a broad term with many possible causes, meaning that medication should be tailored to her specific diagnosis. You are aiming for management and stabilization at this point. First of all, do a realistic assessment of the current situation. Is Mom still able to safely cook for herself? Should she be driving her car? Has she begun to wander from the house? Forget to bathe or change clothes? Is her home fairly safe for her? What about her support system? Are there other family members who will help you and her with the planning and care? Now may be the time to involve friends, church family, long-time neighbors, anyone else who might play a part in keeping her safe in the least restrictive environment. What resources in the community might help? Home delivered meals might lesson the risk of a forgotten pot left to burn on the stove. A day program for older adults would provide supervision and activities until someone gets home from work to check on Mom. Paid help from the community or from a licensed home care agency could help keep the household running for a few hours a day. When it becomes evident that Mom can’t stay home despite all efforts, new options must be considered. Is there a family member with whom she might live? Services available in the community could help here also. If it is necessary to place her in a facility that provides 24-hour care and supervision, which one is the right one? Her care needs will dictate whether she should enter an assisted living facility, a nursing home, a specialized dementia ward, or even a psychiatric care setting. There is no “best” or “worst” facility—your choice may be based on how well the environment in a facility would fit Mom’s lifestyle. Visit the possible choices and trust your own impressions. Is the atmosphere quiet or “busy”, do residents interact with one another or sit in their rooms? Are there objectionable smells, grouchy staff, other turn-offs? Is the place cheery or gloomy? Look at the residents’ quality of life rather than the cost of the lobby furniture. Cost of care may be a factor in your choice as well. How to pay? At the first opportunity, review existing insurance policies to see if there are provisions for in-home assistance or long-term care. Different levels of care in facilities draw from different funding sources. It may be necessary for Mom, who never asked anyone for a penny, to explore public assistance programs as her care needs increase. The cost of long term care and prescription medicines far exceeds most retiree’s ability to pay out of pocket. Many people seek advice from estate planners or elder law attorneys to plan for future expenses. Who will handle Mom’s business if she becomes unable to comprehend finances or to remember to pay bills? If she is willing to convey durable power–of-attorney to you or to someone she trusts to act on her behalf, it would enable that person to continue carrying out her wishes when she is not able to express or carry them out in the future. If there comes a time when Mom is making unwise or dangerous decisions, or if she refuses the necessary placement in a safe environment, or otherwise makes it impossible for anyone to act in her best interest, the appointment of a guardian and/or conservator through a court procedure may be the only means of doing what is necessary. Now, enough about Mom--what about you? You may be feeling a little afraid for yourself as well as for Mom. You don’t know what you’ll be facing and you may feel overwhelmed and helpless. Remember, knowledge is power. You can gather information, plan for various scenarios, and know your options so that you can take things a step at a time. Local caregiver support groups offer a wealth of information as well as the sharing with others who are facing similar challenges. Local chapters of the Alzheimer’s Association offer resources and send newsletters that share valuable information. That old stigma that the only people who get put in the “county home” are those whose children don’t love them is out the window. Who could have foreseen that our parents today are living longer and that care facilities have evolved and improved to offer good care and improved quality of life. An important coping strategy is to be active, to “do something”—support research for a cure for Alzheimer’s, study current literature on care and treatment, explore and use community resources. Trust “the system”—there is a huge network of social service agencies, medical providers, non-profit organizations, and other concerned caregivers who will respond to your needs. Finally, it’s okay to laugh at some of the outrageous things your mother may say or do as she tries to make sense out of her world. You’re going to see good days and bad days, and you can’t take it personally when Mom is not herself. Keep hoping for a cure and share your successes with the next person.

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