A special thanks to Judith Levy for offering this guest post filled with practical advice when faced with a diagnosis of Alzheimer’s.
The dilemma of writing an educational article on Alzheimer’s Dementia is, where do I begin? Do I remain objective as I relate my professional background as an Occupational Therapist who could leave problems behind at the end of the day? Do I start with the issues that I encountered as my parent and I navigated the medical system, the home care agencies, the caregivers with their varied personalities and the costs? Do I start with my own frustrations as I assumed more and more of the care which lasted for a decade?
The direction that I’ve ended up choosing is as varied and as subjective as each individual affected by or dealing with this disease. But being the concrete thinker that I am, this is what I decided: I’ve found that the best place to start is to be objective and put pen to paper. Here goes . . .
Write down what you see that is off with your loved one. What’s changed? Do you think it’s medical? What are your concerns? What are your questions? What was it that happened that made you first begin to question the difference? List everything that you think might be important. Then make an appointment with your loved one’s physician. Don’t forget to bring these questions with you and try to get them all answered.
Do some preparation before your appointment. List all the medications that your parent is taking. Specify the dosage and what time of day they take them. Have they been forgetting to take them? Are they being taken correctly? Could there an interaction between their medications or with the foods that they are eating? Has your parent had physical changes that you’ve noticed: lost weight; balance issues; vision changes; inappropriate behavior and/or forgetfulness? Write down all of this.
When you go to the appointment, try to have another person go with you. That way if you need to meet privately with the doctor, your parent can be attended to in the waiting room. Take notes during your visit. You can refer back to them later.
Once you have a diagnosis, evaluate how you will proceed. There is a myriad of support groups available to you. Your state’s Alzheimer’s Association is a great place to start. Check if your church/synagogue has a program in place which will benefit you. Consider looking for a geriatric care manager who can help you navigate the system. Don’t forget to ask your physician. Importantly, ask your friends. So many families are dealing with this issue that they may have already found out about local services. Don’t reinvent the wheel.
Something to consider are your parent’s legal forms. Are they up-to-date? Do you have the Medical Power of Attorney, Advanced Directive, Will, Medicare/Medicaid numbers, Social Security numbers? Are they current? Where are they kept? If possible, consider taking a picture of them with your phone so you have access to them when you need them. Don’t forget to photograph a list of important phone numbers, medications, and dosages; keep all this information together.
Once you’ve gotten your framework in place, put it aside. Things will work out and you will deal with issues as they come up. Then take a giant step back and breathe. Live in the moment. Laugh in the moment. Enjoy your parent and be thankful for your time together.
Judith A. Levy, EdM, OTR, is the author of “Activities to Do with Your Parent Who Has Alzheimer’s Dementia” (Amazon). A graduate of Boston University’s Sargent College with a degree in Occupational Therapy, she also received a Master’s Degree in Allied Health Education from Rutgers University. Mrs. Levy has been a practicing Occupational Therapist specializing in adult rehabilitation for over forty years. For the past ten years, she was the carer for her mother who suffered with Alzheimer’s Dementia.
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