Caregiver Quandary #1 – Dementia and Mealtimes

This is the first in a series of blog posts that discuss issues families of patients with dementia find challenging every day. All identifying information has been changed.

Recently we met Fred, 74, a retired lawyer, and his wife Carol, a 72-year old former teacher recently diagnosed with Alzheimer’s dementia and they are still adjusting to the diagnosis. Carol has always been the primary chef in her household during their 50-plus year marriage. Over the past 2 years, her ability to plan and prepare meals has been deteriorating. She becomes easily frustrated and agitated around mealtimes and does not understand why routine tasks she once did with ease are now much more difficult. Fred loses his patience often and feels helpless in the kitchen. He attempts to help by giving Carol step by step directions in the kitchen, taking her on 3 or more inefficient and exhausting grocery shopping trips each week and admits he is starting to lose his temper even thinking about the next meal. Their daughter, Pam, lives nearby with her own family, but Fred feels they would be a burden if he asked for help. Karen, a close neighbor has offered help but up to this point Fred has felt he can handle things on his own.

This is a very common scenario we see in our office. Accepting the reality of Carol’s changing abilities is difficult for both Fred and her. Denial is a powerful coping tool, but it is now interfering with the transition that needs to occur for their family to adjust to their new reality. Here are a few strategies for Fred and Carol to try to make things easier and once again find joy in the act of sharing a meal.

1.  Take Charge! By using the empowering Take Charge! mindset, Fred and Carol make an appointment to discuss these struggles with our healthcare team. This will give us a clearer view of her stage of disease, rule out any complicating factors and time to fully explain the diagnosis and stage. Carol’s Activities of Daily Living (ADLs) will be assessed – both what can she do independently, and what requires partial or full assistance. Fred’s expectations need to be lowered. Helping him understand what Alzheimer’s disease is doing to Carol’s brain will soften some frustrations. Fred will have a Caregiver Stress Test and be checked for any signs of burnout or depression. His personal health is vital to him being able to continue to care for Carol.
2. Food shopping: Outings to the grocery store 2-3x/week should be well-planned, including an organized shopping list written in advance. A relaxed and pleasant trip to the store can be a stimulating outing for both of them. Fred and Carol should select from the healthy prepared fresh food department. This is a great way to stock satisfying and nutritious “home cooked” meals that require no chopping, washing or mixing on their part. It doesn’t need to be gourmet- turkey, green beans and mashed potatoes is a nourishing and comforting meal for most anybody.
3. Meal preparation: Say “yes, thank you” to offers of help. Now would be a great time to let Carol and Fred’s thoughtful neighbor, Karen step in. She has asked multiple times if she could help but they have been hesitant to accept it. Fred could provide Karen with groceries (or money and a list for her to pick up some items he forgot), and she would likely be very happy to wash, chop, dice and cook some vegetables that can be reheated for the week. Casseroles can be prepared and frozen for future dinners, even portioned “for two” before put in the freezer to make pulling out what you can eat even easier. People feel better when they help others. Accept their offers as a gift.
4. Meal delivery: Local meal delivery services are available in most cities these days. Locally in Charlotte, “Just-1-Call” has social workers answer the phone who can determine meal or nutritional supplement delivery (and a variety of other services) you and your loved one may qualify for. Caregivers are eligible for services too. Churches and synagogues often have volunteer committees that coordinate meals for families dealing with illness or hardship. Email signups like takethemameal.com, mealtrain.com, signupgenius.com can be easily setup by a helpful internet-savvy family member or friend, allowing people in your circle to schedule a personal meal delivery on their own schedule.
5. Eating out: People with dementia can become stressed and anxious in a loud, busy restaurant. If the wait-staff doesn’t have the time and patience to listen well, it can be a frustrating experience causing you to think about writing off going out to eat ever again. Choose a favorite restaurant to make part of your routine. Look at the menu online before you go. Consider talking to the manager beforehand, even explaining that your loved one has dementia, and the need for a calm and unrushed interaction. (Patrons tell the waiters/managers about their dietary needs/allergies all of the time; this just happens to be your particular situation.) Go at a quiet time of day, avoid the busy lunch rush. Get to know one waiter — ask about his family, request him each time you stop in. A personal connection can make the visit easier for all. Above all, take a deep breath and leave any worry or anxiety at the house. Your loved one will sense and mirror your stress right back to you. However, they will also mirror your smile, humor, and warmth. Better to lead with that.

After 4 weeks of implementing these strategies, Carol is experiencing less anxiety and agitation, at the same time more happiness and peace surrounding mealtimes. Fred feels better able to manage his stress and has been accepting help from those around him, increasing his feeling of connection to family and friends.