Caring for an Alzheimer's Patient and Your Family
Balancing your attention to an Alzheimer's patient with care for the rest of your family is nothing short of a tightrope act. According to a study by the National Alliance for Caregiving and AARP, 41 percent of caregivers have children at home. Tensions can spiral if your spouse or children think you aren't paying them enough attention, while you may think the last thing you need is more people leaning on you when you're already so pressed for time.
Your road is harder if you have young children, because they don't understand why their grandmother or uncle is acting differently. They have even less understanding about why it takes time away from them and your family life, and they may not understand how to express their needs. Your children may throw tantrums, misbehave, and act out — anything to take your attention away from caring for your loved one and set it back on them.
The sandwich generation refers to people who are sandwiched between the needs of their parents and their children, shouldering the responsibilities of caring for both at the same time.
Smoothing things over with the kids
Try a bit of creativity to overcome problems with demanding younger kids. Explain to them that your older family member has an illness that requires a lot of care. Draw an analogy they can relate to, such as reminding them how you cared for them when they had chickenpox or a bad cold. Then tell them that's the sort of care you must provide for your older loved one.
Even very young children can help with light chores, and including them makes them feel important, helps them overcome feelings of isolation, and keeps them feeling connected to you. Also, pay attention to how your children interact with the person with Alzheimer's disease. You may find that they relate well to your loved one, but in some cases, children aggravate Alzheimer's patients.
Be realistic when estimating the time required for caregiving activities. Most caregivers underestimate the time their loved one requires by 10 to 20 percent. Underestimating your time can get worse as Alzheimer's progresses, and the amount and complexity of care required increases.
Making a schedule
Schedule individual time with your children and spouse every day. Even if you meet for 15 or 20 minutes, you may be surprised how much information you can exchange. You can read your child a book (at a leisurely pace) or ask your spouse about her workday. Put all thoughts of your loved one out of your mind during this special time. Really listen to your children and spouse, and express your appreciation for the support they're showing you. Ask if they have any issues they want to discuss or problems that need solutions. Make them feel special, and you will feel special as well.
Even with the best planning, caregiving often disrupts the rhythm in a family. Everyone misses the special family activities you shared in the past and the day-to-day comforts you provided. In the first few weeks of caregiving, you can easily overlook your family's needs, putting them on automatic pilot and hoping for the best. This approach creates problems. When making your weekly schedule, include special family time and getaways as a priority. Doing so avoids hurt feelings and the difficulties that may arise when a family member feels neglected or overlooked.
If camping in the woods every weekend is no longer feasible, find new activities for your family. Think of other ways to do the same activity. For instance, put a tent in the backyard and let your kids sleep there on weekend nights. You may even join them if you have a good ghost story to share.
Perhaps you all like the zoo but haven't gone for a while because of your caregiving responsibilities. Can you take your loved one along on a zoo outing? Call ahead to see what accommodations are available. If your loved one tires after a little walking or has a tendency to wander, rent a wheelchair and push him around the exhibit areas. You can do the same for the aquarium or children's museum. If you think creatively, you can find ways for the entire family to participate in an enjoyable outing.
If your loved one is too impaired to come along, or you want to spend special time with your spouse and children, hire a sitter. Spending regular quality time with other family members is vitally important. If your kids are young when your loved one comes to live with you, and your loved one stays for ten years, putting off family fun until your caregiving responsibilities are over means you have put off your children's entire childhoods. Do you really want your children to graduate high school and go off to college thinking of you as an overworked shadow that flickered in and out of their lives?
Even if you've always maintained positive relationships with your siblings and your marriage is successful, the strain of caregiving can create conflicts. Deal with problems head-on. Don't let difficult family dynamics derail you emotionally. Honest, open communication and flexibility help resolve conflicts fairly — negotiate, compromise, and ask everyone to lay their concerns on the table. Are your family members worried about your loved one's care? Do they disagree with the diagnosis or how you're handling the situation? Do they feel left out? Are they worried about being asked to pay a share of the costs of caregiving, or do they think that because you have the Alzheimer's patient in your home, you get to scoop up the entire family fortune? Whatever the problem is, get it out in the open so you can address the issue together. Counseling can be helpful in resolving uncomfortable situations.
Perhaps you're the one with the problem. Maybe you feel like you're doing all the work and your siblings or spouse aren't doing enough to help. Don't play the martyr; express your feelings calmly and ask for help. Instead of whining or crying about being overworked, hand out printed copies of your schedule and ask for help with specific chores. For example, if your daughter's dance class makes it impossible for you to pick up your loved one from adult daycare one day a week, ask your sister if she can take over the driving on those days. Ask your husband if he can pick up prescriptions on his way home from work. And remember, you can't force anyone to help; some people in your family may refuse to offer any assistance. If that's the case, move on. No amount of nagging changes their minds, and your bad temper serves only to reinforce stereotypes about your family dynamic.
Don't ask the same person for help over and over. Try to build a team of helpers and rotate your requests for assistance among them. This approach circumvents burnout and saves friendships.
Keep your family members informed, ask for their help in planning and problem-solving, and share responsibility equally, and you may be able to avoid most problems arising from underlying family dynamics.