If your loved one has Alzheimer's or another dementia, you know firsthand the blessings and challenges of being a caregiver. But to give the best care possible, sometimes it's good to set aside time to stop and review what you should and shouldn't be doing. Do you see yourself with any of these tendencies?
Stop setting unrealistic expectations
Whether it’s trying to get out of the house on time, remembering where your loved one placed her glasses or following multiple-step directions, be realistic with what you expect your loved one to do. Stop expecting her to be able to do everything like she used to, every time.
Along that same line of thought (and sometimes an even harder challenge): Be realistic with what you demand of yourself.
Stop avoiding the hard questions
Sometimes, it’s easier in the short run not to know the answers to tough questions. But as we continue on the path, a little foresight will prove immensely helpful. Alzheimer’s is a progressive disease; planning ahead can help. Here are a few areas that are easy to ignore but should be addressed:
- If you see the symptoms of Alzheimer's or another dementia in your loved one, don't ignore those changes. Burying your head in the sand doesn't reverse the situation, and not treating Alzheimer's can cause the disease to progress faster.
- Learn all you can about Alzheimer's disease and what to expect.
- Talk with your loved one about what he wants in the future. It may be uncomfortable to discuss these things, but you will be able to be confident in your decisions, knowing that you're doing what he wants you to do. These discussions should include care options for when his disease progresses, power of attorney designations and living-will preferences.
Stop assuming no one understands
Do you sometimes crave a conversation with someone who is also in the middle of the trenches? No doubt. But if that person isn’t easily found or is so busy being in those trenches that it’s hard to connect, give someone else a try. While they might not totally understand from experience where you’re coming from, they may be honored to listen.
Don’t cheat someone of the chance to be your friend just because you’ve made the assumption they can’t understand the challenges you face.
Stop trying to do it alone
We've all heard this one, right? And yet for some reason, it's so hard to do. Here are a few reasons we get stuck in the "I-can-do-it-by-myself" mode and resist help:
- Others may not be available or willing to assist you. But remember: There are options for in-home care that you could consider, as well as support groups and community resources available for people with Alzheimer's.
- You're probably used to being the dependable one. That's great, but once in awhile you need to let go of things so that you can continue to function well in life. Consider it preventive medicine; arrange for some help once in a while.
- Perhaps you made a promise to care for your loved one. Remember that this promise did not require you to do it solo. You can still keep that promise and have a little help, too.
Stop being held hostage by guilt
You’ve been there, right? The thoughts of "I owe him" or "The last time I hired help, the assistant was terrible" or "It’s my job, and besides, she put up with a lot from me." Our guilt and sense of obligation can imprison us. Realize that it IS possible to honor and love someone and, at the same time, schedule time away. And by "time away" I mean both in physical distance and mental and emotional separation. It’s not only acceptable to do this, it's also wise. It doesn’t mean you care for your loved one any less.
Stop assuming your loved one can't participate in any decisions
It can become easy to forget to consult with your father about his ideas or his preferences. But often, the person with dementia may still be able to express his opinion and is honored and validated when you ask. Even though his memory might not be the best, he might be very capable of telling you what he does and doesn't want or what his opinion is about a treatment option. Whenever possible, involve your loved one in decisions or choices.
Stop neglecting your own health concerns
Is your blood pressure up or your mood depressed? Have you been on the receiving end of your doctor’s disapproving glance or expression of concern? I know sacrificing happens when you decide on priorities. But if it’s your health you’re compromising, stop and think a minute. If you neglect your health and eventually you’re not able to be the caregiver or even be around for your loved one, you’ve not helped anyone with this choice.
Stop neglecting your own family
Are your own kids wandering around like the children's book character who asks, "Are you my mother?" Don’t ruin one family to try to save a different one. If you’re in that sandwich generation, where you’re taking care of both your parents and your kids, be intentional in your decision of how much time you give to each one.
Stop believing your loved one is choosing how she behaves or what she forgets
Have you ever felt that she purposely threw a fit so that you would be late to the doctor’s appointment? Have you felt frustrated because you feel like he remembers some things that are important to him and completely forgets other things, such as the things that matter to you?
Make every attempt to view these issues as resulting from the disease, rather than a deliberate choice designed to frustrate or hurt you. This will help you cope more positively with dementia. I recently spoke with someone who repeatedly stated that his wife was choosing to be difficult. This increased his frustration significantly because it felt to him like she was behaving that way purposely. As he began to attribute her challenging behaviors to the disease, his frustration decreased and he was better able to cope.
Stop sacrificing your own sanity and running on empty
Picture this: You're holding several different sticks with plates spinning on each one, and you are constantly attempting to keep all of the plates spinning so one doesn’t fall. Are you the plate spinner here, trying to maintain your health, job, parents, children, marriage or other relationships - all the while caring for a loved one? Eventually, a plate is going to crash. Decide before that happens what you can take off your plate (or which plate to stop spinning) rather than having it decided for you when one crashes down.
Sometimes it feels like there’s no choice here. But even in the hardest of situations, you often can let go of something. What I’ve seen too many times is the crashing of a plate that someone desperately wanted to keep spinning but just couldn't because she couldn't do it all. Be intentional and proactive with where you allocate your time and energy. Maintaining a balance in life benefits everyone involved, and also is likely what your loved one with Alzheimer's would want you to be doing.