Quick summary
Most people simply dive in to the responsibility of caring for a parent with Alzheimer's disease and then take it one day at a time. Fair enough. But before you find yourself combating both your parent's disease and your own emotional strain and battle fatigue, be sure you have these stress-busters on your side.
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1. Good self-care
Don't even think of skimming by this one. You really do need to come first on the priority list, not last. It's almost too easy to neglect your own needs when you're juggling parent care, a job, a marriage, and children.
But just as with tending to a child, caring for a sick parent can be depleting. If you fail to keep an eye on your own mental and physical health, you're vulnerable to everything from colds and other illnesses right up to burnout.
No one can keep up with the round-the-clock demands of Alzheimer's care -- even in the early stages -- without periodic relief. Indeed, caregiver burnout is a primary reason Alzheimer's patients enter nursing homes.
Make time for yourself every single day, even if it's just a 20-minute walk while a neighbor pays a visit. Don't abandon all your former interests and hobbies to support your parent.
You don't have to eat the same food as your parent (especially if she's down to simple, easy-to-manage foods), but neither do you have to subsist on drive-through fare. Stock up on nutritious, easy-to-grab snacks if time is an issue.
Getting enough sleep is a special concern: To help yourself fall asleep, try incorporating some relaxation exercises or meditation into your nighttime routine. Some people benefit from yoga, tai chi, or deep breathing exercises. A good tension release is progressive muscle relaxation, a technique that calls for tightening and relaxing all of your major muscle groups, one by one.
Your wind-down can be as classic as a warm bath or a good book. Whatever your choice, make it routine -- at about the same time each evening, if you can -- to help your mind associate the activity with rest. Reorganize your bedroom so that it's a haven rather than a cluttered workspace.
Get a medical exam yourself, and be sure to tell your doctor about your situation. She may be able to give you some strategies to deal with stress and anxiety, and can help you identify signs of clinical depression and, if needed, treatment options.
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2. Family cooperation
Your immediate family is likely to be your primary source of support and relief. Siblings often trade off care duty and share financial burdens.
But there are tremendous emotional benefits to a united family, too. Decision making is much easier when families are in general agreement. You'll also be less likely to feel guilty or isolated, second-guess yourself, or waste mental energy feeling resentful or unappreciated if you can all work toward consensus (or at least mutual respect).
Having the support of your partner and children, if you have them, similarly removes a huge source of stress.
Work to keep everyone on the same page regarding your parent's condition and the important decisions that must be made. When there's friction, consider bringing in a third party -- such as a respected relative or a neutral geriatric care manager -- to mediate.
Be aware from the get-go that Alzheimer's caregiving can become a source of marital conflict if your partner feels you are neglecting him or your "other" family. Take care not to discount criticisms in this vein.
Do what you can to keep your other relationships strong. You may need to bring in outside care to achieve this goal, and you shouldn't feel guilty if you do. Your relationships with your partner, family, and close friends will outlive your parent if tended well.
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3. The ability to ask for help
Alzheimer's care can be all-consuming, and it's a common caregiver temptation -- and mistake -- to take it all on yourself. Having ample help keeps Alzheimer's caregivers functioning longer and more smoothly.
Of course, asking for help isn't always easy. You may not want to bother others with what you see as a family matter or your responsibility. Sometimes it seems easier to do it yourself than to get another person involved.
In fact, most people around you are more than happy to pitch in but often have no idea what they can do for you, so they may not volunteer except in a general way. When you do ask, they're apt to be relieved that they can be of use and have the opportunity to show their affection for you or your parent.
Make a list of everyone who might help you manage your parent's new life, along with contact information. First on the list, place family members and friends.
Give thought to what kind of specific help each person might provide, no matter how large or small. For example, a neighbor might pick up groceries while she does her own shopping. A teenage cousin might be able to drive your parent to medical appointments or run errands.
Add to the list every individual who volunteers or asks, "How can I help?" Include people who would help you simply by being an understanding companion to call or visit.
Then make another list of all the tasks you feel responsible for on a daily basis. Of those:
- What can you delegate?
- What can you outsource to a paid provider (food delivery, cleaning services, pharmacy by mail)?
- Who can run errands for you?
- Who can spell you for a matter of minutes or hours?
If someone can't help, they'll tell you. But you'll never know all that they can do to ease your load unless you first ask. When you can, take a longer break by recruiting someone else to take over the primary-caregiver role for a day, a weekend, or even longer. Remember, you don't have to do it all yourself.
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4. Community resources
Alzheimer's-related services offer practical and emotional support that can transform a difficult time into one with pleasant moments, too. What's more, learning about respite care, caregiver training, and assistive devices to make physical care easier has been found to ease stress and delay the need to place a loved one in a nursing home, according to a 1997 Urban Institute report.
You'll particularly need outside support if you're coping with wandering, sundowning, or disturbed sleep.
You may be surprised by the variety of people, programs, and devices available to make your life easier, many of them at little expense. Start by conferring with your parent's doctor and branch out to specialists, geriatric care consultants, therapists, and community programs such as respite care. Alzheimer's disease associations and support groups are often free and a great way to receive emotional support as well as to learn caregiving tips and ideas.
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5. Realistic expectations
Not having a clear picture of your situation or your parent's prognosis sets you up for rude awakenings or a lot of unnecessary struggle. Once you know what to expect, you can adjust your expectations accordingly. This process also makes it easier to accept your parent's fate.
Learn as much as you can about Alzheimer's and stay abreast of what to expect at different stages of the disease. Talk to others who've lived through the caregiving experience on message boards or in support groups. You'll be better able to deal with what you're going through and gain a peek at what could lie ahead.
You'll learn from experience to be realistic about expectations for your parent. Keep outings with friends relatively brief and uncomplicated. Figure out what kinds of food, activities, music, and other daily routines work -- and stick to them.
Be realistic, too, about your expectations for family members. Distant siblings may simply not be able to devote the same time to caregiving as those nearby, for example. Children may be disturbed or frightened by the changes in a grandparent and shouldn't be expected to understand the disease and pursue the same kind of relationship as before.
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6. A game plan
Alzheimer's disease is progressive, which means that while your parent may stabilize for a long stretch of time, she'll never recover lost abilities. She'll only gradually worsen over time.
It's one thing to understand the progression of the disease but a different matter to put a corresponding action plan in place. Having a plan makes the emotional transition easier and helps everyone understand the needs involved, financial and otherwise.
You may not be able to address every possibility, but you can start by researching what's likely to happen when -- and your corresponding options. Start by dividing your planning into stages:
- What needs to happen at this stage in terms of your parent's care?
- Who will provide care?
- Where will your parent live?
For example, soon after diagnosis you'll need to arrange access to medical, legal, and financial records, as well as the transfer of decision-making authority to you or another family member. By the end stage, someone with Alzheimer's needs round-the-clock care, and you can start to figure out where that would take place and by whom.
Start conversing with family members about these things now, even if they're difficult. Get the input of your parent's doctor, a geriatric care manager, and other professionals involved in her case. In the long run, you'll be glad you did.
