By Paula Spencer, Caring.com senior editor
The “do’s”: Positive steps you can take while caring for an Alzheimer’s patientBeing responsible for the care of someone with Alzheimer’s disease may be one of the toughest challenges of your life. There’s no way to gloss over how taxing it can be.You can, however, protect yourself in the following critical ways. We’ll start with the “do’s” and move on to the “don’ts.”
1. Keep expectations real.
Expect periods of stability, but recognize that because this is a progressive disease, an Alzheimer’s patient’s cognitive status and ability to function will decline over time, even with medication and therapy. It’s smart to try available therapies, but bear in mind that miraculous recoveries unfortunately don’t exist.Though you can’t control the disease itself, you can control the ways that you decide to approach it. Choose to be flexible and realistic, and you’ll be able find fresh ways to deal with challenges — ways that are workable even if they’re not always ideal. Rigid, unrealistic thinking is a recipe for resentment, burnout, depression, and getting very sick.
2. Treat yourself as well as you treat the person with Alzheimer’s.
Caregivers tend to be conscientious about making sure their charge is safe, comfortable, well-nourished, stimulated, under medical care, and generally loved and looked after. Do the exact same for yourself in order to last longer as a good caregiver.And, just in case, know how to recognize the warning signs of Alzheimer’s caregiver burnout.
3. Remember that knowledge is powerful.
Luckily — yes, there’s a positive connected with this awful disease — we’re living in a golden age of information about Alzheimer’s. Make it work for you. Call your local area agency on aging or Alzheimer’s disease chapter now to find out about nearby programs. Learn specific strategies for dealing with difficult behaviors and how to make everyday tasks easier. Know what to expect as the disease progresses so you’re not surprised. Find out what has worked for others.
4. Prepare to have all the relationships around you be tested.
Alzheimer’s isn’t just between you and the affected person. Everyone else in that person’s world has an individual relationship with him. Remembering this can help families or other caregivers understand why there may be differences of opinion about how to handle things.If you’re an adult child, you’ll also have to deal with the role reversal of parenting a parent. This can be difficult for both parent and child. Seek the advice of a family therapist if it becomes problematic.
5. Look for and cherish positive moments — they may be fleeting but they exist.
A diagnosis of Alzheimer’s doesn’t automatically change a person. You’ll continue to have many loving, even laughing, moments together. Your shared history remains intact, too. Look for the humor in memory loss. Appreciate the small grace notes.Reminiscence therapy, using older memories for mental stimulation, can be rewarding for both of you. Some caregivers are pained by reminders of a happier past, but good memories have a healing potential, too.
The “don’ts”: Pitfalls to avoid when caring for someone with Alzheimer’s6. Don’t try to go it alone.
If it ever took a village to do anything, it would be to care for a person with Alzheimer’s. Their needs change constantly. Eventually the disease requires 24/7 care, and people can live in this state for many years.As many as half of all caregivers develop depression. Caregivers’ burnout is one of the main reasons people with dementia are placed in long-term care facilities.As a caregiver, cobbling together a team approach is your best insurance against falling apart. As you establish a to-do list for all that needs to be managed, use a divide-and-conquer approach right from the start. Even if you’re an only child or a spouse without children, you can find relatives, friends, or local resources with whom you can share the burden.
7. Don’t undersell what you do.
Give yourself credit. There’s much drudgery involved in your job. Outsiders or distant family members may not “get” what’s really involved. The person with Alzheimer’s may barely seem to notice, much less be able to say thanks.Remind yourself, often, that your sacrifices are truly invaluable. Know, too, that caregiving comes more naturally to some people than others. Whether you find it easy or grueling, don’t think it’s “nothing.”
8. Don’t allow yourself to become isolated.
Too-common scenarios: The stigma of Alzheimer’s is embarrassing, so families quietly withdraw from their former lives. Social interactions eventually overwhelm people with Alzheimer’s, and it can become difficult for them to even get out of the house. Caregivers may also find it hard to go out in public with someone with Alzheimer’s, no matter how beloved.Be candid in telling others about the disease, rather than hiding it. You’re likely to feel more relieved and stay more involved. Find ways to continue your own social life, from work to religious activity to time away with friends. It will be challenging but not impossible.
9. Don’t be ashamed of the wild and scary mix of emotions you feel — it’s normal.
“Stressed” is how caregivers often say they’re feeling. But look deeper and you’ll find a complex cauldron of feelings. You may feel:• Ambivalence about your responsibilities — and further feelings of guilt or self-reproach for feeling that ambivalence.• Grief, watching the person you knew fade.• Resentment or annoyance for having your life disrupted this way.• Fear about how you’ll manage or what the future will bring.• Relief, if a difficult personality is becoming easier to interact with because of Alzheimer’s.Whatever you feel, someone else in your shoes has felt that way before. Strong feelings, even those that seem “wrong,” are natural in a situation like this. Sharing them with others validates your feelings, helps you move past (or around) them, and makes you less hard on yourself.
10. Don’t go it alone.
Notice that this reminder appears twice. That’s how important it is.• Find an Alzheimer’s caregivers support group.• Look into respite care(a break during the day) even before you think you need it .• Consider therapy. Studies show that talk therapy has a protective effect for caregivers — even if you’re not clinically depressed.• Ask a friend to volunteer to be on call anytime you need to vent, no strings attached.• Keep a list of volunteers for emergencies.• Chat online.• Look into Family Medical Leave.• Get away.
By Paula Spencer, Caring.com senior editor