Living with dementia

“Dementia” is a term used to describe over 70 conditions that result in the loss of memory and logical thinking. Alzheimer’s Disease is the most common form of dementia. But many other conditions can cause dementia, including Parkinson’s, stroke, and prolonged alcoholism.

If your loved one has dementia, he or she is at the least confused, and often very emotional. It’s frightening to lose your clear thinking! As a result, the condition may also affect your loved one’s personality and behavior. People with dementia quite often lose their manners as well as their ability to think rationally. This can lead to behaviors that are embarrassing and very difficult for families.

While your loved one’s condition may not be curable, there are things you can learn to make daily life more pleasant, for all of you. The articles below are written for families dealing with the more advanced stages of dementia. Some of them, however, apply for all families no matter the stage.

You don’t have to do this alone. At Springhill Home Health and Hospice, we understand dementia. Give us a call at 251-725-1268. We’d be happy to help you with resources for you, and the person you care for.

Caregiving: Is it hazardous to your health?

When caring for an ailing loved one, it is natural to focus on issues related to his or her health. An unintended consequence, however, involves risks to your own health. For instance, family caregivers often forego doctor visits for their own checkups.

The major culprit is stress. Higher rates of physical, emotional, and mental health problems among family caregivers are most strongly associated with the stress of providing care. Research has found the more stressed you feel as a caregiver, the more likely you are to develop health problems of your own.

Stress, for instance, causes anxiety and depression, and also increases the likelihood of heart disease, diabetes, cancer, colds/flu, and other infections. Family members caring for a loved one with dementia (memory loss) seem to experience the most stress. Not surprisingly, they also tend to develop more health problems.

The best remedy is stress-relief activities. To keep yourself healthy and able to care for your family member over the long haul, write yourself a prescription for:

  • Social time. Spend time with others simply for fun and relaxation. Make it a point NOT to talk about the person you care for.
  • Exercise. Work off your frustrations and reinvigorate yourself physically. Or unwind mindfully through yoga or tai chi.
  • Crafts and hobbies. Do what you love, whether it’s art, music, writing, gardening, cooking, painting, or some other creative pleasure.
  • Religious/spiritual practice. If spirituality is a part of your life, make time for prayer or meditation and/or attend the services of your faith community.
  • Support groups. Meet with others in situations like yours to laugh, cry, and share tips.
  • Respite. Take a break from caregiving. It’s not selfish, it’s essential!

See the doctor for regular checkups. And make sure you keep your appointment!

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Emotional outbursts

If the person you are caring for has Alzheimer’s disease or another type of dementia, you may find his or her sudden emotional swings more troublesome than the forgetfulness. Although you can’t completely prevent outbursts, you can reduce their frequency and their intensity.

When a mood swing or difficult behavior occurs, ask yourself “why now?”

  • Look for a cause. Your loved one may be responding to someone’s comment or behavior, or to something in the room, such as too much noise or light or too many people.
  • Look for a purpose. Your loved one may be acting out a basic human need. For example, sweeping and then resweeping a walkway may seem a pointless, repetitive action but actually represents a need to feel productive.
  • Look for a medical problem. Pain, an infection, a hearing or vision problem, or a reaction to a medication may underlie the behavior change. Get a doctor’s input.

When responding, refrain from correcting, reasoning, or bringing them into “reality.” Acknowledge your loved one’s feelings. They are real to him or her.

  • Connect and then distract. Your loved one’s behavior is likely to persist until he or she feels heard and understood by you. “I can see you’re frustrated. I would be too. Let’s have a bite to eat first, and then we can deal with this.”
  • If there’s sadness or fear. Reassure. Use touch and words of comfort and support. Demonstrate that you “get it.” For example, “You’re looking lonely. May I sit a while with you?”
  • If there’s anger. Stay calm. Don’t challenge or disagree. If you are in the middle of doing something together, perhaps it’s time to take a break. You can excuse yourself to go to the bathroom. When you come back, you can reevaluate if it seems wiser to resume or to do something else.
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Healing power of music

Can listening to calming music actually ease pain? Can singing silly songs make you happier? Researchers say this isn’t just a folktale—it represents some of the measurable effects of music on the mind and body.

Although it’s not yet clear exactly how music works its magic, studies show that it is strong medicine, both in the moment and as treatment over time. Among the benefits, music:

  • Stimulates the brain. It can sharpen thinking and enhance recovery from stroke.
  • Brightens mood. Music with a tap-your-toes, upbeat rhythm can ease depression, reduce anxiety, and create a more positive outlook overall.
  • Calms the body. Music with a slower, gentler pace and melody can lower blood pressure, heart rate, and rate of breathing. It can even reduce the need for sedation in surgery.

Bringing music into your loved one’s life is simple.

  • Listen to prerecorded music: Tune in a favorite radio station, play a familiar composer or a beloved album. If your loved one has dementia (memory problems), melodies from the past will bring the comfort of familiarity.
  • Go to a concert: Researchers say live music is best. Listen to a friend play the piano or go to a performance in the park.
  • Sing favorite tunes at home: If your loved one likes to sing, choose cherished hymns, folk songs, or popular tunes from your loved one’s youth.
  • Experiment: Music is personal. Try different kinds of music, including soothing sounds of nature, and notice your loved one’s response. Happier? More relaxed? See what works for your situation.

You can also ask your doctor about music therapy. Much like physical therapists, music therapists work to relieve pain or support physical or mental healing, which they accomplish by guiding patients through musical experiences. Music therapy is most often available in clinics, hospitals, and rehab facilities, and may be covered by Medicare.

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Letting others pitch in

Caring for an older relative has many rewards. But that doesn’t mean you don’t need a break now and then to recharge your batteries. Many family caregivers don’t take needed breaks because they worry that others won’t do a good enough job in their stead.

Although concern for your loved one’s comfort and safety is appropriate, it’s also important to distinguish between real threats and a tendency toward perfectionism. For instance, it’s not uncommon for one sibling to feel like none of the others help. At the same time, the other siblings feel there “isn’t enough room” for them to pitch in because the primary caregiver is so particular about if, when, and how things get done.

Voltaire once said, “The perfect is the enemy of the good.” If you are having trouble getting, or allowing, others to help, you might want to consider the following:

  • Is a hot dinner every night necessary, or could Dad be just as satisfied by a hearty sandwich?
  • Your sister might not do your mom’s hair just right, but the tradeoff may be opportunity for a rekindling of their relationship.
  • As a compassionate friend, what advice would you give someone in a similar situation?

Researchers in the area of perfectionism also suggest slowly “desensitizing” yourself to less-than-perfect situations:

  • Start small. Ask someone to take over a routine task such as picking up a prescription.
  • Consider it an “experiment,” not a permanent change.
  • See what happens. If things don’t go as planned, were the errors life threatening for your loved one or simply irritating for you? Would practice or more information have enabled the helper to do better?
  • Were there any positives to the situation? Did they have value?
  • Try again. Don’t expect it to be easy the first time. As with any learning process, the more you do it, the more comfortable it will feel.
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Making the most of family visits

If you have family coming to visit, you may be feeling both excited and concerned: excited about brightening your loved one’s life with family gatherings and activities, and concerned that your loved one may become tired or anxious with the extra activity.

It is wise to think ahead about factors that could add stress and undermine the pleasure. These tips can help ensure fond memories of the season.

  • Set expectations. Update visiting family members about changes in your loved one’s health. Avoid awkward moments by having them adjust their expectations in advance. Let them know, for example, if Mom is no longer cooking, or Dad now dresses only in sweats.
  • Maintain routine. You’ve created useful routines for caring for your family member. Don’t give them up! Instead, make your regular schedule known and ask others to plan around it. Your loved one will fare better for this stability.
  • Avoid doing “business.” The holiday season in particular is stressful enough without heavy conversations about the “what ifs” of the future. If you and your siblings need to talk, schedule a conference call for later.
  • Plan simple activities. Keep it low key and flexible. Although togetherness sounds good, your loved one may do better with short visits with one or two people at a time. Ensure that the day’s pace allows for naps.
  • Provide tips. Especially where memory loss or dementia is involved, provide visiting family members with ideas on how to respond to behaviors, such as confusion or repetitive questioning.
  • Take a break. This is supposed to be fun for you, too! If your loved one needs ongoing care, ask another family member to take over for a while. Or, especially on a party night, hire someone for the evening so that you can enjoy the festivities.
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Pain: How do you know if your loved one is hurting?

Tragically, pain is often unrecognized and untreated. This is especially true for people who are unable to communicate well with words. Although up to 80% of older adults experience pain, those with advanced memory loss (the later stages of Alzheimer’s or other dementias) are unable to use their words to tell us. The result is unnecessary suffering.

While words may not be effective for communication—even when we directly ask, “Are you in pain?”—relatively sudden changes in behavior may signal that your loved one is hurting somewhere.

Suspect pain if you notice changes in your loved one’s:

  • Breathing—becoming labored and noisy. As pain increases, breathing may become faster, including rapid, short breaths.
  • Body language—sudden restlessness, maybe pacing or sleeplessness. Fierce, even aggressive hitting, pulling or pushing away is frequently a sign of more severe pain, as is curling up into a rigid ball.
  • Ability to be soothed—the more severe the pain or discomfort, the less likely your loved one will calm down with simple reassurance or touch.
  • Speech or crying out—this is the most obvious signal and includes soft moans or groans, escalating to repeated yelling or wailing when there is intense pain.
  • Facial expression—a new look of sadness or fear, or a scrunched-up, grimacing face can indicate your loved one is experiencing pain.

Caring for someone who is unable to tell you with words about their pain requires extra vigilance on your part. If you sense “something is wrong,” get a doctor to diagnose the problem and recommend treatments. You may find our article about managing pain at home to be a useful supplement to treatment the doctor suggests. Alternatively, you can ask for a consultation with a palliative care physician. These specialists focus on the relief of pain in all its forms.

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Stress management: Focus on the rewards of caregiving

Research on stress often involves family caregivers. No matter how much you love the person you care for, taking care of an ailing relative can be stressful.

To offset the stress, consider the power of positive thinking. A recent study has shown that people who “seed their lives” with moments of positive emotions are more resilient in the face of challenges. This doesn’t mean ignoring or denying the negatives. Instead, it means taking time to notice the “micro-moments” of things that are going well.

So does this mean you should go to more movies or eat more chocolate? Not really. According to Dr. Martin Seligman, former president of the American Psychological Association, these activities might feel good at the time, but more lasting avenues to happiness come from focusing your attention on activities that feel meaningful. Often this involves taking a new perspective on your daily routines, looking at the glass as “half full.”

The good news is that a shift in attitude or attention costs nothing and generally does not add inches to your waistline!

For example, despite the hardships, family members also mention the following rewards in caregiving:

  • “I am grateful to be able to give back.”
  • “I now feel much closer to my mother.”
  • “I’ve become more compassionate.”
  • “I’ve learned to appreciate the little joys and triumphs in each day.”
  • “I’m proud of the new skills I’ve learned. I had no idea I could do these things.”
  • “This has given me a chance to reexamine my priorities and be sure I am living the life I want to lead.”

If you are looking for ways to feel stronger and less stressed, perhaps it’s time to think in terms of the rewards in what you are doing. By accentuating those activities that have meaning for you, you can find more enjoyment in your caregiving and become a better caregiver in the process.

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