Be Ready To Retreat And Regroup
Despite your best efforts and intentions, when you sit down with your parents to talk about what youve been noticing, they might not not want to talk about it the first time you try to bring it up. They may respond with denial or even hostility. In those cases, stay calm and remember that you get more than one shot at this conversation. They may get angry, upset, defensive, or simply refuse to talk about it, Drew said. Unless its a crisis situation, dont force the conversation. Take a step back, regroup on the approach and revisit the subject in a week or two.
How Can You Cope With Being The Caretaker Of Someone With Dementia
It is important for someone who is the primary caregiver of a patient with dementia to have a strong network of support. This is needed both to aid in caring for the patient and to give the caregiver some intermittent relief. In the early stages, many caregivers function more as a helper or guide, providing reminders for different tasks. Later in the disease, caregivers may have to supply basic care to the patient, including assistance with bathing, dressing, and going to the bathroom.
Obtaining power of attorney status for financial and medical matters and determining when a patient is no longer able to perform certain activities, such as driving, are difficult but necessary actions. Local Alzheimers Association chapters are often helpful in completing these tasks. Enlisting the help of a patients physician or mandating an on-the-road driving assessment can place the responsibility of determining when a patient is no longer safe to drive on someone other than a caregiver or family member, as driving is often an action that many patients attempt to perform far past the time when it is safe to continue. There are many sources of assistance for caregivers of patients with dementia:
Alzheimers and Dementia Caregiver CenterAlzheimers Association
The Challenges And Rewards Of Alzheimers Care
Caring for a person with Alzheimers disease or dementia can often seem to be a series of grief experiences as you watch your loved ones memories disappear and skills erode. The person with dementia will change and behave in different, sometimes disturbing or upsetting ways. For both caregivers and their patients, these changes can produce an emotional wallop of confusion, frustration, and sadness.
As the disease advances through the different stages, your loved ones needs increase, your caregiving and financial responsibilities become more challenging, and the fatigue, stress, and isolation can become overwhelming. At the same time, the ability of your loved one to show appreciation for all your hard work only diminishes. Caregiving can literally seem like a thankless task.
For many, though, a caregivers journey includes not only huge challenges, but also many rich, life-affirming rewards.
Caregiving is a pure expression of love. Caring for a person with Alzheimers or dementia connects you on a deeper level. If you were already close, it can bring you closer. If you werent close before, it can help you resolve differences, find forgiveness, and build new, warmer memories with your family member.
Caregiving can teach younger family members the importance of caring, compassion, and acceptance. Caregiving for someone with dementia is such a selfless act. Despite the stress, demands, and heartache, it can bring out the best in us to serve as role models for our children.
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Greetings Or Verbal Handshake
Think beforehand about how you are going to greet the person. Do they know who you are? They may not know you even though you know them well. Think about whether you need to say your name or whether a warm hello will suffice. A warm, friendly approach is important in creating a relaxed atmosphere for a conversation to start and develop.
Take Care Of Yourself
Your help is really important to your loved one’s quality of life. But it’s a lot to take on. You’ll probably feel anxious, depressed, and even angry sometimes. A person with dementia often needs long hours of care and a lot of monitoring, which can make you feel exhausted and overwhelmed. It’s OK to feel this way. Many caregivers do.
Don’t forget to take care of yourself. Here are some tips to relieve your stress:
- Be realistic. Accept that you can’t do it all alone and that it’s OK to ask for help or say yes when someone offers. It’s also fine to say no.
- Don’t quit your job until your loved one has a definitive diagnosis and you’ve fully explored any employee benefits. This helps keep income flowing and relieves stress about lack of funds, at least temporarily. Talk to your boss about flex options, like telecommuting.
- Stay informed. Learn all you can about early-onset dementia and how it can affect your family’s life. You’ll be better prepared for future changes.
- Talk to others. Get support from family and close friends. Don’t keep your feelings bottled up inside. Sharing your emotions and journey can be helpful. Caregiver support groups are available and may be a safe place for you to discuss your feelings and unwind.
- Walk it off. Exercise is a great stress reliever. It will help you sleep better, think better, and have more energy.
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The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
Dont Neglect Your Own Needs
By always focusing so diligently on your loved ones needs throughout the progression of their dementia, its easy to fall into the trap of neglecting your own welfare. If youre not getting the physical and emotional support you need, you wont be able to provide the best level of care, and youre more likely to become overwhelmed and suffer burnout.
Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. Its easy to abandon the people and activities you love when youre mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.
Caregiver support
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Your loved one may have difficulty communicating. They can have trouble telling you if they are uncomfortable. Signs of physical discomfort may be that your loved one is:
- having trouble sitting in one place
- constantly on the move
- fidgeting
- irritable
Making sure that your loved one is physically comfortable will drastically reduce aggression and agitation. Below is a thorough checklist to help you identify physical discomfort:
Always look for ways that you can cherish your loved one. Choose not to focus on the more frustrating aspects of caring for him or her. Pay attention to the immediate situation or activity. Notice if the activity seems to be triggering your loved one. If so, try to be proactive in changing the situation or activity. Redirect to a more peaceful and relaxing activity. If a conversation is upsetting either of you, change the direction. Acknowledge what your loved one said and then move to a different topic.
Aim to say yes as much as possible. If your loved one mentions that she saw someone who passed away years ago, agree with how lovely that would be to talk to them again. Even build on it and ask what they talked about. This gives you both a sense of connection and comfort with one another.
“Yes” is a powerful and affirming word. Saying “yes” lets your loved one know that you understand what is important to him or her. That you hear them. That you are listening.
Resources:
The Woman Who Recovered From Dementia
The authors mother with her granddaughters. The retired psychiatrists cognitive symptoms improved immediately after brain surgery two years ago. Photo / Supplied
When my mother, Pauline, was 70, she lost her sense of balance. She started walking with an odd shuffling gait, taking short steps and barely lifting her feet off the ground. She often took my hand, holding it and squeezing my fingers.
Her decline was precipitous. She fell repeatedly. She stopped driving, and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldnt even stand in the shallow end of the pool. I feel like Im drowning, shed say.
A retired psychiatrist, my mother had numerous advantages education, resources and insurance but, still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of a single specialty.
Surgeons recommended surgery. Neurologists screened for common incurable conditions. The answer was under their noses, in my mothers hunches and her family history. But it took a long time before someone connected the dots.
My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.
The bad news was that it had taken so long to get the diagnosis that some of the damage might not be reversible.
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How To Calm Down Agitation Or Aggression From Dementia
When your communication doesn’t go as planned, be present with your loved one intently and gently until they get that they are not alone. Find what works for calming your loved one. Try to find a way to connect with them. Make sure that they are comfortable. Make sure that their bodily needs have been met. Are they too cold or too hot? Often it is the simplest of needs that have not been met, and their inability to communicate, that leads to a meltdown and outburst. What is important here is to surrender your agenda and to meet your loved one exactly where they are.
Resources
Put Present And Past Together To Understand The Other Persons Reality
The more that you know about the key stories, people and themes of a persons life the better you become at interpreting meaning. If you are puzzled by a response, think about what the person has just been experiencing before your conversation, and think about what you know about the persons past and see if you can make a connection.
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Having A Conversation With Someone With Dementia
Communication is critical for everyone. There are two main forms of communication verbal and non-verbal . This feature focuses on the verbal form of communication and will provide you with some practical tips on how to help a person with dementia.
For information on non-verbal communication, see the feature in this section on Behaviour as a form of communication.
What we say should match how we say it the tone we use… and the faces that we pull while we are saying it.
For more on the importance of good communication, and from the point of view of people with dementia themselves, read the feature What other people can do to help me live well in the section Getting to know the person with dementia.
What To Do If They Refuse To Let Go Of The Idea
Sometimes, your older adult will refuse to let go of the idea of going home, no matter how much you try to soothe or redirect.
If that happens, you might need to agree to take them home and then go for a brief car ride.
Experiment with how long it takes before you can take them home without protest. Or, suggest a stop at the ice cream shop, drugstore, or grocery store to distract and redirect.
If its not possible to actually take them out or get into the car, even going through the actions of getting ready to leave can still be soothing. This will shows that you agree with them and are helping to achieve their goal.
Meanwhile, the activities of getting ready give you more chances to distract and redirect to something else.
Keep in mind that not everything you try will work the first time. And even if something works once, it might not work the next time.
Do your best to stay calm, flexible, and creative this technique gets easier with practice.
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Hip Fractures In People With Dementia
People with dementia have a higher chance of experiencing a hip fracture. People with dementia who live in their own homes and take antipsychotic medications are also more likely to fracture their hips. And not surprisingly, those with both dementia and osteoporosis have the greatest risk for a hip fracture, according to some research.
Those with dementia who fracture their hip also have a higher likelihood of developing delirium during their hospital stay. If delirium develops, it can lead to longer hospitalizations, poorer recovery in terms of mobility and longer facility care. The recovery and rehabilitation of someone with dementia after a hip fracture can be complicated by memory loss. Often, a weight-bearing limit is placed on someone after surgery and the individual with dementia may not remember that she cant just get up and walk.
Mortality rates in people who fracture their hip are between 12-33% after one year.
When an older adult with Alzheimers or other dementia experiences a hip fracture, several complications are possible.
- Less likely to rehabilitate to their previous level of functioning
- More likely to require ongoing facility care
- The higher rate of death following a hip fracture
- More likely to develop pneumonia related to decreased mobility
- Less likely to receive adequate pain medication, potentially increasing narcotic use when severe hip pain develops
Keep Your Mind And Body Healthy
Staying active has proven health benefits and may help ease dementia symptoms.
Being physically active, eating a healthy diet, getting enough sleep, and spending time with family and friends offer proven benefits. They may also help slow the symptoms of Alzheimers disease and related dementias.
- Exercise. You dont have to join a gym or spend a lot of money. Even light housework, gardening, and walking around the neighborhood can have benefits. Experts recommend both aerobic exercise and strength training . Learn more about exercise and physical activity.
- Eat right. A healthy diet is proven to influence heart health, which relates to brain health. Learn more about healthy eating.
- Sleep well. Lack of sleep and poor-quality sleep are linked to memory problems. Try to get 7 to 8 hours per night.
- Be mindful. One way to help manage stress and reduce anxiety and depression is a technique called mindfulness. Mindfulness is being aware of whats happening in the present, both inside and outside of your body. This web page and handout offer overviews of mindfulness in daily living.
- Stay social. People with dementia who live alone dont manage daily activities as well when they feel lonely. Join a support group, chat with someone regularly, or volunteer at a local school or community organization. For example, you could read to children at the library. For more ideas, visit Participating in Activities You Enjoy.
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Reach Out For Professional Help
No matter what your situation, Drew recommends exploring the resources that the Alzheimers Association has to offer.
No one has to go through this alone and thats where the Alzheimers Association comes in, she says. We have information about the disease progression, about getting a diagnosis, about the warning signs, about what good care looks like, and more. We can connect people to the information and resources they need.
The Alzheimers Association is available 24 hours day at Alz.org or by calling 1-800-272-3900.
Get Family And Healthcare Providers Involved
If youre having difficulty communicating with a parent or other relative about Alzheimers, see if another family member or a close friend might be willing to try. Someone else may get better results.
If signs of early-stage Alzheimers are apparent, its also important to get the individual to see a doctor right away for a comprehensive evaluation for the disease.
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Knowing The Stages Of Dementia Helps You Plan
Even if the stages arent exact and symptoms can still be unpredictable, being able to plan ahead is essential.
The truth is that Alzheimers and dementia care is expensive and time-consuming. Being financially prepared for increasing care needs is a necessity.
On an emotional level, having an idea of what symptoms to expect helps you find ways to cope with challenging behaviors.
It also gives you a chance to mentally prepare yourself for the inevitable changes in your older adult.