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For most caregivers, being there when a loved one needs you is important. Since caregiving is often a long-term challenge, the stress it generates can be damaging, especially when your loved one’s condition is deteriorating. Remember, those who care for others do a better job of caregiving when their own needs are attended to.
We created this guide to explore topics that can make the role of the caregiver easier, while providing adequate support to the person receiving the care. The following test will help you become aware of your feelings, pressures and stress you currently feel.
Which of the following are seldom true, sometimes true, often true, or usually true?
- I find I can’t get enough rest.
- I don’t have enough time for myself.
- I don’t have time to be with other family members beside the person care for.
- I feel guilty about my situation.
- I don’t get out much anymore.
- I have conflict with the person I care for.
- I have conflicts with other family members.
- I cry everyday.
- I worry about having enough money to make ends meet.
- I don’t feel I have enough knowledge or experience to give care as well as I’d like.
- My own health is not good.
If the response to one or more of these areas is usually true or often true it may be time to begin looking for help with caring for the care-receiver and help in taking care of yourself.
What Can I Do to Help Myself?
- Acknowledge your feelings. Your feelings have a lot to do with the way you view and cope with care-giving. All feeling are legitimate, even those that may seem disturbing to you (including anger, frustration, and sadness). Recognizing and accepting your emotions are the first step toward resolving problems of guilt and stress. Learn to express your feelings to family members, friends, or professionals.
- Join a Caregiver Support Group. In addition to offering useful information, such groups provide a unique forum for caregivers to come together and share their feelings in a supportive environment. Groups help caregivers feel less isolated and can create strong bonds of mutual help and friendship.
- Set Realistic Goals. Care-giving is probably one of the many conflicting demands on your time. It is important to set realistic goals. Recognize what you can and cannot do, define your priorities, and act accordingly. Turn to other people for help – your family, friends, and neighbors. Prepare a list of tasks for anyone who may offer assistance.
- Use Community Resources. Investigate community resources that might be helpful. Consider using in-home services or adult day care. Employ a homemaker to cook and clean, or an aide to help your care-receiver bathe, eat, dress, use the bathroom or get around the house. You can also contact Cohme to design a short-term care plan for your loved one.
- Use Respite Care Services. When you need a break from providing care to your care-receiver, look at respite care. For example, a companion can stay with your care-receiver for a few hours at a time on a regular basis to give you time off. Or have your care-receiver participate in an adult day care program where he or she can socialize with peers in a supervised setting; this gives your care-receiver a necessary break from staying home all the time.
- Maintain your Health. Your general well-being affects your outlook on life and your ability to cope. Make sure your schedule your yearly physicals and don’t miss out on Doctor’s appointment.
For More Information about Caring for Yourself, Visit:
Family Caregiver Alliance
National Alliance for Caregiving
Should the need arise, here’s a sample of a basic LIVING WILL. If you would like us to send you the Word document, please email us at: firstname.lastname@example.org, or call toll-free at: (877) 212-4222.
Home Care can be a life changing experience, especially for a loved one who is determined to remain as independent as possible. Proper preparation for Home Care ensures that your loved one’s needs are met. We’ve created a few tips to help you through this transition:
- Involve your Loved One. Resistance to Homecare is common, so be sure to involve your loved one in every step of the decision-making process. This shows them how much their opinion matters. Approach the topic with patience and understanding and let them know they would still have their freedom with a caregiver around.
- Find a Home Care Provider. Learn about the different types of homecare plans and payment options. As an example, many caregivers don’t realize Medicare won’t pay for long-term care in a nursing home and the average cost is $75,000 per year.
- Be Open with the Caregiver. Talk to the agency about what you’ve been doing and take the opportunity to talk about any difficulties you’ve had. You also shouldn’t be afraid to ask questions whenever you need to.
- Seek Out Expert Advice. The assistance of a social worker, geriatric care manager, financial advisor or elder law attorney can go a long way in guiding you through the legal, financial and emotional challenges of caregiving.
The first step in diagnosing Alzheimer’s disease is to establish that dementia is present. Then, the type of dementia should be clarified. A health care provider will take a history, do a physical exam (including a neurological exam), and perform a mental status examination.
Tests may be ordered to help determine if there is a treatable condition that could be causing dementia or contributing to the confusion of AD. These conditions include thyroid disease, vitamin deficiency, brain tumor, drug and medication intoxication, chronic infection, anemia, and severe depression.
AD usually has a characteristic pattern of symptoms and can be diagnosed by history and physical exam by an experienced clinician. Tests that are often done to evaluate or exclude other causes of dementia include computed tomography (CT), magnetic resonance imaging (MRI), and blood tests.
In the early stages of dementia, brain image scans may be normal. In later stages, an MRI may show a decrease in the size of the cortex of the brain or of the area of the brain responsible for memory (the hippocampus). While the scans do not confirm the diagnosis of AD, they do exclude other causes of dementia (such as stroke and tumor).
COHME Aides are trained to detect early signs of Alzheimer’s. They receive training from organizations such as CaringKind that targets how to assist clients at different stages of Alzheimer’s, as well as, recognizing the signs of the early stages of Alzheimer’s Disease.
Unfortunately, there is no cure for Alzheimer’s Disease. The goals in treating Alzheimer’s Disease are to:
- Slow the progression of the disease.
- Manage behavior problems, confusion, and agitation.
- Modify the homeenvironment.
- Support family members and other caregivers.
The most promising treatments include lifestyle changes, medications, and antioxidant supplements like vitamin E and ginkgo biloba.
The following steps can help people with Alzehimer’s Disease:
- Walk regularly with a caregiver or other reliable companion. This can improve communication skills and prevent wandering.
- Use bright light therapy to reduce insomnia and wandering.
- Listen to calming music. This may reduce wandering and restlessness, boost brain chemicals, ease anxiety, enhance sleep, and improve behavior.
- Get a pet dog.
- Practice relaxation techniques.
- Receive regular massages. This is relaxing and provides social interactions.
DRUG TREATMENT (PLEASE CAPITALIZE ALL DRUGS)
Several drugs are available to try to slow the progression of AD and possibly improve the person’s mental capabilities. These include donepezil (Aricept), rivastigmine (Exelon), galantamine (Razadyne, formerly called Reminyl), and tacrine (Cognex).
All of these drugs affect the level of acetylcholine (a neurotransmitter) in the brain and all have potential side effects, such as nausea and vomiting. Tacrine also causes an elevation in liver enzymes and must be taken four times a day. It is now seldom used.
Aricept is taken once a day and may stabilize or even improve the person’s mental capabilities. It is generally well tolerated. Exelon, a new drug, shows a similar effectiveness and is taken twice a day.
Other medications may be required to control aggressive, agitated, or dangerous behaviors. These are usually given in very low doses, with adjustment as needed.
It may be necessary to stop any medications that worsen confusion. These may include pain killers, cimetidine, central nervous system depressants, antihistamines, sleeping pills, and others. Medications MUST NOT be stopped or changed without discussion with and direction from your doctor.
Folate (vitamin B9) is critical to the health of the nervous system. Together with some other B vitamins, folate is also responsible for clearing homocysteine (a body chemical that contributes to chronic illnesses) from the blood. High levels of homocysteine and low levels of both folate and vitamin B12 have been found in people with AD. Although the benefits of taking these B vitamins for AD is not entirely clear, it may be worth considering them, particularly if your homocysteine levels are high.
Antioxidant supplements, like ginkgo biloba and vitamin E, scavenge free radicals. These products of metabolism are highly reactive and can damage cells throughout the body.
Vitamin E dissolves in fat, readily enters the brain, and may slow down cell damage. In at least one well-designed study of people with AD who were followed for 2 years, those who took vitamin E supplements had improved symptoms compared to those who took a placebo pill.
Ginkgo biloba is an herb widely used in Europe for treating dementia. It improves blood flow in the brain and contains flavonoids (plant substances) that act as antioxidants. Although many of the studies to date have been somewhat flawed, the idea that ginkgo may improve thinking, learning, and memory in those with AD has been promising. DO NOT use ginkgo if you take blood-thinning medications like warfarin (Coumadin) or a class of antidepressants called monoamine oxidase inhibitors (MAOIs).
If you are considering any drugs or supplements, you MUST talk to your doctor first. Remember that herbs and supplements available over the counter are NOT regulated by the FDA.
Have you thought about how health care decisions will be made if you no longer have the ability to make such decisions for yourself? This is typically accomplished through the execution of an advance directive. An advance directive is a written or oral instruction relating to the provision of health care when an adult becomes incapacitated.
The Patient’s Rights
New York has long recognized that an adult of sound mind has the right to consent to or refuse a recommended treatment. In several cases decided during the 1980s, the New York Court of Appeals established that the right of competent adults to refuse medical treatment, including life sustaining treatment, is protected under both the Due Process Clause of the State Constitution and the common law right of informed consent.
Where the patient is unable to make decisions, such treatment may be withheld only if there is clear and convincing evidence of the patient’s wishes. No one, not even a family member, may authorize the withdrawal or withholding of medical treatment for an incompetent patient in the absence of such clear and convincing evidence.
The clear and convincing evidence standard is an extremely difficult one to meet, however. In part because of the difficulty of this standard and in part to address a range of issues arising from advances in medical technology, New York adopted the Health Care Proxy Law.
The law grants competent adults the right to appoint someone they trust to make decisions about medical treatment on their behalf. The appointment is made on a health care proxy form, sometimes referred to as a health care power of attorney. The person appointed to make health care decisions is known as a health care agent.
Legal Requirements for Designating a Health Care Agent
The health care proxy form must:
- Identify the principal (person making the appointment);
- Identify the person being appointed as health care agent;
- State that the principal intends the agent to have authority to make health care decisions on the principal’s behalf; and,
- Be signed and dated by the principal in the presence of two adult witnesses who also must sign the proxy.
Another person may sign on behalf of the principal if the principal is unable to do so provided the signing is at the principal’s direction, in the principal’s presence, and in the presence of two adult witnesses.
Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer’s and related diseases have a progressive brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, or take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior. This Fact Sheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia. Ten Tips for Communicating with a Person with Dementia We aren’t born knowing how to communicate with a person with dementia—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
- Set a positive mood for interaction.
Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
- Get the person’s attention.
Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
- State your message clearly.
Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.
- Ask simple, answerable questions.
Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
- Listen with your ears, eyes and heart.
Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
- Break down activities into a series of steps.
This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
- When the going gets tough, distract and redirect.
When your loved one becomes upset, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
- Respond with affection and reassurance.
People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
- Remember the good old days.
Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
- Maintain your sense of humor.
Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.