Dealing with caregiver stress & burnout: Practice acceptance

When faced with the unfairness of a loved one’s illness or the burden of caregiving, there’s often a need to make sense of the situation and ask “Why?” But you can spend a tremendous amount of energy dwelling on things you can’t change and for which there are no clear answers. And at the end of the day, you won’t feel any better.

Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame. Focus instead on accepting the situation and looking for ways it can help you grown as a person. As the saying goes, “What doesn’t kill us makes us stronger.”

• Focus on the things you can control. You can’t wish your mother’s cancer away or force your brother to help out more. Rather than stressing out over things you can’t control, focus on the way you choose to react to problems.
• Find the silver lining. Think about the ways caregiving has made you stronger or how it’s brought you closer to person you’re taking care of or to other family members. Think about how caregiving allows you to give back and show your love.
• Share your feelings. Expressing what you’re going through can be very cathartic, even if there’s nothing you can do to alter the situation. Talk to a friend or therapist about what you’re going through as a family caregiver.
• Avoid tunnel vision. Don’t let caregiving take over your whole life. It’s easier to accept a difficult situation when there are other areas of your life that are rewarding. Invest in things that give you meaning and purpose—whether it’s your family, church, a favorite hobby, or your career.

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Managing Stress While Caring For A Loved One With Alzheimer's

Create a calm and soothing environment
The environment and atmosphere you create while caregiving can play a large part in helping an Alzheimer’s patient feel calm and safe.

• Modify the environment to reduce potential stressors that can create agitation and disorientation in the Alzheimer’s patient. These include loud or unidentifiable noises, shadowy lighting, mirrors or other reflecting surfaces, garish or highly contrasting colors, and patterned wallpaper.
• Maintain calm within yourself. Getting anxious or upset in response to problem behavior can increase the patient’s stress or agitation. Respond to the emotion being communicated by the behavior, not the behavior itself. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.

 

Manage stress in an Alzheimer’s patient

Different stress-reducing techniques work better for some Alzheimer’s patients than others, so you may need to experiment to find the ones that best help your loved one.

• Exercise is one of the best stress-relievers for both the Alzheimer’s patient and you, the caregiver. Consult with your loved one’s physician to make sure it’s safe to participate in light exercise. Regular walking, movement, or seated exercises can have a positive effect on many problem behaviors, such as aggression, wandering, and difficulty sleeping. Indoor shopping malls are vast walking opportunities protected from the weather. Or you may even consider singing and dancing.
• Simple activities can be a way for the patient to reconnect with their earlier life. Someone who used to enjoy cooking, for example, may still gain pleasure from the simple chore of washing vegetables for dinner. Try to involve the person in as many productive daily activities as possible. Folding laundry, watering plants, or going for a drive in the country can all help to manage stress.
• Remembering the past may also help soothe the Alzheimer’s patient. Even if your loved one can’t remember what happened a few minutes ago, he or she may still clearly recall things from decades ago. Try asking general questions about the person’s distant past.
• Use calming music or play the person’s favorite type of music as a way to relax them when agitated. Music therapy can also help soothe the person during mealtimes and bath times, making the processes easier for both of you.
• Interacting with other people is still important. While large groups of strangers may only increase stress levels for an Alzheimer’s patient, spending time with different people in one-on-one situations can help to increase physical and social activity.
• Pets can provide a source of positive, nonverbal communication. The playful interaction and gentle touch from a well-trained, docile animal can help soothe an Alzheimer’s patient and decrease aggressive behavior. If you don’t have a pet of your own, see Resources section below for organizations that offer pet visits.

 

Take time to connect with the Alzheimer's patient

Taking the time to really connect with the person you’re caring for can release hormones that boost the patient’s mood and reduce stress. And it can have the same effect on you, too.

Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time when you’re at your calmest to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll both experience a process that lowers stress and supports well-being.

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Tips for Managing Common Symptoms and Problems in Dementia Patients

As a caregiver for a loved one with Alzheimer’s or dementia, it can be extremely worrying to experience behavior problems such as wandering, aggressiveness, hallucinations, or sleeping and eating difficulties. Many behavior problems are made worse by a poor environment and an inability to deal with stress. By learning how to make changes in the caring atmosphere, you can increase the quality of life for both the patient and yourself.

Identify the causes of Alzheimer's or dementia behavior problems

 

One of the major challenges of caring for a loved one with Alzheimer’s or dementia can be coping with the troubling behavior and personality changes that often occur. It’s important to remember that the person with dementia is not being deliberately difficult. Your loved one’s sense of reality may be different to yours, but it’s still very real to him or her. As a caregiver, you can’t change the person with dementia, but you can employ strategies to modify or better accommodate any problem behaviors. Both the environment you create at home and the way you communicate with your loved one can make a huge difference.
 

The patient’s behavior can often be a reaction to stress or a frustrated attempt to communicate. If you can establish why the patient is stressed or what is triggering any discomfort, you should be able to resolve the problem behavior with greater ease. Remember, the patient responds to your facial expression, tone of voice, and body language far more than the words you choose. Use eye contact, a smile, or reassuring touch to help convey your message and show your compassion. Try not to take problem behaviors personally and do your best to maintain your sense of humor.
 

While these caregiver tips are directed at those caring for Alzheimer's patients, the same behavior problems are also common in other types of dementia.
 

Some ways to help identify the causes of problem behavior:

• Try to put yourself in the person's situation. Look at your loved one's body language and imagine what he or she might be feeling and what they might be feeling or trying to express.
• Ask yourself what happened just before the problem behavior started? Did something trigger the behavior? Try a different approach to see if that changes the reaction.
• Are the patient’s needs being met? Is the patient hungry, thirsty, or in pain?
• Does changing the environment or the atmosphere help to comfort the person?
• How did you react to the problem behavior? Did your reaction help to soothe the patient or did it make the behavior worse?

 

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Living With Alzheimer's: Creating Your Coping Strategy

You may already be aware of changes in your ability to complete daily tasks that once came naturally to you. Developing your own coping strategies doesn’t have to be complicated. You can simplify the process by focusing on these three steps:
 

1. Identify: Make a list of tasks that have become more challenging.
   Focus on developing coping strategies for your more challenging tasks. For example, if you are forgetting to take your medications, but have no problem remembering to do the laundry, focus on creating medication reminder strategies first.
2. Prioritize: Determine if the task is necessary.
   Ask yourself if the task you are trying to accomplish will help you get to your goal. For example, if paying bills has become more difficult for you, can someone help you write out each check? If the answer is yes, consider asking someone to help. You can remain in charge of signing each check.
3. Strategize: Find the solution that works best for you.
   For example, if you are having difficulty cooking dinner, try simplifying the process by using a crockpot. You can make a full meal without spending a lot of time figuring out the cooking process.

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Understanding Alzheimer/ Dementia Behaviours

Behaviours associated with complex and challenging mental health, dementia or other neurological conditions include aggression, wandering, agitation. These apparent changes in the personality of the person with the disease are a major source of distress both to the person who is presenting the behaviours and to those who experience them – the caregiver, the family members, and the service providers in all sectors of the health-care system.

 

Read more in this section about understanding the behaviours and how to respond to them. For more information, please contact your local Alzheimer Society

 

 

The behaviour	The strategies
Wandering Walks away from home unattended with the risk of becoming lost	Look for an immediate cause. Reassure the person and distract him with another activity. Move locks on the outside doors out of reach. Disguise doors with paint or wallpaper. Ensure regular walks and exercise. Put reminders (i.e., coat, hat) out of sight and reach. Inform neighbours. Register with MedicAlert® Safely Home®.
Restlessness Paces nervously, drums fingers, etc. for long periods of time	Distract the person -- find a meaningful activity. Calm her with music or touch. Consider pacing as a form of exercise (make sure her way is clear). Look for a pattern and arrange your schedule to be with her at that time.
Repeated actions Repeats words or actions over and over and over again	If the behaviour does not bother you, do nothing. Distract him with simple activities (i.e., folding laundry, polishing the furniture, shoes, etc.) Change the subject. Stay calm.
Suspicion Thinks others are trying to hurt her Accuses others of stealing possessions	Provide comfort. Don't argue or try to reason with her. Don't take accusations personally. Distract with another activity.
Sexual behaviour Removing clothes/exposing herself Physical and verbal advances towards others	Don't judge or scold. Provide affection. Look for unrelated needs (Does she need to use the toilet? Is she lonely or bored? Is she too hot or cold?) Distract with other activities. Stay calm. Provide privacy.
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Applying for Veterans Benefits: Tips for Caregivers and Spouses

"What are the VA benefits for veterans and their caregivers, and how do I know if my loved one is eligible?"

Believe it or not, this is the most common question caregivers ask Debbie Burak, founder of veteranaid.org, about applying for veterans benefits. As the daughter of a WWII veteran, Burak is intimately familiar with the challenges that caregivers face when dealing with the VA. For nine years, she looked after parents who never had enough money to pay for their care needs. It was only after years of scraping together every dollar they could find that Burak discovered her parents had been entitled to approximately $165,000 in VA benefits that they'd never received.

"I'll never forget the expression on Mom's face when she realized the money she desperately needed was never going to come," Burak laments. The experience, as devastating as it was, inspired her to advocate for aging and ailing veterans, and to create a website that provides information for veterans and their caregivers.

Confusion about applying for veterans benefits Eligibility may be the key question for many caregivers, but there are several other areas of confusion and misinformation that could significantly impact the finances of people seeking to obtain Veterans benefits:

The VA doesn't recognize Power of Attorney (POA): "A POA is worthless to the VA," says Burak. "It has no standing; no merit." This revelation often comes as a shock to caregivers who are used to hearing about the necessity of getting a POA as part of planning ahead for elderly care. In order to manage a legally incompetent veteran's financial affairs, an individual must be officially appointed as the veteran's fiduciary, according to Burak.

You can expedite a VA application: The VA has specific rules in place to expedite the applications of people age 90 and older. If your loved one is in this age group, make sure that the VA office that's handling their application is aware of this.

 You don't have to be ill to get Aid & Attendance: One little-known element of the VA program is that when a veteran turns 65 they are considered 100 percent disabled in the eyes of the VA. This means that they could be eligible for the lowest level of Aid & Attendance assistance, even if they have no major health conditions.

Benefits get cut off when a veteran dies: If a veteran dies before their spouse, any Veteran Aid & Attendance Improved Pension benefits being received by the couple will immediately cease. "People are just devastated to learn this because they're grieving and trying to make arrangements, and now they get to sit down and play the VA shell game all over again," she says. The "shell game" Burak is referring to is the one that requires the surviving spouse to submit a completely new application to the VA to get their benefits reinstated. Along with a death certificate, the surviving spouse (or their caregiver) must supply additional information and documents, including the deceased spouse's discharge papers; their marriage certificate; information regarding their income, assets and expenses; a physician's statement that details the surviving spouse's medical diagnosis and whether or not they can take care of themselves; and a statement from their long-term care provider (assisted living community, home care agency, etc.) that details their new cost of care information. Even if these documents have already been submitted to the VA, they all must be re-sent after a veteran dies. According to Burak, the average time to award a widow's pension is 10-12 months after it's been submitted, so it's important to start this process as soon as possible after a veteran passes.

What happens when you call the VA's 1-800 number: Burak has another tip for caregivers who call the VA to check on a loved one's application status. Make sure you're talking to the local VA office that services the area in which your loved one lives. Be aware that the 1-800 number for the VA automatically routes a caller to the VA office that's nearest to them. For long-distance caregivers, this is most likely not the same office that's in charge of their loved one's account. If the VA office they're directed to is not the same one that's handling their loved one's application, the caregiver won't be able to obtain any information since VA offices are not allowed to pull files on beneficiaries or applicants who do not live in their area.

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