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.
Aggression Physical and emotional outbursts (i.e., shouting, hitting) Custom Business Cards 20% Off!

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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When is it Time to Place a Loved One with Dementia?

 One of the most frequent questions we get on Memory People is, "How do I know when it's time to place my loved one?" This, of course, is different for every patient, but it is also different for every caregiver. My rule of thumb is, and always has been, that there is no downside to placing a loved one in a facility too soon.

There are many drawbacks to waiting too long, and none of them are good. The number of things that can potentially go wrong in waiting too long to place a loved one are endless. Here are a few examples:

Medications In a facility, the medications are regulated and can be changed, usually within the hour for whatever reason. When your loved one is living at home, try getting them to the doctor for an evaluation to change their meds. This in itself can be a disaster, and is unnecessary once you have placed them.

Mobility Toward the end stages of dementia and Alzheimer's, patients have extremely limited mobility. Take a 70 year old spouse, weighing in at about 90 lbs. soaking wet, trying to get her 180-pound husband to the bathroom two or three times each night. All this does is put both of them in danger of falling. The end result could be a broken hip which, in some elderly people, is in itself a death sentence. Bathing, toileting, dressing, and other activities of daily living all come with risks, but a facility is better equipped to safely handle all of these. Then there's the fear of them getting out of the house without you knowing. Wandering can (and does) happen in a facility, but the chances of your loved one wandering there are a lot slimmer. The response time when someone does wander is greatly increased as well, due to the number of employees available to look for them.

Stress Anyone who cares for a loved one knows what I am talking about here. It doesn't matter if you are in your thirties or in your seventies, the stress that dementia puts on a caregiver is the same. If you are in your thirties, chances are you’re in reasonably good health. If you are in your seventies, you are more likely to have several medical conditions of your own to contend with. Stress can quickly manifest itself in people of any age, and is known to exacerbate even minor ailments. Sometimes placement in a facility is best for both the caregiver and the loved one’s overall health and wellbeing.


Long-distance caregiving This rarely works. How could it? Some dementia patients have the help of local family members, but they still struggle to stay on top of the care and assistance that their loved ones require. Some try to do this from hundreds or thousands of miles away, but adequate supervision and care can't be provided from afar. If you are a caregiver who is doing this, you know what I am talking about.

Have a plan The most important reason to have a plan way before it comes time to even think about placement is because you said you would. What does that mean, "You said you would"? It means that somewhere along the line you probably promised to take care of your parents, your spouse, your siblings, whomever. You may have said that you would never place them in a nursing home for any reason. Well, never sometimes arrives before we know it. I am telling you this as a patient who knows his destiny. I know what is coming. In a year or two, I may not understand. But right now I do, and I do not want to put my wife or our daughter through that. Period. Then there’s the fact that, as a patient, I deserve and demand to be taken care of to the best of one’s ability. My daily care should not be substandard simply because of a promise you made some 20 or 30 years ago. Chances are, we all have made promises we haven't kept for one reason or another. This thing about, "I promised my Mom I would never put her in a facility," is noble, but that’s about it. Dignity also plays a huge role in this. We all want to be cared for with dignity. A patient may not be able to communicate or have any idea what is going on around them, but they deserve to have their dignity remain intact. It tends to be a matter of pride for their caregivers as well, believe it or not. One doesn't want their family to know they can no longer take care of their Dad, so they do the best they can, not even realizing that the care they are trying to provide is substandard at best. Every patient deserves to be taken care of. That should never even be up for debate, but it often is. In closing, I want to tell you something, and you need to think about this. Placing your loved one in a facility needn't be the dramatizing thing it is portrayed to be. The nursing homes these days are nothing like they were 30 years ago when you made that promise to never place them. Chances are neither the patient nor the caregiver have ever been in a facility that cares for dementia patients. Why is that? Because no one has a plan. Some think that one day they will decide they can no longer handle being a caregiver, just drive up to a facility with their loved one in the back seat, and tell the nurse at the desk you have arrived and you can't do this anymore. This only happens in movies. The only person who can place your loved one is their doctor. You, as their caregiver, can and should acknowledge when you can no longer handle these responsibilities, but it is only by doctor’s orders that a patient can be placed in facility. It is imperative to have some sort of long-term care insurance in place, which has to be purchased before your loved one was even diagnosed way back when. But this rarely happens. So you have to depend on what money your parents have, and it’s likely you have no idea where or how much that is. Another issue is whether the facility you are looking at has room for your loved one. Again, you can't just drive up and expect the facility of your choice to have a vacant room waiting for you. This post could be twice as long, and I still would have just grazed the surface on why you need to have a plan when it comes to placement. Do yourself and your loved one a favor and be prepared. To me, placing a loved one is one of the most loving things you will ever do for them. You are doing something your heart tells you not to, but you are doing something that your mind knows is the right thing to do. This is exactly what you said you would do all those years ago: take care of them. When you can no longer manage, you seek out placement. This is, in fact, taking care of them.

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What to Do When Siblings Can't Agree on a Parent's Care Needs

Siblings! For some lucky families, having a bunch of adult siblings gather around and plan how to take care of Mom and Dad as their parents' health begins to fail is a great comfort. For some families, siblings who never got along as kids and have had little to do with each other as adults being thrown together to make touchy decisions is disastrous.   

For most families, the journey through the mine of elder care decisions falls somewhere between the two extremes. Elder care has a way of sneaking up on people. Generally, if there is an adult child living in the same town as the aging parents, it is this child who becomes, at the first sign of need, the default caregiver. That usually makes sense. You live in town. Your folks need some help with their Medicare forms, so you stop over. They need help with the yard, so you start taking time away from your family to help out. Then its grocery shopping and then, well, you're on your way to taking on a second job.    Ideally, before things get to this stage, you've had conversations with your parents about how they want their needs met during their later years. They've made out the papers naming a Power of Attorney for Health Care (a health directive indicating who will make health decisions if they can't and detailing their preferences for treatment) and a Power of Attorney for financial affairs. A will should be part of this, as well as other personal papers. Ideally, as well, all siblings are aware of these papers, what they contain and all are in agreement. Ideally – taking care of the elders becomes a family affair. However, life is seldom ideal.   

Even in seemingly harmonious families, the person who slowly became a default caregiver can start to feel resentful. The out-of-town siblings can conveniently slide into denial. They aren't around to see how much help is needed. They see Mom and Dad occasionally, talk to them on the phone, and all seems well. The fact that you, the in-town sibling, are the reason everything is going so smoothly doesn't really register with them.  

 This is a red flag for you. It's time to stop and consider how you are, as a family, going to handle the spiraling needs of aging parents. Most experts would suggest a family meeting. I agree. You, the hands-on caregiver, would explain all you do and give your siblings a chance to help. You'd find each other's strengths and weaknesses and work with those. You'd regularly check in with each other and update the whole family as needed. I would suggest this, because it is ideal, and many families can do this with a little work. If this works for your family, congratulations and you can quit reading here.   

Those of you who read the posts on the AgingCare.com forum will see the cold hard facts. You will see that, for many, the chances of a civil family meeting where you hash out the needs of your elders and agree who does what are, well, nil. You will see caregivers stressing over siblings accusing them of spending too much of their parents money to care for their parents. You will read the pleas for help from the one sibling who has quit his or her job to care full time for an ailing parent being either ignored by siblings, or worse, being accused of predatory intentions because they are "running the show."   

Option 1: Geriatric Care Manager  When these ugly scenes pop up, there's usually no way to go but through a third party. It's nice if you can agree on hiring a geriatric care manager, if you can find one in your area. This person would do the managing, get the help set up, and offer a cool head to work out problems, since the manager is not emotionally involved and doesn't carry family baggage.    Geriatric care managers are not available in every part of the country, and there is no over-reaching licensing, so you will want to do your homework. But sometimes, these people can make siblings see the light. They can help the ones in denial realize that the one doing hands-on care is "really working."   

Option 2: Counseling  Family counseling is also a good route, if siblings are willing to work on sibling relationships for the sake of their parents. Talking through the issue with an objective third party, who can guide the conversation and keep it civil, can help families work through the challenges associated with caring for an elderly parent. It helps everyone involved to better understand the other family member's views, frustrations and challenges, and can sometimes offer a fresh perspective.  


Elder Care Mediation  Unfortunately, many family relationships are beyond that point. This is where elder care mediators come in. These people are trained to mediate family disputes. Likely you can find one through your local court system or in the phone book.    Two online places to search for elder care mediation services are Eldercare Mediators at http://www.eldercaremediators.com/ and the Association for Conflict Resolution at http://www.acrnet.org/.    This is certainly worth trying before going to court over guardianship rights, which some families end up doing. It would be lovely if people didn't bring their baggage from childhood into adulthood, but we all do to some extent. If people could at least put sibling rivalry, greed and other undesirable behaviors aside for the sake of their elders, that would also be lovely.    But sharing the care of elderly parents doesn't always bring out the best in people. Add to that hopes of inheriting something from the estate, and it gets worse. This is when third party help is often a good option. For, if the hands-on caregiver doesn't get help somewhere, the damage done can reach far beyond the elders. Resentments nurtured at this time can poison family relationships for generations. If you are the default family caregiver, ask siblings for help early on. Let them know they are wanted (drop the martyr act).    If they have been given a chance and they refuse, try an agency designed to solve family issues. It could be one of the best investments you've ever made.

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