Exceptional Caregivers Share Their Tips

Posted On 06 Mar 2017

A Place for Mom recently celebrated the stories of three exceptional caregivers: Carlen Maddux, Feylyn Lewis and Susan Hamilton. Although each of these caregivers had a very different and unique caregiving experience, they all shared similar tips about how caregivers can survive and triumph.Exceptional Caregivers Share Their Tips

Learn more from these exceptional caregivers, as they share their tips with us today.

Tips from Exceptional Caregivers

According to these exceptional caregivers, it’s important to practice these tips while caregiving:

1. Advocate.

Wanting to help others doesn’t end when you’re no longer a caregiver. Caregivers Carlen Maddux, Feylyn Lewis and Susan Hamilton all get great satisfaction out of helping other caregivers, now that their caregiving role is over.

“Speak out where you can and when possible, share your story,” Lewis encourages.

2. Ask for help and support.

According to Lewis, one of the reasons she and her older brother didn’t seek out formal help and support when caring for her mom is because she “didn’t want to be a burden and didn’t want people worrying about her.”

As a 10-year-old child caregiver, she felt like no one would understand what she was going through. Now, as a leading researcher of young adult caregivers, Lewis knows that there are others out there in similar situations, and she is working to raise awareness and support for these caregivers.

3. Draw support from other caregivers, your family and friends.

For Maddux, who worked in an office during the day and cared for his wife at night, “even though I had help it was a tough road.” His children offered to give him one weekend a month off and he took it. He suggests that others caregivers reach out to family and friends and ask for short reprieves whenever possible. “I have a friend in Nashville who had a dozen friends work out a weekly schedule to help get his wife where she needed to be,” he says. “Tap into your friends for help.”

Social media is a great place to connect to other caregivers. Lewis and Hamilton suggest looking for caregiver forums, Facebook and messenger groups where you can vent in a safe space to other caregivers who understand.

4. Find local support.

For Hamilton, local support was critical when it came to caring for her mom. She leaned on the help of her local church and library groups, as well as larger organizations like the Alzheimer’s Society and A Place for Mom.

“Being a caregiver can be isolating and you can feel like you are all alone, it’s so important to make connections where you can,” Maddux says. He found support from his local church community who offered counselling and support. When Maddux’s adult children gave him a monthly reprieve from caregiving, he made use of a local monastery where he mediated, reflected and gathered his energy for the next month ahead.

5. Seek financial aid and advice.

Caregiving takes a huge financial toll, crossing economic situations and impacting families of all backgrounds and economic means. “There are many folks who can’t afford to care for their loved ones 24/7,” Maddux says.

Maddux was fortunate enough to find a local organization that helped subsidize home care for his wife, Martha, while he was at work. In addition to looking for subsidized programs, he advises caregivers to “invest in an elder care lawyer.” Maddux’s lawyer helped get him up to speed on Medicaid which covered some nursing home expenses for his wife when she was no longer able to remain at home. “I’d be flat broke if  I had to pay for that,” he says. “Don’t let caregiving destroy your financial well-being.”

6. Take care of yourself first.

All of our exceptional caregivers mentioned that self-care is easier said than done. It’s something that everyone tells caregivers to do, but in reality “self care is the last thing a caregiver has time for,” Hamilton says. “It’s so counter-intuitive, it’s a real challenge.” So, what can you do to take care of yourself if you don’t have time? “Give yourself a break and a healthy dose of reality,” Lewis advises. Caregivers are often over-critical and feel guilty when they can’t do it all. “If you don’t get it all done will there really be negative effects?” Lewis asks. Instead, she suggests that caregivers prioritize tasks and give themselves permission to not do it all.

Maddux found that keeping a journal was an important part of caring for his emotional well being. Not only did it help him keep track of research and information, it also helped him to vent and track his emotional journey. After Martha passed away, going through his journal became an important part of his grieving process.

7. Try not to isolate yourself.

There is a stigma associated with being a caregiver. This stigma leads many caregivers to hide their situation from friends and love ones, which leads to social isolation.

“Martha did not want to tell her parents, brothers and even our children about her diagnosis,” Maddux says of his wife. “It was very isolating.”

Are you an exceptional caregiver with other tips to share? We’d love to hear your suggestions and tips in the comments below.

Related Articles:

Exceptional Caregivers Share Their Tips posted by Kimberley Fowler

Veterans Guide to Senior Care

There are many benefits out there for veterans who need them. A Place for Mom has created a Free Veterans Guide to Senior Care to help your family unlock the best-kept secrets to paying for elder care. Download yourFree Guide today.Free Veterans Guide to Senior Care

A Place for Mom has helped guide more than 410,000 veterans in their searches for senior care and housing. Part of this assistance involves making veterans and their families aware of benefits that they have earned, but may not know about. Learn about benefits like Aid & Attendance, VA Pension and more, by getting in-depth information about the application process, basic benefits and eligibility, by downloading this Free Veterans Guide to Senior Care expert e-book. If you have senior loved ones and veterans who require care, but are unable to pay for the full costs privately, chances are this e-book can help.

Here is a preview to what you’ll find in this helpful e-book.

The Basics of Veterans Benefits

Sadly, around 69% of veterans are completely unaware of the benefits available to them — and that means many veterans are paying more for their care than they should.

At A Place for Mom, our goal is to help families find the right senior care solution. For many families in the U.S., the hardest part of the process isn’t finding the right community, it’s figuring out how to pay for it.

More than one third of Americans over 65 are either wartime veterans or the spouses of wartime vets. These individuals may qualify for a pension program through the Department of Veteran Affairs (VA), commonly referred to as “Aid & Attendance,” yet only a small fraction of those who are eligible actually know about this benefit.

What Are Some of the Benefits in the Veterans Guide?

  1. VA Pension: The VA helps U.S. Veterans and their families by providing supplemental income through the Veterans Pension and Survivors Pension benefit programs. The pensions are available to U.S. military veterans and widowed spouses of veterans. Pension benefits are needs-based and your “countable” family income must fall below the yearly limit set by Congress.
  2. Aid & Attendance: Veterans and survivors who are eligible for a VA pension and who require the aid and attendance of another person (or are housebound), may be eligible for additional monthly payments above the normal pension amount. When applying for Aid & Attendance, you must also submit a basic pension application if you’re not currently receiving a pension. Financial qualifications for Aid & Attendance are different than financial qualifications for the basic pension alone. Therefore, some people qualify for Aid & Attendance even though they would not have qualified solely for the basic pension.
  3. Housebound Benefits: Housebound veterans and survivors who are eligible for a VA pension may qualify for an additional benefit beyond the basic pension. Individuals who are confined to their immediate premises because of permanent disability, typically leaving only to attend doctor appointments and other medically necessary treatments, or who require the assistance of another person when leaving the home, may be considered housebound.

Award amounts vary, depending on the income of the applicant and the level-of-care they require. You can learn more about the following by downloading and reading the free Veterans Guide e-book:

  • Benefit amounts
  • How to apply for the benefit
  • How benefits are received
  • Monthly benefit payments
  • Which family members qualify for benefits

Eligibility for VA Benefits

VA benefit eligibility can be challenging and complex, so it’s important to understand the differences for each benefit.

Here are general requirements for the VA Pension benefit:

  1. The veteran must have served at least 90 days of active duty, with one of those days being during active wartime.
  2. The veteran must also meet one of the following criteria:
    • Be age 65 or older with limited or no income
    • Be totally and permanently disabled
    • Be a patient in a nursing home
    • Be receiving Social Security Disability Insurance

The Aid and Attendance benefit gets even more confusing as there are specific requirements regarding which activities of daily living he or she can perform, such as bathing, dressing, feeding, preparing meals, taking medication or using the restroom. Eyesight and/or mental or physical incapacity also determines eligibility. The Housebound benefit has specific requirements as to the seniors’ confinement to their home as well as their medically necessary treatments, which are all outlined in the Veterans Guide.

Basic Eligibility

To be eligible for benefits, a veteran must have served at least 90 days of active duty, with one or more of those days occurring during wartime. This does not mean that the veteran had to see actual combat.

If the active duty occurred after September 7, 1980, you must have served at least 24 months or the full period that you were called to duty.

The VA’s dates of wartime are as follows:

  • World War II: 12/7/1941 through 12/31/1946
  • Korean Conflict: 6/27/1950 through 1/31/1955
  • Vietnam War: 8/5/1964 through 5/7/1975, although veterans who served in Vietnam itself (“in country”) as early as 2/28/1961 may also qualify.
  • Gulf War: 8/2/1990 to date to be determined by U.S. government (The Iraq War and Afghanistan War have not been officially declared wartime periods by the U.S. congress, but according to our research totally disabled veterans of the wars in Iraq or Afghanistan may qualify.)

To learn more about each benefit, eligibility and qualifications, as well as to get examples of which veterans qualify for benefits, download the Veterans Guide to Senior Care e-book.

Financial Eligibility for Veterans Benefits

Financial eligibility is determined by many factors, including a senior’s assets and income. If their assets exceed $80,000 and their income is over the maximum amount after deducting out-of-pocket expenses from their gross income, they’ll most likely be denied.

Here are some important determinants of financial eligibility for VA benefits:

  1. The veteran or widow must have a countable income below the amount set by Congress.
    • Countable income includes income such as: disability and retirement payments, interest and dividend payments from annuities, and net income from farming or a business
    • Income from eligible dependents is considered countable income
    • Some expenses, such as unreimbursed medical expenses, Medicare premiums and Medicare Supplemental Insurance Premiums may reduce your countable income
  2. The VA also looks at assets when determining eligibility.

According to the VA, “There is no set limit on how much net worth a veteran or dependent can have, but net worth cannot be “excessive.” The decision as to whether a claimant’s net worth is excessive depends on the facts of each individual case. All net worth should be reported, and the VA will determine if a claimant’s assets are sufficiently large that the claimant could live off these assets for a reasonable period of time.”

Learn more about VA benefit eligibility in the detailed expert e-book.

Aid for Various Senior Living Types

Eligibility for veterans’ benefits also depends on the type of senior living community your family is considering:

  • Adult Day Services — Adult day service providers offer assistance, supervision and meals during the day. They are often a solution for family caregivers who are employed during the day, or who need a chance to run errands or have some time alone. Typically, the amount paid for adult day services may be deducted from gross income when applying for Homebound or Aid & Attendance pensions.
  • Assisted Living — Assisted living communities have emerged in the last two or three decades as an alternative to nursing homes for those who need some care, but not 24-hour skilled nursing care. Aid & Attendance can help qualified recipients pay for assisted living.
  • Independent Living Retirement Communities — While many independent living communities offer amenities like housekeeping, hot meals and transportation; personal care is still the seniors’ responsibility. So many applicants are denied benefits in independent living retirement communities, but may qualify for benefits upon moving to a community that requires more assistance with activities of daily living.
  • In-Home Care — Home care expenses can be deducted from gross income when applying for Homebound or Aid & Attendance pensions, if the expenses are incurred with a licensed home care agency or a private caregiver.
  • Memory Care — Memory care is a specialized kind of assisted living for people with Alzheimer’s, dementia or other cognitive disorders. Most residents who need to reside in a memory care community qualify for Aid & Attendance clinically as a result of their dementia diagnosis. Because of its high cost, Aid & Attendance can be immensely helpful to families with a loved one who needs memory care.
  • Nursing Homes — Nursing homes offer the highest level of care. Nursing homes are generally the appropriate care option for people who are completely immobile, who require medical attention on an ongoing basis, or who require high acuity care for things like feeding tubes or tracheostomies. Since nursing home care is very expensive, VA benefits can be used to help pay for care. Each veteran seniors’ unique situation depends on the level of financial eligibility.
  • Residential Care Homes — Costs vary widely for residential care homes, but usually range from $2,000 to $5,000 per month. As with assisted living, Aid & Attendance works well to help pay for residential care homes but typically only if the home is licensed by the state.

Eligibility for each benefit varies. Get more information in the Free Veterans Guide.

Applying for the VA Benefit

The application for Veterans’ benefits can be a little daunting. This helpful e-book provides in-depth information about the application process, including the following:

  1. What you need to apply.
  2. Where you apply.
  3. Where you can find help.
  4. Which application forms are needed for each benefit.
  5. A directory of resources.

So get started today. Paying for senior living may be intimidating, but there are many resources available for our veteran senior loved ones. Get more information in the Veterans Guide to Senior Care expert e-book.

Do you or a loved one have veterans benefits? What would you like to let other families know about this process? Share your story with us in the comments below.

Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems

 

Mid-to-late stage dementia and Alzheimer’s disease often presents challenging behavior problems. The anger, sadness, paranoia, confusion and fear that people with the disease are experiencing can result in oppositional, aggressive and sometimes violent speech or actions.Dementia Care Dos & Dont's: Dealing with Dementia Behavior

Understand and learn which strategies are most effective in dementia behavior management.

Dealing with Dementia Behavior

Communication difficulties can be one of the most upsetting aspects of caring for someone with Alzheimer’s or some other type of dementia — and it’s frustrating for those with the disease and for loved ones.

Although it can be hard to understand why people with dementia act the way they do, the explanation is attributable to their disease and the changes it causes in the brain.

Familiarize yourself with some of the common situations that arise when someone has dementia, so that if your loved one says something shocking, you’ll know how to respond calmly and effectively.

Common Situation #1: Aggressive Speech or Actions

Examples: Statements such as “I don’t want to take a shower!,” “I want to go home!,” or “I don’t want to eat that!” may escalate into aggressive behavior.

Explanation: The most important thing to remember about verbal or physical aggression, says the Alzheimer’s Association, is that your loved one is not doing it on purpose. Aggression is usually triggered by something—often physical discomfort, environmental factors such as being in an unfamiliar situation, or even poor communication. “A lot of times aggression is coming from pure fear,” says Tresa Mariotto, Family Ambassador at Silverado Senior Living in Bellingham, WA. “People with dementia are more apt to hit, kick or bite” in response to feeling helpless or afraid.

Ann Napoletan, who writes for Caregivers.com, is all too familiar with this situation.

“As my mom’s disease progressed, so did the mood swings. She could be perfectly fine one moment, and the next she was yelling and getting physical. Often, it remained a mystery as to what prompted the outburst. For her caregivers, it was often getting dressed or bathing that provoked aggression.”

DO: The key to responding to aggression caused by dementia is to try to identify the cause—what is the person feeling to make them behave aggressively? Once you’ve made sure they aren’t putting themselves (or anyone else) in danger, you can try to shift the focus to something else, speaking in a calm, reassuring manner.

“This is where truly knowing your loved one is so important,” says Napoletan. “In my mom’s case, she didn’t like to be fussed over. If she was upset, oftentimes trying to talk to her and calm her down only served to agitate her more. Likewise, touching her–even to try and hold her hand or gently rub her arm or leg–might result in her taking a swing. The best course of action in that case was to walk away and let her have the space she needed.”

DON’T: “The worst thing you can do is engage in an argument or force the issue that’s creating the aggression,” Napoletan says. “Don’t try to forcibly restrain the person unless there is absolutely no choice.” Mariotto agrees: “The biggest way to stop aggressive behavior is to remove the word ‘no’ from your vocabulary.”

Common Situation #2: Confusion About Time or Place

Examples: Statements such as “I want to go home!”, “This isn’t my house.”, “When are we leaving?  “Why are we here?”

Explanation: Wanting to go home is one of the most common reactions for an Alzheimer’s or dementia patient living in amemory care facility. Remember that Alzheimer’s causes progressive damage to cognitive functioning, and this is what creates the confusion and memory loss.

There’s also a psychological component, says Mariotto:

“Often people are trying to go back to a place where they had more control in their lives.”

DO: There are a few possible ways to respond to questions that indicate your loved one is confused about where he or she is. Simple explanations along with photos and other tangible reminders can help, suggests the Alzheimer’s Association. Sometimes, however, it can be better to redirect the person, particularly in cases where you’re in the process of moving your loved one to a facility or other location.

“The better solution is to say as little as possible about the fact that they have all of their belongings packed and instead try to redirect them–find another activity, go for a walk, get a snack, etc.,” says Napoletan. “If they ask specific questions such as ‘When are we leaving?’ you might respond with, ‘We can’t leave until later because…’ the traffic is terrible / the forecast is calling for bad weather / it’s too late to leave tonight.”

“You have to figure out what’s going to make the person feel the safest,” says Mariotto, even if that ends up being “a therapeutic lie.”

DON’T: Lengthy explanations or reasons are not the way to go. “You can’t reason with someone who has Alzheimer’s or dementia,” says Ann. “It just can’t be done.” In fact, says Mariotto. “A lot of times we’re triggering the response that we’re getting because of the questions we’re asking.”

This was another familiar situation for Ann and her mother. “I learned this one the hard way. We went through a particularly long spell where every time I came to see my mom, she would have everything packed up ready to go–EVERYTHING! Too many times, I tried to reason with her and explain that she was home; this was her new home. Inevitably things would get progressively worse.”

Common Situation #3: Poor Judgment or Cognitive Problems

Examples: Unfounded accusations: “You stole my vacuum cleaner!” Trouble with math or finances: “I’m having trouble with the tip on this restaurant bill.” Other examples include unexplained hoarding or stockpiling and repetition of statements or tasks.

Explanation: The deterioration of brain cells caused by Alzheimer’s is a particular culprit in behaviors showing poor judgment or errors in thinking. These can contribute to delusions, or untrue beliefs. Some of these problems are obvious, such as when someone is hoarding household items, or accuses a family member of stealing something. Some are more subtle, however, and the person may not realize that they are having trouble with things that they never used to think twice about.

According to Napoletan,

“There came a time when I began to suspect my mom was having problems keeping financial records in order. At the time, she was living independently and was very adamant about remaining in her house. Any discussion to the contrary, or really any comment that eluded to the fact that she may be slipping, was met with either rage or tears. It was when she asked me to help with her taxes that I noticed the checking account was a mess.”

DO: First you’ll want to assess the extent of the problem. “If you’re curious and don’t want to ask, take a look at a heating bill,” suggests Mariotto. “Sometimes payments are delinquent or bills aren’t being paid at all.” You can also flip through their checkbook and look at the math, or have them figure out the tip at a restaurant.

The Alzheimer’s Association says to be encouraging and reassuring if you’re seeing these changes happen. Also, you can often minimize frustration and embarrassment by offering help in small ways with staying organized. This is what Napoletan did for her mother: “As I sifted through records to complete her tax return, I gently mentioned noticing a couple of overdraft fees and asked if the bank had perhaps made a mistake. As we talked through it, she volunteered that she was having more and more difficulty keeping things straight, knew she had made some errors, and asked if I would mind helping with the checkbook going forward. I remember her being so relieved after we talked about it.” From there, over time, Napoletan was gradually able to gain more control over her mother’s finances.

DON’T: What you shouldn’t do in these circumstances is blatantly question the person’s ability to handle the situation at hand, or try to argue with them. “Any response that can be interpreted as accusatory or doubting the person’s ability to handle their own affairs only serves to anger and put them on the defensive,” says Napoletan.

Are you a caregiver or family member of someone with dementia? Do any of these situations sound familiar to you? We want to hear your stories — share them with us in the comments below.

Related Articles:

Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems posted by Sarah Stevenson

Copyright ©2016 A Place for Mom, Inc. All rights reserved.

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