Tailoring a Caregiving Plan to Your Family

If you have a family member who needs ongoing assistance because of a disability, severe medical issue, or a chronic illness, you might need to create a schedule within the family for providing care to that loved one. Few of us can afford to hire a private nurse for a family member. Many people who need caregiving need someone available 24 hours a day, even if some of that time is watching over the person rather than providing medical attention.

Public assistance programs provide limited, if any services, so most families have to figure out who can pitch in and help care for the loved one. If you are like most people, you could use some suggestions on tailoring a caregiving plan to your family. Recent legislation could make that task easier.

The Inherent Problems of Caregiving

People who are already working full-time and raising their families often end up taking shifts along with other relatives. The situation can go on like this for years. The caregivers become exhausted, physically, emotionally and financially.

Resentment can build if some of the family caregivers feel they are doing more than their fair share, while others are not doing their part. Years later, the primary caregivers can get accused of undue influence if the person who received help gives a larger portion of the estate to the primary caregivers out of gratitude.

Why Congress is Paying Attention to the Challenges of Family Caregiving

Our population is aging. By 2026, the baby boomer generation will start to turn 80 years old. Many people in their eighties need long-term care, either in the home or a facility. The high numbers of baby boomers and the declining birthrates mean there will be more people needing family caregiving and fewer relatives available to provide those services.

Family caregiving takes a massive chunk out of our economy each year. Experts say 40 million people in the United States provide unpaid caregiving services to their adult loved ones, who have limitations in their daily activities. The experts on aging value these services at around $470 billion a year.

Another 3.7 million Americans take care of a disabled child under the age of 18. Some people have to provide caregiving for both an older adult and a child. People in the field estimate that about 6.5 million people in our country fall into this category.

The caregivers face immediate and long-term financial crises because of the time they devote to the needs of their vulnerable loved ones. In the moment, the caregiver might have to cut back on work hours or leave a paying job to be there for the family member in need. Losing a paycheck and benefits can put a caregiver into economic hardship. Many caregivers live in poverty in later years of their lives because it was impossible to contribute to retirement savings or the Social Security system during the long years of caregiving.

Congress is working on measures to provide more public resources for family caregivers. The “Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act,” which was passed in January of 2018, requires the Secretary of Health and Human Services to investigate how families are currently handling caregiving, and then to create strategies for state and communities to support caregiving families. Increased assessments and service planning dovetailed with education, support, and respite options can impact financial security and workplace issues of caregivers.

Until more support is given to caregivers on an official level, families will have to make do with coordinating care on their own. Be sure to have honest and open discussions frequently with everyone involved.

References: AARP. “Building a Family Caregiving Strategy to Align with the Real Needs of Families.” (accessed October 31, 2019) https://blog.aarp.org/thinking-policy/building-a-family-caregiving-strategy-to-align-with-the-real-needs-of-families 

Are You Prepared to Age in Place?

If aging in place is your goal, then long-term planning needs to be considered. Some things to think about include how the house will function as you age, whether there will be accommodations for the people who will care for you, and how to pay for the care that you might need, says the Record Online in the article “Start planning now so you can ‘age in place.’”

Many homes will need to be remodeled for aging in place, and those changes could be big or small. Some changes that almost everyone has to consider include installing ramps and adding a bathroom and bedroom on the first floor. Smaller changes include installing properly anchored grab bars in the shower, improving lighting, and changing or updating the floor covering to avoid problems with walkers, wheelchairs or unsteady seniors.

Choosing a caregiver and paying for care is sometimes difficult to think about, oftentimes because they are intertwined issues. Many adult children become caregivers for aging parents, and for the most part, they are unpaid. Family caregivers suffer enormous losses, including lost work, career advancement, income, and savings. Stress and neglect of their own health and family is a common byproduct.

You’ll want to speak with an estate planning eldercare attorney about how or if the parent may compensate the child for their caregiving. If the parent is applying for Medicaid and the payment is deemed to be a gift, it will cause a penalty period, when Medicaid won’t pay for care. A caregiver agreement drafted by an elder law estate planning attorney will allow the parents to pay the children that provide them care without having it be considered a gift or triggering a penalty period. Keep in mind, though, that the child will need to report this income on their tax returns.

The best way to plan ahead for aging in place is to purchase a long-term care insurance policy. If you qualify for a policy and can afford to pay for it, it is a good way to protect assets and income from going towards caregiver costs. You can also relieve the family caregiver from duties or pay them for caregiving out of the insurance proceeds.

Without long-term care insurance, the next option is to apply for community and in-home care through Medicaid to pay for care in the home, if available in your state. To qualify, a single applicant can keep $15,450 in assets plus the house, up to an equity limit of $878,000 and only $878 per month of income. For a married couple, when one spouse applies for community Medicaid, the couple may keep $22,800 in assets plus the house and $1,287 per month of income. If the applicant or spouse is on a managed care plan, the couple may keep even more assets and income.

Another option is spousal refusal, which may allow the couple to keep more assets and income. When an applicant has too much income, a pooled income trust may be used to shelter income from going towards the cost of care. This is a complicated process that requires working with an estate planning attorney to ensure that it is set up correctly.

Self-paying for home care is another option, but it is expensive. The average cost of home health care in some areas is $25 per hour or $600 per day for around-the-clock care. When you get to these costs, they are the same as an expensive nursing home.

Planning in advance with careful analysis of the different choices will give the individual and the family the best picture of what may come with aging in place. A better decision can be made, once all the information is clearly assessed.

Reference: Record Online (Aug. 31, 2019) “Start planning now so you can ‘age in place’”

Dark Side of Medicaid Means You Need Estate Planning

A woman in Massachusetts, age 62, is living in her family’s home on borrowed time. Her late father did all the right things: saving to buy a home and then buying a life insurance policy to satisfy the mortgage on his passing, with the expectation that he had secured the family’s future. However, as reported in the article “Medicaid’s Dark Secret” in The Atlantic, after the father died and the mother needed to live in a nursing home as a consequence of Alzheimer’s, the legacy began to unravel.

When the mother was placed into a nursing home, a guardian of the state signed her up for the state’s Medicaid program, MassHealth. Just weeks after entering the nursing home, her daughter received a notice that MassHealth had placed a lien on the house. The daughter called MassHealth; her mother had been a longtime employee of Boston Public Schools and there were alternatives. She wanted her mother taken off Medicaid. The person she spoke to at MassHealth said not to worry. If her mother came out of the nursing home, the lien would be removed, and her mother could continue to receive benefits from Medicaid.

The daughter and her husband moved to Massachusetts, took their mother out of the nursing home and cared for her full-time. They also fixed up the dilapidated house, treating it as if it was theirs because that’s what they believed it to be. To do so, they cashed in all of their savings bonds, about $100,000. They refinished the house and paid off the two mortgages their mother had on the house.

Her husband then began to show signs of dementia. Now, the daughter spent her days and nights caring for both her mother and her husband.

After her mother died, she received a letter from the Massachusetts Office of Health and Human Services, which oversees MassHealth, notifying her that the state was seeking reimbursement from the estate for $198,660. She had six months to pay the debt in full, and after that time, she would be accruing interest at 12%. The state could legally force her to sell the house and take its care of proceeds to settle the debt. At this time, her husband had entered the final stages of Alzheimer’s.

Despite all her calls to officials, none of whom would help, and her own research that found that there were in fact exceptions for adult-child caregivers, the state rejected all of her requests for help. She had no assets, little income, and no hope.

State recovery for Medicaid expenditures became mandatory, as part of a deficit-reduction law signed by President Bill Clinton. Many states resisted instituting the process, even going to court to defend their citizens. The federal government took a position that federal funds for Medicaid would be cut if the states did not comply. There are even some states who took a harder line, even allowing pre-death liens, taking interest on past-due debts or limiting the number of hardship waivers. The law gave the states the option to expand recovery efforts, including medical expenses. Many did, collecting for every doctor’s visit, drug, and surgery covered by Medicaid.

Few people are aware of estate recovery. It’s disclosed in the Medicaid enrollment forms but buried in the fine print. It’s hard for a non-lawyer to know what it means. When it makes headlines, people are shocked and dismayed. During the rollout of the Obama administration’s Medicaid expansion, more people became aware of the fine print. At least three states passed legislation to scale back recovery policies after public outcry.

The Medicaid Recovery program is a strong reason for families to meet with an elder law attorney and make a plan. Assets can be placed in irrevocable trusts, or deeds can be transferred to family members. There are many strategies to protect families from estate recovery. This issue should be on the front burner of anyone who owns a home or other assets, who may need to apply for Medicaid at some point in the future. Avoiding probate is one part of estate planning, avoiding Medicaid recovery is another.

Since the laws are state-specific, consult an elder law attorney in your state.

Reference: The Atlantic (October 2019) “Medicaid’s Dark Secret” 

Get the Facts About Dementia Care

Caring for a person with dementia is tiring. A person with Alzheimer’s disease or another form of dementia might need to move into a specialized care facility for his own safety and medical care. If you have a loved one in this situation, you need to know about the options available for dementia care in assisted living and nursing home facilities. More than what the facilities look like, you should also look at how the specific facility cares for their patients in specific situations.

The Alzheimer’s Association created practice recommendations for nursing homes and assisted living facilities that offer dementia care for residents. These guidelines focus on six care areas:

  • Food and fluid consumption
  • Pain management
  • Social engagement
  • Wandering
  • Falls
  • Physical restraints

Care Recommendations about Food and Fluid Consumption

People with dementia do not always make good choices about the food and liquid they consume. They might not consume enough to meet their nutritional or hydration needs, or they might consume items with little nutritional value. As a result, their health and comfort can suffer.

Facilities that provide dementia care should:

  • Perform initial and routine periodic assessments of each resident’s food and fluid consumption status.
  • Develop procedures that ensure the residents consume proper food and liquids.
  • Make mealtimes enjoyable events, where staff interact with the residents and assess the food and fluid in a pleasant social setting.

Residents with physical challenges that make eating or drinking difficult should receive an assessment by qualified professional specialists.

Pain Management Care Recommendations

Because many people with dementia have difficulty communicating, they under-report their pain and do not receive the treatment they need. Untreated pain is one of the main reasons why nursing home residents develop undesired behavioral symptoms. In these cases, the residents frequently receive psychotropic drugs to manage their behavior, instead of getting relief from their pain.

Dementia care should include:

  • Including pain assessment in every vital signs check, along with pulse, temperature, blood pressure and respirations. Consider pain as the “fifth vital sign.”
  • Routinely treat pain just as one would address problems with any other vital sign.
  • Customize the pain management techniques for each resident, taking into account the individual’s risks, medical conditions, needs, and other relevant circumstances.

Appropriate pain management can improve the resident’s quality of life.

Guidelines for Social Engagement

Every day, the facility should offer multiple opportunities for residents with dementia to engage in fun, meaningful social activities. The nursing home or assisted living center should consider each resident’s interests and functional abilities. A roomful of residents sitting in their wheelchairs passively watching a staff member perform an activity has little meaning for them, as compared to an event in which the residents can actively participate.

That being said, the home should also respect each resident’s preferences, including any desire for solitude or downtime. The staff should never force a resident to participate in an activity.

Recommendations about Wandering

Many people with dementia engage in a behavior called wandering. Often, the resident wanders because he is physically uncomfortable, in emotional distress, is bothered by something in his environment, or is looking for social contact.

Facilities that offer dementia care need to encourage the resident to be mobile and physically active but provide a safe and independent means for him to do so. Some dementia care facilities have hallways that loop around in a circle, so residents can satisfy the need to walk without ending up far from their rooms.

The center should assess the reasons for the individual’s wandering and try to meet those needs.  The facility should also develop protocols that prevent unsafe wandering, including exit seeking.

Guidelines to Prevent Falls

The facility should assess each resident’s risk of falling to prevent injuries. Fall injuries can rob a resident of her mobility, and for many a fall can result in rapid deterioration of health overall. The center should implement measures that reduce the risk of falling. Keep in mind that physical restraints lead to fall injuries. For this and other reasons, nursing homes should avoid the use of physical restraints.

Recommendations on the Use of Physical Restraints

Sometimes a nursing home will use physical restraints under the misguided notion these devices keep residents safe. However, in fact, restraints often harm residents. Facilities should identify the reasons for undesired behavior and address those issues without using restraints. The staff should receive training on restraint-free techniques for keeping residents safe.

Every state has different laws, and your state’s regulations might vary from the general law of this article. You might want to talk to an elder law attorney near you.

References: National Consumer Voice. “Dementia Care.” (accessed August 15, 2019) https://ltcombudsman.org/issues/dementia-care

Use This Checklist When Visiting Assisted Living Facilities

When you are trying to find an assisted living community for yourself or a loved one, you need to do your homework to find at least three candidates that meet all the needs of the future resident. After you have narrowed your search down to those facilities, you should visit each one with the person who will be living there. Know what you want to look for before you visit the first center, so you will get all the information you need from every facility.

It is easy to get overwhelmed in the process of finding the right assisted the living community. To help you in this quest, use this checklist when visiting assisted living facilities.

  1. First impressions count. Pay close attention to your initial thoughts and feelings about the center as you approach and enter. Your instincts often pick up on “micro-symptoms” that can indicate a problem, even before you notice the issue itself.
  2. Try to see down the road. Visualize yourself or your loved one actually living at the assisted living community. Ask yourself if you would be happy there. Pay attention to whether you feel comfortable or anxious. Evaluate whether the staff and other residents are friendly and inviting.
  3. Use Smell-a-vision. When you walk through the building, pay attention to the smells. You should not be able to detect any unpleasant odors. Strong “cover-up” scents are also a warning that the place likely has cleanliness issues.
  4. Look for dirt, dust, and grime in the obvious locations and places, like the baseboards and windows. You might be surprised at how many expensive assisted living centers cut corners on cleaning costs.
  5. Watch the staff in action, particularly when they are interacting with the residents. Pay attention to their facial expressions and tone of voice to see if they love their jobs or are merely going through the motions. You should also observe the body language of the residents when they receive care from the staff. Look for any signs of fear, hostility, or resentment. Keep looking until you find a place where both the residents and the staff are happy, warm and friendly.
  6. The proof is in the pudding. Good food is one of the highlights for many people who reside in assisted living. Visit during mealtime and arrange to eat a meal there. Find out if the meals are both nutritious and tasty. Get a copy of the monthly menus to check for variety. Find out the center’s policy for when a resident cannot come to the dining room.
  7. Explore both the outdoor areas and the indoor facilities. Make sure that your loved one would be safe when enjoying some fresh air outside. Look to see if there are adequate sitting areas and tables.
  8. Talk to and observe the current residents. You can find out valuable information from the people who already live at the center. Without making them feel uncomfortable, notice whether the residents are well-groomed and wearing clean clothes. Sit and visit with some residents. Let them know you are considering this community for yourself or a loved one. Ask for their advice. Find out if they have to wait a long time for personal care or other services. If so, the facility is likely under-staffed.

References: A Place for Mom. “Tips for Touring Assisted Living Communities.” (accessed August 7, 2019) https://www.aplaceformom.com/planning-and-advice/articles/tips-for-touring-assisted-living