Alzheimer’s and Family Caregiving

This year, in 2020, a significant portion of the American baby boomer generation has reached the age of 65 or older, which increases their risk for Alzheimer’s and other forms of dementia diseases. By the year 2030, the 65 plus age segment of the population will increase substantially, accounting for over 20 percent of the American people. In the absence of a cure, the number of cases of Alzheimer’s disease will increase. Projections that these Americans will survive well into their eighties, nineties, and beyond will dramatically increase. These longer life expectancies are due to continuing medical advancements in conjunction with improved social and environmental conditions. 

The Alzheimer’s Association 2020 report entitled Alzheimer’s Facts and Figures cites that 83 percent of daily help for older Americans comes from family members, friends, or other unpaid caregivers. Of that 83 percent providing help, 48 percent (more than 16 million) do so for someone with Alzheimer’s disease or different dementia types. Annually, the number of hours these unpaid caregivers provide for their loved ones is estimated to be a staggering 18.6 billion hours of non-compensated care. These hours have an intrinsic value of 244 billion dollars to this nation, not a difficult number to arrive at considering the lifetime care costs in 2019 for older Americans who have dementia was 357,297 dollars. Fully 70 percent of the total dementia cost of care is borne by a family member who provides unpaid caregiving and out of pocket expenses that range from prescription medications to food for the loved one who has dementia.

Even these staggering estimates for lifetime care costs are probably significantly underestimated. Expenses do not take into account the impact of dementia on a family caregiver’s health. Nor does it account for a decrease in workplace productivity and lost wages due to decreased hours on the job when caregiving deems it necessary to skip work. Why is it these caregivers are so willing to provide assistance and care to a person who has Alzheimer’s or another form of dementia disease? The Alzheimer’s Fact and Figures report cite three main reasons for this sort of selfless devotion to a loved one.

The first is that for 65 percent of them, the caregiver has a strong emotional desire to keep the family member at home with them, especially in times like these with the Covid-19 pandemic. The second is that 48 percent prefer to maintain proximity and closeness to their family members, making oversight easier and safer. Finally, 38 percent of caregivers indicate an obligation they perceive to care for their loved one with dementia. Words like love, and a sense of duty, are often cited as motivating factors to assume the care responsibilities for a family member who has dementia. Only 8 percent of older adults with dementia do not receive help from a family member or other informal care provider. 

Who are these caregivers primarily? About two-thirds of them are women, and 30 percent of them are age 65 and older. Sixty percent of caregivers are married, cohabitating, or in a long-term relationship, and more than half of them are assisting their parent or an in-law with dementia. Approximately one quarter are in the sandwich generation, meaning they simultaneously tend to their aging parents and raise younger children.

Due to disease progression, nearly all Alzheimer’s and dementia sufferers end up in full-time nursing facilities. Loved ones are experiencing loss of judgment, orientation, and practical communication skills in the mid to late stages of Alzheimer’s disease. Some may exhibit strong personality and behavioral changes and become aggressive or even violent. At this moment, the family caregiver must accept they are limited in their ability to continue to provide substantive care and transition to more of an emotional support role as well as advocate for their loved one, interacting with the facility and staff to assure appropriate care. This transition is a relief to many family caregivers who often experience feelings of intense burden, impaired mood, depression, and poor health while caring for their loved one with Alzheimer’s in the home.

Unpaid caregivers experience a wide array of challenges when caring for their loved ones with Alzheimer’s or other forms of dementia disease. Financial, physical, social, and emotional well-being are continually shifting and often not for the caregiver’s better. While it is very generous and selfless to choose to care for a loved one experiencing dementia, it is also depleting, and most often, the “reward” for the service is saying a final goodbye to someone you love who no longer recognizes you. Caregivers of all types need to set boundaries to reduce stress for their own needs and reach out to local groups or forums online to share in successes and frustrations. Tending to your personal needs as an unpaid caregiver is especially crucial when caring for a loved one with Alzheimer’s or other dementia diseases.

We help families who have loved ones with dementia make sure there is a solid legal plan in place to cover care, how to pay for it, and how to prevent losing everything to the high cost of long term care. If you’d like to discuss your particular situation, please don’t hesitate to reach out by calling us at 1.800.660.7564 or by emailing us at info@covertlaw.com.

Pause Before You Sign that Nursing Home Contract

 

Suppose your mother can no longer make decisions for herself and she now needs nursing-home care. You are stressed and anxious. The nursing home puts a twenty-page, single-spaced contract in front of you. You wish you could flip straight to the last page and sign then and there, just to get it over with.

Do not do this. You could be agreeing to pay, out of your own pocket, many thousands of dollars for your mother’s care.

Try to get your mother admitted and then, before you sign the contract, bring it to us for our review and guidance. Once your mother has moved in, she can’t be evicted just because you want to negotiate the contract.

But if that is not feasible, then sit down and take a few deep breaths. Read the contract carefully. Make a list of questions and ask a facility representative to explain. Ideally, that person would sit with you as you go through the document. Don’t sign until you understand.

Here is what to watch out for.

You should not use your own money to pay

* Do not sign the contract if it requires you to obligate yourself to pay with your own money. Carefully scrutinize any language referring to you as the “responsible party” or “resident representative” or “agent.”  

The suspect buzz-words are “co-signor,” “guarantor,” “personally guarantee,” “personally liable,” “private-pay guarantor,” “surety,” “individual capacity,” or any such language. Words like these obligate you, personally, to pay if your mother doesn’t have the money. Don’t sign even if there are no buzz-words, but the language looks something like this: “If the resident does not or cannot pay, I will pay the amount owed for residency charges, services, equipment, supplies, medication, and other charges.”

Please understand that it is legal for the facility to require you, if you hold financial power of attorney or are guardian, to pay nursing-home bills from your mother’s money and assets. It is legal to require you to spend her money on her care and not for any other purpose. It is not legal to condition your mother’s admission on your agreeing to pay her bills with your own money, which is what the above buzz-words mean in plain English. The nursing home can ask you to agree – and if they ask, refuse – but you cannot be forced to agree to pay with your own money.

If your mother lacks the money, the next step is to apply for Medicaid assistance, not to go digging into your pocket.

Sometimes the contract is confusing. For instance, one nursing-home agreement says that the representative “personally guarantees continuity of payment.” This alarming language is properly followed by an italicized statement that the representative is “not required to pay for Resident’s care from his/her own personal funds.” The agreement proceeds, though, to use the phrase “personally guarantee” in other contexts. Ambiguity like this is why we recommend that you first bring the agreement to us. We can ensure, on your behalf, that the facility clarifies such language and does not misapply it.

Everyone in need has the right to apply for Medicaid

*           The nursing-home contract must not require your mother to waive – give up – her right to seek government assistance like Medicare or Medicaid, nor can it ask her or you to sign any statement that she is ineligible for those benefits.

*           If your mother has no money to pay for care, a Medicaid application will be required. The contract may seek your permission to apply for Medicaid for you. You have the right to decline that option and, instead, seek legal counsel to help you apply. We have seen some facilities mishandle Medicaid applications, which wound up being denied when they should not have been.

In any case, though, whoever files for Medicaid, you must cooperate by immediately providing all records necessary for that application.

If your mother is eligible for Medicaid, Medicaid pays

*          If your mother does get Medicaid, the nursing home must not require an additional payment over and above that designated by the Medicaid scheme in your State. 

*           The nursing home must not demand that your mother receive additional services not covered by Medicaid and then, if your mother declines those services, evict her. It should ask, in advance, whether those services are desired at specified additional cost.

*           The nursing home must not require additional donations to a charity as a condition of admittance.

Do not agree to arbitration

*           The contract may seek your consent to arbitration. If you agree, you will be giving up your right to a jury trial if a dispute arises. The rules are in flux at the moment, but, generally, you should decline such a provision.

The nursing home must protect property reasonably

*           The nursing-home contract may try to fudge its responsibility to take care of your mother’s property, but the bottom line is that it is obligated to care for your mother’s property during her stay. You should, however, use good judgment to safeguard her valuable property like fine jewelry by keeping it elsewhere.

Protect yourself. Cross out, and sign the right way

*           Cross out provisions in the contract that you decline, and put your initials by the strike-outs. 

*           Be sure to sign the contract only as your mother’s agent. Your signature should read: “[Mother’s name], by [your name], her agent.” 

To be fair to nursing homes, they are entitled to be paid and they often have difficulty collecting on legitimate debts. Facilities are forbidden from suing to take a resident’s Social Security or pension income. They must comply with strict federal consumer-protection restrictions. Despite these payment hurdles, they must still protect frail and vulnerable people from all manner of harm. They also suffer public hostility, thanks to the misconduct of some bad actors. We always urge cooperation with nursing-home personnel if feasible, because their job is a difficult one.

On the other hand, you and your family have the right to be protected from the excesses of bad actors – or from the imperfections, for example, of the facility mentioned above that misuses the “personally liable” language. Thus, no matter how reputable the facility, it is good judgment to consult an attorney before you sign an admission contract. If that’s not possible, then take care and time to study the contract, get facility staff to explain it to you, and strike out the objectionable provisions as advised above.

A few moments of care, even despite the stressful circumstances you are surely in at the time, can save you a lot of difficulties later. Please feel free to reach out if you have questions or need assistance by calling us at 1.800.660.7564 or by emailing us at info@covertlaw.com.

Holding a Family Caregiving Meeting

A family caregiving meeting is an essential tool when dealing with the care of an aging loved one. These meetings are beneficial for helping to keep all family members abreast of decisions that need to be made, changes in diagnosis or prognosis, and help to ensure that all family members feel that they have a voice. Family meetings can also help to keep caregiving responsibilities from falling solely on the shoulders of one family member. In addition, family caregiving meetings can foster cooperation among family members and lessen the stress associated with caring for an aging loved one.

Who should attend a family caregiving meeting?

There are a number of people who should be included in a family caregiving meeting. First and foremost, it is important to include the aging loved one in the meeting whenever possible. This helps the aging loved one to feel that they are being heard and that their opinions and thoughts are being considered. If a spouse is living, the spouse should be included, as well as any children and possibly siblings of the aging person. Some families may choose to include other family members, but this really varies from one family to another. Anyone else involved in care for the person should also be there. This could include paid caregivers, family friends, or neighbors. Depending on family dynamics, a facilitator can be helpful in running the meeting.

When should a family have a caregiving meeting?

First it is important to note that family caregiving meetings are not a one and done event. They must occur on a regular basis. The first family meeting can occur before an aging loved one actually needs care. This can give the person who may eventually need care more say in their future care, but often times this does not occur. Most families find that the initial meeting needs to occur when an aging loved when begins to show signs of needing care or when a diagnosis is given that determines care will soon be needed. In addition, meetings should be scheduled regular to discuss changes in diagnosis, prognosis, or general needs of the loved one or the caregivers.

How can a family hold a successful caregiving meeting?

The key to having a successful caregiving meeting is cooperation. This doesn’t mean that family members will agree on everything, but it is important that all family members are respectfully heard and considered. Families must be willing to compromise and seek the best plan for their aging loved one. Additionally, a smoothly run meeting should have an agenda and families should try to stay focused on the items included on the agenda. When holding a meeting, always put things in writing and be sure that all those involved get a copy of the important information and everyone’s responsibilities.

What challenges do families face in caregiving meetings?

One of the biggest challenges to family caregiving meetings is the family’s history. All families have their own dynamics that can cause problems in a caregiving meeting. There may be members of the family who are at odds with one another, creating an obstacle to having a successful caregiving meeting. The role that each family member plays can be a challenge. Some members may be overbearing and demand control, while others are peacemakers and do not feel free to share their thoughts. Another challenge is that some family members may be in denial of the severity of an aging loved one’s needs which could make it difficult to get a consensus for care.

Family caregiving meetings are beneficial and necessary when an aging loved one can no longer care for themselves. These meetings can help to divide the responsibilities of caregiving and reduce stress placed on the family members. It is important that families remember that the meetings are for the care of their loved one and cooperate with one another to help the process to run more smoothly and successfully.  If you have any questions about something you have read here about holding a family caregiving meeting, or about anything else, please feel free to contact us at 1.800.660.7564 or email us at info@covertlaw.com.

The Stress of Caregiving on the Sandwich Generation

Dorothy Miller, a social worker, first created the term “sandwich generation” in 1981. A Journalist, Carol Abaya, continued to study and add to what the term means. In 2006, Miriam Webster included the term, sandwich generation, in the dictionary for the first time. The sandwich generation is defined as a generation of people who care for their aging parents while supporting their own children. It is believed that this is occurring because of the increase in life span for adults and also because of delayed parenting. This means that medicine and technology are allowing people to live longer and couples are waiting to start families at a later age. Therefore, leaving people sandwiched between caring for aging loved ones and young children. This can lead to some potential problems for the sandwich generation.

Issues for the Sandwich Generation

One major issue for the sandwich generation is financial burdens. Because many in the sandwich generation may not have anticipated have to provide for the needs of their aging parents, they may be stretched thin financially. Another issue for this group that is often compounded by financial struggle is stress. When pulling double duty of caring for children and aging parents, stress is an understandable and expected side effect. Whatever the living situation of the aging parent, the responsibilities of caring for the aging parent often adds to the already busy schedule related to parenting their own children. The sandwich generation then fills pulled in too many directions. This can often leave them feeling as though they do not have enough of themselves to give to everyone they need which in turn leads to guilt and burnout.

If these issues continue to mount, then depression can become another issue for the sandwich generation. Depression can set in when the sandwich generation has little time for hobbies or social interactions, leaving them feeling isolated. The stress and financial burdens can contribute to feelings of depression. The bottom line is that the sandwich generation must recognize these potential problems and find ways to deal with them. Otherwise they will be ineffective in their care for aging parents and their own children and the pressure will continue to mount.

Dealing with Issues for the Sandwich Generation

In order to be a good caregiver, the sandwich generation must find ways to take care of themselves and to ask for and accept help when necessary. One way for the sandwich generation to find times for themselves is respite care. Respite care provides short-term relief from caregiving responsibilities. Respite car provides a way for caregivers to can find time for themselves and take care of family responsibilities.

Caregivers can plan ahead for tasks and finances to help tackle stress and financial burdens. Having a family meeting to delegate responsibilities to other family members can be very beneficial. This means giving up some things to the spouse and children. Extended family can also help to share the responsibility of caregiving, so meeting with siblings or other involved family members to share the task of caring for the aging parent can help to lessen the burden on one person. Having a close friend to talk to about the struggles can also be a very therapeutic way to deal with the stress experienced by the sandwich generation.

Being a member of the sandwich generation has many challenges. The demands on a person caring for aging parents while also raising their own family can be overwhelming. Self-care is essential to avoiding the pitfalls associated with caregiving. In addition, it is important to remember that it is perfectly acceptable to seek or ask for help in order to maintain mental health and provide good care for everyone.

If you have any questions about something you have read or would like additional information, please feel free to contact us at 1.800.660.7564 or email us at info@covertlaw.com.