By Cynthia Kuster
There’s a saying: “No good deed goes unpunished.” For better and for worse, that applies to America’s aging population. Due to better health habits, better diets, and the growing ability of medicine to treat physical ailments, people are living longer – often, much longer – than they did even one generation ago. Yet medicine has not yet managed to address mental decline in an effective way.
The end result is that more and more people are reaching their final years in good physical health, but with any of numerous forms of dementia. The population of seniors with dementia is large – approximately 10 million in the US alone. And this figure is expected to grow dramatically in the years to come. What are the problems this trend will cause, and how can people protect themselves against them?
Important note: Some of the Medicaid strategies we discuss here are specific to New York State. New York’s Medicaid program is among the most generous of any of the states.
Risk #1: Dementia Care is Extremely Expensive.
Nursing homes in New York can cost $200,000 per year, and even home care can cost $100,000 per year.
How to plan for and deal with this financial risk:
- Keep the affected person home as long as possible, with home care if need be. This will reduce the cost of care. It has an important added benefit as well. Staying in a known environment avoids the disorientation that often occurs when a person whose mental capacity is declining is moved.
- In New York, Community Medicaid pays for care in the home – and there is NO five year “look back.” So you can protect your loved one’s assets by transferring them to a family member or an asset protection trust, and access Medicaid very quickly. The transferred assets can be used to pay for the person’s living expenses and to supplement the care Medicaid is providing, if necessary.
- For married couples, planning is particularly important for healthy spouses. They need to protect themselves against becoming impoverished while caring for their ill spouses.
- Planning as soon as possible after a diagnosis can help avoid financial ruin, particularly if nursing home care is eventually needed.
Risk #2: Caring for a Loved One with Dementia Can Affect the Health of the Caregiver.
“Caregiver burnout” has a name for a reason: it happens a lot. For senior couples, caring for the ill partner is taxing, and often impossible, for the “well” (frequently merely “less ill”) partners. Often they have aging issues themselves. Even younger caregivers often become mentally and physically overwhelmed by the emotional and physical demands of caregiving.
How to address the risk of caregiver burnout:
- Caregivers should carefully assess whether they need assistance. We often point out to our clients that if they fall ill themselves from the demands of caregiving, they will not be able to care for their loved one. Talking to friends or to a Geriatric Care Manager can help you decide whether you need help and how to get it.
- Adult day care can be a good option to give a caregiver time to manage other household issues, or to go to work.
- Help from an aide, even if only for a few hours at a time or a few times a week, can provide a welcome respite.
- A caregiver support group can also be a big help. Talking to people who are going through the same issues as you can educate, comfort and reassure you. You can trade suggestions, insights and stories, and sometimes best of all, realize that you are not alone. PSS Circle of Care is a nonprofit group with locations in all five boroughs that provides support and support groups for caregivers. Services are available in both English and Spanish.
Risk #3: Caring for a Loved One with Dementia Affects the Caregiver’s Income Potential.
We recently addressed this problem in an article we wrote for our website. Often the children who care for aging parents, usually women, are in their prime income-earning years. Dropping out of the workforce to care for a parent can jeopardize not only their current income, but their retirement savings as well, just at the time when, as empty nesters, they can save the most.
- Try to limit the amount of time you are away from work. Don’t hesitate to hire an aide. Not only will it give you a break from caregiving, as mentioned above; it will also enable you to work more yourself and keep your career going at the time when it most affects your own future.
- If you are going to be the caregiver, a Caregiver Agreement can provide you with income to replace the income you will lose from leaving or cutting back on your job. It is also a positive way to recognize and compensate a sibling who is doing a larger part of the caregiving than others. Where appropriate, the Caregiver Agreement can be designed to facilitate Medicaid eligibility.
- Read more in our article about the Demands of Caregiving.
Risk #4: Finding and Overseeing High Quality Care for a Loved One with Dementia is Difficult.
When you are starting to seek outside care for a loved one, many people do not know where to turn. Home care agencies have sprung up everywhere, but a person with dementia is vulnerable. They can’t necessarily report abuse, if it occurs.
- Finding a high quality caregiver is important. Home care agencies have more oversight and control. Of course nothing is perfect, but you have more control and flexibility than if you hire someone yourself. And don’t make the mistake of paying someone “in cash” – it’s illegal, and in addition, opens you up to serious potential liability issues.
- For children or caregivers who live far away, a Geriatric Care Manager (now unhelpfully re-branded as an “Aging Life Care Professional” by the former National Association of Professional Geriatric Care Managers) can be extremely helpful. The GCM can be hired to stop in from time to time to make sure things are okay.
- If your loved one needs nursing home care, do your homework. Visits, personal recommendations and online reviews all contribute to the picture of a facility. For dementia patients particularly, focus on the attentiveness of the staff and the quality of care. Furnishings and décor are likely to be of little importance to your loved one.
Risk #5: Managing the Affairs of Someone with Dementia May Be Legally Prevented If It Is Not Planned For Ahead of Time.
If someone is losing mental capacity, they may stop paying bills. They also become vulnerable to exploitation, scams, and outright thievery. In most cases their affairs will have to be taken over by someone else. But the legal authorization to do so, in the form of a Power of Attorney, must be executed while the affected person still has mental capacity. Otherwise it will take a court proceeding to determine who will manage the affairs of the incapacitated person.
- Every adult, but in particular every senior, should have a comprehensive Power of Attorney (POA) in place, whether or not it is needed at the time. This is a crucial document, with key provisions and protections for the person who grants the POA.
- When seniors begin to lose mental capacity, usually they are happy to cede control to someone who will pay the bills and, for example, get the air conditioning fixed for them. For people who are reluctant to give up control over their affairs, it can be difficult, but waiting until the person no longer has mental capacity leaves that person and his or her caregivers in a very difficult position, because nobody has the power to act without a court order.
- The POA gives the Agent power to act in the grantor’s place at any time.
- Although it gives the Agent a lot of power, a POA requires the Agent to act in the grantor’s best interest.
- The POA does not have to be physically given to the Agent. The grantor can keep it in his/her possession, and tell the Agent where it is in case of an emergency. For someone who is not ready to give up control, this can provide them with peace of mind.
Risk #6: Once the Affected Person Loses Mental Capacity, Their Health Wishes will be Impossible to Express.
Discussing what your loved one’s wishes are is a difficult conversation, but an important one. And it’s certainly better to have the conversation while the affected person is able to convey what those wishes are.
- Executing a Health Care Proxy is key to avoiding this situation. In it, the affected person names one person as Health Care Agent. The Agent acts only if the affected person is not able to express his or her wishes. Most important is for the person naming a health care agent to communicate his or her wishes directly to the Agent. Writing something down may be useful as a guide, but should be indicated to be only a guide, with final decision making power left solely in the hands of the Health Care Agent.
- A “Living Will” is problematic, as it will suffer from vagueness or ambiguity, leaving it open to differing interpretations and dispute. Medical problems can be complex, and new treatments and solutions are being developed all the time. This makes it difficult to make medical decisions in advance. Having a Living Will can cause problems and should be avoided.
Planning ahead may feel daunting, but the peace of mind that comes with knowing that a loved one’s wishes are known, and that you have provided for the affected person’s health care, lifestyle, and financial security, can and should be a tremendous comfort.
Cynthia Kuster: Director of Institutional Relations, Lamson & Cutner, P.C. Attorneys for the Elderly and Disabled