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Help to Help You Care for Your Loved Ones

Old couple in classic carFamily caregivers can play many roles, like scheduler, financial manager, housecleaner, encourager, nurse, navigator, nurturer and more. But the most important role is advocate, ensuring the best life possible for our family and friends when they are vulnerable, says AARP in “How to Be an Effective Advocate for Aging Parents.”
That means knowing what they want for care and quality of life and then making sure those wishes are followed. It also includes helping loved ones manage finances and legal matters, and making certain they receive appropriate and high-quality services and treatments when needed.
Here are a few important skills, many of which you may already possess:
1. Observation. We’re typically too busy or tired to notice small changes, but sometimes the slightest shift in a loved one’s ability, health, moods, safety or needs is a sign of a larger problem or health challenge. You need to catch those changes early to make a difference. Reviewing the services they’re receiving and adjusting any substandard care is another big responsibility.
2. Organization. There’s a lot of moving parts in a caregiving plan. Organization is a real challenge. As an advocate, be sure you can easily access all legal documents you need, like power of attorney for finances and health care.
3. Communication. It’s always an important skill for building relationships, especially with those who help care for your loved ones, like attorneys, aides and doctors. Try to be respectful and set your emotions aside when you are advocating for a loved one. And know that listening is just as important as speaking in effective communication. Be clear, concise and to the point—and show your gratitude.
4. Questioning. Ask questions! But be prepared and do your job of gathering information. Educate yourself about your loved ones' health conditions and financial or legal matters. Don't stop until you’re satisfied with the answers you receive. Take notes.
5. Tenacity. As a loved one’s advocate, you must have their best interests at heart and take the job seriously. When caregiving knocks you off your feet, get back up. Resilience is key.
An elder law attorney can be a valuable resource to help you and your loved ones in need.
Reference: AARP (November 1, 2016) “How to Be an Effective Advocate for Aging Parents”

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Planning Caregiving for Seniors / York, PA

CaregivingThere are a number of reasons that conflicts occur when multiple family members are involved in caregiving. Hopefully, there is a common goal of meeting a senior’s physical, emotional and spiritual needs in a dignified manner and within a safe environment. How to meet this goal is where the situation can quickly deteriorate. Each family member will approach a caregiving situation with a unique viewpoint, based on personal beliefs and experience, past and present roles within the family, and current life situation. Even families who have always had strong relationships can experience tension when faced with the responsibilities of caregiving.

A common issue is the unwillingness of siblings to “step up to the plate” and make a contribution to the caregiving tasks.

The (Carlisle, PA) Sentinel’s recent article, titled "Elder Care: Keeping family conflict to minimum," explains that even though no one can be forced to participate as a caregiver, there are some ways to approach the situation that may yield more positive results.

First, you should make sure that the whole family has a solid understanding about the care needs of the individual, as some seniors may tell a different story, depending on which relative they have spoken to last. The original suggests soliciting objective information from third parties, like a physician, close friend, or a neighbor, in order to have more information to show the need for care.

Get everyone involved and let them take some ownership in the issue: allow all of the family members to offer ideas on care needs and carefully consider each suggestion. Maybe your brother’s suggestion isn’t exactly how the primary caregiver would handle that particular need, but if it’s sound and safe alternative—and your brother is willing to participate—it’s worth a try.

In addition, it’s important to think about each member’s relationship with the one who needs care, as well as with each other. If your sister has historically been more distant to your mother than the others, asking her to spend one-on-one time with mom or perform intimate personal tasks is probably not a great idea. Maybe they can help with something a little less hands on, like helping with finances or grocery shopping.

One of the best ways to try to get some help from other family members is to make detailed requests for assistance. So rather than asking if someone can stay with the senior “once in a while,” you should ask that person to set aside a specific day and time for a regular visit. This will make the expectations clearer for everyone and reduce frustration and misunderstandings.

One final thought when enlisting the aid of others who are reticent to participate in caregiving: start small. The original article recommends finding something that allows for a positive result without a major commitment or effort. And remember to say thank you.

For more information about estate planning, please visit my estate planning website.

Reference: The (Carlisle, PA) Sentinel (November 28, 2014) "Elder Care: Keeping family conflict to minimum"

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New Study Shows Special Needs Expenses Skyrocket / York, PA

MP900407458A new study pegs the lifetime cost of caring for a child with autism at $1.4 million. For parents, there are no easy solutions. The good news: Sam is now high-functioning, and in many respects a completely normal 13-year-old. The downside: The price tag to get to this point has been massive. “Only a parent of a child with special needs can ever understand the struggles, and the financial commitment, of raising and recovering an autistic child,” says Mercier, a business owner from Winnipeg, Canada. “It’s an endless battle — and an expensive one.”

A new study in the medical journal JAMA Pediatrics reports that the total lifetime cost of supporting an individual with an ASD is $1.4 million in the U.S.—with an added intellectual disability, the total rises to $2.4 million. Reuters recently reported on this study and its findings in an article titled "Raising an Autistic Child: Coping With the Costs."

These costs typically include an ongoing mix of special education programs, medical care, and lost wages as many parents of autistic children reduce their work hours or even quit their jobs to help their child full-time. The organization Autism Speaks estimates that it now takes roughly $60,000 annually to support someone with an ASD. Such costs can be so prohibitive that many affected families will move to states that offer a better collection of services.

The original article advises parents not to automatically think they must drop out of the workforce to manage their child’s case full-time. It is the natural human instinct to want to do so. No one knows a child and his or her needs like a parent, and navigating the morass of city, state and federal services can be a full-time job. However, if a parent drops out of the workforce, just as out-of-pocket expenses start to mount up, it can become very challenging financially.

The article urges families to take a long-term view of caregiving. In some situations it might be more advantageous for mom to stay in the workforce, and then hire additional support to provide case-management services. An attorney well-versed in special needs issues can be an indispensable aid in this area.

For more information about special needs planning, please visit my estate planning website.

Reference:  Reuters (June 24, 2014)"Raising an Autistic Child: Coping With the Costs"

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