Elder law issues can also affect those under 65. About 200,000 individuals aged less than 65 have younger-onset Alzheimer’s disease, according to Clay Jacobs, executive director of the Greater Pennsylvania Chapter of the Alzheimer’s Association.
“The need to reach everyone affected will grow significantly in the coming years,” he said.
A bipartisan effort in Congress to make these elder care services available to younger people affected by Alzheimer’s disease recently resulted in the introduction of new proposed legislation known as the “Younger-Onset Alzheimer’s Disease Act.”
Nutritional programs, supportive services, transportation, legal services, elder-abuse prevention and caregiver support have been available through the “Older Americans Act” since 1965. However, under the current law, only individuals over 60 are eligible for these kind of elder care services.
“These programs would make a huge difference in the lives of individuals living with younger-onset Alzheimer’s disease, who don’t have support services available to them,” said a Congressional hearing witness Mary Dysart Hartt of Hampden, ME, a caregiver to her husband, Mike, who has young-onset Alzheimer’s.
Another bipartisan effort in Congress affecting elder law involves the proposed “Lifespan Respite Care Act” to help communities and states provide respite care for families. This legislation would earmark $20 million for fiscal year 2020, with funding increasing by $10 million annually to reach $60 million for fiscal year 2024. The program lets full-time caregivers take a temporary break from their responsibilities of caring for aging or disabled family members.
Elder law attorneys are following this legislation in hopes that the new laws, if passed, will provide additional ways to help those afflicted with early onset Alzheimer’s disease and to ease the burdens on full-time caregivers.
Unlike a legal will, an ethical will, which is sometimes called a legacy letter, is not written by attorneys, but by individuals. They include life lessons, family stories, values, define hopes for the future for loved ones, apologies to anyone they have hurt and gratitude to those who haven’t been thanked enough. When the discussion turns to ethical wills, people often sigh and say they wish they had such a document from a parent or a grandparent. For that reason, more and more estate planning attorneys are recommending that, in addition to a traditional will, their clients consider writing an ethical will or a legacy letter.
Anyone can write a an ethical will or a legacy letter, and it can be directed to anyone.
Estate planning attorneys often suggest to parents of young children that they detail in an ethical will or legacy letter how they they want their children to be raised, if they are not there to do so, themselves.
People without children can create ethical wills to share them with the friends who have become their family. For example, there was a woman who had been placed in child protective services, because her parents were not able to care for her. She wanted to write a letter to other foster children to share her story and let them know that they too could overcome a rough start to life. There are other examples of how people approached preparing a legacy letter that your estate planning attorney can share with you.
Whoever you are, you have a story to tell. You don’t have to be a war hero or win a Nobel Prize to have a story that will be loved by your family, friends, or even strangers. Every one of us has a unique journey through life, and we all have lessons, stories and values to share.
The process of writing an ethical will can bring great peace of mind. By writing an ethical will, you’ve created a legacy that will live on, long after you are gone. For some people, writing a legacy letter to share their values fosters clarity of their values. That leads them to start living their life more intentionally.
For a regular will and an estate plan, yes, you need an experienced estate planning attorney. However, with a legacy will, you can do it on your own. Don’t worry too much about format or grammar in your legacy letter. Whether your legacy letter is elegant or rough, simple or complex, as long as it contains the truth, it will be a wonderful gift.
Tell stories to share your values; they are better than lists of what matters to you. One woman wrote a story about signing a contract for a job that she thought was clerical but turned out to be factory work. She fumed about it, but her parents explained that she had signed a contract and made a commitment. She stuck with the job, learning about integrity, persistence and diligence. After that job was completed, the employment agency sent her on great assignments, because they knew she was reliable and stuck to her word. That’s a life lesson to share.
There are some things that should be left out of a legacy letter. Criticism, judgments, regrets and family secrets need to be given serious consideration. What are you trying to accomplish with a letter that will be shared among generations? You don’t want to leave behind a legacy of destruction. If you write such a letter, read it a few times over a period of time to see, if that’s really how you want to be remembered. You can always tear it up and start over again.
Ask a trusted friend or your estate planning attorney to have a look at your legacy letter. They may see omissions that hurt the ones you love, like the woman who wrote about her two children, but devoted pages to one and not the other. An objective reader will be able to help you avoid some pitfalls.
Videos and recordings are great. However, remember that technology changes, and the phone that you record your video on may not work in five, ten, or fifty years. Include a hard copy of the letter and add hard copy family photos. Those will work, regardless of changes to technology.
Finally, consider sharing the letter with members of the family before you die. What a wonderful gift to share. This way you can expand on the stories, mend wounds, answer questions and grow closer.
When is the best time to create your legacy letter? How about now?
If you aren’t sure how to start writing a legacy letter, there are websites and books about this topic, including online templates. There are no legal requirements for a legacy will. You are free to create a document any way you want. If you need assistance, let us know. The estate planning attorneys at Galligan & Manning would be happy to share their thoughts with you and suggestions based on how others have approached creating a legacy letter.
No will. Biggest names: Prince, Aretha, Amy Winehouse and that is just a few. That means your affairs aren’t in order and your loved ones are not protected. Winehouse left an unwritten song about her finances, but she also left a $6.7 million estate. She had a brother and an ex-husband, but no direction as to who should get what. Without a will, her estate went through the probate process and was distributed to her parents. You need to have a will to name guardians of your minor children and ensure that your assets are distributed, according to your wishes.
Not setting up a trust. Celebs want their glamorous red-carpet photos all over Instagram and Facebook, but that doesn’t mean they want their personal finances to become public record. A will is a public document and a living trust keeps things private. There was more than one tragedy that followed Whitney Houston’s death. Her will named Bobbi Kristina Brown as her sole beneficiary. However, her daughter died three years later. Then her estate was tangled up with an IRS battle over the valuation of recording royalties. The bill from the IRS: $2.2 million in additional taxes. Her ex, Bobby Brown, may yet end up the heir of the Houston estate. That may not be what Whitney wanted.
A living trust keeps your estate private. It designates who is entitled to your assets, and how they are to receive them. It names trustees, and may provide tax benefits.
Not keeping the plan up to date. Life is all about change. Financial conditions, health, family relationships, divorce, marriage, birth, adoptions, estrangements: everything changes. The world-famous author Michael Crichton, author of Jurassic Park and many, many other best-sellers, was diagnosed with throat cancer, when his sixth wife was pregnant. His will was not updated. She had to sue to include the baby as an heir, and a daughter from a prior marriage opposed it. The judge ultimately ruled that the baby should inherit. However, simply updating his will would have taken care of everything, minus the resulting stress, cost and rancor.
Disabled before death. Estate planning is for the living also. You may be disabled and need help in managing your financial affairs. One out of 10 people over age 65 are diagnosed with Alzheimer’s disease, then at age 85, the rate skyrockets to one out of three. One celebrity whose dementia led to a nasty family rift was Etta James, the blues singer best known for the classic “At Last.” She had signed power of attorney over to a son from a prior marriage in 2008. Her husband of more than 40 years said that she was already suffering from dementia and was not competent to sign any legal documents. The son wanted to limit the amount of money the singer’s husband spent on her medical care. They finally settled, and her husband was named as conservator. However, he was given a limit of $350,000 for care for his wife. Etta James passed away shortly thereafter.
Celebrities are not the only ones who make enormous mistakes, when it comes to estate planning. However, they are the ones that we read about.
An estate planning attorney can advise you on creating an estate plan that fits your unique circumstances and can help you avoid those costly mistakes.