Caregivers

 If the last few years have taught us anything, it is that life is not predictable.   The economic crash seemed to come out of nowhere.  The weather appears to be totally weird and unpredictable, with tornadoes and floods occurring with fierce and dangerous intensity.

So, too, our health and physical wellbeing are not entirely predictable.  Despite our best efforts to eat healthy food and exercise regularly, we can have a car accident or suffer a bad reaction to medication and become ill or disabled.

For some of us, our financial resources and health insurance may not be enough to cover our care needs.  When that happens, we sometimes have to seek governmental assistance to provide for our healthcare.

Many of my clients had no idea they would end up depending on Supplemental Security Insurance (SSI) or Medicaid for assistance, but those progams can be a lifeline for those with disabilities and longterm care needs.

How can we plan for our loved ones and family members who are on governmental assistance programs?  How can we provide for their needs without jeopardizing their public benefits programs?

One way is to establish a special needs trust for the benefit of the person with a disability.  A special – or supplemental needs trust, as I’ll call it- is an entity established to hold assets so that those assets are available for  the needs of the person with a disability that are not provided by the governmental benefit.  The person with the disability is not the trustee, does not own the assets, and cannot control the assets, so the assets aren’t counted for purposes of qualifying for benefits.

SSI and Medicaid generally restrict the recipient of those programs from having more than about $2,000 in assets, but the assets in the trust aren’t calculated in that $2,000.  Most of the time, the trust is established by a parent or grandparent, but If the assets did not belong to the person with a disability to begin with, anyone can establish the supplemental needs trust and anyone can contribute assets to that trust.  The trust can be the recipient of gifts or inheritance.

We’ve discussed how to choose a trustee in previous blogposts,

http://bit.ly/rfPKWc  but for a supplemental needs trust I usually recommend appointing a professional trustee to manage the assets in the trust.  The intricacies of public benefits programs can be daunting for most people, so even though they charge for the management,  professionals with experience with supplemental needs trusts can save money in the long run.

So, even though life seems unpredictable, you can at least plan for some of the supplemental needs of your loved one with a disability.

 When Bridget came to visit, she wanted to take my blue and white teacups home with her.  They were shiny and pretty, and fit in her hand just perfectly.  Dick promised they would go to the mall and buy some teacups just like them.

Bridget was in the mid to late stages of Alzheimer’s disease when she and Dick first visited my office.  Dick, a wonderful, patient husband and caregiver to Bridget, was determined to be prepared for whatever legal and financial zingers might hit the couple.  Years before, after Bridget was first diagnosed with Cognitive Memory Impairment, Dick and Bridget had prepared living trusts, powers of attorneys, and healthcare directives.  They came to me to make a few changes to Dick’s living trust and financial power of attorney.   I always recommend that clients update advance directives and powers of attorney to avoid having someone decide that the documents are “stale” and, therefore, not valid.  We prepared new advance directives for Bridget and Dick.  On the day Bridget came to sign, she could not remember that the children whom she had nominated as agents were adults.  In fact, I’m really not sure she could remember who her children were.

With sadness, I told Dick that Bridget could not sign any documents that day.  We agreed to try another day, since those with dementia often have times when they are very alert, and other times when they are not.  Bridget never was able to sign her new advance directive, and soon went to stay in a wonderful memory care facility.   The health care and financial proxies she had already signed worked fine for her, and Dick was able to make her healthcare and financial decisions without any challenges.

Susan, on the other hand, had never executed advance directives for healthcare, financial powers of attorney, or any wills or trusts.  She didn’t think she needed to, since her husband made most of the financial decisions for the couple.  Her family did not push her to do any planning, since they thought it would upset her.  When I visited Susan at the nursing home after her husband died, she told me the nurses were stealing her underwear, she no longer recognized her family members, and she wondered why I was visiting her at work.   Susan swore like a sailor, and insisted that she would not sign “any g. . d. . . papers”, believing that I was trying to steal from her, too.

As a result, her family had to spend months and thousands of dollars to seek guardianship and conservatorship of Susan, a court proceeding which is expensive financially and emotionally for all involved. 

Many folks with Alzheimer’s and other dementias become paranoid and distrustful.  When they hit that stage, it is extremely difficult to get them to agree to do advance directives, financial powers of attorney, or wills.  Why would they agree to sign something that they believe allows folks to steal from them?

As an attorney, I preach that every adult needs to have an advance directive for healthcare, a financial power of attorney, and at least a basic will.   In Susan’s case, her fear of planning led to heartache and hardship for her family.   Could all of this expense and difficulty have been avoided by visiting an attorney’s office while Susan was able to plan for her and her family’s future?

As a footnote, I want to tell you all about Dick, Richard J. Farrell, whom I mentioned above.  Dick has written a book Alzheimer’s Caregiving about his life with Bridget, joys and trials of caregiving, and about his grief when Bridget died after living with Alzheimer’s for nearly 20 years.  Check out his website at www.alzheimerscaregivingbook.com to see how you can order a copy.

Sometimes bad things happen right under our noses, and we don’t want to – or can’t – see.  Elder abuse is like that – we can’t – or don’t want to admit that we see it.

June 15^th was Elder Abuse Day, a day intended to draw our attention to a problem that is often ignored. The term “elder abuse” is often in the news, but what exactly is elder abuse?

The World Health Organization defines elder abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person.”

Elder abuse is not confined to the poor.

Mary and her daughter, Nancy, were very close.  Mary was still able to make all of her financial decisions, and paid all of her bills on time each month.  Keeping a high bank balance gave Mary comfort that she would be able to access money whenever she needed it.  She was worried that she might “lose it” at some point, so she asked Nancy to become a signer on her bank account.  She and Nancy became joint owners of Mary’s bank account, although Nancy acknowledged that her mother was the real owner of that money.

My father is a pretty independent guy.  He loves to tell us that when he was young, he served as a ranch hand for a summer. I can just see him, riding horses and herding cattle.  I guess his professional career was similar to that cowboy summer.  As a high school principal, he spent a lot of his time herding kids.

Like most Baby Boomers, I have a fear of developing Alzheimer’s Disease. As an Elder Law attorney, I witness the struggles of the adult children of parents who have Alzheimer’s Disease (AD) as they try to understand what is happening to their parent and wrestle with the best way to care for their parent as the parent slowly fades away.

The Alzheimer’s Project is intended to open a dialogue about Alzheimer’s Disease, to show the disease from several perspectives – that of the person who has AD, the children and young teenagers who have relatives with the disease, the scientists and doctors struggling to find treatments and a cure, and from the caregivers.

The Memory Loss Tapes, the first episode in the documentary series airing on HBO this week, is viewed from the perspective of those who have been diagnosed with AD. Each segment shows someone in varying stages of the disease, starting with Bessie who is in the very early stages of the disease and ending with Cliff’s death from complications from the disease.

Of all the segments in the Alzheimer’s Project, I found this one the most difficult to watch. In fact, I cried all the way through. As a mother, it hurt to see all of those vulnerable children who love their grandparents unconditionally, struggle to understand why does my grandparent act this way? Why is this happening to this person that I love? If they love me, why are they acting like this?

As adults, we pretend that we understand this disease and that we are not hurt by the behavior of our loved one with AD.   However, many times the adult children and adult grandchildren of my clients tell me they cannot understand why their loved one is being so mean to them. Why is this person so angry? Why does this person hate me so much? Why can’t she remember my name?

In one segment of this episode, a grandchild tells of her grandmother had slapped her one day while the grandmother was in the nursing home.