Norridge HealthCare Facility recommended that I talk with you folks. Well, after our second meeting with Jonathan and many phone calls and questions, we returned in about November of 2008 and contracted with your firm for assistance. I put off as long as I possibly could placing Auntie in a nursing home, and then only because our sixth caregiver was returning to Poland and Auntie had exhausted all her life’s savings in addition to what I paid for from my savings. I have MS (Multiple Sclerosis) and it was difficult to care for my aunt and mom, so I had to quit my job two years ago. But this letter is not about me—it is about my Auntie Florence. Auntie went to live at Norridge HealthCare Facility on June 18, 2009 and sadly, she passed away on February 9, 2010. We were very satisfied with this facility and its staff. During this time I was assigned to Gina Salamone as our attorney at Law Elder Law. I know I drove Gina and Sean (and everyone who answered the phone) nuts with all my calls and my frantic questions and nervousness. I do believe Gina and I have a bond, though, and I trusted her with my precious family member and for that I am very grateful to her. I have recommended people to your firm and I have even gone as far as handing out Jonathan’s and Gina’s phone numbers—and advised these people to get all their ducks in a row now rather than wait. I have attached a picture of Auntie Florence and I wish you to express my family’s sincere appreciation for all the thousand times I called, ranted, cried, and went nuts—but your staff never gave up, not once. Gina even went to the DHS regional manager on our behalf. Mr. Law, I really appreciate everything your entire staff did for Auntie, and I promise you I will always recommend people who need this type of help to your firm. God bless everyone at Law Elder Law in Aurora, Illinois. Thank you all again on behalf of Auntie Florence and the Buscemi family—we truly thank you. Please enjoy the catered lunch on Thursday that my family is having delivered to your office. Jo BuscemiOur Law Elder Law motto is “Serving Seniors and Those Who Love Them.” Jo Buscemi, niece of Raffaella Calabrese (more affectionately known as “Auntie Florence”), shared these words with me and asked me to share them with you: Dear Mr. Law, Around October 2008 my mother and I had our first meeting with Mr. Jonathan Johnson in regards to my Aunt Raffaella Calabrese (“Auntie Florence”). My aunt had suffered for years with dementia and had various (six in all) live-in caregivers. I was told by many to keep my aunt in familiar surroundings for as long as possible and I being her power of attorney, I did exactly that. I came to your Aurora office one day and had our initial meeting with Jonathan. I was very apprehensive.
Recently I was sitting down with some very good friends when a cell phone rang. A look of worry shot across my friend’s brow as he looked at me and apologized, “I’ve got to take this call… my Dad’s missing! He’s gone wandering…” I could not help but listen as he spoke to relatives several hundred miles away. He murmured hopefully, “Maybe they’ll bring Dad to the shelter.” After saying goodbye he looked at me with pain across his face and said, “Nobody knows where he is. He’s got Alzheimer’s, and my mom can’t keep him in the house anymore.” About 30 minutes later he got the call that Dad had been found and everything was okay—this time. As I sat there, I wondered if my friend knew of some of the resources available to help keep track of vulnerable or wandering loved ones—and it occurred to me that our readers may also be unaware of some of these resources. One of the reasons that having a wandering relative afflicted with dementia is so frightening is that they don’t act (or react) in the same way that a typical lost person would. A helpful page at Ask.com explains how wanderers with dementia will not cry out for help or respond to your calls to them, nor will they leave many physical clues to lead you to them. What a wanderer is likely to do is go to an old place of residence or a favorite location. Luckily, there are resources out there to help with wandering relatives—so you don’t have to just wait nervously by the phone. One of these resources is the Medic-Alert Safe-Return program detailed on the Alzheimer’s Association website. This program provides 24-hour nationwide assistance and supplies members with an individual emblem engraved with the program’s emergency response number. If you want to try to stop wandering at its source, the Mayo Clinic has a page detailing some of the reasons why elderly relatives may wander, and includes some suggestions on how you might prevent it. But remember—no matter how much you do, Mom or Dad may still wander. Don’t blame yourself if it happens! The best thing to do is be prepared for the occasions when the wandering does happen. Use the resources provided above, and keep other relatives and caregivers informed.
How do you find and retain a great caregiver for a loved one with Alzheimer’s Disease? Many of our clients and client families struggle with disabilities and/or long-term diseases. The majority are impacted by the progressive dementia caused by Alzheimer’s Disease. Alzheimer’s often causes people to lose what my mother, Gloria, calls our “thin veneer of civilization.” I spoke with Mike Rohan of All-Trust Home Care to seek answers as to how our AD clients can stop the problem of caregivers coming and going. Mike’s firm provides professional caregivers in the home environment, as well as assisted living and nursing home situations. He shared with me that his company used to have a constant problem in staffing for Alzheimer’s clients; caregivers would often quit or demand reassignment after only a week or two. He said, “People with AD can present challenging behaviors, such as screaming, repetitive questions, paranoia, non-cooperation, and even violent aggression. Very few caregivers have been trained in how to deal positively with these challenges.” Mike decided to seek out a solution that would serve both his employees and the All-Trust clients. He signed up for a program offered through the Alzheimer’s Association called the “Best Friends Approach to Dementia.” Mike has also attended the “Train the Trainer” classes for the best friends approach. After completing the program, Mike began to teach his firm’s caregivers how to implement the Alzheimer’s care ideas included in the best friends approach. The results have been nothing short of revolutionary. It has worked out so well, that now All-Trust offers a training class every other Friday at their Westchester, Illinois office. The classes are open to their employees, client family members, and when there is space, members of the community. Caregivers have responded very positively to the training. And they now have the tools that need to communicate effectively with their clients, despite the barriers of the clients’ dementia-related behaviors. The quality of life for both the caregivers and care receivers has been remarkably improved. In fact, Mike smiled broadly when he stated, “Before we implemented the best friends approach training, it was difficult to retain staff. But now I cannot think of anyone who has quit.” For more information about the Best Friends Approach to Alzheimer’s Care, go to www.bestfriendsapproach.com/Models.html For information about how your family or organization can benefit from the Alzheimer’s Association training, see their website. In addition, I’m sure that Mike would be glad to share with you some of his insights and experiences as he has implemented the program at his firm in Westchester, Illinois. Their contact information is: Mike Rohan All-Trust Home Care 10526 West Cermak Road – Suite 114 Westchester, IL 60153 Phone: 708-492-1286 E-mail: MikeR@AllTrustHomeCare.com
The Alzheimer’s Project.” This is an exciting joint project of the Alzheimer’s Association and HBO which is designed to give us all new insight and hope that we can push back against Alzheimer’s Disease (AD). For those of us in Chicago the documentary was even more personal, in that it included a live interview with Dr. David Bennett of Chicago’s own Rush Alzheimer’s Disease Center. The medical staff and researchers at Rush Hospital are one of the premier teams investigating Alzheimer’s Disease. Dr. Bennett is the director of a large group study entitled “The Religious Order Project.” “The Alzheimer’s Project” focused on some individuals with early-onset Alzheimer’s, which affects people who are younger than 65. We learned several new and startling things. Most people are aware that Alzheimer’s Disease is a brain disease wherein brain function is progressively destroyed by the emergence of plaques and tangles. Surprisingly, there are individuals whose autopsy reveals the presence of the AD plaques and tangles, but the individual did not exhibit memory loss during their lives—some people continue to function in a normal manner. This phenomenon is not yet understood but is currently being referred to as “cognitive reserve.” The presence of this cognitive reserve gives researchers a hopeful avenue of new investigation. In addition, part of the question-and-answer portion of the program focused on current drug therapies. Today there is not a drug which cures or delays the disease. Our current drug therapies are limited to enhancing the remaining brain function during the continuing degenerative progression of the Alzheimer’s Disease. Dr. Bennett told the audience in Chicago that there are numerous medical research and drug trials going on right now which demonstrate new possibilities to not only delay but possibly create a vaccine against Alzheimer’s Disease. There is a high probability that medical science will have these enhanced weapons available to the public within the next five to ten years. This is great news of a brighter view of aging for millions of people who would otherwise face the prospect of AD. If you missed this wonderful program, you can watch each of the documentary films individually online, by streaming them to your computer through HBO’s website. I highly recommend that you click here to see all of the resources that you can download and stream from the HBO program entitled “The Alzheimer’s Project.”Last weekend I was blessed to attend the Chicago preview showing of the HBO special documentary entitled “
Last week I wrote about “empty nesters” who have never really had an empty nest. These are parents of children with disabilities such as autism, cerebral palsy, hearing loss, mental retardation, vision impairment, muscular dystrophy, genetic and chromosomal disorders, Down’s syndrome, and fetal alcohol syndrome, to name just a few. Some disabilities are apparent at birth, and others are caused by accidents or manifest themselves as mental illness later in life, but the end result is the same: The child is being cared for by a loving parent who worries about who will provide care for that child once the parent is gone. The most common advice of the attorney who does not practice in the area of special needs trust planning (or what we prefer to call Tender Loving Care (TLC) Trusts) has been for the parent to disinherit the child. Disinherit means to make sure you leave that disabled child with absolutely no allocation of money directly. This gives the simplistic idea that one should just leave extra money to one of the other children who will provide care for the disabled child and money management. Even in the best of families, this is usually a disastrous idea for the following reasons:What do you do if you’re an elderly parent still caring for a disabled child who can’t care for him or herself?
- It’s extremely difficult for an individual who receives extra money not to comingle that money with their own, and eventually treat it as their own. That money would become available in the event that the healthy child becomes divorced or is otherwise subject to loss to a creditor.
- In many families the dynamic is such that the healthy children have some anger or resentment toward the disabled child because that sibling got more attention. Thus, healthy children may not want the role of caregiver and banker for their disabled sibling.
- And most unfairly, leaving money to one child for disbursement to another child puts a target on the back of the healthy child, in that all complaints and concerns about money will be directed to that individual.
primary caregiver for a child who is chronically disabled. Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent. This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age. But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents. In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well. This raises new challenges for those parents and their children. This type of disability is really quite common. “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are in evidence long before a child reaches the age of 22. These disabilities will last the lifetime of the affected person. So how can a parent be assured that a disabled child will be taken care of after the parent is gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child. Check back next week to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester. Not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the
burnout. And it’s not only the absence of choices that make you feel trapped, according to Luise, but the lack of control over basic areas of your life. “You can’t control your schedule. You can’t control your loved one’s incontinence or sleeping times. You can’t control what they are going to say or what they are going to do. You lose all freedom.” When we inquired into social activities, Luise told us “I used to try to take Bob with me to concerts, because we both love music. But eventually it got to the point where it was just too much effort and he didn’t enjoy it anymore.” We asked if she could invite friends over to her house, but, she said, “It’s just so difficult. What do you say to them? And what do they say to you? It’s extremely awkward. In addition, there are times when Bob became very angry, and because I’m doing the care-giving, I’m right there for Bob to express his frustration. I didn’t want other people to see that. Remember, you can’t control anything. You lose all your freedom.” As we listened to Luise share her nine years’ experience caring for Bob at home, we could not help but admire once again all the caregivers out there. Her story served as yet another reminder of why we at Law Elder Law do what we do: provide counsel and help to those who lovingly sacrifice their wealth, health, freedom, and careers to provide loving care for a spouse, child, or parent.Recently, when friend and “founder” Luise May visited our office, Shawn Hunt and I sat down to ask about her experience as a caregiver for her Alzheimer’s–affected husband over the past nine years. Our goal was to further understand the feelings and experiences of the people our firm strives to help–those serving as caregivers for loved ones with long-term care needs. One of Luise’s strongest statements was the feeling that “you are trapped! Financially and socially, you are trapped.” As a caregiver, many choices are simply taken away from you. The only choice left is how you will respond in any given situation. Because of this, it is not unusual for many caregivers to experience
I received a phone call the other day–a call from a person who is sinking. Not from an elderly client himself or herself–but from the caregiver child. In my office “the kids” don’t play with Barbie or G.I. Joe anymore. They vary in age from 30 to 80. If mom or dad are in their 90s or over 100, it is possible to have children aged 60 to 80. A phone call to our office often begins like this: “My mom is elderly and ailing, and my siblings and I need advice on how to help her. Our folks have a decent monthly income and assets, but the nursing home costs are three times that much! Nobody made any plans for this. My parents never expected to live this long. We don’t know what to do. I can’t have them live with me. Help me, please. I don’t know what to do for them.” The call from the kids has several possible motives, and more specifically, several underlying emotions:
- Love and responsibility: to provide the best care for mom or dad with the least destruction of their assets during their lives.
- Seeking relief: the need to lift the care and cost burden off the caregiver, who may be the caller himself or another loved one.
- Fear of loss: the desire to conserve the benefits of the parental assets, either during the parents’ lives or at the time of their deaths.
- Greed: the desire to get access to the parents’ assets so the assets will not be “lost.”
- Confusion: Looking for a source of care and comfort at a time of great emotional and financial stress.
- Guilt: for not being able to do more for a needy parent, spouse, or other loved one.
- Shame: one man recently said to us, “I just can’t believe that I have to put the love of my life in a nursing home.”
- Anger: “Why did my parents not plan better?” “Why me? My siblings never help me take care of dad.” “I wish he would just die.”
- Frustration: over conflict with declining parents.
- Self-preservation: worry about how much of their own limited resources must be used to provide parental care.