Connie Schreiner and Rick Law

Celebrating New Year’s Day after a kayak run on the Fox River, I was just about knocked to the floor when I overheard someone say, “I’ve seen some wonderful deaths.”  When I recovered from hearing this statement and recognized the sparkling eyes of the nurse who said it, I asked if I could meet with her at another time to learn about “wonderful deaths.”

Several weeks later I met up with Connie Schreiner, the effervescent and popular Director of Health Services at Provena Fox Knoll, an assisted and independent living community located along the Fox River just north of downtown Aurora, IL. 

Connie and I talked about assisted living and what a wonderful living arrangement it is for residents who no longer feel safe living at home alone or need assistance with medication management or help with routine tasks that, with age or illness, have become more difficult to manage.  Connie and I both liked the idea of being provided three meals a day as well—we considered residency ourselves!

“It is very difficult for a resident to leave the comfort and familiarity of his or her home and make a new home somewhere else.  Therefore, we make every effort to ensure that they can live the rest of their lives at Provena Fox Knoll,” said Connie.  “When our independent living residents can no longer live independently, they can transition to assisted living.  When illness causes a resident’s health to decline, or a resident is diagnosed with a terminal illness, the opportunity exists to contract with palliative or hospice care.  It is not uncommon for a resident to tell us that they don’t want to go to the hospital again.”  One resident said to Connie, “You know, I’m 95 years old and don’t want to see the inside of a hospital again.  If my time comes to be with the Lord, then let it be.”

As Director of Health Services, Connie provides residents and family members with the basics of hospice care, specifically:

• That it is important for the resident and the family be comfortable and in agreement with the decision to elect hospice care.
• That the resident’s primary physician must agree and write an order for hospice care. 
• That certain criteria must be met to qualify for hospice.

Connie then recommends they contact Provena Home Care-Hospice for an assessment and the details of care. 

Hospice provides lavish support for both the ill person and his or her loved ones.  Hospice care includes nurses, nurse aides, social workers, and pastoral care—all who work alongside the family and the Provena Fox Knoll staff in support of the resident.  In addition to frequent visits, a hospice nurse is always on call to ensure needed care and comforts are afforded the resident—not only managing physical well-being through medication, but also caring for emotional and spiritual needs. “We currently have a resident on hospice, and her best medicine is a visit from pet therapy.  Provena Fox Knoll is blessed to have three women who visit with their dogs.  It is truly heartwarming to see the excitement on our residents’ faces when these dogs visit,” Schreiner remarked.

Provena Fox Knoll is licensed by the Illinois Department of Public Health (IDPH), as are all assisted living communities.  Schreiner explained that IDPH limits the scope of nursing care that she and her staff can provide.  However, hospice nurses are authorized to provide care that is beyond the scope of their assisted living licensure.  Additionally, most of the hospice costs are covered by Medicare.  

Connie remarked, “The three essential elements to provide a wonderful death are the collaborative efforts of the family, the assisted living staff, and the hospice personnel—which then allows our residents to stay in their home environment with friends and familiar caregivers and peacefully live out the end of their lives.  I have been part of several end-of-life decisions with our residents.  I am richer for it and tremendously grateful to have shared with the resident and his or her family, some wonderful deaths.”

More information on Provena Fox Knoll can be accessed at www.provena.org/foxknoll and Provena Home Care at www.provena.org/homecare.

Artwork by Rhiannon Richardson of the Neighborhood Center of the Arts

What do you do if you’re an elderly parent still caring for a disabled child who can’t care for him or herself?  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:

• 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.

It is the job of the elder law and special needs attorney to assist families like this in developing proper planning so that we can help the parents to create a better way to manage both money and care after they are gone.

A TLC Trust is designed to work in partnership with any public benefits such as Supplemental Security Income and Medicaid.  It is a way for parents to leave money for the needs of their child beyond what public benefits would pay.  A TLC Trust can provide supplemental care for recreation, social activities, pets, special therapies, entertainment, and even vacation opportunities for a child by the use of trust money.  A TLC Trust can also purchase professional care management, which can enhance not only the dignity, but the quality of life of a disabled child. The TLC Trust is a far more loving and caring solution to the challenge of providing for a child with special needs.

Please don’t disinherit your child with a disability; contact an elder law attorney who can assist you in designing a custom plan to meet the very special needs of your child, so that he or she can be given tender loving care after you have passed away.

Photo by Lisa Wiltse of the Sydney Morning Herald

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 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.

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 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 ElderLaw 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.

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.

Often we get a phone call from the child or spouse caretaker because the person in need of care isn’t ready to admit yet that they need help.  We can’t force a parent to get assistance, but we can be the “voice of authority,” to tell them when it’s time to start letting go and facing reality.  It is our job as elder law attorneys to help our senior clients–and those who love them–make tough end-of-life and long-term care decisions.  We walk alongside of them and serve as a guide through the elder care journey.

Nationwide evidence tells us that the long-term care burden overwhelmingly falls on the women of the family.  In their youth men are generally physically stronger than women, but as they age they decline more quickly.  Compounding the problem, men often cling to a machismo that causes them to deny their own mortality and to under-appreciate the catastrophic burden that old age frailty will place on their wives or children.  It is not uncommon, when talking to a man about the possibility of old age decline, to have him say things such as:

• “My dad died at sixty of a heart attack–I’m sure I’m not going to live any longer than that.”
• “I won’t rust out, I’ll burn out.”
• “Before I’ll go to a nursing home I’ll put the muzzle of a gun in my mouth!”
• “I’m gonna keep going until one day I just drop in the harness.”

It seems to be a natural part of being male to assume that bad things happen to other people, not to yourself.  The result of this attitude is that the women of the family are faced with caring for more and more frail men who have either refused to purchase long-term care insurance, or refused to modify their lifestyles to minimize the possibility of chronic illness.  Women are forced to exhaust their own financial and physical resources to care for their men.  By the time the first spouse dies, the caregiver spouse is often depleted both physically and financially.  She has no reserves as she faces her own long-term care crisis.

At Law ElderLaw we not only strive to serve our client, we also strive to help rescue the embattled caregiver.  Survivor spouse preservation is one of our key goals when working with a couple who are faced with nursing home challenges.

We recognize the contribution of the women who carry the burden of their own parents, their husbands’ frail parents, and/or their own husbands.  We serve as allies to the heroic caregiver.  We understand their burdens, confusion, anger, hopelessness, sense of injustice, fear, and loneliness.  We come alongside them, so that they can find a measure of peace of mind, a caring and listening counselor, and possible financial and long-term care assistance by calling us here at Law ElderLaw.