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.