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Alzheimer’s Alters Family Roles

By Leonard Berg, Esq.

Alzheimer's is a disease that affects the entire family in major ways, but given that its onset is often gradual, there are opportunities to make adjustments that may reduce the turmoil. The early stages, before severe dementia intervenes, are a time to understand your loved one's wishes and to begin organizing for the more demanding caregiving that will eventually become necessary.

Mild dementia does not interfere with an individual's ability to establish advance directives, which indicate important preferences in anticipation of a time when the person will no longer be capable of speaking on their own behalf. A health care power of attorney entrusts someone with medical choices, while a property power of attorney identifies an individual empowered to make financial decisions. The client should stipulate within the health care power of attorney how aggressive life-saving efforts should be. In some states, though, that document doesn't address end-of-life care, in which case a separate "living will" should be considered.

Affording the individual an opportunity to make these deeply personal determinations is both respectful and practical. It enables them to specify whom they trust and is a chance to candidly share their views with their named "agents." Some of these discussions will be difficult, but they can spare painful soul-searching in the future, and having advance directives in place is far preferable to crisis-driven guardianship proceedings.

This is also a time to consider the possibility that long-term care will eventually be required and to organize finances for that contingency. If long-term care insurance is not already in place, Medicaid planning may be a viable option, possibly involving the establishment of trusts and the "spending down" of assets in order to establish eligibility and ensure the financial security of others.

Dealing with Dissension

If not handled carefully, this disruptive time can cause enduring pain. Adult children may be juggling care for both an aging healthy parent and the one affected by Alzheimer's. The family ecosystem, with its varied personalities, is adapting, and as roles shift between generations and siblings, there's plenty of room for conflict. If a second marriage and blended family are involved, the situation becomes even more complex.

Sometimes there are flare-ups over the sharing of workload. Sometimes there's disagreement over a course of action. It's frequently the special needs/elder law attorney who helps to frame a constructive discussion, laying out alternatives, analyzing options and discussing a division of responsibilities.

"Control and access" are common family issues, with some parties feeling that important information and decision-making aren't being shared. Advance directives can be drafted to ensure communication concerning specific issues and to establish boundaries to the agents' authority.

Changing Behaviors

Family members must prepare themselves for the likelihood that their loved one will undergo personality changes. If we validate our lives through accomplishments, then the loss of our abilities through dementia attacks our self-esteem and identity. The frustration and fear brought on by these alterations are seldom articulated. Rather, the individual begins to act out, often causing great hurt. If the individual had a "difficult" personality prior to the illness, their behavior often becomes more challenging as the disease progresses.

The family must educate itself about coping strategies, and support groups are important for both caregivers and patients. We know that care givers incur incredible stress that is damaging to their own health. They should avoid becoming isolated by identifying resources that will enable them to get out of the house so that they can attend to their own needs. They must give themselves permission to express their often conflicting emotions. Proud people often have difficulty reaching out for help, but it's important for them to realize that they're not alone.

More than Documents

Special needs attorneys have far more to offer their clients than well crafted legal documents. Their understanding of government programs and community services makes them an invaluable resource for families suddenly faced with life-changing events. They can guide spouses and adult children through the questions that will help them determine the best way to care for their loved one. And they can help to provide a measure of stability during a time of shifting roles and responsibilities.

This article appeared as a blog entry on the web site for the Special Needs Alliance. http://blog.specialneedsalliance.org/2012/11/alzheimers-alters-family-roles/