Uncertain, helpless and scared

When someone visits an elder law attorney, he or she is often in the middle of a crisis. Sometimes the crisis is real. Other times it is perceived due to insufficient information (or information overload). Yes, elder law attorneys do mundane, run of the mill work, but more often than not it’s a crisis that brings the typical client to our door. More often than not, the person calling has a loved one in the hospital. Frequently the reason for the hospitalization is serious. Also frequent, the questions being asked make it clear that the caller doesn’t know what to do or where to turn for help.

Recently I found my family in this situation and found myself feeling some of the crisis our readers (and clients at the law firm) must feel. My wife’s doctor called her before the weekend and told my wife that she was very worried about some lab results. The doctor moved heaven and earth to get my wife to a specialist just after the weekend. Fortunately the specialist found my wife’s lab results normal, but the weekend was filled with significant anxiety. There was a feeling of helplessness. Not knowing what’s going on created a level of anxiety that is almost debilitating. Even if there was something I could do, I didn’t know what might be wrong or what I should be doing. I’m not a doctor. In essence, I didn’t know what I didn’t know and it created anxiety.

Many families aren’t so lucky. They have loved ones with chronic conditions that won’t go away. Their doctor or specialist can’t deliver news that it was a false alarm. Immediately, families begin scrambling with questions like

How are we going to get mom (or dad) the care they need? How are we going to pay for it? How am I going to work and take care of my loved one? Who’s going to take care of my special needs child after I’m gone?

The list goes on because every family is different. Every family has different needs and circumstances. But all of these questions come down to how the family will meet looming needs or how they will fill a looming void. Doing either of these things requires planning ahead. Focus on what you can control. It also requires enough humility to ask for help. Further, because some families haven’t planned ahead, they are experiencing chaos rather than uncertainty. As one writer said,

There’s uncertainty and then there’s chaos. With uncertainty you can step back and see the patterns and trends, assess the probabilities of certain events occurring, evaluate the risks, and capitalize on the opportunities. But with chaos you can’t. It’s just chaos.

The first step toward taking control is assessing the situation. One article for caregivers calls this taking control of the situation. What does your loved one need today? Will he or she get better and, if not, how quickly will your loved one need even more help? If you’re not equipped to make these evaluations, then hire someone who is.

Needs, in this context, are functional. If the crisis is a chronic condition, then functional limitations and needs typically increase over time (e.g., arthritis, dementia or any of a hundred other conditions). In other words, your loved one is moving from left to right on the functional limitations line shown above. How you meet those needs is where planning begins. Sometimes it can be as simple as providing assistive devices like handrails, grab bars, wheel chairs, etc. Other times it requires informal or professional caregiver assistance. Although new options are emerging almost daily, in general terms the level of care progressions looks a bit like this:

The level of care progression tracks the individual’s functional limitations. The problem is identifying the individual’s unmet needs so we can plug the gaps and minimize danger zones. Unmet needs are a catastrophe waiting to happen.

So, circling back to uncertainty and feeling helpless, …. one of the ways to combat those feelings is by getting enough information to understand what’s going on, what needs exist and how you can meet those needs (or how you can hire someone to do it for you). Meeting needs minimizes danger which begins the process of reducing chaos. In some cases, it may be simple once you start asking the right questions and getting powers of attorney, health care advance directives or special needs trusts in place. In other cases, it requires a new way of thinking. For example, if your loved one has Alzheimer’s disease, you have to stop expecting him or her to act the way you expect most people to act and enter their world. Some people call it Planet Alzheimer’s because people with dementia no longer have the ability to function in our reality. But even with all of your planning, flexibility is a must. Remember, no plan survives first contact with an enemy – the enemy here being progressing chronic disease.

Ez Elder Law can’t answer every question in a single post, but we’re on a mission, step-by-step, post-by-post, page-by-page, to tackle uncertainty. We don’t want you feeling helpless. We want your questions answered. We want you to have hope. If you have a question we haven’t answered yet, send us an email at websupport@ezelderlaw.com.

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