9 Steps to Peace of Mind for the Alzheimer’s Family

By Peter C. Sisson, Attorney at Law

Memory loss is very frightening.

Perhaps it’s so frightening because people naturally begin to wonder: “Could it be Alzheimer’s?” And when the discussion turns to this dreadful disease, many people feel a sense of panic. “What are we going to do?” “Who’s going to take care of Dad?” or “Why doesn’t she recognize her own son?” And so on.

If anyone in your family is having “memory problems” significant enough that you have taken note, have quietly discussed them or are worried about them, then the following information could mean the difference between having a sudden, costly disaster on your hands, or being prepared and able to manage the problem.

Alzheimer’s warning signs are often downplayed. Nobody even wants to say the word, “Alzheimer’s.” It’s a cruel disease. Not only does it rob its victims of their memory, but if they live long enough, it robs them of their life. And ultimately, Alzheimer’s can also rob the entire family of their finances.

And even with all of that, in many ways it’s often harder on the care givers. That’s why so many people live in fear of it. . . And it’s also why so many victims, or their families, try to hide it – or worse yet, ignore it.

FACT ABOUT MEMORY LOSS: Age is Not Always a Factor

According to a recent study by Duke University, the age of onset of Alzheimer’s disease is generally considered the time at which an individual begins to suffer short-term memory loss or disorientation in a manner serious enough to interfere with daily activities.

The genomic study (a study of the human genes) found that the average age at onset for individuals in the study with Alzheimer’s disease was 72.8 years old.

Bu it can start much earlier for many people. For example, many people assume that Alzheimer’s disease and other forms of dementia only affect older people. But according to Alzheimer’s International, about 1 person in every 1000 develops dementia-related diseases below the age of 65, also known as “early onset dementia.”

Needless to say, the truth of the matter is, we see people every week whose lives have been turned upside down by this awful disease. . . And sometimes they don’t come in until it’s already too late.

We all hope and pray for a cure for this disease. And in the meantime, we see the exhausted face of a care giver, a husband or a wife or a child who’s tried, who’s struggled and who can no longer care for this wonderful person – someone whom means so much to them. . . But who no longer recognizes them.

Caring for a Spouse Who Has Alzheimer’s

Your marriage vows said, “For better or worse.” You took those words seriously when you married your spouse, and you still do. But now, sometimes it may feel like this awful disease is killing both of you . . . Or even your marriage, in some cases. The strain of memory loss can be felt in so many different ways.

Do you remember how you felt when your loved one began to forget things. . . or perhaps was even diagnosed with Alzheimer’s disease? You think back to when you and your spouse were courting and your whole life was laid in front of you: your dreams, the children, the hard work and retirement.

That’s when you’d finally get to spend all that time together.

But then something went wrong. Something went seriously wrong. Something happened that you hadn’t planned for. Your loved one began to forget things. At first it didn’t seem like such a big deal. But as time marched on, the symptoms got worse.

Now, looking back, you can go to the checkbook register and probably see where things started to go wrong. Gradually, the handwriting changed, and the numbers became more garbled. Both of you know something was wrong, but neither of you knew what was happening. And you didn’t know how to talk about it – at least, not at first. It seemed like, if you could just ignore it, maybe it would go away.

But it didn’t.

Perhaps it’s not a spouse you’re worried about . . . Maybe it’s a parent you’re concerned about. An aging parent can go from “mild” to serious memory problems in no time, taking the family by complete surprise. Many times, the family is in denial, hoping against hope.

FACT ABOUT MEMORY LOSS: Things Can Happen Suddenly and Quickly

In an article entitled “Memory” by Anderson D. Smith, appearing in The Encyclopedia of Gerontology (1996), Alzheimer’s is a degenerative disease. So, once the damage begins it will continue until that person passes away. There is no cure, although some research found methods that might be useful in reducing the disorder or slowing down its effects.

When a person is diagnosed with possible Alzheimer’s, that person is said to have “dementia of the Alzheimer’s type.” But when a person is officially diagnosed with “Alzheimer’s, ”then the disease is already very far along. Once such a diagnosis has been made, the person generally lives, on average, another 3 to 9 years.

Whether it’s your spouse or parent, there are many financial and legal decisions best made before there is a formal Alzheimer’s diagnosis – before the memory loss becomes severe. (However, it’s never too late. There are also important things you can do if you have a spouse or parent already suffering from memory loss or Alzheimer’s, and if you are already struggling with care giving or financial burdens.)

At any stage, there are steps that should be taken now to avoid having your personal and family assets ravaged by medical and long-term care and other out-of-control costs.

At Last, There’s Hope

Of course, the unfortunate truth is the fact that there is no cure. Doctors can’t cure Alzheimer’s disease yet. No one can offer you that. But what I can offer you are the steps you can take right now if your loved one suffers form memory loss in order to achieve peace of mind.

You can learn to cope. You can learn about memory loss and Alzheimer’s disease. You can learn how to take control of your life again. You can learn the steps to take to care for your loved one . . . and with that, you’ll begin to learn how to take care of yourself.

As a care giver, you’re likely exhausted. You need some rest. Imagine how good it would feel to be able to sleep for even six or seven uninterrupted hours. That doesn’t have to be a pipe dream. I’ll explain all this and more.

It Feels Like You Died Twice

Some people say that having Alzheimer’s is like dying twice.

FACT ABOUT MEMORY LOSS: It’s a Slow Grief: From Denial to Peace of Mind

According to C.J. Farran, in Loss, Mourning, and Suffering: The On-going Funeral of Dementia, it is common for family members and particularly the care giver to experience feelings of loss. If you have a loved one with the disease, you will experience both your own loss and loss for your family member.

“As the disease progresses,” according to the author, “you will notice fluctuations in your feelings.” As the person loses more of his or her abilities, the realization of seeing the person depart – not through death, but through the gradual loss of memory, thinking abilities and changes in personality – may become painful.

Your feeling of loss will likely involve the natural phases of grieving, such as denial, anger, guilt, physical symptoms and eventually acceptance.

In her work on bereavement, Elizabeth Kubler-Ross said that we go through several stages of grief, from denial (when we can’t face the truth), to anger (where you might become angry at the disease itself or at “God”), to bargaining, (where you try to postpone the inevitable), to depression (where you feel profoundly sad), to acceptance (where you come to terms with the reality of the situation) and ultimately to peace of mind. But what a long journey it is to get to peace of mind.

When your spouse has Alzheimer’s, it’s hard to get away from the mourning. You can’t reach a resolution because you can’t ever get away from it. Your loved one is still there, slowly wasting away. Bad day after bad day after bad day, followed by an occasional good day with the hope that things are better, only to have that hope dashed by another string of bad days.

Even though that person may still be living and otherwise in good health, the impact on those around that person is quite the same as grieving over the loss of a loved one. In fact, some people say that the affliction is not only robbing a person’s memory but also feels like it’s robbing that person of their soul, too.

Do You Put on Your Happy Face?

We’ve all had it happen. It’s been a bad day, the kids are screaming, the dog gets out and terrorizes the neighborhood, the washing machine overflows, all heck is breaking loose and the phone rings. . . And it’s your friend on the other end, asking, “How’s it going?” You put on your happy face, smile and say . . .

“Just fine.”

Alzheimer’s care givers are famous for wearing their happy faces.

They may have been struggling with the same repetitive question, or pacing or wandering for the last hour. But when someone comes over, or talks to them on the phone, they say everything is “just fine.” And the happy face continues for a while – maybe a month or even years – until you just can’t bear it any longer.

Let’s put aside your “happy face” and talk about Alzheimer’s Disease, what it is and how you can take control of your life again. We’ve all heard the saying, “Knowledge is power.” That certainly is true when trying to cope with memory loss and Alzheimer’s Disease. But there’s more to it than that.

It is important to be aware of everything there is to know about the disease itself – about caring for your loved one, and about providing that care without emotionally, physically or financially destroying yourself or your family. You need to know about the financial and legal matters you must address.

But if you don’t even know the right questions to ask of doctors, accountants and lawyers, how can you possibly get the right answers? Here’s how to cope with the memory loss and get to peace of mind.

Step 1: Become Informed

There are hundreds of good books and resources on memory loss and Alzheimer’s Disease. Granted, that alone doesn’t help you. You don’t have the time or the energy to become an expert. Nonetheless, it is important that you do take at least a bit of time to get an understanding of what is going on with your loved one and yourself.

A very good resource is a book entitled The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss In Later Life. The book was revised in April of 2001. It contains information about Alzheimer’s and other dementias; tips for dealing with problems that arise in your day-to-day life, such as meals, personal cleanliness and safety; and information on dealing with the patient’s mood swings, suspicions and even paranoia.

Fortunately, the book is widely available and can be obtained at most bookstores. Sisson & Sisson, The Elder Law Firm, is also a great resource for information about Alzheimer’s Disease and other forms of dementia. Call our office to see if we are currently presenting a workshop on this topic. This is a free resource for you – but you’ve got to call and access it.

Step 2: Contact the National Alzheimer’s Association

There are a number of resources available to families who have a loved one suffering from Alzheimer’s, and perhaps the best place to start to find these resources is through the Alzheimer’s Association. If you have access to the Internet, two great websites are the Alzheimer’s Disease Education and Referral Center.

Step 3: Consider Joining a Support Group

Not everyone likes to get together with other folks and discuss what’s going on in their lives and with their loved ones. And if that’s something that does not appeal to you, that’s perfectly understandable. But at the same time, where Alzheimer’s disease is concerned, it may be beneficial to have the support of others who are going through what you and your family are experiencing.

Not only can you begin to feel a sense of community and to learn the types of resources that are available, but you also can gain a better understanding that the concerns, fears, and anger that you may be experiencing are quite normal. If this sounds like an avenue worth pursuing, then you can contact the Alzheimer’s Association for a list of support groups, when and where they meet.

Step 4: Discuss the Situation and Your Feelings

Don’t hesitate to talk openly about what your family is experiencing. Of course, this can be a particularly difficult Step to take. But where memory loss is concerned, it’s very important to have these discussions while you can.

There are a couple of excellent resources to help. The first is called Caring Conversations and the other is entitled Five Wishes. These are healthcare powers of attorney which will help you to discuss difficult life and death issues at a time when that discussion can still be meaningful. Again, you can access these forms via the internet. Go to A Better Way Coalition and download the Advance Directives.

Also, talk to your family members or a close friend. Tell them what is happening. They probably noticed some of the changes, but are waiting for you to let them know it is okay to talk about it.

Step 5: Schedule a Doctor’s Appointment

There are a number of reasons why someone may be experiencing memory loss. Not all of them are related to Alzheimer’s. Typically, a lessening of mental function is called “dementia.” There can be any number of causes for this. Some can be as simple as a vitamin deficiency; others can be related to thyroid problems or depression.

Still others can be Alzheimer’s or other related dementias. That’s why it’s so very important, when someone is experiencing memory loss, to have a medical examination. Quite possibly, the dementia or disease is treatable, and even if it is Alzheimer’s there are drugs which, in many cases, can slow down the progress of the disease.

Of course the place to start would be with your family physician or an internist. From there, depending upon the results, the doctor may suggest that you see a neurologist, or someone who specializes in Alzheimer’s and memory loss as well as other related diseases.

Step 6: Talk to Your Doctor about Other Matters

Ask your doctor if he or she is comfortable with your health care treatment wishes and end-of-life matters. Of course, talking about such matters is not pleasant. But the time to do so is now before it’s too late.

Some physicians may not be totally comfortable with the way you and your loved ones would want to handle things as the disease progresses. Or they may be in total agreement with your wishes. But in either case, the time to find that out is now, when the conversation can be held in a non-emergency type setting, and where hopefully everyone can participate.

Step 7: Meet With an Experienced, Certified Elder Law Attorney

This is an extremely important step. It’s critical that you and your loved ones have a chance to put the proper planning in place while there is still time. The simple fact is that none of us knows how much time we have on this earth. When Alzheimer’s or memory loss is introduced into the situation, it becomes more complicated.

That’s because you may “know” exactly what your spouse or loved one would want. But if those wishes have not somehow been put down in writing, then the law may not recognize your supposed “knowledge.” In legal-speak, it’s often considered hearsay and without any legal merit.

Instead, the law requires that the person who has Alzheimer’s or memory loss must have the legal capacity to take – i.e., the ability to understand – the planning steps. For that reason, I can never emphasize enough the fact that it’s critically important these steps be taken right now. The more you wait, the greater the risk becomes.

Schedule an appointment with an experienced Certified Elder Law attorney – that is, a lawyer specifically devoted to elder law. At the meeting, the elder law attorney will guide you and your loved ones in a discussion about what, if any, steps that need to be taken. See the National Elder Law Foundation for information about what it takes to be board certified in Elder Law. We at the Elder Law Group of Ahrens DeAngeli Law Group are ready to help. If you would like to schedule a consultation, we welcome the opportunity to meet with you.

What You Don’t Know CAN Hurt You!

For instance, one of the first items to consider is a power of attorney. Basically, there are two different types of powers of attorney. A power of attorney gives you the legal authority to make decisions for your loved one if he or she cannot make decisions: there are powers of attorney for both financial and healthcare issues.

The power of attorney for healthcare allows you to make decisions concerning doctors, hospitals, medication and so on. Even though you may have been married for 40 or 50 years, if you do not have these powers of attorney in place the law presumes that you must have meant not to do so.

From my experience, that’s not why people don’t have powers of attorney in place. Oftentimes, people simply don’t know that they need them. It comes as a shock to them when I’m counseling someone who’s been married for decades, and I tell them that , since this was never put in writing, you have no legal authority to make decisions for your spouse. This can be easily handled (assuming that your loved one still has the legal capacity to do so) with a power of attorney.

The other type of power of attorney is one for finances. This can cover a whole host of situations, form handling real estate, to dealing with bank accounts, to paying taxes, to almost anything you can think of from a financial standpoint. Once again, this can be fairly easily handled, so long as your loved one has the legal capacity to make these decisions.

Having the appropriate powers of attorney in place is a critical first step. Then, depending upon the specific situation, other legal issues related to your condition may arise. After executing durable powers of attorney for finances, healthcare and a healthcare treatment directive (i.e., a living will), you and your family should consider other legal planning.

You should consider Alzheimer’s estate planning to help you understand how to position your resources to best serve your needs and those of the persons dear to you. This kind of planning is highly individualized. Some of the issues you and your family will want to discuss with an experienced elder law attorney include:

Revising Wills and Trusts: Whenever a major life event occurs, attorneys recommend that you review your wills and trusts. Your current legal documents may no longer be appropriate. You may want to make changes that reflect your new circumstances. Memory loss or a diagnosis of Alzheimer’s disease is a major life event worthy of this kind of legal review.

Changing Property Titles: The way in which your real estate and other property are titled is critically important. In some cases, if these things aren’t handled properly now, then dealing with the property later could require you going to court. Reviewing property titles is also an important part of planning to ensure that you and your family members are protected if you or your loved one ever needs long term care in a nursing home.

Strategies for Financial or Other Gifts: Consulting a knowledgeable attorney is especially important before you transfer any property or make gifts. The attorney can help you review your financial situation to determine whether a gifting program or other financial strategy is appropriate for your situation. Making gifts can protect your family and help save your estate. But acting improperly can have severe legal consequences, and can even make you ineligible for government benefits.

Long Term Care Strategies: In addition, you may want to consider the benefits programs that are available. For instance, Medicaid, which is a federally funded program administered by the states, may pay some health care costs (assistance with bathing, light housekeeping, cooking and laundry), while an eligible patient remains at home, as well as nursing home costs for qualified individuals.

Government Benefits . . . The Right Way!

Speaking of Medicaid, you may not want to think about using government benefits. But most families are financially unprepared to pay for health care costs for an Alzheimer’s patient. Over a patient’s lifetime, those costs have been shown to average over $174,000!

FACT ABOUT MEMORY LOSS: Memory Loss is Not Cheap

According to The American Geriatric Society, “People with Alzheimer’s face a host of difficult decisions. For many, nursing home care – a likely necessity – can cost anywhere form $24,000 to $95,000 a year.

Published in the Journal of the American Geriatrics Society, a study showed that the average cost of caring for an Alzheimer’s patient for six months is nearly $30,000. While cost of patients with mild symptoms was averaging $20,000, the most severe forms of the disease resulted in costs as high as $35,000.

These figures do not include lost days of work by care givers and the hours per week they spend on unpaid care for their loved ones. “As Alzheimer’s disease progresses, the costs to society in terms of direct health care costs and loss of productivity of care givers are astronomical,” says Gary Small, M.D., from UCLA.

Even if your loved one enters a nursing home down the road, as a “private pay” resident, the family may eventually exhaust personal funds and need Medicaid assistance. And even if you can manage the costs, you may still worry about depleting your assets and impoverishing your family.

In fact, you may already share the frequently expressed fear among potential Medicaid applicants, such as: “I’m afraid I’m going to lose everything.” However, with legal assistance and proper planning, you may be able to protect your family’s security while qualifying for government benefits.

Again, it’s critical that you consult an experienced elder law attorney to help you with this planning process. It’s like asking a Certified Public Accountant (CPA) to prepare your income tax forms to be sure that you are taking all the legal deductions the tax code makes available. Don’t apply for benefits before making sure you’ve taken all the steps possible to protect yourself and your family.

It’s your responsibility as the spouse or family leader to make yourself fully informed – to get smart – about these things.

Step 8: Call Us Today For Your Initial Consultation

Whether you want to put into place an action plan to protect yourself and your loved ones, or you simply want to learn what steps you and your family, specifically, can take, please call us at (208) 639-7799.

During that initial phone conversation, we’ll ask you some questions about your situation, about the symptoms, about the memory loss, about your family and about any planning that you may have already done. And then we’ll give you guidance as to the appropriate steps to take from here.

If, after discussing the situation, we all agree an appointment would be helpful, then we’ll schedule it. Or if it looks like planning is not necessary at this time, we’ll tell you that, too.

Step 9: Relax

After you’ve taken and completed the steps discussed in this letter, you’ll have a plan to safeguard yourself and your family. Now take the time to enjoy each precious moment you have with your loved ones. I sincerely hope that this information will motivate you to act in your own best interests and by doing so, find the peace of mind that comes from knowing that you are taking positive steps to address your situation as best you can.

CONCLUSION

If your loved one suffers from memory loss or Alzheimer’s disease, their ability to make financial and health care decisions may decrease over time. Making informed decisions about personal business and healthcare may become more difficulty or even impossible. The more you wait, the greater the risk becomes.

The time to act is now. With proper planning, you will ensure that things are handled according to your family’s wishes, and that you’ve taken the best steps possible to protect your loved ones and to protect your family’s financial security. If you’d like the guidance of a law firm that has helped numerous Idaho families successfully deal with these issues, please contact The Elder Law Group of Ahrens DeAngeli Law Group.