I Didn’t Think it Would Be Alzheimer’s Disease
I didn’t think it could possibly be a diagnosis of Alzheimer’s disease, I had thought it was just (pick one): depression, vitamin deficiency, reaction/side effects to medications, thyroid disease, etc. People often will mistake the signs of Alzheimer’s disease for one of many other factors that can result in similar symptoms. “I thought I was just getting older.” That unfortunately may defer going for appropriate testing to identify the actual cause of the symptoms.
Possible Symptoms of Alzheimer’s Disease
You, or your loved one affected, might become apathetic in the early stages of Alzheimer’s disease. You might lose interest in social activities, hobbies, etc. The traditional “night out” might no longer be of interest. You may appear extremely bored. Memory loss is another common symptom. The progression is often nuanced or subtle. You might be able to remember events that occurred years ago, but not what you did this morning. You might not remember where they put the car keys, but in a more significant manner that merely normal aging issues. You might experience issues identifying the correct word to complete a sentence or to communicate a point. Executive tasks, like balancing a checkbook could become much more difficult or simply impossible.
Some Background on Alzheimer’s Disease
Alzheimer’s disease is a neurological disease in which brain cells die. This negatively impacts cognitive abilities. The accumulation of amyloid plaques in the brain may be a factor triggering the disease. This accumulation may begin even decades before symptoms are identifiable. This may lead to the spread of tau that eventually accompanies cognitive decline. Surprising to many people, Alzheimer’s disease is not the only cause of dementia, but it is the most common. It is estimated to account for more than 60% of dementia cases. Estimates are that more than 5 million Americans suffer with the condition, but that figure is and will continue to grow as the population continues to age. Generally, Alzheimer’s disease affects older people, eg, those over 65. However, perhaps 10% of cases affect people that are much younger.
My Spouse (Parent, Sibling, etc.) Was Just Diagnosed What do We Do Now,
No question that much of your early efforts if a loved one was diagnosed with Alzheimer’s disease will be devoted to dealing with the emotional trauma of the diagnosis. It is life changing. It is life-shattering. You and they and others may all be in a bit of a daze while trying to absorb the news and the implications. That’s OK and it will take time. The adjustment will be different for everyone. You will also be devoting attention to interacting with medical experts to better understand the implications and what medically you can do. But there is a wide range of other steps that might be important to take, some quickly, to begin to plan for the implications of the diagnosis. The following checklist hopefully will give you and your loved ones a starting point on that journey. Keep in mind that everyone’s situation is unique (how and who you can rely on as a safety net, your financial situation, health insurance coverage, long term care coverage and options, state law, and so much more). So, be certain to talk to professional advisers in your state and tailor any steps you do take based on their guidance for your personal situation.
Your circumstances are critical to identifying what type of planning steps you must take. Identifying these, and perhaps ideally documenting them in a letter or checklist, might be helpful to you, the loved one affected and certainly to any advisers you might speak to. That will avoid misunderstandings, save the cost and time of advisers having to ask the same questions, etc.
When were you diagnosed? How long ago?
Do you drive? Are you still driving? Did the physician or other medical professional make any suggestions as to when driving might be advisable to stop?
How is your current status? Do you remain aware and understanding? Do you seem to have the capabilities (in legal terms “ capacity”) to still sign legal documents? That is critical to many of the planning decisions discussed below. Also, and this is a surprise to perhaps every non-lawyer, whether or not someone has “legal capacity” to sign a contract or will is a legal decision, not a medical decision. Yes, it should be based on medical evaluations and input (so save that information provided by medical providers) but it is ultimately for an attorney to make that evaluation. So, don’t be surprised when the person’s attorney asks many questions and requests information. That is what they have to do.
Get Medical Information
A prerequisite to evaluating options for all your planning, from estate planning, Medicaid planning your residential living options, and other critical decisions, is understanding from your medical advisers (not what you read online or hear from friends) as to the current circumstances and future disease course. Most likely there are many unknowns and a wide path of possible options, but getting specifics, as best as your physicians can estimate today is essential.
Discuss openly with the diagnosed person’s doctors what they anticipate as his or her prognosis over 6 months, 1 year, 2 years, 5 years and 10 years. That will give you an idea of what to anticipate and plan for. Of course, there is no certainty to what they guesstimate, but it will be helpful.
Consider bringing a child or other family member, or friend, to that meeting to take notes as it may be a very difficult emotional meeting and getting an accurate record of it is quite important. The medical provider might request that the patient sign a HIPAA release authorizing discussions with anyone else at the meeting. It may not be necessary if the patient is present, but if it is asked for it is a relatively simple document that authorizes disclosures and communications with that person. Just read the discussion below on HIPAA releases before anyone signs one.
Consult with a Care Manager
You should consider interviewing several care manager now. Even if you do not need that type of help now, and perhaps may not for quite a while, a care management firm can provide a consultation to help you evaluate many of the options you might have. For example, a care manager can help you analyze residences/living locations and environments. They can help you evaluate stay at home versus other options may be worthwhile. Consult with a care manager after the above recommended medical appointment so that the care manager can have the above information, review in person your home’s layout and facilities, and then discuss options and perhaps make recommendations.
Other discussions with a care manager during a consultation may include whether you might need to install a chair lift in your home (eg, from the first floor living area to the second-floor bedroom area). You should have a care manager review the physical environment and advise you as to whether or how to handle that. Do you have a spare bedroom or room that can be converted to a bedroom for a caregiver if needed in the future? Again, the care manager on a review may be able to provide insight as to those arrangements and how they may favorably or negatively compare to other housing options.
A purpose of this type of planning is to reduce the assets that nursing home and other care providers can reach. If you are going to consider this type of planning consult with an elder law attorney in the state in which you reside. The laws differ significantly from state to state, so you need a local expert. Be certain that the person you consult with devotes a substantial portion of their time to this specialty.
This probably should be done before you evaluate the residence options discussed below. The manner in which your home, if you retain it, is to be owned, may be affected by the advice of the elder law attorney gives you. They may also have the knowledge to help you explore, not only the residence option, but many of the issues in this article.
Residence and Living Arrangements
It is important that the residential and living accommodation options, including living location and environment, all be reviewed. It could be important to make decisions as quickly as you are comfortable, as it may grow more difficult as the dementia progresses for the diagnosed person to acclimate to a new residence. Also, if the burdens on the caregiver spouse/partner/friend increase it may grow more difficult to orchestrate a move. You might even opt to immediately begin reviewing personal belongings to identify items you might now give to your family, sell or discard, since whichever option you choose, those steps may inevitably be required. Even if you remain in your residence you might benefit from decluttering, making room for a future home health aide, stair lift, etc.
You may opt to retain your existing home. But if you do, you should consider having a professional care manager experienced with dementia challenges visit your home and provide you with recommended steps and considerations. You should explore the wide range of senior and dementia care facilities and what pros/cons they have. This is a difficult step and one many people do not wish to take, but you should at least evaluate options. Consider the possible risks and challenges if in more advanced stages of dementia the person leaves the home when the caregiver is sleeping or otherwise occupied. That could be dangerous.
If you have ever thought about relocating to live near a child or other family member who might be able to help, now may be the time to have a frank discussion with that child or family member and consider whether moving makes sense. Perhaps it may be worthwhile to…
Credit: www.forbes.com /