We Have a Diagnosis. Now What?

April 20, 2011

The diagnosis of Alzheimer’s disease, much like the diagnosis of cancer, can be devastating.  Healthcare providers often have differing opinions on whether a person afflicted with the disease should be told they have Alzheimer’s.  We err on the side of not using the term Alzheimer’s when discussing the condition with the patient, but using “dementia” instead, thinking such a term may lessen a sense of hopelessness or depressed feelings.  The family and caregivers, however, are always told the diagnosis.  We fully acknowledge that not every healthcare provider has this approach.  We do share the term “Alzheimer’s” with quite a few patients based on our assessment of each case.  That being said, there is some recent evidence that seems to suggest telling people they have Alzheimer’s disease may not significantly increase their likelihood of depression.  One critical point should be made here: the person must be told he has a condition that is affecting his cognitive abilities.  Otherwise, he will wonder why he is being taken to the doctor, placed on medication, assisted with daily activities, etc.

As soon as possible after you are aware of the diagnosis, we recommend you begin taking steps to prepare for the road ahead. Caring for a person with Alzheimer’s disease is very costly, in both financial and human terms.  Long term care insurance is a good idea, but once a person is diagnosed with Alzheimer’s disease, it is difficult or impossible to find a company who will issue a policy.  Even this option will not begin to fully cover the cost of care.  Plan now for the likelihood that your loved one will need dementia assisted living or nursing home care.  In addition, while your loved one is still able to express his wishes, estate planning, wills, living wills, and other decisions regarding healthcare and end of life should be made and documented, if he has not already done so.  It is very important that your loved one be given the opportunity to provide direction in his care.  This is still possible for most people in the early stages of the disease.  Furthermore, such action will relieve some of your burden as a caregiver when tough decisions arise along the way.

We strongly recommend that you seek the assistance of an eldercare attorney soon after the diagnosis.  These individuals have the expertise to guide you down the very confusing road of long term care planning.  Medicaid, the primary state-run funding program for long term care, has an extremely complicated and ever-changing set of eligibility requirements and rules which only an experienced eldercare attorney practicing in the state where the person with Alzheimer’s lives (VERY important) is qualified to interpret.  If you don’t know where to find an eldercare attorney, check with the nearest school of law, as many times they have these departments on campus.  Otherwise, check with the state bar association for a list of qualified eldercare attorneys.

It is also advisable to sit down and put together a care plan for your loved one which incorporates “off” time for you.  This is a very important element, as you will not be able to make it in this “marathon” without rest and tending to your own needs.  We suggest finding your nearest Alzheimer’s caregiver support group and attending meetings.  For some, listening to caregiver stories can be frightening, especially soon after you have begun your role as caregiver.  In the long run the shared support and affirmation will be helpful to you and other caregivers.

Driving safety (addressed in an earlier blog) should always be a primary concern.  Get into the habit of paying careful attention to your loved one’s driving performance, and report to his physician the first signs of difficulty.  It can be argued that by the time an individual has gotten a diagnosis of Alzheimer’s disease, he should no longer drive.  In some cases and in early stage disease, driving still can occur safely, but we recommend leaning toward safety and transitioning your loved one from the driver’s side to the passenger’s side.

Likewise, begin to carefully observe your loved one’s ability to handle financial responsibilities.  It is important to give your loved one as much independence as possible.  However, too much independence in the face of inability may be harmful.  If your husband is beginning to make mistakes with the checkbook and you continue to allow him to pay bills, he may be very embarrassed when made aware of mistakes he has made.  He may become paranoid and defensive about it.  Other financial precautions also should be taken.  Place your loved one on the national “do not call” list for all solicitations.  One family member with Alzheimer’s disease often received cold calls from stock brokers and would place large orders, completely forgetting he had done so.  You may imagine the chaos it caused when the bills arrived.

Just as with financial responsibilities, you need to monitor your loved one carefully to determine when it is appropriate to take away duties or restrict tasks.  For instance, Ellen’s grandfather always had repaired their cars, lawnmowers, and other things around the house.  One day, her grandmother came into the garage to find he had taken many of the engine parts out of the car, but could not put them back together.  It is a difficult balancing act to decide when it is appropriate to restrict your loved one.  Sometimes, you will be too cautious.  Other times, you will wait too long.  Unfortunately, there is no formula by which you can calculate when the time is right, but we encourage you to err on the side of caution.

Make sure the issue of medication administration is also taken care of early on.  People with Alzheimer’s typically are on several medications, and the scheduling of doses may be difficult.  We recommend the use of a pill box that is divided by date and dosing time, and that this be checked every day by the caregiver, even if you do not live in the same physical location as your loved one.  Calendars and reminders of upcoming activities should be employed early on as well, so that your loved can develop habits of checking these memory aids.  Routine, routine, ROUTINE is extremely important and should be developed early.  Important phone numbers and addresses should be placed in easy-to-access locations, and home modifications should occur at this time.  It would be a good idea to go ahead and investigate the availability of trained dementia sitters in your community for the time when they may be needed.  You should also inform your family and friends about the steps you are taking, so that they may assist you in caring for your loved one, and so that everyone is on the same page.

Make every effort to keep scheduled doctor visits, even though it may be increasingly difficult to get your loved one to the office.  Prepare an updated list of medications, questions, and concerns to send to the healthcare provider before the visit.  This can make care much easier and more effective, and can prevent embarrassing situations from arising in the exam room.  Keep an updated list of your loved one’s diagnoses and medications on your person for easy access.

Above all, begin training yourself to have an attitude of hope — to learn to love and appreciate your loved one as he is in his “now”.  This “now” will be a moving target:  he will have good days and bad days, and his overall condition will slowly decline.  However, this person is still the one you love, deep down, and he still has gifts and talents and a life story and the ability to give and receive love and affection.  Learn to look past loss and see opportunity — opportunity to experience life with your loved one in a different way.  And you must laugh with them! Find humor in the mundane, every day details of life.  Sit down and chuckle at your favorite comedy show.  Tell jokes.  Laugh at the funny things that will arise every day as you care for your loved one.  Those of us who have walked the road know that this is an absolute necessity! Although it may sound almost ridiculous to you in your current state, these ideas will surely make more sense as you travel down your path, hand in hand.

This website has a list of caregiver resources you may find helpful along the way.  Godspeed in your journey of caregiving — a high calling indeed!

No Comments

Categories Alzheimer's and dementia | Tags:

You can follow any follow up comments to this entry through the RSS 2.0 feed.

Leave a Reply