Taking care of yourself is critically important.

Currently, seventy percent of Americans with Alzheimer’s disease are cared for at home.

Very often the caregiver is so busy caring for their loved one that their own health and well being is neglected. This can lead to dangerous situations, for both the caregiver and the one they love.

Warning Signs of Cargiver Stress

• Social withdrawal from friends or activities that once brought pleasure.
• Exhaustion
• Lack of concentration
• Anger toward the person with the disease

There is Help for You

The Alzheimer’s Association offers a number of tools to help reduce caregiver stress. First, you can atend a free education session to learn about caregiving techniques of the stages of Alzheimer’s

Secondly, join a support group to share with individuals in situations similar to yours.

Give yourself some credit. It is OK to occasionally lose your patience and make mistakes. If you need to vent call

1-800-272-3900.

Take care of yourself, eat right, visit our doctor.

Caregiver Stress Test

One of the resources available to you on the ALzheimer’s Association website is the Caregiver Stress Check.

This simple yes or no quiz covers common areas of caregiver stress. Based on your answers to questions like”I worry that the person I care for is safe?”, the system will direct you to resources that are available to you through the Alzheimer’s Association.

If you indicate that you are overwhelmed and feel like you are having to do everything, then the system might direct you to Lotsa Helping Hands program or the CareFinder Program.

The Lotsa Helping Hands tool is a FREE interactive, online calendar that helps you identify the help you need when you want it.

The CareFinder tool has information about care professionals. What questions you need to know to ask a new doctor, or things to keep in mind when you are making legal or financial plans, it is all there. CareFinder can even give you a personalized list of recommended care options.

To learn more about any of the caregiver resources available in your are call the 24 hour helpline at

 1-800-272-3900 or visit www.alz.org/dsw.

With multiple hospices serving some communities, it can seem challenging to select one.  NHPCO suggests the best way to begin is by reaching out to the hospice providers in your community to find the one best equipped to meet your family’s specific needs. The new worksheet, Choosing a Quality Hospice, will help.

“Choosing a hospice to care for yourself or a loved one in the final days and months of life is such an important and stressful process,” said J. Donald Schumacher NHPCO president and CEO. “Each hospice offers unique services and partners with specific community providers – so it’s important to call the hospices in your area and ask them questions to find the one with the services and support that is right for you.”

Schumacher continued, “Your doctor or a family friend may suggest one or more local hospices, however, the patient and family make the ultimate decision about which hospice they choose.”

Caring Connections, a program of NHPCO, has developed a worksheet that provides suggested questions to ask a hospice when you contact them. 

• Is the hospice Medicare certified?
• When was the last state or federal survey of the program?
• Is the hospice a member of NHPCO and its Quality Partners Initiative?
• What extra services does the hospice provide?
• What services do volunteers offer?
• What options are available if a person needs in-patient care in a facility?

“If a family doesn’t feel ready for hospice, they should ask about palliative care that brings the same team approach to quality care earlier in the course of a serious illness. America’s hospices are the largest providers of palliative care and no one is better trained at helping people who need expert pain and symptom management as well as support for family members caring for a loved one. Hospice helps individuals with a life-limiting illness live as fully as possible for as long as possible,” Schumacher added.

To find out which hospices serve your community, call NHPCO’s HelpLine at 1-800-658-8898 or visit www.caringinfo.org/findahospice.

Anecdotally, hospitals are not honoring patients right to freedom of choice of post-acute providers as they are required to do by federal law, especially according to agencies that are not owned by or affiliated with hospitals.  Hospital-based agencies often tell a completely different story.  Some of them are certain that they are not getting their fair share of referrals of discharged patients.

 The horror stories are legion!  We all certainly recognize that the stories must be carefully investigated in order to determine what actually happened.  A review may indicate that the facts are not quite as they seemed initially, for better or for worse.  I have had only two family members who were entitled to freedom of choice of home health agencies.  Here are their stories:

 The first family member was a Medicare patient who was hospitalized with a broken shoulder.  The discharge planner/case manager came into her room while I was on the telephone with her.  The patient explained to the discharge planner/case manager that she was going to do whatever I recommended.  The patient suggested that I talk directly to the discharge planner/case manager who then came on the telephone line.  Her first words to me were: I assume you want the Hospital’s agency?  I responded by saying that we did not and that I had already arranged for services from one of our clients.  No choice was ever given to the patient or to me, including the presentation of a list of home health agencies, which is contrary to applicable statutory and regulatory requirements.

 The second family member was a private insurance patient who was hospitalized for knee replacement surgery.  Discharge planners/case managers must comply with applicable Conditions of Participation (CoPs) for hospitals for all patients who may benefit from home health services, including presentation of a list of agencies.  No list of agencies was provided to her, but she was asked if she wished to choose a home health agency.  She replied that she wanted an agency that is a client of ours, which we agreed she would choose in advance of her surgery. 

 After expressing her choice to the discharge planner/case manager, the patient received a call from the Hospitals home health agency asking if she would like to receive services from them despite the choice she had already made.  The patient replied that she still wanted services from the agency she chose earlier.

 The patient was discharged and went home.  She waited a day or so and had not received any communication from the home health agency she chose.  She then called the agency and was told that they never received a referral for her.  They quickly obtained the information they needed and initiated services.

 These instances certainly fall short of compliance with applicable requirements.  Apart from compliance issues, why does it matter?

 It matters because the right to control one’s body, including who provides healthcare, is a fundamental right.  In fact, it undergirds our society and culture.  Imagine what it would be like if we did not have this right and had to receive healthcare services from providers who we did not select, regardless of the quality of care rendered.

 Case managers/discharge planners are key to the protection of this legal and ethical imperative.  As emphasized in previous articles, they are required to make a neutral presentation of post-acute providers without  stacking the deck.  They are also required to honor patients choices without efforts to persuade them to change their choices.  When patients cannot choose, discharge planners/case managers must assist them to do so, as opposed to selecting for them.  Assistance may include recommendations from discharge planners/case managers about which agencies may be helpful to patients, including their own hospitals agencies.

It’s time to get it right!

1. One of the most common signs of Alzheimer’s is when memory loss disrupts daily life. This includes forgetting recently learned information, forgetting important dates or events, repeatedly asking for the same information, and relying on memory aides.

2. Challenges in planning or solving problems is another sign of the disease. This may appear when trying to follow a simple recipe or keep track of monthly bills. They may have difficulty concentrating and take much longer to do things than before.

3. When someone begins to have difficulty completing familiar tasks at home, at work or during leisure activities, it can be a sign of Alzheimer’s. People with Alzheimer’s may have trouble driving to a familiar location, managing a budget or work or remembering the rules of a favorite game.

4. Losing track of dates, seasons, and the passage of time is a classic sign of Alzheimer’s. People may have trouble understanding something if it is not happening immediately or they may forget where they are or how they got there.

5. For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.

6. People with Alzheimer’s may have trouble following or joining a conversation, or difficulties with writing. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They might also struggle to find the words for things.

7. Misplacing things and losing the ability to retrace one’s steps is also a sign of Alzheimer’s disease. People with Alzheimer’s may put things in unusual places, lose things, and sometimes even accuse others of stealing from them. These tendencies may occur more frequently over time.

8. People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers or other scam artists. They might also pay less attention to grooming or keeping themselves clean.

9. Someone with Alzheimer’s may begin to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete favorite hobby. They may also avoid being social because of the changes they have experienced.

10. The mood and personality of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

The Alzheimer’s Association website, www.alz.org, also provides a comparison chart of Alzheimer’s symptoms and typical age-related behaviors. There is also a “Brain Tour” link available on the site to see precisely how Alzheimer’s disease affects the brain.

The Alzheimer’s Association encourages early detection of the disease so that people can get the best help possible.