Category Archives: Caregiving – Dementia

Article on use of antipsychotics (WSJ 12-4-07)

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This will be of interest to those who are taking or those whose loved ones are taking antipsychotic medication. (Traditional antipsychotics include Haldol; atypical antipsychotics include Seroquel, Zyprexa, Risperdal, and Clozaril). This is a recent front-page Wall Street Journal article on the subject that has been getting a lot of attention. Here are a few excerpts from the article:

* “In recent years, Medicaid has spent more money on antipsychotic drugs for Americans than on any other class of pharmaceuticals — including antibiotics, AIDS drugs or medicine to treat high-blood pressure.”

* “Nearly 30% of the total nursing-home population is receiving antipsychotic drugs, according to the Centers for Medicare & Medicaid Services, known as CMS. In a practice known as ‘off label’ use of prescription drugs, patients can get these powerful medicines whether they are psychotic or not.”

* “Nursing homes often find it difficult to balance the demands of caring for certain patients against the pressure to keep staff costs down. The economics of elderly care can work in favor of drugs, because federal insurance programs reimburse more readily for pills than people.”

* “America is facing a public health crisis over the care of those with dementia, Dr. Pollock says. ‘We are left with the atypicals because we have nothing else,’ he says. These drugs have a role to play, he says, but ‘nonpharmacologic treatments’ should be tried first.”

* “The Food and Drug Administration issued a ‘black box’ warning on using the drugs for dementia patients in 2005. … Some doctors are now switching back to older, cheaper antipsychotics, such as Haldol, the FDA says. The older drugs had fallen into disuse, but don’t have a black-box warning. Now, the FDA says it’s weighing putting a black-box warning on those drugs, too.”

Here’s a link to the article:

http://online.wsj.com/article/SB119672919018312521.html

Prescription Abuse Seen In U.S. Nursing Homes
Powerful Antipsychotics Used to Subdue Elderly; Huge Medicaid Expense
By Lucette Lagnado
Wall Street Journal
December 4, 2007; Page A1

Robin

“To drive or not to drive, that is the question…1 solution”

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I’m forwarding this email mostly for the good laugh but it does contain a very clever suggestion!

Robin

(From the LBDA Forum)
http://www.lewybodydementia.org/forum/viewtopic.php?t=480

Posted by: Linda
Posted: Mon Sep 03, 2007 5:49 pm
Post subject: To drive or not to drive, that is the question… 1 solution

Dad wad driving. He LOVED his keys. We really thought we would have to take the car away from both mom and dad to get him to stop. He came to visit us in Florida and got the car stuck in the mulch. We decided to just leave it there. After 3 or 4 days we started talking about how bad his vision was. (He WAS seeing things that were not there.) Then we brought up the fact that maybe it was time to let mom drive. It was MUCH easier than we thought. BUT, we knew when he returned to NC, he was going to make a break for it. SO, I went to the key store and had them make a key for the ignition that would NEVER start the car. We left the key to open the doors and trunk on his ring and replaced the ignition key with the dummy. Sure enough, when he returned home, he tried to start the car. Every time he comes in and says the car won’t start, we just point out the fact that he agreed not to drive because his eyes are so bad.

Back in February, I took him to the beach. On the way home, I needed to stop at the grocery store. He said he would wait in the car. He was in the passenger seat. “Don’t leave me, Dad.” (Famous last words.) When I came out, no dad! I just started laughing. I should have known better. After a while, I spotted the car at the far end of the strip mall. I ran as fast as I could, pushing the cart. When I almost reached the car. He took off. This happened two or three times before I caught him. I almost believed he was doing it just for fun. I just thought I’d share this, since so many days with LBD are so tough. Some things that happen are a blessing. When dad is gone, I’ll remember the day he exercised me at the grocery store.
_________________
Linda
Father has LBD, lives 400 miles away

First Steps after a Dementia Diagnosis

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Hurley Elder Care Law offices are based in Atlanta. In the August 2007 issue of their publication “The Elder Issue,” they offer some guidelines for families to follow once a family member has been diagnosed with Alzheimer’s or any dementia type.

Some of the steps families should follow include:

* Organize a family meeting
* Assess your loved one’s abilities
* Learn about Alzheimer’s disease
* Find a good healthcare provider
* Make long term plans
* Create a support network
* Investigate resources for local support

Here’s a copy of the law firm’s advice. Just replace “Alzheimer’s Disease” with whatever disorder of interest to you as I think the guidelines apply to us all.

Robin

——————-

http://www.openmoves.com/accounts/hurley/issue08_0807-online.html#parents_more

Family Caregivers’ Guide to First Steps after a Diagnosis of Alzheimer’s Disease
Hurley Elder Care Law
The Elder Issue
August 2007

Family situations vary tremendously. Sometimes all adult children and the spouse of the person with AD are in agreement as to the next steps to take, but possibilities for family disagreements are many. The cooperation of the person with AD is very important. Sometimes the person with AD is willing to stop driving, sign all of the important legal documents, and accept the care that he or she may need. But often there is resistance to making changes by the person with dementia.

There are concrete steps that family members can take to make the journey smoother. Some of the steps that you can take as a family member of the person with dementia are:

FAMILY MEETING: Arrange for a regular family meeting to discuss all of the issues related to the diagnosis. Discuss the diagnosis with everyone in the family including family members in other cities or states. Talk about what needs to be done now and in the future. Although the responsibilities of various family members will differ, everyone needs to know what is happening. It is a good idea to have one person who will speak for the family on issues related to health care and the same person or a different person who will speak for the family on financial issues. After the family decides the correct person for each responsibility, formal power of attorney forms can be signed. For example, some family members may live in the same city as the person with dementia. It would make logical sense to designate one of those family members with power of attorney for health care since they can go to the doctor’s office with the person with dementia.

FAMILY MEMBER WITH AD: Make a realistic assessment of the abilities of the person with the disease. The family members cannot rely solely on what the person says she or he can do. These actions must be observed first hand. The idea is to give the person with the disease as much as they can reasonably do for themselves, while not making unrealistic demands. Driving, making financial decisions, staying alone, and using the kitchen safely are all examples of issues that need to be examined on a regular basis. As an example, a person with dementia may think that it is still safe to drive the car alone even though she or he may have gotten lost recently.

LEARNING ABOUT AD: Learn all that you can about the disease. Read books, search the Internet, talk with other family caregivers like yourself, and talk to knowledgeable health care providers. One good place to start is the Alzheimer’s Association at www.alz.org and 1-800-272-3900. A very useful book is “The 36 Hour Day: A Family Guide for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Late Life” by Nancy Mace & Peter Rabins.

MEDICAL CARE: Find a health care provider with whom you can work. It may be the physician who diagnosed the disease, or it could be a research physician at Wesley Woods of Emory University or another research program. The person you work with should understand the progression of the disease and know the latest information on medications to treat the symptoms. It is very important that someone goes to each physician appointment with the individual suffering from Alzheimer’s disease in order to better understand the disease and the treatment. This is actually true for most people since they cannot remember everything that the doctor told them five minutes later, regardless of whether they have memory impairment or not.

LIFE CARE PLANNING. Make certain that the necessary legal and financial plans are in place. The most important thing that people should consider is how to find, get and pay for good long term care. This includes the need for an evaluation of the assets available, who needs to have access to those assets and what are the alternative means of financing long term care. From the legal document perspective, a review of or putting into place a Durable Power of Attorney, Health Care Power of Attorney and a Will and/or Trust is very important while the individual still has sufficient capacity to make such decisions.

EMOTIONAL SUPPORT: Set up a support system for yourself. Who in your family or among your circle of friends would be the most supportive of you and your family? Work with them in finding the help you need. You may just need to have someone listen to you and provide some relief from care giving. You may want to join a support group sponsored by the Alzheimer’s Association to work through the feelings that you have and to get ideas about how to best care for your family member with AD. Remember that if you burn out as a caregiver, you are no good to anyone, including yourself.

SAFE RETURN: At a minimum, register the person with Alzheimer’s disease in Safe Return. This is a program of the Alzheimer’s Association that consists of a national registry and an identification bracelet. The cost for Safe Return is $40.00 for the first year and $20 for each year your relative is in the program. With changing technology, there are more and more options available for people to locate a lost or wandering loved one.

RESOURCES TO HELP: Find out about services available in Georgia to assist a person with Alzheimer’s disease. Develop a list of places to contact including adult day, home care agencies, and long term care facilities. Know the services available in your community so you can access these organizations and services as you need them.

CAREGIVER SUPPORT: Take care of yourself. You need to think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops or progresses quickly. Learn to recognize your stress risks and find ways to relieve them. Accept help. Your life and the life of the person with the disease depend upon you caring for yourself.

DIFFICULT SITUATIONS: Difficult situations can easily develop related to family members with Alzheimer’s disease. One example is when the spouse or adult children will not take the keys away from the person with AD, nor will they admit that there are safety issues involved because they themselves are in denial. People in certain stages of the disease cannot make rational decisions. Remember that and take action to protect not only your family member, but the public at large. Another frequently occurring situation happens when one spouse has Alzheimer’s disease and the other spouse has physical health problems. In this circumstance, the husband and wife need different kinds of care and may not be able to stay in their home indefinitely. It pays to be prepared for this eventuality.

HELPING CHILDREN AND TEENS. If you are an adult daughter or son caring for a parent with Alzheimer’s disease, it is likely that you have young children or teenagers still living in the home. Children often experience a wide range of emotions when a parent or grandparent has AD. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” It is important to find out what the emotional needs of your children are and try to meet them.

The diagnosis of Alzheimer’s disease or any related dementia can be very threatening news, but when a spouse and/or adult children are willing to deal with the illness in a systematic manner, family conflicts can be minimized and the quality of life of the person with the disease can be maximized. The most important thing to do is to take action and take action quickly. The sooner that action is taken, the more options there are available.

Clock for meal times and bed time

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My caregiver friend Eric, whose father-in-law has dementia, has developed a 24-hour “meal clock.”  His father-in-law kept getting confused as to what time it was and whether it was time to eat or sleep.  Check out Eric’s ingenious approach here:

pragmaticcaregiver.blogspot.com/2007/05/id-like-to-buy-clue-part-1.html

A standard (cheap) wall clock can be modified to show standard meal times and bed time for the person you are caring.

Let me know if you give it a try and if it works for you!

Robin

 

Tips for Caregivers (from Janet Edmunson)

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Janet Edmunson’s husband Charles was diagnosed with PSP in the late 90s.  After his death at age 50, a brain autopsy revealed he had corticobasal degeneration.  (The four disorders in our group are often confused for each other!)

After her husband died, Janet wrote a book titled “Finding Meaning With Charles: Caregiving With Love Through A Degenerative Disease.”  She is also an inspirational speaker.

A radio interview she did on the topic of caregiving is available online.  Go to this webpage:
http://www.wsradio.com/internet-talk-radio.cfm/shows/Coping-with-Caregiving/archives/date/selected/02-03-2007.html

And then click on item #2.

On her website — www.janetedmunson.com/ — she has some tips for caregivers.  (I especially find the message that “stress makes you stupid” to be resonating loudly with me these days.)  Her tips are copied below.

Robin

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Tips for Caregivers
by Janet Edmunson
janetedmunson.com

Difficult experiences teach us precious lessons of wisdom. During the later stages in dealing with Charles’s disease, I had learned quite a few lessons:

Don’t wait too long to get help. Trying to do it all seemed like the only way at first, but that eventually wore me down. I hadn’t thought that Charles would accept help from home health aides-especially female ones. In retrospect, I found that once he had the help, he quickly got used to it, after a bit of complaining. I ended up missing out on needed help earlier in his disease.

Stress makes you stupid. I couldn’t concentrate, couldn’t find the right word I wanted, or I would just forget things. I understand that there is actually a physiological explanation for this phenomenon: Stress can impact our ability to think clearly. I was glad to realize that I wasn’t really losing my mind.

Surround yourself with positive people and messages. I felt uplifted when I listened to the Norman Vincent Peale tape we had ordered for Charles through the National Library of Congress. Peale’s affirming theme of “you can if you think you can” gave me courage and assurance that my positive attitude was what would get me and Charles through. Two other quotes from Peale also encouraged me: “It’s always too soon to quit” and “To every disadvantage there is an advantage.” I wrote each of those down and kept the notes handy. They fit in well with a saying I had always tried to follow: “When life gives you lemons, make lemonade.” With positive people and messages around me, I had the confidence to make it through this unimaginable life difficulty.

Strength comes in helping someone else. The more I committed to help Charles fulfill his goals, the stronger I felt in my care giving. I guess that was because I had become a partner with him in preserving his legacy, which provided meaning and purpose for this struggle.

It’s difficult dealing with the very long good-bye that is part of a neurodegenerative disease. While I didn’t hear her say this, I understand that Nancy Reagan used these words to describe living with Ronald Reagan’s Alzheimer’s disease. While I chose to be optimistic and tried to make the best out of our situation, I had nonetheless been losing my beloved Charles bit by bit. And that was still very difficult and painful.

Assisted suicide is probably not necessary. Earlier in Charles’s disease, I had pondered whether assisted suicide might actually be a humane way for Charles to end his life, if living it was too difficult for him. If he was no longer contributing to life — and was just existing — why shouldn’t we be allowed to do it? But I had learned that for Charles, even though he couldn’t talk, he was still making an impact in other’s lives. Even the hospice staff and volunteers, who never heard him speak, commented on the powerful influence he quietly had on their lives. And because he didn’t show that he was in too much pain, allowing nature to take its course seemed to be the right thing for us.

Be more upfront. I wish I could have dealt earlier with certain issues that arose with Charles, such as his driving, retirement, and getting a wheelchair. I felt that he needed to be emotionally ready to address some of these things. However, in some instances, I might have waited longer than I really should have. I could get the gumption to deal with potentially contentious issues only if I psyched myself up first. But even then, these issues took me out of my comfort zone. I watched for the appropriate opportunity and pounced on it when it came, but I wish I could have been more proactive.

Life isn’t fair. That was just the way it was. By accepting that life isn’t fair, I was usually able to stay clear of the anger and frustration that can paralyze caregivers. My brother explained to me once that the Chinese symbol for crisis is danger plus opportunity. The danger just happened — Charles had a degenerative disease. Even though it was unfair, this tragic opportunity allowed me to live more deeply and passionately.