Here you'll find an archive of questions asked by topic

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Communicating Tragic Events

Q: My husband who has Alzheimer's had a mini stroke yesterday. I got a call from New York that one of his younger brothers died today. I am debating how to tell him about the death. Do you have any suggestions? I don't want to shock him.(Answer)

Q: I have a friend that has just been diagnosed with Alzheimer’s. With the progression of the disease we are at a loss as to how and when to tell her that her memory loss is due to more than major losses in her life. I feel she needs to know so that if there are things that she wants to do or people to talk to she can do it before the memory loss gets any greater.(Answer)

Nursing Homes

Q: My 75 year old father with Alzheimer’s is in a Nursing Home, and they are telling me they are kicking him out because his behavior is difficult. I don’t want him over-medicated, but I know he needs to be in a facility due to the level of care he requires. What can I do?(Answer)

Safety

Q: My 92 year old mother is caring for my stepfather who has early stage Alzheimer’s. I am concerned that if something happens to her, like a fall, he will not be able to help her or recognize that she needs help. Is there a device she can wear, so she can summon help for herself? Other recommendations? They live in a retirement home in Sun City, AZ. (Answer)

Q: I need help on how to deal with an Alzheimer's patient living in our home (father-in-law) who refuses to give up driving even though he has gotten lost several times (for over 24 hours).(Answer)

Q: My husband who has Alzheimer's had a mini stroke yesterday. He was checked out by the neurologist and is just fine. I got a call from New York that one of his younger brothers died today. He couldn't make it to New York for a funeral, for sure. I am debating how to tell him about the death. Do you have any suggestions? I don't want to shock him. His brother has been very sick for a long time, and my husband does know that, if he remembers.

A: Answer by: Rebecca Axline is a Licensed Clinical Social Worker at the Methodist Neurological Institute of The Methodist Hospital

Your question is a good and practical one. How does Alzheimer's affect someone's ability to hear bad news and how can I make sure I am not doing a bad thing by telling my husband about his brother's death.

Please know there is no right or wrong decision in this case; it is simply a decision. I would suggest thinking about several factors such as how did your loved one deal with death or loss at earlier times in his life? What was the nature of his relationship to his younger brother? What is his current level of functioning - does he remember some things and not others; does he become tearful or angry easily? Talking to his primary physician would also be important, to ensure that his medication is at an effective dose and his emotional status is as stable as possible.

If you decide to tell your husband about his brother's death, there are things you can do to help both of you handle this difficult conversation.

1. Decide on a time of day and setting that will lessen the intensity - for example after breakfast and medications while sitting at the kitchen table.

2. Consider having a family picture album on the table so you can reminisce about earlier times and gently remind him about his brother's life and his brother's illness.

3. Consider buying a few different sympathy cards so that after you discuss his brother's death, he can sign a card and create his own symbolic ceremony of grief. Have tissue nearby in case he becomes tearful.

4. If having other family members with you for support would make you more comfortable, include them.

5. Most importantly, make this time sacred and special, but avoid making it a time of high drama or intensity. After you are done, go on with the other routines of your daily life. Take care of yourself and remember, he may or may not remember his brother's death or this conversation - but you have respected both him and his brother by having it.

Rebecca Axline is a Licensed Clinical Social Worker at the Methodist Neurological Institute of The Methodist Hospital. Rebecca has been in social work for over 25 years and has worked in a variety of settings including hospitals, military and veteran’s agencies, hospice care, employee assistance, and in the public schools. The primary focus of her current role is to help outpatients and family members cope with the stress of diagnosis and treatment of neurological disorders and illnesses.

Q: I have an 84-year-old friend that has just been diagnosed with Alzheimer’s. There are 3 church friends taking care of her and her daughter has just reentered her life after the death of a son and years of estrangement. There is quite a lot of activity and change in her life with the daughter coming to live with her. With the progression of the disease we are at a loss as to how and when to tell her that her memory loss is due to more than major losses in her life. She just started Aricept.

I feel she needs to know so that if there are things that she wants to do or people to talk to she can do it before the memory loss gets any greater. It seems to be progressing at a quick rate.

A: Answer by: Answer by: Dr. Robert E. Reichlin, a licensed clinical psychologist and geropsychologist for over 25 years, maintains a private practice in Bellaire, Texas.

Your question is a good one. The situation described is complex. Not only are there apparent and serious changes in how this woman is functioning, but additionally, there are significant changes interpersonally with the daughter re-entering her life. Hence, as the writer indicates, there is considerable stress, which, in itself, can make the situation harder by making it more difficult for her to organize her world and understand what is happening.

There are several questions that come to mind.

• First, how has this woman talked about her memory problems? Has she simply denied it or, as is more commonly the case, has she commented on it occasionally?
• Did any of her friends or relatives have a memory disorder? If so, she may have very poignant memories of what happened to them, potentially making it harder for her to acknowledge her situation- because it frightens her.
• If she is taking Aricept, how did that actually happen? Did her physician explain why she was being prescribed this drug? Most likely he/she did; what words were used (e.g. dementia, just getting older, etc.)?

The answers to questions such as these (and I'm sure there are many more that can be asked) help give some context for how to talk about what is happening. If she has a diagnosis of some form of dementia, it may also be the case that her capacity for self-awareness and awareness of deficit has been damaged, making it harder for her to understand what is happening.

How to proceed? Most importantly, one must accept that what one hopes to accomplish may not transpire. Keeping your expectations in check is critical because the relational aspects of this situation are ultimately more important than this woman's ability to acknowledge a memory disorder. Her trust and sense of safety are the critical elements, not what she grasps cognitively.

So, go slow; this may be the beginning of a conversation with her that, over time, may allow for achieving some goals (but, alas, not others). Many times, people with a dementia tacitly acknowledge rather than openly admit to their difficulties and go along with various decisions. For this to occur, one must give them room, even if that means having to tolerate their denial.

Dr. Robert E. Reichlin, a licensed clinical psychologist and geropsychologist for over 25 years, maintains a private practice in Bellaire, Texas. Dr. Reichlin is one of the few clinical psychologists in the greater Houston area who specializes in working with older adults and their families. For more information, visit www.robertreichlinphd.com.

Q: My 75 year old father with Alzheimer’s is in a Nursing Home, and they are telling me they are kicking him out because his behavior is difficult. I don’t want him over-medicated, but I know he needs to be in a facility due to the level of care he requires. What can I do?

A: Answer by: Sarah Young, Alzheimer's Association Care Consultant.

• Consider contacting your local Long Term Care Ombudsman. The Ombudsman can help in the following ways:


• Handle complaints- an Ombudsman supports residents and families to resolve any problems or differences with the facility staff by defining concerns, explaining rights and identifying possible courses of action. An Ombudsman can help resolve the problem in most cases; however, complaints involving serious abuse or neglect are referred to the appropriate agency. In all situations, confidentiality is maintained and no information is released without permission of the resident or legal guardian.


• Provide Information and Assistance- an Ombudsman is a good source of information about selecting a long-term care facility, eligibility criteria, and other services for the elderly. Regional programs present facts about facilities. Residents' rights. To find your local Ombudsman, call 1-800-252-2412.


• Contact the Alzheimer's Association for a list of long term care facilities in your area. Facilities who have certified Alzheimer’s units may be more equipped to deal with behaviors related to dementia than those with no certified Alzheimer’s unit.
  
  For information on certification as an Alzheimer’s unit and Nursing Homes in Harris County click here. For a list of Nursing Homes outside Harris County click here.
  
  
• Make sure your loved one’s doctor is aware of any behavior changes or conditions so that underlying medical concerns or medication issues can be monitored or adjusted.

Q: My 92 year old mother is caring for my stepfather who has early stage Alzheimer’s. I am concerned that if something happens to her, like a fall, he will not be able to help her or recognize that she needs help. Is there a device she can wear, so she can summon help for herself? Other recommendations? They live in a retirement home in Sun City, AZ.

A: Doug Reuschel, LBSW, LNFA, PGCM – Sundance Care Specialists

This is a very common situation and I’m glad that we have this format to start talking about such issues and situations. And, I hope that my response will be of value to you and the many others who may read this.

Falls are the top cause of accidents in people over the age of 65. More than one third of adults 65 and older fall each year in the United States. Among older adults, falls are the leading cause of injury deaths. Unfortunately, your mother and stepfather are both in a high fall risk category. In general, there are several steps that anyone can take to protect their independence and reduce their risk of falling. They can:

• Begin a Regular Exercise Program
• Ask Doctor or Pharmacist to review medications
• Have your vision checked once a year
• Improve lighting in their home
• Reduce hazards in their home that can lead to falls

It might be a good idea for your mother or someone in your family to speak with someone in management at the Retirement Center about these concerns. Some retirement centers are linked with Assisted Living or Nursing homes – or have on-site people who can assist in the area of assessment or providing information about additional services and support. It is also a good idea to open communication with them about these issues as your stepfathers Alzheimer’s progresses.

Another great resource would be to consult with a Geriatric Care Manager. This is a new, emerging profession and an excellent resource for people like you, your mother, and stepfather. The National Association of Professional Geriatric Care Managers maintains a list of Geriatric Care Managers at www.caremanager.org. In addition, the Alzheimer’s Association typically maintains a list of Geriatric Care Managers. A Geriatric Care Manager could make a visit to your parents home, complete a home fall prevention checklist, and in general assess the situation and make recommendations based on their findings.

They may also make recommendations for devices out on the market such as Home Medical Alert systems. These devices can either be worn as a watch, necklace or device in a person’s home to alert the proper individuals or authorities in the event of an emergency. Some of the more prominent companies that provide such devices are: Lifeline, MedicalAlarm.com, AlertOne, 1-800-Med-Alert, LifeStation, and LifeResponseUSA.

Anytime you’re dealing with a situation like Alzheimer’s disease, planning ahead is critical. It is beneficial to start planning ahead and exploring all options such as in-home caregivers / support or even start thinking about Assisted Living or Nursing Home services in the event that they are ever needed. Another area that many overlook when dealing with the day-to-day issues would be the legal aspect of things. Do your mother and stepfather have Advance Directives, Living Will, Power of Attorney, Wills, etc.? All of these areas are important to consider.

The Alzheimer’s Association is probably the single best source of information to people dealing with issues like yours. There is no reason why anyone should have to struggle alone in these areas. They offer support groups, resources and information that may be of help. It is important that people have access to support to avoid having to work through these issues alone.

Again, safety is so important. We need to take the necessary steps to ensure safety for not only ourselves, but also our loved ones. This includes prevention and being aware of what services are available to help us in these areas. I am confident that the resources and information that are given here will be of help to you in your journey. Remember – you don’t have to go it alone.

Doug Reuschel is a Licensed Bachelor Social Worker, Licensed Nursing Facility Administrator, Certified Assisted Living Manager and Professional Geriatric Care Manager. He has worked with seniors and others in need in a variety of capacities since 1986. For more information about Doug, please visit Sundance Care Specialists or call 832-434-8395.

Q: I need help on how to deal with an Alzheimer's patient living in our home (father-in-law) who refuses to give up driving even though he has gotten lost several times (for over 24 hours).

A: Geri Adler, Assistant Professor at the Graduate College of Social Work at the University of Houston

While many issues must be addressed after a diagnosis of dementia has been made, one of the first and most difficult decisions involves driving. Although some drivers with mild dementia can drive safely, for many, driving will become impossible at some point as the disease progresses.

Research has found that drivers with dementia have a higher crash rate, become lost in familiar areas, and make more frequent errors in performance than other older drivers, but as you are aware such behaviors do not necessarily lead to driving cessation. Lack of insight coupled with poor judgment and a loss of reasoning ability can lead individuals with dementia to continue to drive when they are no longer able.

Considering that your father-in-law has experienced several incidents of getting lost it is important to discuss the situation with his physician and to also have his driving evaluated. Many physicians are comfortable beginning the discussion about driving reduction and cessation and to begin the driving evaluation. This initial evaluation includes taking a medical, psychosocial and driving history of the patient. A driving history inquires about driving behaviors and asks questions regarding the frequency, distance, circumstances of travel, familiarity with roadways used, use of a co-pilot, and adverse events such as recent crashes and episodes of getting lost. Family will also be asked if they have any concerns about their relative’s driving.

An in-office assessment is often the first step toward a comprehensive driver’s evaluation. Based on the aforementioned evaluation, many drivers with dementia will benefit further from a formalized evaluation by a certified driver rehabilitation specialist (CDRS).

A CDRS is a professional trained in driver education and training. There is usually a fee for an assessment completed by a CDRS. Unfortunately, Medicare and private insurance are unlikely to reimburse for this service. To locate a CDRS go to: www.aota.org/olderdriver, www.driver-ed.org, or call at 1/800-290-2344.

If testing would show that your father-in-law is able to continue to drive safely, his performance must continue to be revisited. Because many dementias are progressive, ongoing management and discussions about driving are needed. The CDRS may also suggest driving modifications. For example, the CDRS may recommend that the driver limit his/her driving to off-peak or daylight hours or only in familiar areas or in less complex driving environments.

If serious driving errors are apparent, the driver may be advised to stop driving. Discussions about “retirement” from driving must be handled sensitively. In order to be successful, family is needed to be supportive of the plan and to participate in creating a workable transportation plan for their relative. At this time, a letter may also be sent to the your State’s Department of Public Safety. The State may decide to further test the individual or recommend he/she relinquish his/her license.

If your father-in-law is reluctant to quit driving, different approaches can be considered to facilitate voluntary cessation. For some drivers, individual or group support can diminish the loss and provide opportunities to discuss concerns. It is can also be helpful to explore with the driver, his or her reasons for resistance. Sometimes a person, whom the driver respects, such as a clergy or a police officer, can explain the need for cessation. Insurance ramifications are also important to consider and discuss. Of course, sources for alternative transportation must be identified. Often friends and relatives provide the former driver with necessary transportation or can help to locate alternative sources. Conversations with a social worker to identify community supports can be helpful, too. Occasionally authoritarian approaches are needed. In those situations, family members may need to disable the vehicle, move it to another location, hide or replace the keys, or even the sell the vehicle. Finally, the client’s driver’s license should reflect his/her non-driving status.

When a person has been diagnosed with dementia and continues to drive there is always some risk for becoming lost or confused. The Safe Return program is a nationwide registration and identification program that assists in the safe return of individuals with Alzheimer's or related disorders who wander or become lost. If the registrant wanders and is found, the person who finds him/her can call the Safe Return toll-free number located on the person’s identification wallet card, jewelry, or clothing labels. The Safe Return telephone operator immediately alerts the family members or caregiver listed in the database, so they can be reunited with their loved one. For more information on Safe Return or to enroll, visit this link.

Two useful booklets, “At the Crossroads: A guide to Alzheimer’s disease dementia and driving” and “We need to talk: Family conversations with older drivers” are available through www.thehartford.com. “When you are concerned” is another resource available at http://aging.state.ny.us/caring/concerned/handbook.pdf. It is designed to help family, friends, and caregivers of older drivers with driving discussions and decisions.

The Alzheimer’s Association has a fact sheet available on driving as well as discusses warning signs and tips for limiting driving.

Geri Adler is an Assistant Professor at the Graduate College of Social Work at the University of Houston. Before entering academia, Geri spent many years working at the Minneapolis Veterans Affairs Medical Center’s Memory Loss Clinic. She currently is funded by the Alzheimer’s Association to examine driving behaviors in persons with early- stage dementia. Geri is recruiting participants to join in focus groups to discuss driving issues. For information about the next focus group, contact Geri Adler at 713-743-8114.