Few of us know what to do or what to say to our parents and loved ones who are close to death. We often try to avoid all discussions about the topic and take the easy way out, falsely reassuring them that they are doing well and will get better. Recently I read a book entitled “Final Gifts” by Maggie Callanan and Patricia Kelley which has given me new insights into the process of dying, what to listen for, what to say and what to expect from our parents who are about to die.

Callanan and Kelley have tended to the terminally ill for more than a decade as hospice nurses. In their book they relate many touching stories of their experiences with patients at the end of life. Through these stories I began to appreciate the many ways that the dying communicate their needs, reveal their feelings and even choreograph their final moments.

The authors pose a very important question, “ Is it possible to find anything positive in this devastating event?  Can this remaining time be used to share treasured moments of living, while coping with the many losses death brings?”  Here are four recommendations they make that will help you:

1. Dying people often share messages through symbols or suggestions that we often misinterpret as “hallucinations” or “confusion”. These messages fall into two categories: attempts to describe what they are experiencing while dying or a request for something they need for a peaceful death. Pay attention to everything they say. There may be an important message in any communication however vague or garbled.

2. Your parent should get as much information as she wants about the changes taking place in her body and the likely scenarios of her death. She should be given the opportunity to maintain some control over her life by making decisions about medication, treatments and even the site of her death.

3. In the last days of her life your parent will probably go through five stages of dying, denial, anger, bargaining, depression and acceptance. Don’t try to give advice or solutions. Just listen and accept.

4. Don’t be afraid to talk about death with your parent. Avoiding the subject may be interpreted as not caring. Don’t force the topic if they’re not ready to talk about it. But don’t shy away from it either. You might open with a question like “Can you tell me what’s happening?” Don’t worry about saying the wrong thing. Remember what is often harder to forgive is the failure to do or say anything.

Once your parent has been diagnosed with Alzheimer’s disease you must make certain that a plan is in place to protect her and your family. You cannot delay. In order to sign legal documents your parent must have the mental capacity to know and understand the act which she is engaging in and have a desire to engage in that transaction. Once your parent  contracts Alzheimer’s disease her mental capacity may still be sufficient to sign the documents necessary to create a plan but action must be taken while she still has that capacity.

You should make sure the following 4 steps are taken to protect your parent and your family.

1.  The parent must have a Durable Power of Attorney. With this power  she names a representative/agent to make decisions on her behalf. A Financial Power of Attorney allows the representative to make financial decisions for her. The Medical Power of Attorney gives the representative the authority to make medical decisions. In some states the Medical Power is identified as a Health Care Proxy. Since these powers are specified as “Durable” they will still be valid if the individual is no longer mentally competent to make these decisions.

It is important that the parent select someone to have this power that he or she can trust and is easily accessible to help with financial and healthcare decisions. It may be one of the children, a close friend or adviser. A successor should also be named to take over the responsibility if the first person is no longer available.

2. Each parent should also have a will drafted specifying who should get their property at their death. . Again they must have the mental capacity to approve such a document. That means they must know who their family members are, what assets they have and whom they want them passed to. If they do not have a will the state they live in will determine how their assets are to be split up…

3. Your parent should also have Advance Directives in place. Advance Directives are documents that tell the Alzheimer’s patient’s  family members, caregivers and doctors what their end of life choices are and what health care they want to receive. The family and healthcare professionals are expected to act in accordance with these wishes. Advanced Directives include a Living Will. The Living Will is a document that a person uses to control their medical care if they become mentally incapacitated and can’t make end of life health care decisions.

The Living Will should include a statement that if the person is mentally incapacitated certain instructions should be followed to provide medical treatment to them. It should also state when life-sustaining treatment should be terminated. If a patient contracts Alzheimer’s disease after completing a Living Will and is in the late stages of the disease, there is a question if medical treatment can be denied in accordance with the document. But although Alzheimer’s is an irreversible disease it is not defined as a terminal illness. When a person dies they do not die as a direct result of Alzheimer’s but as a result of another complication such as pneumonia.

4. Your parent must also have A DNR or do not resuscitate order on file with  her care providers. A DNR must be signed by  her physician. It is an order from that physician to hospital staff and emergency medical services professionals stating under what circumstances that they not perform medical intervention if your parent is dying. At any point if your parent is still “competent” your parent or his or her representative can revoke a DNR. The verbal wishes of a competent patient always supersede a DNR.

If an Alzheimer’s patient does not have a Durable Power Attorney named or does not have a Living Will it will often fall on the courts to determine who has the ability to make medical or financial decisions for that person. This is often a very time consuming process that can cause excessive delay in making important decisions. It is very important that family members make certain that Alzheimer’s patients put these documents in place while they still have the mental capacity to do so.

Generally, elderly parents want to remain living in their own home. However, remaining in the home becomes a concern when children see their parents slowing down, perhaps even having trouble with handling stairs and doing general daily activities.

This is now the time to evaluate the home to make it safe and secure for your loved ones — now and in the near future — in anticipation of aging disabilities that may occur. Help and support are available. The nation as a whole is more aware of elderly needs and services and products are becoming available at an outstanding pace.

The Bureau of Labor Statistics states,

“Employment of personal and home care aides is projected to grow by 51 percent between 2006 and 2016, which is much faster than the average for all occupations. The expected growth is due, in large part, to the projected rise in the number of elderly people, an age group that often has mounting health problems and that needs some assistance with daily activities.” Bureau of labor Statistics-Occupational Outlook Handbook, 2008-09 Edition 

This growing need for aides and services also encompasses 

• home remodeling services — making a home more serviceable to the elderly;
• safety alert systems and technology;
• motion sensors to monitor movement;
• telehealth services — using home-based computer systems for the doctors office or a nurse to monitor vital signs and
• even a pill dispenser that notifies when it is time to take medication. 

Where do you begin to make sure your elderly family member is safe and managing well in his or her home?

Visit often and at different times of the day and night. Make note of daily activities that appear challenging and where changes might be made to add safety and convenience. Remove rugs that slide — causing a fall — and move furniture with sharp edges. Set the water heater at a lower temperature. This will protect their older sensitive skin from scalds and burns. Be sure smoke detectors and carbon monoxide detectors are in place.

Bathrooms are a hazard area for the elderly. Grab bars by the toilet and shower are a must to help prevent falls. There are easy to install bars at your local hardware store if you want to do the work yourself. Another item that is good to have is a shower stool or chair.

If you are not sure of what needs to be done, consider hiring a professional. There are companies that specialize in home remodeling and accommodation for seniors. Michelle Graham of Accessible Design by Studio G4 says about senior home remodel projects,  

“The main thing we incorporate in all of our projects is a careful study of needs and potential needs that may develop throughout a client’s lifespan.”

Keep in mind what future home adjustments might be needed for your parents to “age in place” in their home.

Home safety or medical alert companies provide GPS-based bracelets or pendants to track the elderly at home who tend to wander. Or the companies may provide alarm devices such as pendants or bracelets which allow the elderly to alert someone if there has been a fall or a sudden health-related attack. In the event an alarm has been triggered, a 24 hour monitoring service will alert the family or medical emergency services or call a neighbor depending on previous instructions. In addition there are companies that will install motion sensors in the home to monitor the elderly on a 24 hour basis.

According to a report by the Alzheimer’s Association of Los Angeles & Riverside, California, there are approximately 3.3 million long distance caregivers in this country with an average distance of 480 miles from the people they care for. The report also states that 15 million days are missed from work each year because of long distance care giving. Seven million Americans provide 80% of the care to ailing family members and the number of long distance caregivers will DOUBLE over the next 15 years.
Long Distance Caregiver Project – Alzheimer’s Association LA & Riverside, Los Angeles, CA (May 15, 2002, National Web Seminar by Judith Delaney, MFT, Clinical Coordinator)

The long distance caregiver is a new role that is thrust upon children and younger family members. Families used to live closer together, with children residing and working near their parents. But nowadays family members are more distant from each other. Society, today, is recognizing this. Some caregiver services have tweaked their programs to work as liaisons between long distance caregivers, senior loved ones and local medical professionals.

Professional care managers — a lso known as Geriatric Care Managers, Elder Care Managers or Aging Care Managers — represent a growing trend to help full time, employed family caregivers provide care for loved ones. Care managers are expert in assisting caregivers, friends or family members find government-paid and private resources to help with long term care decisions.

They are professionals — trained to evaluate and recommend care for the aged. A care manager might be a nurse, social worker, psychologist, or gerontologist who specializes in assessing the abilities and needs of the elderly. Care manger professionals are also becoming extremely popular as the caretaker liaison between long distant family members and their aging elder loved ones. Caregivers can find a professional care manager by visiting the site www.caremanager.org

The holiday season is quickly coming upon us. If you are a caregiver for an elderly loved one, you may notice a change in your loved one’s mood as the holidays approach. Perhaps you are one of many, who visit elderly parents and family during the holidays who live a distance away. When you visit you may notice that loved ones are not as physically active, or they show symptoms of fatigue or sadness and have no interest in the holiday or in their surroundings.

How do you know if it is depression or dementia?
Depression and dementia share similar symptoms. A recent article on Helpguide.org gives some specific differences:

In depression there is a rapid mental decline, but memory of time, date and awareness of the environment remains. Motor skills are slow, but normal in depression. Concern with concentrating and worry about impaired memory may occur.

On the other hand, dementia symptoms reveal a slow mental decline with confusion and loss of recognizing familiar locations. Writing, speaking and motor skills are impaired and memory loss is not acknowledged as a being problem by the person suffering dementia.

Whether it is depression or dementia, prompt treatment is recommended. A physical exam will help determine if there is a medical cause for depression. A geriatric medical practitioner is skilled in diagnosing depression and illnesses in the elderly. If you are a care taker of an elderly person it may be beneficial for you to seek out a geriatric health care specialist. For more information on senior health services go to http://www.longtermcarelink.net/about_senior_health_services.htm

Treating depression in older people.
Once the cause of depression is identified, a treatment program can be implemented. Treatment may be as simple as relieving loneliness through visitations, outings and involvement in family activities. In more severe cases antidepressant drugs have been known to improve the quality of life in depressed elderly people. Cognitive therapy sessions with a counselor may also be effective.

As a care giver or family member of a depressed older person, make it your responsibility to get involved. The elder person generally denies any problems or may fear being mentally ill. You can make the difference in and remove the Holiday Blues from seniors suffering from depression.

The Geriatric Mental Health Foundation offers a “Depression Tool Kit.” To read more about the tool kit and depression in the elderly go to http://www.gmhfonline.org/gmhf/consumer/depression_toolkit.html

To find a Senior Health Care Services in your area on the National Care Planning Council website go to http://www.longtermcarelink.net/a7seniorshealthservices.htm

The National Care Planning Council supports the work of geriatric practitioners and their services to the growing senior population. If you are a geriatric practitioner and would like to list your services with the NCPC please call 800-989-8137.

Looking for a way to help Mom and Dad pay for Home care or assisted living? Perhaps you are their caregiver. Wouldn’t it be nice to receive some extra income to help you provide their care? There is financial help available for senior veterans and their spouses.

For veterans who served during a time of war or for their surviving spouses, the Veterans Aid & Attendance Pension will pay additional income to cover long term care costs. The great news about this program is that VA will allow veterans’ households to include the annual cost of paying any person such as family members, friends or hired help for care when calculating the Pension benefit.

Pension can provide an additional monthly income of up to $1,949 a month for a couple, $1,644 a month for a single veteran or $1,056 a month for a single surviving spouse of a veteran. This money can be used to help pay the cost of home care, adult day services, assisted living or nursing home services.

In order to reduce income to meet the income test for pension, a rating for “aid and attendance” or “housebound” is crucial. Not only does the rating significantly increase the benefit amount but without a rating, room and board costs for assisted living are not deductible for purposes of reducing income. Only the much smaller assisted living medical costs are deductible.

For home care, non-medical costs are only deductible if the in-home attendant is licensed for healthcare in that state or if there is a rating. Since the non-medical costs for home care represent the bulk of all costs for long-term care at home, without a rating, those households with a non-licensed attendant would not qualify for the benefit. Examples of medical or nursing services at home would be help with activities of daily living such as dressing, bathing, toileting, ambulating, feeding, diapering and so on. Other services might include medication reminders or supervision necessary to provide a protective environment for the care recipient — in the case of dementia or Alzheimer’s.

A rating for aid and attendance is automatic if someone is a patient in a nursing home or that person is blind or so nearly blind as to need assistance.

It is our understanding that a non-licensed in-home attendant could be just about anyone receiving pay for providing services. This might be members of the family, friends, or someone hired to live in the home. Unfortunately, a spouse cannot be included in this list for reimbursable caregivers.

For a disabled person who has been rated, a family member will be considered an in-home attendant, but that family member has to be paid for services duly rendered. There is potential for fraud here where a family member may move into the home and ostensibly receive payment as a caregiver but not actually provide the level of care paid for. Documentation for this care must be provided to VA, and it is reasonable for VA to question whether the services being purchased from a family member living in the household are legitimate. Such arrangements should be extensively documented and completely arm’s-length.

See www.veteransmass.com for more info

A number of books have been written by family members who observe the deterioration of a loved one or friend who has Alzheimer’s. But “Still Alice” by Lisa Genova is the first book I have read which describes the experience of losing one’s memory through the eyes of the individual herself. This incredible novel is Lisa’s first work. She has a Ph.D. in neuroscience from Harvard. Her extensive research is clearly evident. Not only did she work with professionals in the field but through the Dementia Advocacy and Support Network, she spoke daily with people suffering from Alzheimer’s.

“Still Alice” is a novel narrated by the main character, Dr. Alice Howland, the eminent William James Professor of Psychology at Harvard University. Alice is an expert in psycholinquisitics who begins to notice strange things happening to her. While she is on a run in her Cambridge neighborhood she finds her self lost and confused. Through her eyes we experience her decline from a noted scholar to a woman who does not know her husband and children. It is a frighteningly realistic journey. As the son of an Alzheimer’s patient I can clearly identify  the behaviors she begins to experience.

In addition to her own behavior we observe the devastating impact the disease has on her husband and adult children. Plans made when she is first diagnosed become a shambles as the family is shocked by her swift decline. Lisa Genova also stresses the importance of support groups not just for families of Alzheimer’s patients but for the patients themselves. There are very few outlets for these people to the share the fear and confusion they experience. We are often more concerned with the family’s expression of grief and overlook the patient’s own reality .

I strongly recommend this book to anyone who has any contact with an Alzheimer’s patient. it will give you a much better understanding of what it is like to stand in their shoes. Nothing I have read evokes such powerful emotion and insight.

Mediation is the process of bringing two or more parties together who are seeking to resolve a conflict. The mediator’s role is to facilitate communication between the parties and help them discover a solution . The mediator’s job is not to solve the problem or impose a solution. . The process is completely voluntary and any of the parties can withdraw at any time.

Mediation can be very helpful in dealing with issues that adult children and their elderly parents face every day. Is it time for the parents to sell their home and move into an assisted living facility? Which child should provide care if a parent wants to stay in their home? How much care does a parent need? Is there disagreement among siblings as to what to do? 

A good mediator will not place blame or responsibility on any one party in the mediation. Through a process of asking questions and soliciting discussion the mediator will help the parties come up with a solution that works for them. The mediation will not work unless all parties agree that the solution is appropriate.

In the past most mediation was done only by attorneys. A new field is developing now which allows professionals from other fields such as Geriatric Care Managers, Financial Planners and Clinical Social Workers to become mediators. Each state has specific requirements for individuals to be classified as mediators. Check with your local senior center, council on aging or the internet to find mediators in your area.

Many elderly people rely entirely on family or other trusted individuals to help them. Whether it is for physical needs or emotional needs, as people grow older they tend to need more and more help from others. This dependence on caregivers or family members makes an older person more vulnerable for abuse.

For example, an older person relying on her children to provide meals and transportation and help her with financial decisions finds it difficult to complain when one of her children takes advantage of her. If, for instance, the child takes her money, hits her or neglects her care, the parent may be threatened with loss of support from the child if the parent complains. The child may also use threats of violence to keep the parent in line.

It is estimated that 5% to 10% of elderly Americans are suffering abuse. Much attention has been focused on abuse in nursing homes but most of the elder abuse in this country is at the hands of family members or other caregivers in the home.

Signs of Abuse:

• Unexplained bruises, welts, fractures, abrasions or lacerations
• Multiple bruises in various stages of healing
• Multiple/repeat injuries
• Low self-esteem or loss of self determination
• Withdrawn, passive
• Fearful
• Depressed, hopeless
• Soiled linen or clothing
• Social Isolation

All states have agencies that receive complaints of abuse. In some states failure to report abuse of the elderly is a crime. To contact an abuse complaint department, call your local area agency on aging. To find an area agency on aging in your area go to http://www.longtermcarelink.net/eldercare/ref_state_aging_services.htm

 After my mom returned from her stay in the hospital with a virus last March she began to deteriorate. She had contracted a urinary tract infection in the hospital and it dramaticallyaffected her memory.

We began round the clock aides and continued that for almost a month. The changing of aides every 12 hours confused her even more. She forgot when they were coming and what their names were. And it was costing us over $12,000 per month. So we made a critical decision. We decided to move her to an Assisted Living Facility close to our home on Cape Cod that specialized in working with memory impaired residents. We were very concerned that she would resist the move.

My wife picked her up and told her she would be staying at the facility until she got her strength back. A week before the move we met with the Executive Director, discussed the transition and selected her room. The Director told us that she might have some difficulties in the first few weeks but that resistence would be shortlived.

Sure enough, when she arrived she began telling the staff  that she wanted to go home. The first week was very painful. We wondered if we had made a terrrible mistake. But with the persistence of the staff and our reassurance she adapted to the new setting after a few weeks. Now she is very happy with her new friends, and is only twenty minutes from our home (instead of 3 hours).

Making decisions for your parents can sometimes seem awkward and difficult but many times it has to be done. It is very uncomfortable to experience a reversal of roles and become the parent of your parent. But in our case my Mom would have continued to deteriorate  in her previous setting. But now, several months later, we are certain that it was the right decision.  We know she is in good hands and is in the right home for herself and her family.