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The Ribbon - Care for Caregivers
Issue 6

A lot of people in the Alzheimer's and Dementia Support Group are dealing with an extremely hard situation. It is trying to care for someone you love who lives many miles away. This issue is the beginning of articles concerning Long Distance Caregiving. We hope this will help you with ideas on how to handle the situation.


Long Distance Care

Why do we see more cases of Alzheimer's now than ever before? The answer is simple. Previous generations of Americans didn't live long enough to fall victim to many of the diseases of advanced age. Many cases of Alzheimer's may simply have gone undetected for lack of proper diagnosis. Today we not only live longer, but our medical knowledge is greater. Unfortunately, the increasing incidence of Alzheimer's disease comes at a time when the number of potential caregivers is shrinking. Twenty years ago, most women stayed home to care for their children. Families were closer knit, and often three or four generations lived in the same area. When women worked outside the home, their jobs were often part-time, so if a parent became ill and needed care, a daughter or daughter-in-law could easily be found to provide it. Today many women, even mothers of young children, hold full time jobs and bring home paychecks that are essential to the family's budget. Many adults live hundreds or even thousands of miles away from their aging parents. Consequently, when a parent becomes ill, there may be no family member available to help. If you've just learned that your father or mother who lives far away from you has Alzheimer's disease, you face an especially difficult situation. But you are not alone. There are many new social services to help you. You have a wide range of alternatives from which to choose. Living in a distant city and learning that a parent or another relative has Alzheimers disease will initially raise many emotions: pain, fear, guilt, anger, and confusion. You will have to work your way through this maze of emotions to make the best, most intelligent decision for all concerned. To help you reach a decision talk over the various alternatives with a trained professional. Because they have the broad experience that comes from seeing many people deal with this situation, these professionals can serve as an emotional sounding board. They also know what kinds of resources are available. For example, when you learn your relative is ill, your first impulse may be to say, "He can move in with us. We'll take care of him." But professionals say that for an Alzheimer's patient, moving may not be the best idea. It can be very unsettling and has a great impact on the person's mentality - they may regress, temporarily or permanently. Generally, people who have been in one place for a considerable length of time, say five years or more, get disoriented upon moving. It has to do with moving from an environment that is familiar and safe to them, to one that is unfamiliar and therefore feels dangerous. When it comes to decisions like this, there are no rigid rules since every situation is different. That is why you should take the time to consider all the possibilities in order to make the best decision. Most caregivers want their loved one to live at home for as long as possible. However, don't neglect thinking about nursing home care now, before the need arises. Suppose, for example, the the Alzheimer's patient develops another disease that requires skilled, around-the-clock care. Or that the Alzheimer's disease itself progresses to the point where the patient requires intensive caregiving - more than you could manage alone. Choosing the facility that best suits your needs can be difficult and time consuming. You may find that some nursing homes are not set up or staffed to meet the needs of an Alzheimer's patient. Investigating nursing homes early, while you can do so in an unhurried and careful manner, can be a tremendous advantage to you as well as the patient. You need time to make an informed decision.

Case management "services" or "agencies" are another option for the long distance caregiver. These are a new branch of social work developed specifically to help family members who live at a distance from one another. Case management workers, sometimes referred to as private geriatric workers, supervise and take responsibility for all aspects of care needed by an aging family member.

Here are some examples of the assistance you can expect from a case management worker:

  • Will assess the patient's needs and make recommendations.
  • Will hire and supervise a home health aide or find an adult day care center or group home.
  • Will visit once a week to make sure everything is all right.
  • Will be available on a 24-hour basis.
  • Will keep in touch with adult children by phone and/or provide written reports.

What are the advantages of using a case management worker? Many have years of experience and are familiar with the special requirements of the elderly. You'll find that they are well-informed about local resources and can locate help you might not find on your own. What guidelines should you set? The case management worker should be aware of your financial limitations and stay within your budget. (if funds are low, perhaps volunteer help or a local special program that provides assistance to low-income older citizens can be found.) What should you look for in a case management worker? A competent, well-trained person with whom you feel comfortable.

Here are some questions you might want to ask:

  • What is your speciality? Most case management workers are social workers who specialize in a particular field and offer personal counseling. Case management workers may be nurses, psychologists, or gerontologists (gerontology is the special study of aging). The right person for you could have any of these specialities.
  • What is your training? Look for someone who has at least an MSW (master's in social work). In addition, most agencies require at least two years of supervised training before letting a case management worker function independently with elderly people.
  • What is your licensure or certification? Each state has different requirements, but it's important to make sure that the person you choose meets them. In some states, qualified social workers are licensed; in others they are certified.
  • Do you like your work? This question will help you get a feel for he person's personality. Case management is an intimate and personal service. You need someone who listens carefully to you, who inspires trust, and who will take the time to answer your questions. This person will be deeply involved in your family's life. It's important to find someone who "feels right" and can meet the specific needs of your family.
  • What are your references? A case management worker should be willing to provide references from two or three families who have already used the service. Their comments, both praise and criticism, can help you with your decision.

You'll also have to decide how you are going to pay the case management worker's fee. Unfortunately, health insurance pays only a small portion (if any) of the cost. Almost all case management agencies are private, for-profit organizations and charge a fee. Some cities however, do have public case management workers available to help low-income residents. How much should you expect to pay? Fees vary, depending on the qualifications of the worker, the skills and time required, and the geographic location. A very ROUGH ESTIMATE for private case management services would be $100 to $200 for the initial consultation plus an hour for regular supervision, with the average hourly fee at $65. Some case management workers prefer to charge a monthly, rather than hourly, fee for long-term supervision; some charge extra for special services such as home visits. But don't let the potential cost discourage you. A good social worker will be able to use home health aides, social work assistants, and other relatively low-cost services to create a complete care program that fits your budget. If you live far away from the patient, this service may be your best choice for providing adequate care. To locate a case management agency, write or call the agency on aging in the patient's home state. The state agency will tell you how to contact the local area agency on aging which will give you specific information on county and city resources near the patient.


Distance Complicates Caregiving

Caregiving can be challenging when the person being cared for is living in the same house. It can be even more difficult when the caregiver and the person with Alzheimer's live hundreds of miles apart. In today's society, often a distant relative must assume the role of primary caregiver. Mary York's suspicion that something was "not quite right" with her mother was confirmed when she learned from a friend that her mom suffered from hallucinations and became lost in her own neighborhood. "When we'd talk on the phone she told me she felt fine and seemed to be in good spirits," recalls York. "But when I heard what was happening and saw for myself how confused she had become, I knew she couldn't be left alone." York consulted with her mother's physician and decided that it would not be a good idea to move her out of the town where she had spent most of her life. "I knew her staying in Kansas wouldn't be as convenient for me, but once we had the appropriate support services in place, I felt it was the best option for mom." York spent the next several years traveling back and forth over 800 miles - often monthly - personally coordinating her mother's care. "It was worth it," she says. Long distance caregivers of people with Alzheimer's disease face the same emotional and financial concerns as those who live close by. Mary Frenza, executive director of the Alzheimer's Association's South Central Michigan Chapter, believes they also carry an additional burden of not being able to see for themselves how dementia is affecting their loved ones. "Distance can cause feelings of guilt and anxiety for the caregivers," says Frenza. "That's why ongoing support and coordinated care are so important - not only for those affected, but also for their caregivers." York agrees. "When you're the primary caregiver, distance doesn't change the issues or responsibilities you face, it just makes them a bit more complicated." York says that with the right mix of services, ongoing coordination, and support from nearby friends, long distance caregiving can work.

 

Make a visit, see what's going on

"Too often, families wait for something catastrophic to happen before they start making appropriate arrangements for care," says Anat Louis, family connections program coordinator at the Alzheimer's Association's Los Angeles Chapter. "Planning ahead will help ensure comfort and safety, and reduce the number of 'crisis calls' long distance caregivers receive." Louis suggests caregivers spend an extended period of time with their loved ones to determine what services are needed. Caregivers should evaluate affected persons to determine how well they perform daily activities related to personal care (e.g., bathing, toileting, grooming), housekeeping, cooking and driving. They should also pay careful attention to decision-making abilities and evaluate current living environments. "Don't assume that a recently diagnosed person doesn't need some assistance," reminds Louis. "People with Alzheimer's need support throughout the course of their disease - from beginning to end."

 

Creating a circle of care

When caregivers live far away from family members with Alzheimer's, friends, neighbors, nurses, care managers and home health workers become a caregiver's eyes and ears. York relied heavily on a few close friends who "checked up on things" and lent a helping hand. "At first, support and assistance from friends in the area was enough," says York. "But eventually, mom required more care." York placed her mother in a local nursing home where many of her long-time friends also lived. "It's important to maintain ongoing communication with facility staff and friends who visit regularly." But York warns that even trusted friends and care providers don't always provide a complete picture of what's going on. "At one point, mom was hitting people, but no one told me about it," recalls York. "Everyone thought the news would upset me. What upset me most was that no one told me what was happening." During support group meetings, she urges other long distance caregivers to plan periodic visits, so they can see for themselves how things are going.

 

Securing appropriate care services

Locating service options in a community that you're not familiar with can be tough. Fortunately, there are a number of individuals and organizations that can assist. "We help long distance caregivers sort out important issues and link them with association representatives in their loved one's community," says Louis, who's currently working with staff in Philadelphia to identify care options for a California family. To locate the association chapter nearest you, call (800) 272-3900. Also, caregivers can contact the U.S. Administration on Aging's free Eldercare Locator Service at (800) 677-1116 for help in tracking down other local agencies across the country. A geriatric care manager can also help caregivers determine what assistance is needed for individuals with dementia. Most will also identify local options and oversee a person's daily care. These services can be costly, but according to Frenza, may be particularly useful for out-of-town caregivers. Contact the National Association of Geriatric Care Managers at (520) 881-8008 for a list of care managers in your loved one's area. Frenza suggests that all families, particularly those caring for someone in another state, do as much advance planning as possible. "At the earliest point possible, ideally while the person with Alzheimer's can still express his or her wishes, family members should discuss how legal, financial and medical matters will be handled in the future." Frenza advises. Social workers, clergy and an attorney can also help families with planning. "My lawyer was a tremendous resource and an important player on our care team," says York.

 

Support for caregivers crucial

Caregiving can be a stressful experience, especially from a distance. Even when caregivers are not physically providing support for relatives with Alzheimer's, they're still mentally coping with personal difficulties associated with the disease. Louis encourages long distance family members to attend support group meetings. "People are comforted to learn they're not alone," says Louis. York believes all caregivers share two common goals: quality care for the person affected and peace of mind for the caregiver. "When caregivers work toward this goal, I hope they recognize they're doing the best they can, no matter where they are."


Helpful Links

American Academy of Neurology - Alzheimer's Disease
HCFA - The Medicare and Medicaid Agency
Social Security Online


In Passing: Those We Must Remember

From Aroline1

Alzjane let us know in group on Friday 3-27 that a member had a loved one pass. Aroline1 lost her husband. He had been in a coma all week.


From skos481020

Dear Folks: My mother-in-law with Alzheimer's died suddenly last week of a brain hemmorhage.She was diagnosed with Alz. last Dec. Thanks for all your support and information. Your newletter was helpful to my sister-in-law who was caring for her, it was (the disease) progressing at an increasing rate (noticable change week to week). You helped the extended family pull together and share caregiving to give my sister-in-law break time. You can take us off the list to receive the newletter. Thanks, Joan skos481020

Show the support we are known for and send these ladies a note to let them know you are thinking of them.


Comments in our email:

From jmueller@lightstream.net

Thanks for the info. I am not on aol. I have a power mac that I use at school and can get on the internet. Listen, I am enjoying the three e-mails I got about other caregivers and their concerns and solutions. How often do you do that. Have you ever considered organizing the AD caregivers to march on Washington to get better tax breaks for AD familys. We should NOT fall under the 7.5 medical deduction. AD can financially break a family. And that probably the way I'm heading. Thanks for listening and keep in contact. Jane Mueller - Cleveland, OHio jmueller@lightstream.net


From Azuree1650

Thank you Karen and Jamie for the "Untangled" version of Issue #5. No complaints here, I think you are both doing a fine job! I most appreciate your time and efforts. Sincerely, Charlene (aka Azuree1650)


From Cape1313

I thought that it may be easier to email you and then you can answer at your leisure. Let me introduce myself. I'm Carl Ritchie and I live outside of Mobile, AL, and I moved in with my parents on the first of Feb. Both are in their mid to late 70's. My questions are how to handle his obesssive behavior. He is a control person and my Mother has gone along with this for 55 years mostly not upset things. So he has to be in control. The problem is that he has let a lot of things go( painting, patching, etc with the house), and these things need to be attended to. He wants us to ask for his permission which would not be a problem except for 2 things--he forgets, and in many cases does not care if some of these things are done so he will not give his permission. I might add that he is most likely a worse case when it comes to cooperation and aggravation if one does not do his bidding so to speak. My question to you is, How do we handle this? If we do not do as he wishes he goes off the deep end. Do we just do the things that must be done and let him be upset. I have tried getting him involved, but he is not interested so he will not cooperate. He has always been a fanatic, almost a perfectionist to the nth degree. His other obesssion is the truck. Not a day or hour goes by that he does not try to get into the truck. We have decided to sell it and buy a smaller car that Mother can handle. I don't know how he will handle that. I've thought about moving the truck to a neighbors where he can not see it. My concern is for the truck and his safety. He has threatened to burn it up. If he can't have it no one will. We have to take his threats seriously. Sooner or later he will break out a window or do some kind of damage. I found a tire tool last night laying beside the truck although it does not look as if he used it to break end. Just when we think we have locked up all of the tools, etc. he finds another one. I would appreciate any insight or suggestions you have in these areas. Thank you for your time and help Carl (Cape1313)
Note from editors: If anyone has dealt with this and has some suggestions please send email to Carl or to us to be published in a future newsletter.


From Berrycraft

Thank you so much for the newsleter. I really have gotten some much needed information and strenghth from it. My Dad has dementia and he has been declining for over 6 years. It seems he is in the final stages of this desease. The worse part of all is how much wosre it can get for him. I fear the worst part is ahead of us and that is sad considering the heartache we have already gone through. I find there are really not many people you can talk to about this either. Friends and family are supportive but their heart isn't in it like mine is. I am the caregiver and so I live with all of the guilt. It is nice to know there are others out there with the same heartache and really understand what this desease does to the family. Just when you think it can't affect you any more something happens and it brings it all to an emotional head again. Thanks for all your effort and hard work to put out this newletter. It is really appreciated. Thanks Shirley (Berrycraft)


From LCROWSHAW

I have just finished the first issue of your newsletter, and I cannot express how touched I am and moved by the wonderful people included in this project. I am beginning to believe that, although it is easy to feel alone, there are many, many people who care for and watch their loved ones deteriorate and slip away from their families. I hate this illness...and at times, I cannot bare to watch its wrath. My mother-in-law is like another mother to me. My husband is her baby; the last of her thirteen children. He is a professional firefighter and a Cardiac Emergency Medical Technician. He, his older brother, who is a police officer, and myself take care of her almost all the time. I have had to back off a little, because I was literally running 2 households. I begin my day at 7 am and was arriving home after midnight, when my mom-in-law was tucked into bed. My husband and I find it very difficult to leave her alone at night, although her Dr. has advised 24 hour care at this point. My husband's oldest brother, who is 55, has her durable power of attorney, and he refuses to believe this type of care is necessary; therefore, he will not write the check. We have 3 children (ages 14, 12 and 8), and they also carry a huge burden. The phone calls all day; at home, at work. Last year, she kept walking to my children's school and trying to take them out. Or she'd get into the school, and panic, or cry hysterically, and they would call me at work to pick her up, because she didn't know where she lived, or where the door was to leave the building. She routinely calls 911, when she wants to just talk to my husband. She has so many of children, but some don't want to deal with this, others only partially and still some do nothing. We are pretty burned out at this point. My mom-in-law was diagnosed about a year ago, but she was symptomatic as far back as 3 years ago. At this point, she is in the #6 category; severe cognitive decline. She is 73 years old. I apologize for dumping this on you, Jamie. I'm just hoping someone can relate to a situation such as this. Thank you for all you have done...I can't tell you how much I appreciate it. Fondly, Lori (LCROWSHAW)


From ecmick@msn.com

Please put us on that list--we do not have AOL. This is the first time we've had to deal with anything like this; therefore, we would appreciate all the help we can get. Our e-mail address is ecmick@msn.com . Thanks. The Micks Maureen and Erin


From Sha3711

I am Jamies ex-sis-in-law,and I get the Ribbon..It sure is informative! My pastors mother has AD, and I make copy and give to them...They need all the information, and want it too! I am only too glad to give them a copy of it to help them out. Thanks for all the help, and all the input that I know that goes into it!!! I am glad that you two are doing such a great Job. Sharron Barfield (Sha3711)


From MGOUIN@nmu.edu

I am interested in receiving the newletter and becoming part of the support group. My e-mail address is MGOUIN@nmu.edu. Thanks a million. Marty Gouin, Marquette, MI


From Leeann1032

I found your letter on online support groups, could you please forward them to me. I am trying my hardest to find out recent information on Alzheimer's being my grandmother was dx'd about 2 years ago. It would be very helpful to be able to talk with some one who is also experiencing the day to day pain of having to watch a great person deteriate slowly. Please place me on your mailing list for the Alzheimer's Caregiver Support Group. Thank You!! Lee Ann-- Leeann1032@AOL.com


There are folks out there who are getting this newsletter forwarded to them by friends and family. You may not know how to get to our AOL online support group which is sponsored by Better Health (Keyword: Better Health). On Tuesday nights we meet at 8pm EST in IMH Chat On Friday nights we meet at 10pm EST in PEN. Put these in your AOL Favorite Places and you'll always be able to find someone to talk to. Also if you know of anyone who would be interested in getting this newsletter please send an email to KMenges581.

See ya in two weeks,
Karen and Jamie

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