Volume 1, Issue 4 - The Ribbon Newsletter

Issue 4

A congratulations is in order for our Friday night chat on Feb. 27. We had a high count of 42 people. Our hosts and members did an excellent job of keeping up and helping out newcomers as well as the regulars. Now if we can all get our eyes to stop scrolling we'll do just fine. WAY TO GO GROUP!!

Now for our feature article:
Legal & Financial Issues

Barring some treatment breakthrough, an Alzheimer's disease diagnosis means that over time, affected individuals become increasingly less able to manage their own legal and financial affairs. They need to have others assume these responsibilities from them. But that's easier said than done. Management of one's own legal and financial affairs is a basic right of all competent adults, and all 50 states and the District of Columbia have laws protecting individuals from the seizure of these rights by others. Fortunately, all 50 states and the District of Columbia also recognize that in certain situations--Alzheimer's disease and other dementias and brain injuries--people may become unable to exercise competent control over their own legal and financial affairs, and they allow control of a demented individual's legal and financial affairs to pass to another person. In Alzheimer's disease, this transition is never easy for either the affected person or for the person who assumes legal and financial control. Here's a brief guide to what people recently diagnosed with Alzheimer's and their caregivers should know.

When to Plan the Legal and Financial Transition

Ideally, the time to plan is as soon as possible after the Alzheimer's diagnosis, when affected individuals can still make legally competent decisions for themselves, and know where their assets are located. Of course, a diagnosis of Alzheimer's disease is very upsetting, and in the immediate aftermath, planning for the affected person's eventual legal and financial dependence on another may not seem a high-priority task. But the sooner you and the person with Alzheimer's tackle the legal and financial aspects of the disease, the better. You can wait until the affected individual is legally incompetent, but if you do, finding the person's assets may be difficult or impossible, and assuming control over the person's legal affairs becomes much more problematic--and expensive.

Durable Powers of Attorney

If you want to give another person the right to make some legal or financial decision for you--for example, signing a contract while you're out of the country--you execute a legal document called a "power of attorney." Power-of-attorney documents are typically short-lived and very specific, empowering the person you designate to act on your behalf only in a limited capacity. However, if there is reason to believe that you might become mentally incapacitated in the foreseeable future, all 50 states and the District of Columbia allow legally competent adults to execute legal documents called "durable powers of attorney," which give the designated decision maker--known as the "agent," or "attorney-in-fact"--broad power over the affected individual's life, for example, the power to place the person in a nursing home and use the person's assets to pay for long-term care. Durable powers of attorney have advantages and disadvantages: On the plus side, compared with other ways to assume legal and financial authority over another, durable powers of attorney are relatively inexpensive to execute and do not require court action or court supervision. In addition, because they bypass the courts, the affected individual's financial affairs remain private and do not become a matter of public record. On the minus side, durable powers of attorney are not court supervised, so there is more potential for abuse by the attorney-in-fact, which may be an issue in families where loved one's disagree about what's best for the affected person. Durable power of attorney documents may also include specific instructions about how the affected individuals wants to be cared for, and a "living will" outlining advanced directives about end-of-life medical treatment. Most experts in the legal aspects of Alzheimer's disease recommend durable powers of attorney as the easiest, most efficient, and cheapest approach to a caregiver's assumption of control of the affected individual's legal and financial affairs. However, the person creating the durable power of attorney document must be competent at the time the durable power of attorney documents are signed, so they must be drafted fairly soon after the Alzheimer's diagnosis. Laws governing durable power of attorney agreements vary from state to state. Software programs abound for creating them, but they may not meet the specific requirements of your state. Your best bet is to have an attorney experienced in elder law draft your loved one's durable power of attorney, or review any durable power of attorney you draft.

Conservatorships

If your loved one becomes legally incompetent and has not executed a durable power of attorney, in order to assume control over the person's legal and financial affairs, you need a court's permission in the form of a "conservatorship." You become the "conservator" and your loved one becomes the "conservatee." Anyone--a spouse, relative, or friend--may petition the court to appoint a conservator for an individual who appears to be incompetent. Once a conservatorship petition is filed, the court assigns an investigator to assess the proposed conservatee's competence, and interview any individuals who may have an interest in the conservatorship--the proposed conservator and other family members--to assess the situation. The next step is a hearing, where the investigator reports back to court, and a judge decides whether to grant the conservatorship. If the court grants conservatorship, the judge appoints the conservator, and specifies the conservator's powers and reporting responsibilities to the court. Conservatorships have advantages and disadvantages: On the plus side, they are court supervised, so there is less potential for abuse by the conservator than there is in durable power of attorney arrangements where the attorney-in-fact is neither court-appointed nor court-supervised. A conservatorship might be a good approach in a situation where family members are in conflict and cannot agree on how to care for the affected individual and deal with the person's assets. On the minus side, conservatorships can be very expensive to establish because the process requires considerable court and investigator time, and family members may want to hire attorneys to represent their views. Laws governing conservatorships vary from state to state. Software programs may help you petition for a conservatorship, but they may not meet the specific requirements of your state. Your best bet is to have an attorney experienced in elder law work with you to establish a conservatorship over your loved one with Alzheimer's disease.

How to Find a Good Attorney

Only a small proportion of attorneys are familiar with the range of issues now increasingly called "elder law." These issues include:

Execution of durable powers of attorney.
Managing the process to obtain conservatorships.
Dealing with Social Security, Medicare, Medicaid, and long-term-care insurance.
Tax and estate issues.
Nursing home issues.

The best way to find an attorney familiar with elder law is by word-of-mouth through contacts in the Alzheimer's community: your local Alzheimer's Association organization, or your Alzheimer's support group. In addition, other organizations in your area that deal with the elderly may be a good resource. Finally, you may be able to obtain useful information from the National Academy of Elder Law Attorneys, 1604 North Country Club Rd., Tucson, AZ 85716; (520) 881-4005; www.primenet.com/elderlaw

How to Find the Affected Person's Assets

The sooner you assemble the affected persons assets, the better. In the early stages of the disease, the person may still recall where financial documents are located. As the disease progresses, people forget where their financial information is located, and you may have considerable difficulty assembling it. Financial items include: Cash Jewelry. Collectibles: art, coins, stamps, antiques, etc. Other valuables: cameras, furnishings, items in storage, etc. Bank account records. Pension and Social Security documents. Insurance policies. Safe deposit box keys. Stock, bond, partnership, and mutual fund ownership paperwork. Real estate deeds. A will. Inheritance documents. Cemetery plot documents. And any other business or financial assets. If the person does not recall where all pertinent financial records are located, then you're faced with finding them. The rule of thumb is: Debts find you, but you must locate assets. To find most financial assets, look for paperwork or notices that arrive through the mail: bank statements, brokerage statements, investment reports, interest and dividend checks, tax information, notices that rent is due on safe deposit boxes or storage units, notices that taxes are due on real estate. Banks usually do not release information about customers, but if your loved one has banked at the same institution for many years and the staff there know your loved one and you, they may bend the rules a bit and reveal all of the person's accounts, investments, and safe deposit box information. To find cash, collectibles, jewelry, and other real goods, look around. Check desks, closets, under beds, in garages, etc. Most people do not hide valuables all that securely, but if you have reason to suspect that your loved one has valuable well hidden, do a more thorough search: Look through books for hidden compartments made by cutting out the center of pages. Look in the pockets of old clothing in closets. Check for cuts in furniture linings that might lead to caches. Finally, when packing up a loved one's home, do it slowly, and examine every item. Then examine the empty home for loose floorboards, or other places valuables might be hidden.

Comments From Our Members

RE: NIH Funding Freeze From edythann@erinet.com

Actually I believe this is an old alert. At the time I heard it I along with several others have written several letters. I e-mailed the President, First Lady, the VP, my local congressmen and anyone else I could think of ( I am going to include the letter I wrote the President at the end of this letter. It is my understanding that the NIH budget is going up now by more than 7% to an all time high of $15 Million dollars. Unless of course everyone has changed their minds. I have not left my e-mail campaign at though. I am still writing government officials at least two e-mails a week. I am sending them to members of the sub committee on aging, the President, VP, the First Lady and anyone else I can think of. I am always mentioning the need for research for a "cure", the need of affordable day care, respite for the caregiver as well as hands on training and the need for knowledge. I urge everyone to write and keep the government aware of our needs. I do want to say this. You most generally will get an auto reply back. Please do not discourage you. Your e-mail may not be selected to be read by the person you sent it to but it will be noted and the subject matter will be counted. So even if the President for instance does not read your e-mail, he will be informed he received x numbers of e-mail on Alz. I would like to believe and do believe it is all those letters sent to the President which brought him to mention Alz. in his state of the union address and help increase the budget to NIH.

Edyth Ann
edythann@erinet.com
ICQ # 2665330
AOL Buddy Bublehead2

Dear President Clinton,

I would like to introduce myself and my family to you. I am a 43 yr. old mother, wife and care giver to my mother-in-law who I refer to in my writings as Milly. Milly is the subject of concern that I am writing to you. You see Milly is entering the End Stage of Alzheimer's Dementia. We had her diagnosed in 1990 with Alzheimer but she had been suffering from this disease as far back (this is my opinion) as the mid to late 1970's. My family and I have been caring for her at home for the last 6 years. Our family includes along with Milly and I, my husband (Milly's son) and our two children that are now in their teen years. Caring for Milly while keeping her as a full family member has been a real challenge and has required everyone to make adjustments as Milly, because of this disease, has not been able to make any adjustments on her own. Our goal is to keep her at home not as an invalid patient, but as a family member. We treat her and her abilities as "normal". Milly's friends and her family have mostly abandoned her. She has not seen or heard from her sisters since 1990. Her only daughter sees her about once every other year. Her oldest son sees her only at Christmas time. She has lived in this same house since 1951 and only one of her neighbors comes to visit her or offers any help. This is not uncommon though when you are talking about a family member with Alzheimer. Both of Milly's parents suffered from Alzheimer type Dementia and about a year ago I was told that her oldest sister also has the same thing. She has one other sister that is younger and we are waiting to see if she develops it. The Dr. told me when Milly was diagnosed that her children have a better than 50% chance of developing it. It is one of my biggest concerns that some day my husband may also develop this disease. My worst nightmare is that some day my children may develop this disease. It is beginning to look like Alzheimer's will be my life's work. The biggest hope I have for my loved husband and children is the research that is going on today. Today I am told that 4,000,000 million American's are suffering from this disease and aprox. 70% of them are being cared for at home. In the future we are looking at a possible 14,000,000 American's suffering with this disease. Without an effective "cure" or treatment these people are going to be putting a tremendous strain both emotionally and financially on the American people. The cost of caring for these people alone is enough to totally bankrupt the Medicare/Medicaid system. I am very fortunate that I have the training and expertise to care for Milly at home. Most family's are not this fortunate. Many do not feel that they are capable because of the lack of training, knowledge, adequate support, financial and/or personality of caring for their Loved One. There are many of these people that feel that they can not place their Loved One's in a nursing home or other care facility for a variety of reasons both real and not. This is only going to become a much larger problem in the future effecting all Americans and our society. There are many things that a caregiver and our society needs to be able to deal with this devastating disease. They need knowledge and education to be able to effectively deal with the Loved One with Alzheimer's. They need regular support for respite, venting and exchange of ideas and care giving knowledge. They need training as to how to effectively care for their Loved Ones. The thing they need most is a "cure" for the future of our Loved Ones who are not yet effected with this disease but may very well be in the future. I am not sure if you ever get on the net and look around but if you do I would like for you to check out one of my favorite spots for advice, knowledge and support. You will find many courageous and heroic people here, some are caregivers like myself and there are many other professionals in the field of Alzheimer's on this list too. The site is located at http://www.adrc.wustl.edu/alzheimer you may view the post of these wonderful people by going to visit the Archives where you may view the different post of many to get some insight into the needs and struggles in the life of those who are involved with the lives of our Loved Ones with Alzheimer.

Edyth Ann
edythann@erinet.com

From Poppybenny

Yes I agree that it is terribly important that all of us write or call regarding this matter. I have written my letter and I certainly hope other's have as well. I hope my letter will help this most important matter. Here is a copy of the letter I wrote.

........................................ Dear Mr. President, RE: Funding for Alzheimers Disease especially Medical Research!!! Funding For: The National Institute Of Health Please continue funding for Medical Research for Alzheimers Disease and please do not cutback its funds as research for this Disease so needs to be continued. I hope you will not consider to freeze funding for The National Institute Of Health. No one even you Mr. President is free from getting this most dreaded disease. If you ever went to a nursing home or saw people in the end stages of this disease or have had a loved one die of this horrid disease then you or no one could ever vote to FREEZE funding. WE MUST find a cure for this disease as the statistic's are getting higher and higher for the amount of people who will end up with this most horrendous disease. So again I say Mr. President I hope that you will not allow funding for Medical Research to be discontinued. I know only too well what this can do to it's victim and family members. My Father-in-law died of this disease and my Dad has recently been diagnoised with this disease. I thank you kindly for giving this matter your immediate attention. Carol Goldberg

Editor's Note: I found out through a newspaper article that you must include your name, address, and phone number in your e-mail or other correspondence to our representatives in Washington. It is not given as much attention if you do not. Please make a note of this for any of our future mailings.

From Currby1

you are doing a wonderful job with the newsletter. i don't make the chats too often and i enjoy reading this and hearing from people. it is a comfort to know there are others out there going through what i am going through. alzhiemers is a sad sad disease. my mom is alive but she is not in her body anymore. all my childhood memories are locked up inside her never to be discussed or laughed about again. you want it to end but you don't.....torn all the time. again thanks for taking on the newsletter. i do look forward to it and if anyone wants to e-mail me to chat feel free. i can use all the suggestions and cheering up i can get. laura

From LIFesence

Just wanted to drop you a line and thank you for the news letter. It is my first and I found it very informative and loved the Caregiver's Bill of Rights. I don't know who is responsible for the idea of The Ribbon but hats off to whoever it was. I am new in the group and find the chats so helpful and fun at times..Thanks again and please extend my appreciation to the others as well. Beth aka LIFesence

From TALLY98

Loved newsletter #3, especially the article on "The choice to care at home". This is exactly what my parents have elected to do with Gram and Gramps. Gramps has had Alzheimer's now for 8 years and Gram is getting to the point where she can't take care of him by herself and she says: "I'm at my whits end." He takes his "Aricept", but I really don't think it's working that good anymore. He still remembers who everyone is, can eat by himself, can take a bath by himself but he has to have help going to the bathroom for some reason. He sleeps constantly and here lately, he's been a real worry wart about everything---lawn, leaves, house, garage, and especially bills. Once their moved in with Mom and Dad then he won't have to worry about any of that. As of right now, he's sleeping on a matress on the floor. He used to sleep in bed, but kept falling out and the one time he hit his head on the nightstand. Gram isn't too sure what's gonna happen at the new place because she still wants him to sleep on the floor, so as to not hurt himself. But, then Mom says she's gonna get a twin bed with side rails to protect him from falling and Gram said that it might not work out too good because he gets up in the middle of the night to go to the bathroom. If anybody has a solution to this little problem, e-mail me. TALLY98@aol.com Mom and Dad have been thinking of moving for quite sometime. Just the other day, they both came over to tell my husband and I that they were moving and Gram and Gramps were gonna live with them. They got a huge condo; Gram and Gramps will sleep on the first floor and they'll have their own bathroom. Mom doesn't work, so Gram and Mom will both be there to watch over Gramps, as he's starting to show signs of wandering. The rest of the family thinks it's the best thing to do and are happy for them. Besides my Gram, Mom, my one Aunt and myself----it seems that my other Aunt could care a less about helping out. She rather make excuses and stay home with her own family, than help Gramp--- her own father. I don't know, I suppose there's a bad seed in every family?! Once again, thanks for the newsletter. Kelly Jo :-)

From PoppyBenny

Hello, I could not help writing to you and telling you how wonderful your newsletter is. I find it extremely helpful. I also can feel all the love that goes into writing this newsletter. My Dad was diagnosed with vascular dementia of the alzheimers type in July of 1997. My mom has severe osteoporosis and is his primary caregiver. I happen to live within 20 minutes of their home but my husband and I have decided to have them move downstairs from us sometime this summer. Luckily we have a duplex and we live upstairs, so they will move in downstairs and have no steps. We will feel more at ease haveing them closer to us where we can also be of more help to them both. Hopefully when they move here maybe I can get my mom to come to one of the support group meetings online. I really think this might be helpful to her. I am quite familiar with alzheimers disease because my Father-in-law had this horrid disease and since passed on. I cannot beleive it is happening again now to my Dad. I wrote some letter to the President telling him not to discontinue funding for this most needed research. I know if any of our congressmen had a family member with this horrid disease they could never allow funding to be discontinued. I would love to know how I would go about getting some of these ribbons. If you can please e-mail me to let me know. Thank you again so much. WithLove and Peace Carol e-mail adress - Poppybenny@aol.com

In Passing: Those We Must Remember

From BHostRidl

Mom passed away Friday night at 11:00pm. They didn't think she would make it past last Monday night but she held on until Friday. I received this letter this morning, one of our members - Mably - lost her mother in law. They had been struggling with this situation since before the Christmas holidays. She has two teen sons and one darling little 7 year old girl. Please remember this family in your hearts and prayers. thank you all, BhostRidl

Notes from Editors: In the chats lately a lot of members seem to be facing the question of whether or not to use an EG (feeding) Tube. What we would like to do is to have you the members offer your comments pro or con on this subject. Give your reasoning behind your answer. If you have been faced with it then tell us why or why not you decided the way you did. We feel that for someone facing this decision reading about others experience will help them make a wise choice.Please email your comments to KMenges581@aol.com We would like to do a newsletter full of your comments soon so please get them in as soon as possible. Thanks.

Helpful Links

SeniorLaw Home Page
Elder Law Section Internet Links
Commission on Legal Problems of the Elderly
These are all on law and legal issues. You will find many more links inside these pages. More links will follow in future issues dealing with Senior Law.

You have all been so kind to send in comments and articles. We would like you to know that these are saved. If yours should not appear here don't get worried. We will be using them in future issues, so keep those cards and letters coming in folks.

Until next time,
Karen and Jamie