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The Ribbon - Care for Caregivers
Issue 19
October 2, 1998

Well, Fall is finally here. I hope everyone will stop for a minute, enjoy the changing colors, and find a blessing there.

This week we will feature the 3 Stages of Alzheimer's along with articles about Dementia.


The Three Stages of Alzheimer's Disease

It is difficult to place a patient with Alzheimer's disease in a specific stage. However, symptoms seem to progress in a recognizable pattern and these stages provide a framework for understanding the disease. It is important to remember they are not uniform in every patient and the stages often overlap.

Alzheimer's Disease (pronounced altz-hi-merz) is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking, and behavior. It is the most common form of dementing illness. More than 100,000 die of Alzheimer's disease annually, which makes it the fourth leading cause of death in adults, after heart disease, cancer, and stroke.

First Stage
2 to 4 years leading up to and including diagnosis

Symptoms

  • Recent memory loss begins to affect job performance: What was he or she just told to do?
  • Confusion about places: gets lost on way to work
  • Loses spontaneity, the spark or zest for life.
  • Mood/personality changes: patient becomes anxious about symptoms, avoids people.
  • Poor judgment: makes bad decisions.
  • Takes longer with routine chores.
  • Trouble handling money, paying bills.

Examples

  • Forgets which bills are paid and phone numbers that are called frequently.
  • Loses things. Forgets grocery list.
  • Arrives at wrong time or place, or constantly rechecks calendar.
  • "Mother's not the same---she's withdrawn, disinterested"
  • She spent all day making dinner and forgot to serve several courses.
  • She paid the bills three times over, or didn't pay for three months.

Second Stage
2 to 10 years after diagnosis (longest stage)

Symptoms

  • Increasing memory loss and confusion--shorter attention span
  • Problems recognizing close friends and/or family
  • Repetitive statements and/or movements.
  • Restless,especially in late afternoon and at night.
  • Occasional muscle twitches or jerking.
  • Perceptual-motor problems.
  • Difficulty organizing thoughts, or thinking logically.
  • Can't find right words--makes up stories to fill in the blanks.
  • Problems with reading, writing, and numbers.
  • May be suspicious, irritable, fidgety, teary, or silly.
  • Loss of impulse control--sloppy--won't bathe or afraid to bathe--trouble dressing.
  • Gains and then loses weight.
  • May see or hear things that are not there.
  • Needs full-time supervision.

Examples

  • Memory loss--can't remember visits even though the visitor just left.
  • repetitive movements or statements.
  • Sleeps often: awakens frequently at night and may get up and wander.
  • Perceptual--motor problems--difficulty getting into a chair, setting the table for a meal.
  • Can't find the right words.
  • Problems with reading,numbers--can't follow written signs, write name, add, or subtract.
  • Suspicious--may accuse spouse of hiding things, infidelity; may act childish.
  • Loss of impulse control--sloppier table manners: may undress at inappropriate times or in the wrong place.
  • Huge appetite for junk food and other peoples food; forgets when last meal was eaten, then gradually loses interest in food.

Terminal Stage
1 to 3 years

Symptoms

  • Can't recognize family or self in mirror.
  • Loses weight even with good diet.
  • Little capacity for self care.
  • Can't communicate with words.
  • May put anything in mouth or touch anything.
  • Can't control bowels or bladder.
  • May have seizures, experience difficulty with swallowing, skin infections.

Examples

  • Looks in mirror and talks to own image.
  • Needs help with bathing, dressing, eating, and going to the bathroom.
  • May groan, scream, or make grunting sounds.
  • May try to suck on everything.
  • Sleeps more.

Taken from Care of Alzheimer's Patients: a Manual for Nursing Home Staff, by Lisa P. Gwysher ACSW, Member, Committee on Patient and Family Services Alzheimer's association, pp. 25-27. The book is published by the Alzheimer's association and the American Health Care Association in 1985.


What is Dementia?

Dementia is the loss of intellectual functions (such as thinking, remembering, and reasoning) of sufficient severity to interfere with a person's daily functioning. It is not a disease in itself, but rather group of symptoms that may accompany certain diseases or physical conditions. The causes and the rate of progression of dementias vary. Some of the more well-known diseases that produce dementia include Alzheimer's disease, multi-infarct dementia, Huntington's disease, Picks disease, Creutzfeldt-jakob disease, and Parkinson's disease. Other conditions that may cause or mimic dementia include depression, brain tumors, nutritional deficiencies, head injuries, hydrocephalus, infections (AIDS, meningitis, syphilis), drug reactions and thyroid problems. It is imperative that all persons experiencing memory deficits or confusion undergo a thorough diagnostic workup. This requires examination by a physician experienced in the diagnosis of dementing disorders and detailed laboratory testing. The examination should include a reevaluation of all medications. This process will help the patient obtain treatment for reversible conditions, aid the patient and family in planning future care, and provide important medical information for future generations.


Many Conditions Cause Dementia

Alzheimer's accounts for more than half of all dementia, but as many as
50 different disorders can cause dementia.

Many can be treated by addressing the underlying condition. Here are some of the other causes of dementia:

  • Strokes:
    Diseases that affect blood vessels in your brain, such as high blood pressure or cardiovascular disease, can cause vascular dementia, usually from multiple small strokes. Controlling high blood pressure, stopping smoking, reducing cholesterol levels and treating cardiovascular disease and diabetes can slow vascular dementia.
  • Infections:
    HIV and AIDS, tuberculosis, syphilis and certain types of meningitis and encephalitis can cause inflammation in your brain, resulting in damage to nerve cells.
  • Medications:
    The most common drugs that can cause temporary mental impairment are sedatives, sleep medications and tricyclic antidepressants. But rarely, even some antibiotics can produce temporary symptoms of dementia.
  • Brain injuries and abnormalities:
    A serious head injury, even one that happened years earlier, can cause dementia. Brain tumors can also cause dementia.
  • Other causes
    Inadequate thyroid hormone (hypothyroidism), vitamin B12 deficiency, depression and alcohol abuse can also cause a decline in brain function resembling dementia.

Brought to you by Mayo Clinic February 1, 1998
Originally published as Medical Essay, a supplement to Mayo Clinic Health Letter, October 1996

Contributed by Suzzylist1


Alert!!

CONGRESS TO NEGOTIATE ALZHEIMER'S RESEARCH INITIATIVE

CHAPTER CONTACTS ARE ESSENTIAL

Calls/email/letters needed immediately (before October 5)

"Everyone needs to feel the heat." Those were the comments of one senator when asked about the chances of Congress passing the Alzheimer's prevention initiative.

The Senate Appropriations Committee recently voted to boost Alzheimer's research to over $400 million next year, $20 million more than the amount approved by the House Appropriations Committee. Now that both sides have acted, House and Senate lawmakers will have to meet to iron out their differences over how much should be spent on Alzheimer's research.

This is only one of hundreds of issues Congress must resolve before it adjourns in early October. There is a risk that the importance of funding an Alzheimer's disease prevention initiative will be lost in the last-minute flurry of activity.

House and Senate lawmakers will begin meeting within the next several days. While only a handful of lawmakers will take part in the conference committee that will develop a final appropriation recommendation, each will be listening to what their colleagues are telling them. The more they hear that Alzheimer's disease research is a high priority with constituents everywhere, the more likely they are to respond.

Contact your Representative and Senators immediately.

Tell them to support the Senate amount for Alzheimer's research when the Labor-HHS appropriations bill is acted on.

Remind them of the threat Alzheimer's disease poses as millions of baby boomers enter the high-risk age bracket.

Scientists have laid out an ambitious agenda to find a way to prevent Alzheimer's disease. They know what they need to do, but there is not enough money in the research pipeline to do it.

(If you are not sure who your Members of Congress are or would like more information about this ALERT!, contact Michael Splaine or Dee Dee Henzler at (202) 393-7737. This is the NM contacts, you may contact your local Alz Assoc and they will give you the information.

Contributed by Alzjane198


Happenings

If you have an interest in attending the "Gathering of Friends" in October, 1999 then you must hurry. Please send an EMail to both Russell363 and LIZA 513. They need to have an idea of how many are interested in order to start arrangements. The deadline for returning your surveys is October 31. That's only 4 weeks away. If you have not contacted them, please do so now.

Disclaimer: This "Gathering" is being arranged by a group of friends. It is not sponsored by Better Health or AOL, therefore, we ask that you not discuss it in any of the chats as their purpose is to provide support for caregivers not to do planning. Thanks for your cooperation.


October is National Alzheimer's Awareness Month. Won't you please join in with your local Alzheimer's Association in their fund raisers. Call and see what you can do to help out.


Special Requests

CKnox0911 is having surgery to correct some things to help with sleep apnea. Please keep her in your thoughts and prayers, also a note will help her have a speedy recovery.


In Passing: Those We Must Remember

From ASR4768 (dated 9-20-98)

My Grandfather passed away a week ago today from cancer and alzheimers.


E-Mail Box

From Datel123

I won't be able to remember everything I want to say but there were a couple of letters that I feel compelled to respond to. The first one was CKNOX0911 regarding her mother. I want her to know that in no way should she get any negative reactions from any of us regarding her feelings. If the truth be known I feel that if we deeply love that person, somewhere in our heart we all would love to take that road. It would be wonderful to hold the person you love so much and allow them to go peacefully from this earth, especially when we know the long road to be traveled before that journey ends. As to the money, good for her in saying it isn't important. She is so right, money is nothing, people are what is important and if you had access to all of the money in the world there is nothing available today that would halt the progression of this horrible disease that is so slowly taking our loved one from us. Money can't buy a cure for this disease. I have always maintained that when we need the support of our families it is so sad to have it denied us. But I have the same situation. So many of us do.

To the lady with [I think] the father-in-law in the nursing home, my advice to her would be not to even consider taking him out of there. In the first place it is the Doctors decision when someone needs the care of a nursing home, not some well intended staff at that facility. One thing I know to be true because it happened with my husband. Just because they show some improvement at any one given time doesn't in itself mean that much when you are dealing with Alzheimer's. When John was first admitted to the home he was totally out of contact with reality. After a few weeks of a structured lifestyle of doing the same thing at the same time every day, he seemed to be his old self again. That's when I really caught heck from the couple of people who cared enough to go down there. Why there was nothing wrong with him. He didn't need to be there. How selfish I was, and why didn't I bring him home? Well, this good period was just that a good period for a short while. The problem is that they were never there long enough to observe anything but that small good period. AZ. Patients can fool a lot of people, a lot of the time unless you actually spend enough time with that person to see the difference.

I know there was a response to another letter so I need to pull up the newsletter again and read it. Cabbage Head can't remember anything today.

Dean


From Datel123

A response to BDREF. Bless her heart, bless all our hearts that we should mention the dreadful word Alzheimer's to any of our well intended friends or family members. Why they can find more things to do and places to be than Superman. I have repeatedly said that no one wants to hear about my AZ. Husband, they don't want you to ask anything of them and they sure don't want a discussion of the subject. I had planned a trip this spring to fly home and see my parents. My mother is in a nursing home and it wasn't a good time to leave John as I am the "ONLY" person he has in his world. But I had decided out of the guilt being placed on me to go. About a week before I was to leave I was talking to my sister who lives there and she requested that I not discuss my husband when I got there. Well, to make a long story short, I didn't go, I stay in close contact with my Mom by phone, cards, etc. I got a new unlisted phone number and haven't talked with her since that day. I had just been through the year from Hell and was still in it and I don't need or want any of my family that hasn't lifted one small finger to help me in any way giving me advice. I have always maintained that my only daughter who turned 31 this year lives on another planet from the rest of us. She floats around somewhere in space, but it sure isn't in the world I live and struggle every day to just get through that day. My prayer every morning is "Dear God, please keep me healthy and well so I will be able to care for John" Well we all know that my sister is sharing the same space as my daughter. I get so frustrated with people who think that when they are placed in a nursing home that you have finished your job. Its only started and there are days I think it is much worse. The days he manages to find the phone number and calls 30 times in one day. Begging and crying, they learn what works and I would never answer the phone directly anymore, I let the machine pick it up but when he is on that phone begging you to tell him why you no longer love him and go to see him, you just fall apart. You can count on both hands the days since May15,1997 that I have left there without crying. Some days the nurses won't even let me go out to my car and drive. At first for about six months I went every single day. The nursing facility he is in is about 17 miles from my home. It sits on the Gulf and is absolutely beautiful. It is a Methodist home but they graciously allowed Baptist to be there. I was falling apart both mentally and physically so I now go every other day and no matter how much you go, how long you stay, it will never be enough. I am finally allowing myself the wonderful privledge of getting away for seven days week after next. I don't know how it will go, I know I will have to use the phone a lot, and yesterday I thought about making a tape for each day I am gone and let the nurses play it for him.

I am determined to have this time for myself. I have to. I won't be any good for either of us unless I rest my mind and body from the stress. Gosh, I forgot, we don't have any stress, what on earth was I thinking. I must have accidentally fell on to that other planet.

So just tell her to follow her heart and she will never be judged by any of us for anything. Isn't that the purpose of this group? We all have to find what will work for us as individuals and it won't work the same for anyone else, but we are not here to judge anyone. We are all in this together and with the grace of God and friends such as yourself we will make it.

Dean


From Datel123

I just thought I was finished with all of my well intended advice. This is to Betty. The dear lady that made the statement that as her mother was in a nursing home she no longer needed any support. Now as much or more than ever will she need the support and love of a support group. As I said before placing them in a nursing home is just the beginning and I promise you there will be days that you are so entrenched in still being a caregiver that you will almost beg for support from anyone who will listen and not judge. There will always be a problem, believe me that only a loved one can address. Please don't discontinue the newsletter and all of these dear people who give so unselfishly of their time and knowledge to us, asking nothing in return.

Dean


From SSabel2884

Reply to CKnox:

I was greatly moved by your letter in The Ribbon. I am the only child and caregiver to a mother in Stage 3 of AD. It bites.

Re your problems with your sister-- (sometimes I'm really glad I'm an only child) I don't know what to say except is your mother's care good? Can you make an unannouced visit to the nursing home to find out? Is your mother's trust being used for her care? If so, blow off all the other stuff. It only makes you feel worse about a bad situation.

Re the euthenasia issue, I'm on your side. You will probably hear a lot of negatives, but I know that if I'm ever diagnosed with AD, being an unmarried only child with no one to take care of me the way I'm caring for Mom, I'd have to go chat with Dr. Kervorkian. Legally, however, you can't do anything except enforce her living will if she has one. It would be worth a phone call to your mother's attorney to find out if she has one and if your sister is 1) the medical power-of-attorney and 2) enforcing your mother's wishes.

Best of luck to you. Please reply if you think further conversation would help.

Shannon


From Bubbierg

When I first attended a support group, I found myself resenting an elderly gent caregiving his wife. I was so miserable and he seemed to be coping so well, and even enjoying being a better husband than he had been in the past. He hardly had time to attend because he was so busy chauffering other elderly friends to their appointments.
I hope my fellow caregivers won't resent me. Even tho my 71 year old husband has steadily deteriorated, eventually I settled into a state of acceptance and serenity, and Ed and I are experiencing a special kind of joy. I don't think about the future problems any more because I have done all the preparations possible. The Day Care center he attends 3 days weekly is a blessing and I am truly respectful of the special talents and cheerful attitudes of the aides. His anti-depressant medication is another blessing. So is The Ribbon.

Last week we enjoyed a lovely cruise thru Canada and New England. One of the couples at our table was Japanese with very little English. They were so grateful to my husband for his attention and smiles. They had no idea that he was telling them he was the captain of the ship, and other fantastic inventions.

About a year ago, an insensitive person told me she had dined with a woman whose dementia was quite severe, although she still looked lovely. The speaker said, "If ever I am in such a pathetic condition, I hope my husband will not take me out in public."

I can't forget her remarks. Sometimes I wonder if it depresses our dear friends to see this tragic deterioration.
But my husband and I accept and initiate many social and religious opportunities. He often says and does irrational things. I never think of him as degraded or embarassing, and it seems to me that all, when they understand, respect him and are happy to help. My responsibility is his happiness, so we just keep on going!


From jwr50@teleclipse.net

Hi Jamie, thought I would send an e and let you know that we have been
at UAB with Jim's new Mom, I hate the words step-mother, Mavis had surgery and we have been spending time at the doctor's office, hospital,all types of medical trips. Uncle Jay was released from UAB Doctor a week ago Friday and we had to go back the next Sunday and stay through Monday when Jim's sister and husband came from Va. I started reading my back issues and came across the one on nursing home, I need to add to this, I researched and found out that Medicaid will not pay to hold the room if the client is admitted to a hospital some supplement insurances will pay a percentage but some will not pay anything towards holding the room, the cost in Roanoke is $97.00 a day and this has to come out of the Guardian's pocket, also Medicaid only allows a $30.00 a month allowance which does not cover all the personal needs and this comes out of the pocket of the Guardian, $30.00 in cash value is worth a penny when it comes to clothing and personal items. A person qualifing for Medicaid their assests has to be less than $2,000.00, this means in a sense poverty unless family members help in expenses such as clothing, treats, personal items, in some cases as ours "no help" from Family and again this will left up to the Guardian. A pre-planned funeral arrangement can cost will over $5,000.00+ and advice have a clause that states if the funeral home goes bankrupt there will be a re-embursement of 100% , this does happen, and also keep up with Medicare/ Medicaid laws for they are changing drastically, more cut backs are expected by Nov. of 98, and more changes through the next three years. How is your family, husband, granny, and you, I hope all are doing well, I hope today's trip to UAB will be the last for awhile, I am so tired of hospitals, and doctors. I have found out the old saying "you are never to old to learn" is the truth!!

HUGS, Carol


From MDunn22151

I wanted to take this opportunity to say "thank you" to you and Jamie. The Ribbon is a real God send. Being an only child our chat groups give me the feeling of having an extended family. I don't have much to say during the chats, but I do observe and absorb. My mother celebrated her 90th b/d, healthwise she can be me working but her mental stability really gets to me. I wanted to know if there are others (mainly children of ) going through the someone else is always taking something from them..money, kitchen items, clothes; and how are they handling it. t trying times are when Mom calls me (she still lives alone, but not for long) and expects me to know exactly what is going on in her head. Had DMV take her license to drive away, she continued to drive; finally she "totalled" her car and walked away w/o a scratch, thought that was the answer to my prayers; now she walks and gets lost in unsafe areas. Talking with family now about moving her in with us, but I know it will be a fight. If anyone has suggests on how to make this a smooth transition PLEASE let me know. Blessings to all of you.

MDunn22151 (aka Mary)


I think our readers have given us plenty of food for thought. There's more email to be included in the next issue. I'm happy to announce that Karen is feeling better after fighting pneumonia. Thanks to all of you for praying for her so that I can have my partner back. I missed you Karen.

Hugs and peace,
Karen (KMenges581)
and
Jamie (DRMOM1955)

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