Volume 2, Issue 18 - The Ribbon Newsletter

Volume 2, Issue 18
September 17, 1999

I'm sitting here watching the news about Hurricane Floyd. I'm hoping that all of you who are in the path, or those who will get the tornadoes and floods, are safe. We worry not only for you, but for the extra agitation this causes your Loved One. We are sure it is taking it's toll on you and we want to let you know that we are concerned and you are in our thoughts. Please let us know that you are safe as soon as you can.

Today we will continue with Medical Problems. This got lost somehow in my sending to Karen last issue.

Medical Problems

Pain

Families ask if people suffer pain as part of a dementing illness. As far as is known, Alzheimer's disease does not cause pain and multi-infarct dementia causes pain only very rarely. People with dementing illnesses do suffer pain from other causes, such as stomach and abdominal cramps, constipation, hidden sprains or broken bones, sitting too long in one position, flu, arthritis, pressure sores, bruises, cuts, sores or rashes resulting from poor hygiene, sore teeth or gums, clothes or shoes that rub or are too tight, and open pins.

Indications of pain include a sudden worsening of behavior, moaning or shouting, refusal to do certain things, and increased restlessness. All signals of pain must be taken seriously. If the person cannot tell you where or whether she is in pain, a physician may have to search for a specific site and cause of the pain.

Falls and Injuries

People with dementing illnesses may become clumsy; they can fall out of bed, bump into things, trip, or cut themselves. It is easy to overlook serious injuries for several reasons:

Older people are more vulnerable to broken bones from seemingly minor injuries
They may continue to use a fractured limb
people with dementia may not tell you they are in pain or may forget they have fallen.

A bruise may not be in evidence for several days. Even minor head injuries can cause bleeding within the skull; this must be treated promptly to avoid further brain damage. Check the person routinely for cuts, bruises, and blisters that may be caused by accidents, falls, pacing, or uncomfortable clothing. Feet and mouth are frequently overlooked sites of pain. Changes in behavior may be your only clue to an injury.

Pressure Sores

Pressure sores (decubitus ulcers) develop when a person sits or lies down for prolonged periods. They can be caused by tight clothing, swelling, or inadequate nutrition. Older people's skin may be quite vulnerable to pressure sores. Pressure sores begin as red areas and can develop into open sores. They are more common over bony areas: heels, hips, shoulders, shoulder blades, spine, elbows, knees, buttocks, and ankles. Fragile skin can easily be torn and bruised, even in routine washing. You must watch for red spots or bruises, especially over hips, tailbone, heels, and elbows. If any reddening appears, make sure the person does not lie on the spot. Continue to turn her so other sores do not form. Contact your doctor or visiting nurse. Prompt attention can prevent a minor bruise from progressing to something more serious.

Encourage the person to change position: Ask her to change the TV channel, go for a walk, set the table. Ask her to come into the kitchen to see if the cake is baking correctly or to come to the window to see something.

Pressure sores are always a risk in people who are no longer able to move or are bed- or chairbound. Develop a schedule in which you move the patient from one side to the other or change her position every two hours.

If the person does not change position enough, you can protect vulnerable areas. Medical supply firms sell "flotation" cushions that the person can sit or lie on. If the person is hospitalized, save the foam mattress from the hospital. There are air cushions, water cushions, gel pads, foam pads, and combinations of these. Select one that has a soft, washable cover and shields against spills and odors. Stores also sell heel and elbow pads (there are made of a synthetic sheep-skinlike material) that protect these bony areas. Use these in addition to frequent turning.

Dehydration

Even people who can walk and appear to be able to care for themselves may become dehydrated. Because we assume that they are caring for themselves we may not watch for the signs of dehydration. Watch for this problem especially in people who have vomiting, diarrhea, or diabetes, or are taking diuretics (water pills) or heart medication. Symptoms include

Thirst or refusal to drink
Fever
Flushing
Rapid pulse
Dry, pale lining of the mouth or a dried, inelastic skin
Dizziness or lightheadedness
Confusion or hallucinations.

The amount of fluid a person needs varies with the individual and with the season. People need more fluids during the summer months. If you are uncertain whether the person is getting enough fluid, ask your doctor how much the patient should be drinking.

Pneumonia

Pneumonia is an infection of the lungs caused by bacteria or viruses. It is a frequent complication of dementia, but may be difficult to diagnose because symptoms such as fever or cough may be absent. Delirium may be the earliest symptom, so pneumonia should be suspected when a person with dementia worsens suddenly. People who choke frequently or who are bedbound are particularly vulnerable to pneumonia.

Constipation

When a person is forgetful, she may not be able to remember when she last moved her bowels and she may not realize the cause of the discomfort that comes from constipation. Some people move their bowels less frequently than other people; however, they should have a bowel movement every two or three days.

Constipation can cause discomfort or pain, which can cause a worsening of the person's confusion. Constipation can lead to a bowel impaction, in which the bowel becomes partially or completely blocked and the body is unable to rid itself of wastes. You should consult a doctor or nurse if you suspect this. (A person can have diarrhea accompanying a partial impaction.)

Many factors contribute to the development of constipation. One important factor is that most Americans eat a diet high in refined, easy-to-prepare foods and low in fiber-containing foods that encourage bowel activity. Often when a person has a dementing illness or her dentures fit poorly or her teeth hurt, she makes further changes in her diet that aggravate the problem of constipation. The muscles of the bowel that move wastes along are believed to be less active as we age, and when we are less physically active, our bowel is even less active. Some drugs and some diet supplements (given to people who are not eating) tend to increase constipation. Ask the pharmacist whether the drugs they person is taking can cause constipation.

If a person has a dementing illness, you cannot assume that she is able to keep track of when she last moved her bowels even if she seems to be only mildly impaired or if she tells you she is taking care of herself. If a confused person is living alone, she may have stopped eating things that take preparation skills and may be eating too much cake, cookies, and other low-fiber, highly refined foods. It may be impossible to find out how regularly her bowels move. If you suspect that she may be getting constipated, you will need to keep track for her. Do this as quietly and unobtrusively as possible, so that you do not inadvertently make her feel that you are "taking over".

Most people are private about their bodily functions and a confused person can react angrily to your seeming invasion of her privacy. Also, keeping track of someone else's bowel movements is distasteful to many of us, and we tend to avoid doing it. These two feelings can conspire to cause a potentially serious problem to be overlooked.

When a demented person appears to be in pain or has a headache, do not overlook constipation as a possible cause. Bloating or "gas" also signals problems. In the midst of providing care for a seriously impaired person, it is easy to forget to keep track of bowel movements. If you think the person may be constipated, you may want to talk this over with the doctor. He can quickly determine whether the person's bowels are working properly, and, if they are not, he can help manage the problem.

Regular or frequent use of laxatives is not recommended. Instead, increase the amount of fiber and water in the diet, and help the person get more exercise (perhaps a daily walk). Most people should drink at least eight glasses of water or juice every day. Increase the amounts of vegetables (try putting them out as nibbles), fruits (including prunes and apples, as more nibbles or on cereal), whole-grain cereals (bran, whole-grain bread, whole-grain breakfast cereal), and salads, beans, and nuts she eats. Granola and other whole-grain cereals make a good snack.

Ask your doctor whether you should add more fiber by giving psyllium preparations (sold under various brand names, such as Metamucil). Do not use any such product without medical supervision.

Medications

Medications are a two-edged sword. They may play a vital part in helping the patient to sleep, in controlling her agitation, or in the treatment of other conditions. At the same time, people suffering from a dementing illness (and older people in general) are susceptible to overmedication and to reactions from combinations of drugs. This includes over-the-counter drugs, unguents, creams, and suppositories. A sudden increase in agitation, a slow stooped walk, falling, drowsiness, incontinence, apathy, sleepiness, increased confusion, leaning, stiffness, or mouth or hand movements may be a side effect of medication and should be called to the doctor's attention. Physicians cannot always eliminate all the side effects of the medication and at the same time get the needed results. You and your physician must work together to achieve the best possible balance. Many people will need behavior-controlling medications to help them through some phases of their illness. However, because these can cause serious side effects, including more confusion, they must be used cautiously. Behavior-controlling drugs are best used when they are targeted to specific symptoms such as sleeplessness, hallucinations, suspicions, and severe irritability. They do not work well for controlling aimless wandering or restlessness. Whenever the physician raises the dosage of a behavior-modifying drug, ask yourself if there are any nondrug changes you can make that might also help. Perhaps if you had more time to yourself, you could tolerate more restlessness on her part. Could you respond more calmly to her behavior or divert her beffore problems develop? Ask whether the drug can be given so that it has its strongest effect at the person's worst time of day.

Your pharmacist is highly trained in the effects and interactions of drugs. Some pharmacists now have special training in geriatric pharmacology. Much of the responsibility for medications, however, will fall to you. Here are some ways you can help.

Be sure that all of the physicians involved in the person's care know about all of the medications she is taking. Some combinations of drugs can make the person's confusion worse. You may want to take all the patients's prescription drugs and over-the-counter medications to your pharmacist and ask him to make up a card listing all of them. Ask the pharmacist if any of these medications should be listed on the patient's identificatin bracelet. Whenever the physician prescribes a new drug, ask him to review all the medications to see whether any can be discontinued. This will help reduce drug interactions. Ask him to start the new drug later if necessary. People with brain injuries like dementia often develop side effects at low or regular adult doses. Ask whether this drug stays in the body the shortest time and whether another, similar drug would have fewer side effects.

Ask what side effects to watch for. Side effects can appear even three weeks or a month after the person began taking the drug. By then, you and the doctor may not attribute new symptoms to the medication. Ask if there are any possible side effects that you should report to your doctor immediately.

Some drugs must be taken before meals, some after. Some have a cumulative effect (that is, they gradually build up their effectiveness) in the body, some don't. Older people and people with a dementing illness are especially sensitive to incorrect dosages, so it is imperative that you see that the patient gets her medications in the amounts and at the times the doctor specifies. If a medication makes the person drowsy, ask if it can be given at bedtime when it will help her sleep and not be given in the morning when she should be active.

Find out what you should do if you miss a dose or accidentally give a double dose. Your pharmacist can give you information about side effects and medication interactions.

Some patients do not understand why you want them to take a medication and may have a catastrophic reaction. Avoid arguing about it. Next time, tell the person one step at a time what is happening: "This is your pill. Dr. Brown gave it to you. Put it in your mouth. Drink some water. Good." If the person becomes upset, try again later to give her the medicine. Some people will take pills more easily if you routinely put each dose in a cup or envelope instead of handing the person the whole bottle.

Patients may fail or refuse to swallow pills. They may carry the pill around in their mouth and spit it out later. You may find the pills much later on the floor. Getting the person to drink something with the medication helps. If this continues to be a problem, ask the doctor if the medication is available in another form. Pills or a liquid may be easier to get down than capsules. Sometimes the pills can be crushed and mixed into food (applesauce works well). If you are not sure whether the person actually took her pill, find out from the doctor or the pharmacist what you should do. If pills are going on the floor, be sure that children or pets don't find them.

Never assume that a forgetful person is able to manage her own medications. If you must leave the person alone, put out one dose for her and take the bottle away with you. Even people with mild memory impairments and normal people can forget whether they have taken their pills.

When you are tired or upset, you may forget the person's pills. Drug stores and health food stores sell plastic containers with compartments labeled "Monday", "Tuesday", etc. Also the day can be separated into compartments labeled "morning", "noon", "evening", and "bedtime". You can tell at a glance whether today's pills have been taken. (This device is only helpful for you: do not trust the patient to be able to use it.) You can ask the pharmacist for easy-to-open pill bottles if the childproof ones are difficult for you to open. However, the childproof caps may keep the confused person from taking pills she should not have.

Store medications where the confused person cannot reach them.

This section has been written to meet the needs of families caring for someone at home. In a nursing home, there are fewer reasons for using powerful, and sometimes dangerous, behavior-modifying drugs.

Mace, Nancy and Peter Rabins. The 36-Hour Day. Baltimore: The Johns Hopkins University Press, 1981

Happenings

To All it may concern,

I would like to introduce myself. I am Edyth Ann and I run an on line support group for CareGiver's of Demented LOs (Loved Ones). I also have done some writing for the Alz. list (http://www.adrc.wustl.edu/alzheimer), The Northern Virgina Chapter of the Alz. Assoc. ( http://www.alz-nova.org/) as well as numerous other web spots. I have also developed a swt of stages for those with a Dementia and for the ones that are thier CareGivers and one place these may be located at is The Caregivers S.E.A. at http://neuro-oas.mgh.harvard.edu/sea/index.html

The main reason for me to contact you is not to blow my horn but to let you know of the latest project I have started. I am putting together a Dementia Quilt. I would like for CGs and/or family members of those suffering from a Dementia to contribute a square for this quilt. My goal is to have a min. of a million squares but I am hoping for much more.

These squares are to be 9" X 9" and made from cotton fabric. The info I would like on these squares is the LOs name, birthdate, type of dementia, the year of diagnosis and either a space left for the passing date to be added later or for the passing date to be recorded. These squares may be decorated if they chose to. Many are going to be having a picture of the LO placed on the square along with the info. The important thing to have on the square is the info.

I plan to make this quilt avalable for parades, conventions, demonstrations and other events meant to improve public awareness and education. I plan to construct this quilt in such away that it can be used to make the walls of a Dementia Maze. I feel that this will give it two effects. One make it more visiable as to how many are actually effected by these dementias but also help demonstrate at least in a small way how the LO is traped within the maze of dementia. I feel that this maze should only have a way in with no exit (of course we will have to let people out through the entrance).

The address these squares for the Dementia Quilt is to be sent is:

Edyth Ann Knox
P.O. Box 31046
Dayton, Ohio 45437

I may also be reached at edythann@netzero.net or mailto:bubblehead@xoommail.com

Please I would appreciate you posting this info and spreading it around to all involved with any of the dementias.

Edyth Ann
edythann@netzero.net

Ideas

Earlier tonight, an interesting discussion came up in chat...

MMMMKJ6: is there a better name to use other than "caregiver"?
BHostSTS: Lyn, if you want any sites, email me
Fjclex: that is what we are
TRACY1952: love ...giver...
BHostSTS: MM, you are a caregiver
Fjclex: that is the best name possible
Fjclex: for us
MMMMKJ6: i know but it sounds cold.
Fjclex: we give a lot of care
BHostRidl: MMMMM does it? sounds rather nice to me as compared to
BHostRidl: medical names we could have
TRACY1952: i agree rid
SweetDealr: Good Evening Everyone
SewingBabe: perhaps we need to think of a better name than caregiver.
BHostSTS: Hi Sweet, Welcome
Fjclex: that it the legal name even the govt uses it
Lynigib: O.K. thank you!!, Kind, and Giver, and alot more!!!! GIVER!! good word/
MMMMKJ6: I know but it's to close to caretaker
SweetDealr: thanks
BHostSTS: Welcome to Alzheimer's and Dementia Support Chat - Please feel free to join in!
TRACY1952: mmm somedays it is...
Fjclex: we give all we can with care
MMMMKJ6: kindgiver sound good to me
Weather91: Caregiver or Caretaker?
SweetDealr: congratulations everyone we made it thru another week
TRACY1952: lovegiver.....
SewingBabe: I heard the word "elder" lately to use instead of clients or residents or seniors.
Fjclex: we are also caretakers
MMMMKJ6: I know but I want a more attractive work
SewingBabe: Kind of like that one.
Weather91: relevant article about caregiving and caretaking....
Fjclex: we take care of these people
TRACY1952: care and love these people..
Fjclex: and also give them care
MMMMKJ6: i know 24 hours a day
Lynigib: We are now the Parents, nuturing!!!
Fjclex: can't be better than that
TRACY1952: 24/7
MMMMKJ6: give me a better name.
Fjclex: with me it is 24hrs. a day 7 days a week
TRACY1952: the name has nothing to do with it...it is what is in your heart
Lynigib: Mayrtar!(spelling)
SewingBabe: How about "nuturers"?

How about asking the subscribers to come up with a new name for Caregivers, then justify their ideas... It would make a great issue (regular or special edition), to see the different views people take on their responsibilities as caregivers.
Let me know what you think...
Kevin

From Weather91

E-mail Bag

From Ziogold

I have been getting the Newsletter for awhile but am not sure how to enter anything so this is my first try. My mother has been diagnosed with Alzheimer's for 6 years. My father is her primary caregiver and is amazing. He is also a well published author. He has just published his latest novel/memoire titled The Caregiver, published by Steerforth Press and available soon in bookstores and now via Amazon and BarnesandNoble. It is an informative, loving story full of helpful hints for caregivers based on his experience. It makes room for all kinds of Alz experiences and humanely embraces the challenges of being a creative and compassionate caregiver.

The publisher is sending a review copy to all Alzheimer's Assoc chapters but I thought Newsletter readers might like to know as well. Ask your library to purchase it if the hardcover price is too much. The Caregiver by Aaron Alterra

From MDunn22151

Hi everybody,
I haven't been in the chats very much lately, but my prayers and my heart is still with you all. My mother is doing as okay as possible with alzheimers and I am trying to maintain. Unforntunately, I guess I must have slipped sort of into depression but I feel much better now. I sought some professional help through a local hospital's SENIOR ASSESSMENT program. The people there really helped me tremendously. They thought I was very well abreast on alzheimer patients, the stages and how to deal with a lot of the necessities, I told them I have learned so much from the chat groups and how you all have become my "family". There are days when I do feel my case is so isolated. My mother was so vibrant and indepent and now that she can't live alone (although she believes she can) it is so hard for her to give in and for me to understand why she feels the way she does. Has anyone else experiienced a similar situation with one parent being so independent for over 20 years and then not willing to accept the fact that they cannot maintain things alone? I believe that's the hardest part for me so far. Again thanks for all the support you guys give, love and prayers to you all.
Mary (MDunn22151@aol.com)

From Supermsq

Wow-It seems like it has been forever since I have talked to anyone in the group. You all must have forgotten me by now.
We lost Mom on June 30.1999. No, it was her AD, or was it? I guess we will never know. There was no autopsy, there was nothing. She died in the shower in my dads arms. She never went to the coroners office, they just took her straight to the mortuary. I will never understand that. I saw her in the beginning of June for our daug 18th b-day and graduation. You know, she shared the same b-day as our Michelle, so it was really nice that the two of them got to share their last b-day together. In June when we saw her there was a terrible change about her. She had become nonverbal, but her eyes said so many things. There was a women who was helping my dad take care of Mom, this women is well, how would you put it, a little ...................... , She was and still is just a little too familiar with my dad. I realize that my dad needs companionship but this women takes it to the extreme. It's hard to explain. Anyway, enough of that; I just wanted to say hello and to thank everyone for all the support that they gave to me when Mom was ill. I miss talking with Jane; her death was hard for me. Photo, boy I miss her singing, that always brought a smile to my gloomiest days and to everyone else, thanks for being there.
Suzie

Before I close this issue, I want to let you all know that Karen is "Grandma" again. Her daughter and son-in-law welcomed a bouncing baby boy into the world on September 8th. Congratulations to the whole family!!

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)