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The Ribbon - Care for Caregivers
Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease


Volume 5, Issue 7
April 1, 2001

www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918


Did you Remember to Set Your Clocks Forward Last Night?

Now do not think we are playing an April Fool's joke on you but we have to let you know that The Ribbon website is down. Kevin sent us this explanation:

Translation: BRInet didn't go out of business, but they were effectively forced out of business. NorthPoint, the company that leased the equipment and services BRInet used to host TheRibbon.com, went out of business. AT&T bought them, but won't offer the services BRInet needs to run their business. Fortunately, DPN has stepped in, and is offering to help us (BRInet customers), letting us switch to their service. We're taking their offer, and expect to be up and running again by Monday. Sorry for the inconvenience, hopefully, this is all for the better....

Hopefully everything will go well and Kevin will have us up and running again on Monday. Just don't fret Kevin, we have all learned to have patience.


Spring is here!!!! Here in TN we can tell for a few days and then it feels like winter for a few days. We had a hard freeze and a lot of the beautiful blooms were killed. I miss looking out my front window and seeing my neighbor's Tulip Tree. The freeze killed those beautiful blossoms. Hopefully the freezes are gone and the rest of the flowers and trees will be just fine. Since the weather is turning warmer I'm afraid it does set the body to want to wander so here is an article that may help out.


Some Suggestions for Wandering

There are many reasons why an Alzheimer's patient wanders or walks away from home or a well-known path or area. As a first step, try to determine the reasons behind wandering by asking these questions:

Medication: Some medications have side effects that result in confusion and restlessness. Is the patient on such medication? If so, consult your physician.

Stress: Is the person trying to handle stress, noise, unpleasant people, crowding, or isolation? If so, consider changing the situation.

Time Confusion: Does the person become confused at certain parts of the day, such as the middle of the night or early evening? Does the person claim that people have been gone for days or weeks and then searches for them?

Basic Needs: Is the person looking for something specific such as food, drink, the bathroom, or companionship?

Restlessness: Does the person have enough movement and activity during the day? Is it possible that the person wanders in order to get up and move around?

Lack of Recognition: Is the person in a new or changed physical environment that makes him want to search for familiar objects, surroundings or people? Fear: Is the person trying to escape from something frightening? Is the person experiencing a delusion or hallucination, or has the person simply misinterpreted sights and sounds?

Past Behavior: Is the person trying to meet former obligations involving a former job, home, friend, or family member?

Other factors that may contribute to wandering include medical conditions such as stroke or other factors such as consumption of alcohol, changes in the weather, or feeling abandoned, useless or helpless. Wandering may be frustrating and irritating for caregivers, but it becomes a problem only when the person moves into an unsafe or unhealthy area or climate, puts others at risk, or invades others' property. For this reason, many people who care for Alzheimer patients decide to overlook wandering behavior until it becomes dangerous to the patient and to others. Or they permit the person to wander within safe boundaries or follow the individual on special outings.


Wandering -- Action Steps

 

Be Prepared.


Be aware that wandering may or may not happen. There's no way to predict who will wander or when and how it might happen. Some people never get lost and others get lost frequently. The best advice is to be prepared. If the person has a daily exercise routine and hasn't yet wandered, you needn't be overly concerned. However, once the person begins to wander or gets lost, you should watch him more closely.

 

Encourage movement and exercise.


Allow the person to move within safe areas or make a shared exercise such as walking part of your daily routine. Although walking in a circle might seem unusual, keep in mind that physical activity -- from walking and sweeping, to rolling yarn or folding clothes--is a positive experience for the person with Alzheimer's.

 

Be Objective


Don't take the person's wandering behavio personally. The individual is probably trying to make sense of a world that no longer seems predictable.

 

Be Aware of Hazards.


Remember that places that look safe might be dangerous for the person with Alzheimer's. For this reason, you should review the environment around your home for possible hazards, such as fences and gates, bodies of water, swimming pools, dense foliage, tunnels, bus stops, steep stairways, high balconies, and roadways where traffic tends to be heavy.

 

Secure Your Living Area.


Do whatever you can to keep your home safe and secure. Place locks out of the normal line of vision -- either very high or very low on doors. In addition, use a double bolt door lock, keeping the key handy for emergencies. Also, use a child proof door knob that prevents the person with Alzheimer's from opening the door.

 

Other Effective Safety Actions.


  • Put hedges or fences around your patio or yard.
  • Place locks on gates. Consider electronic buzzers, infrared electronic eye alarms, or chimes on your doors.
  • Place a pressure sensitive mat at the door or person's bedside.
  • Camouflage some doors with a screen or curtain, or put a two-foot square of a dark color in front of the door knob.
  • Use a recliner or rocking chair; the person may need assistance to get up.
  • Use night lights, signs, and familiar objects to help the person move around in a safe area. Put gates at dangerous stairwells.

 

Communicate with the Person.


Remind the person that you know how to find him and that he's in the right place. If possible, take the person for rides in cars or buses in addition to providing regular activity and exercise. And continually reassure the person, who may feel lost or abandoned.

 

Identify the Patient


If your loved one will not wear any item, consider putting it in his pocket or try again later. Some experts even recommend putting identification on the person's dentures or attaching a sensor to the patient's ankle or wrist. In addition, choose bright-colored clothing and mark it with sew- on or iron-on label, permanent marker, or reflective material. Also, place identification on the person's shoes, eye glasses and keys. Try to be aware of what clothing your patient is wearing each day--make notes if necessary.

 

Involve your Neighbors


Inform your neighbors of the person's condition and keep a list of their names and telephone numbers handy. Although neighbors can be helpful in guiding the person home, you'll probably want to teach them how to approach the person with Alzheimer's disease by using these steps:

  • Approach the person from the front.
  • Introduce yourself and call or ask a name.
  • Gently look for or ask to see identification
  • Offer help and re-establish the day, date, and time.
  • Avoid pulling or pushing the person.
  • Report the patient found.

 

Act immediately


As soon as you realize that your loved one is not where you thought he was: begin to look for him close by. Call his name. Inform neighbors that he is missing and ask them to help you look. Be aware that right handed people are apt to make right turns and vice-versa. Call the Sheriff or Police Department.

 

Some Additional Hints on Wandering


  • Have a thorough medical evaluation, particularly if wandering begins suddenly. Consider possible physical causes such as illness, fever, hunger, pain, swelling, etc.
  • Allow person to wander if environment is save and secure.
  • Help direct person with clearly labeled rooms. For example, door decorations or name plaques may be useful for finding bedroom a picture of a toilet or a brightly colored door may help person locate the bathroom.
  • Decrease noise levels and number of people interacting with wanderer at one time.
  • Remove items that may trigger desire to go out: shoes, coat, purse, etc.
  • Distract with conversation, food, drink or activity.
  • Try to involve person in household activities, such as folding laundry, washing dishes, which will help him/her feel useful.
  • Limit activities to 20-30 minutes or less, depending on level of impairment.
  • Make sure the person isn't wandering because he/she needs to use the bathroom.
  • Look for signals such as fidgeting with clothes.
  • At night be sure the bathroom or a commode is easily accessible.
  • Improve lighting throughout the environment, especially at night. Older people need about three times as much light to see properly as younger people.

 

Communication Techniques


Reassure person frequently about where he/she is and why. Speak in calm, normal tone of voice. Try written reassurance for mildly impaired person, such as "Liz will be here at 3:00 to pick you up." Try not to confront or argue with the person. Limit number of people to redirect wanderer. Increase the wanderer's trust by humoring and cajoling. Allow the person to verbalize feelings without arguing. Alleviate fears--"Your family knows where you are." "Your ____ (misplaced object) is right here."


Alzheimer's Support Network of Naples
660 Tamiami Trail North, Suite 21 Naples, FL 34102
(941) 262-8388

Challenging Behaviors from Alzheimer's Outreach


Help Tips On Sundowning

Sleeping problems experienced by persons with Alzheimer's and caregiver exhaustion are two of the most common reasons people with Alzheimer's are eventually placed in nursing homes. Some studies indicate that as many as 20 percent of persons with Alzheimer's will, at some point, experience periods of increased confusion, anxiety, agitation, and disorientation beginning at dusk and continuing throughout the night. While experts are not certain how or why these behaviors occur, many attribute them to late-day confusion, or 'sundowning', caused by the following factors:

  • End-of-day exhaustion (mental and physical)
  • An upset in the 'internal body clock', causing a biological mix-up between day and night
  • Reduced lighting and increased shadows
  • Disorientation due to the inability to separate dreams from reality when sleeping
  • Less need for sleep, which is common among older adults

Tips for reducing evening agitation and nighttime sleeplessness

  • Plan more active days.
    A person who rests most of the day is likely to be awake at night. Discourage afternoon napping and plan activities, such as taking a walk, throughout the day.

  • Monitor diet.
    Restrict sweets and caffeine consumption to the morning hours. Serve dinner early, and offer only a light meal before bedtime.

  • Seek medical advice.
    Physical ailments, such as bladder or incontinence problems, could be making it difficult to sleep. Your doctor may also be able to prescribe medication to help the person relax at night.

  • Change sleeping arrangements.
    Allow the person to sleep in a different bedroom, in a favorite chair, or wherever it's most comfortable. Also, keep the room partially lit to reduce agitation that occurs when surroundings are dark or unfamiliar.

  • Nighttime restlessness doesn't last forever.
    It typically peaks in the middle stages, then diminishes as the disease progresses. In the meantime, caregivers should make sure their home is safe and secure, especially if the person with Alzheimer's wanders. Restrict access to certain rooms or levels by closing and locking doors, and install tall safety gates between rooms. Door sensors and motion detectors can be used to alert family members when a person is wandering.

Once the person is awake and upset, experts suggest that caregivers:

  • Approach their loved one in a calm manner
  • Find out if there is something he or she needs
  • Gently remind him or her of the time
  • Avoid arguing or asking for explanations
  • Offer reassurance that everything is all right and everyone is safe

Challenging Behaviors from Alzheimer's Outreach


Before I Forget
Dedicated to The AD Patient's Perspective

March 23 . 2001

I have been conversing via the Internet with a student doing a research paper on Alz. I'm POOPed today after another long day at the apartments, so I'll just enter a partial of my response to him here as my journal entry for today:



> Can you tell me a bit about your treatment?

Presently I am taking (daily) 10 mg of Aricept, 2000 IU vitamin E, 2000 vitamin C, multivitamin, antioxidant, 200 mg Welbutrin, and Vioxx (I do not know the dosage here as this is a clinical drug study) -- when not on this study I also took 800 mg ibuprofen.

The doctors offer nothing else, other than to enjoy life while I still can. When I took this fatalistic advice to heart I was most depressed and angry. As of last year, after connecting with my peers on the Internet, I have taken a much more proactive approach to life, working on a self rehabilitation program in which the Internet has played a major role. If the medical community can work to rehabilitate people who have suffered a stroke or brain injury and been successful then why not the person with dementia?!



> What has been your experience with nurses?

The nurses that I have had the most contact with were/are working in the clinical drug trials. I have been extremely blessed to have had nurses in the drug trials and at the University where my progress is reevaluated yearly that are sincere in their care and knowledgeable in the unique field of dementia. This is the without a doubt one of the most important positions in the PWD's (person with dementia) treatment. Initially when you go in to seek a diagnosis the things that have been occurring in your life sound so foolish to voice a concern to a stranger who might ridicule, discount and fluff off as others have done -- These concerns are extremely serious, they have brought you to a point where you are willing to risk your self-esteem, put your pride in your back pocket in hopes of finding an answer to your worries.



> Have you any recommendations for nurses in general, or nursing students?

Remember YOU are the first impression made on a patient. It is how you handle the patient that will set the tone for the visit. No matter what the reason, most people are 'uptight' at a visit to the doctor. It is especially important in the subsequent evaluation of a person for possible dementia that they feel at ease and safe. They are divulging what has become a living nightmare of worry for them, in trying to share their concerns with others they have probably been given glib reasons, and their fears discounted.

LISTEN, empathize, show importance and sincere concern for wha the patient is saying. Make them feel confident in your concern, that it is genuine. And if possible that they are your priority, not the clock.



> What do you consider to be the most valuable thing, or things, you have learned through your experience?

The heart without hope is a lost soul that causes the spirit to wither and die. When strengths are brought to the forefront and weaknesses ignored and cast aside, many pieces can become a strong whole and change the perception of a living death.


Jan/Mina's Journal


In Passing: Those We Must Remember

From Dgcisme
dated 3-23-01

My heart goes out to my friend Rosalyn. Her mother passed away March 22, 2001 after a lenghthy illness

Diana


From PHOTOLJT
dated 3-31-01

Friends, it is with sadness that I must report the passing of one of member's family. I received an email from Daisey9959 (Michele is a brand new member to our group) this morning, stating that her Mother had passed away from cancer which started in the breast and progressed further through her system. Her Mother had a heartattack and they made the difficult decison to remove her from life support and let her go peacefully.

Please join with me in extending your sympathies and thoughts out to Michele and her family in this very trying time. Michele will need our support now more than ever as her Father is in a nursing home with Alzheimer's.

Love Always,
Linda


Dear Ann Landers: I am the sole caregiver for my elderly mother. May I say something to my siblings, aunts, uncles and cousins who like to tell me everything I am doing wrong and how it could be done better?

Dear Family: I always hear how much you love Mom, but I don't see you here helping me out. When was the last time you took Mom to a doctor's appointment? Have you ever given her a bath or done her laundry? Did you use any of your vacation or sick days to help take care of her? You say you can't take time off of work? Well, I have a job too. I make the time, and you could if you really wanted to. My conscience is clear, and I will rest easy knowing I did all I could for that dear woman. Can you say the same? Thanks, Ann, for letting me get this off my chest. --Caregiver Anywhere

Dear Caregiver: Your story is one I've heard many times. In a family where there are several siblings, it seems there is always one who is caring and considerate of a parent and does the "heavy lifting". You deserve to feel good about yourself. The others will have to deal with their guilt later on. Trust me.

The Tennessean dated Feb.9, 2001


Email Bag

From LauraW64

Hello all!

My siblings and I are having the hardest time finding someone reliable and "normal" to be a caretaker for our Dad. We all live in the same town as our Dad and have wanted to care for him ourselves, but we all have children and Dad has a difficult time with them, especially at night when he is "sundowning". We have tried to care for him but have opted to try and find someone to live with him instead who has no children. We are at the house alot during the week, doing shopping, paying bills, etc and we take him to dinner (his favorite thing!) and to family activities, but we can't live there.(He is in middle-stages, but needs guidance. He still dresses and toilets himself, but would have no idea how to dial a phone or wash his clothes.) In the last two years, we have had two caregivers. It seems that we always have to choose from people at the edges of society - not bad people, but people with eccentricities or problems of their own. We offer free room and board in a beautiful home with a monthly salary, but I guess it's not enough to bring in "professionals".

Is this a common problem? How have others dealt with it? What can we do to attract a more stable caregiver? We feel that if Dad were a little worse, he'd be ready for a nursing home, but we're not willing to put him there yet when he still derives so much peace and comfort from being at home. That also opens up a whole new subject: maybe Assisted Living would be good? How would the transition be? I could go on and on, but I won't! If anyone would like to respond, please e-mail me at LauraW64@aol.com. Thanks!!

Laura


From SMacisco

Hi Karen, another great newsletter, and I thank you again. I just wanted to drop by to let you know that you placed the wrong e-mail address with my letter in this months "Ribbon" My correct e-mail if smacisco@aol.com. I also want to update you on Fred. He became violent again, and again was sent to the Hospital special care unit. They did not change his meds this time, but the assisted living facility would not let him back in, and there were not any beds available in my area for a dementia patient with a history of violence. Now that violence is on his record, no one would take him. Finally, the hospital placed him in a nursing home 80 miles from my house. It is very difficult for me to visit, as I have physical limitaions. Also, Fred had to go on Medicaid, and they left me very little of his income to live on, and I don't have much of my own. Things are really not looking good at all. I go once a week to see him, and he does not know who I am or anything. I am so upset. This disease has me mad as hell! I wish God would either take him, or make him better. This is not a life for him, as you well know. He wears diapers, and can't speak much. He is so far out of it, and it is so sad. I just don't know where to turn anymore. 7 years of this and I am totally burnt out. I just want this nightmare to end. I will even admit to you that I am losing faith in God. I am not sure why a thing such as this disease could happen to such a wonderful, kind, loving, gentle, and caring person like my Freddie. I am heartbroken, and yes, I am angry.

One good thing is that he has a brother and sister in law who are only eleven miles from him, and they do visit him a few times a week. For that I am grateful. Oh Karen, why? I just don't know.

You take care, and keep up the good work. I would have sent this to the message board, but could not find it, so if you feel you would like to print it in next months "Ribbon", please feel free. Your friend..Selina


From DKThomp

Good Morning All,

March 20, 2001, First Day of Spring:

It is the first day of spring and the sun is shinning and it is already about 40 degrees. The birds are singing, the crocuses are beginning to bloom, the air smells sweet, a good day for a walk, and it is good to be in God's great creation this day.

As I was out walking last night my mind turned inevitably to thoughts of my beloved Ann. People have asked me how I am doing; I answer by telling them, "I am at peace, for I know the sorrow will pass, but my love for her will always last." Coming home I picked up my pen and wrote this poem.

Love, No Dying Ember

Is this the time
To set aside my rhyme?

Will I put down my pen,
And close my den?

No more to write,
Love is gone no pathos to incite?

The long trial is past,
Still my sorrow is vast!

Yet sorrow will pass,
For love will last.

My adore will not cool
Then let my pen be a tool,

I'll write of her love,
Though she be in heaven above.

I will remember, remember
My love no dying ember.

A new life I'll live,
Whilst her love is still alive.

My heart is still aglow,
And time will heal my woe.

So write I will, and write I must
Until I too return to dust.

In His Great Love,
Doug


Re: Special News From The Ribbon

From Cwadephill

The Ribbon is # 1 in my book!!!

Thanx for sending this on to me Karen, you must be the angel answering my prayers! This was on my mind early this morning just what I could do next -- and here you deliver the answer! My friend, Joe Timassy (think he's Joe's Quest on the Top Alz. site) has decided this is what he wants to do, the Omentum Transposistion. I have sent him all the info I could find but somehow even searching archives Betty's address eluded me, and he really wanted to talk to her. We all live in the same Los Angeles basin area -- and to find JDF is in on it too -- who knew??!! They are just down the street! So my sincere thanx!!! - Mina


From JRNYWMN

Hey Karen, thanks for the info. Don't know if you remember, but Janalee works for the John Douglas French Center....in Activities (surprise). She's working part-time, but will probably be cutting down to one day a week after June...when we bring Mom home to stay with us again. We can't stand where Mom's at now, though it's a beautiful place--they still suck and it's been very hard on Janalee seeing the contrast between the French Center and them in their attitudes about the residents.

Anyway, I'm gonna have her get some good info on this surgery from the people involved. If there's anything of note, I'll get it back to you.

Please KEEP UP THE GOOD WORK!!!!! Ann


We Wish you
Hugs and Peace,
Jamie and Karen

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