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The Ribbon - Care for Caregivers
Volume 8, Issue 7
April 21, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

It's been quite a couple of weeks for me. We got a call that Nick's father, Nick Sr, was in the ICU at the hospital in Dallas. Nick wanted to go to make peace with a father he has had hard feelings about for many many years. We could not afford for both of us to go so with many worries I put Nick on the bus for the trip.

Nick made the trip ok and his sister has been watching out for him for me while he is there. His father is stable but is still in ICU. We still aren't sure of what the outcome will be for him. Nick will be coming home Friday even though he wants to also stay in TX to be with his dad. He said he misses me and the dogs. ;-) I can tell in his voice that not having me there is wearing on him.

It has been kind of nice not having him here. I don't have to cook and I have more room for me and the dogs in the bed. I have worked almost every day that Nick's been gone though. It has kept me from worrying so much and it will give us a bit more income. By the time my regular shift ended Tuesday night I was bone tired though. I had a splitting headache today and have spent most of the day in bed. I'm feeling somewhat better tonight.

On Easter, the staff and I at work broke the Infection Control rule and we ate with our patients. The terrific kitchen staff fed us that day and so we sat around the tables and had a family dinner. I took a big bowl of pinto beans (we are Southern ya know) and we had a feast. Several of our patients said it was very nice that we made it a family dinner. I just wish we were able to do it every day. I think it makes a big difference in making everyone feel more comfortable.

On a sad note, one of the Techs who was hired at the same time as me gave his notice the other day. He will be moving to Memphis. We all hate that as he is a great worker and it is always good to have a male on the unit. So now there is opportunity for overtime for me but if there is any CNT's out there in the Nashville area who wants to apply come on out!!! When you fill out your application be sure to say I referred you and we will split the bonus I would get if you stay on. That is what Jane Wright did for me and I think that's a great thing!! It's Nashville Rehab Hospital, Bridges Unit, 610 Gallatin Road.

I guess that's about all for now! Y'all have a peaceful time until the next issue!

Jamie


In Passing: Those We Must Remember

It is with great sadness that I must tell you of the passing of another friend's mother. MNell, Martha to us, lost her mother this past Sunday. Please join us in sending your condolences and sympathies to her at this sad time.


Agitation

The term agitation is used to describe a large group of behaviors associated with Alzheimer's disease. As the disease progresses, most people with Alzheimer's experience agitation in addition to memory loss and other thinking symptoms.

Agitated Behaviors

In the early stages of the disease, people with Alzheimer's may experience personality changes such as irritability, anxiety, or depression. As the disease progresses, other symptoms may occur, including sleep disturbances, delusions (firmly held belief in things that are not real), hallucinations (seeing, hearing, or feeling things that are not there), pacing, constant movement or restlessness, checking and rechecking door locks or appliances, tearing tissues, general emotional distress, and uncharacteristic cursing or threatening language.

Possible Causes of Agitation

Agitation may be caused by a number of different medical conditions and drug interactions or by any circumstances that worsen the person's ability to think. Situations that may lead to agitated behavior include moving to a new residence or nursing home, other changes in the environment or caregiver arrangements, misperceived threats, or fear and fatigue resulting from trying to make sense out of a confusing world.

Treating Agitation

A person exhibiting agitated behavior should receive a thorough medical evaluation, especially when agitation comes on suddenly. The treatment of agitation depends on a careful diagnosis, determination of the possible causes, and the types of agitated behavior the person is experiencing. With proper treatment and intervention, significant reduction or stabilization of the symptoms can often be achieved.

There are two distinct types of treatments for agitation: behavioral interventions and prescription medications. Behavioral treatments should be tried first. In general, steps to managing agitation include

  1. Identifying the Behavior
  2. Understanding its Cause
  3. Adapting the Caregiving Environment to Remedy the Situation

Preventing Agitation

General caregiving strategies to prevent or reduce agitated behaviors include the following:

  • Create a calm environment: remove stressors, triggers, or danger; move person to a safer or quieter place; change expectations; offer security object, rest, or privacy; limit caffeine use; provide opportunity for exercise; develop soothing rituals; and use gentle reminders.
  • Avoid environmental triggers: noise, glare, insecure space, and too much background distraction, including television.
  • Monitor personal comfort: check for pain, hunger, thirst, constipation, full bladder, fatigue, infections, and skin irritation; ensure a comfortable temperature; be sensitive to fears, misperceived threats, and frustration with expressing what is wanted.
  • Simplify tasks and routines.
  • Allow adequate rest between stimulating events.
  • Use lighting to reduce confusion and restlessness at night.

Identifying Agitation Triggers

Correctly identifying what has triggered agitated behavior can often help in selecting the best behavioral intervention. Often the trigger is some sort of change in the person's environment:

  • change in caregiver
  • change in living arrangements
  • travel
  • hospitalization
  • presence of houseguests
  • bathing
  • being asked to change clothing

During an Episode of Agitation

  • Do: redirect the person's attention, back off and ask permission, use calm positive statements, reassure, slow down, use visual or verbal cues, add light, offer guided choices between two options, focus on pleasant events, offer simple exercise options, or limit stimulation.
  • Do not: raise voice, take offense, corner, crowd, restrain, rush, criticize, ignore, confront, argue, reason, shame, demand, condescend, force, explain, teach, show alarm, or make sudden movements out of the person's view.
  • Say: May I help you? Do you have time to help me? You're safe here. Everything is under control. I apologize. I'm sorry that you are upset. I know it's hard. I will stay until you feel better.

Safety Measures

  • Equip doors and gates with safety locks.
  • Remove guns from the person's environment.

Reproduced with the permission of the Alzheimer's Association.
Copyright 2004 Alzheimer's Association, http://www.alz.org, 800.272.3900


Unpredictable Situations

People with Alzheimer's disease can act in different and unpredictable ways. It is important to remember that the person is not acting this way on purpose. Whatever the behavior, try to identify the cause and possible solution.

Bold Behavior

The person with Alzheimer's disease may forget that he or she is married and begin to flirt or make inappropriate advances toward members of the opposite sex.

If the person is engaging in unusual, inappropriate behavior, try to distract the person with another activity or lead them into a private place. Avoid getting angry or laughing at the person.

Inappropriate Dressing

The person may forget how to dress or take clothes off at inappropriate times and in unusual settings. For example, a woman may remove a blouse or skirt simply because it is too tight or uncomfortable.

Help the person dress by laying out clothes in the order they need to be put on. Choose clothing that is simple and comfortable.

Shoplifting

The person with Alzheimer's may not understand or remember that merchandise must be paid for. He or she may casually walk out of the store without paying -- unaware of any wrongdoing.

Have your loved one carry a wallet-size card that states that he or she is memory-impaired. This may prevent the person with Alzheimer's disease from feeling embarrassed.

Paranoia

The person may become easily jealous and suspicious. For example, a man may think his wife has a boyfriend if he sees her with their son. A person with Alzheimer's may also misinterpret an unfamiliar face as someone who is a thief.

If the person makes accusations or becomes extremely suspicious, don't waste time arguing. Try to distract the person with another activity or reassure him or her with a hug or touch.


Reproduced with the permission of the Alzheimer's Association.
Copyright 2004 Alzheimer's Association, http://www.alz.org, 800.272.3900


Links

New hope is offered for fighting Alzheimer's
Old drugs may hold key to fresh strategy

"Things are more hopeful than perhaps people think," Dr. Karen Duff of the Nathan Kline Institute of New York University said. "We are on the cusp of having something really useful."

That hope comes on the heels of disappointment. Aricept and other drugs intended to slow the disease's progress have not lived up to the public's high expectations.

But researchers are now turning in a new direction, testing whether other medications, some already on the market for other disorders, might head off Alzheimer's or keep it from becoming worse by acting on possible risk factors for the illness.

New hope is offered for fighting Alzheimer's | The San Diego Union-Tribune


Email Bag

From csaurwein@xsinet.co.za

I live in Cape Town, South Africa, and my husband, 58 years old, was diagnosed in 2001 as advanced. He refused to see a doctor for a long, long time. I am the breadwinner and caregiver, have 2 daughters aged 25 and 18 years. Your website was given to me by the lady, who runs the Alzheimer Association here in Cape Town and I wanted to say that I truly appreciate the time of month when your email arrives in my mail box. I have a lady, who comes in twice a week, my sister comes twice a week and my friend once to care for my husband. I have printed out the last email for them, as this illness is also new to them, and we have all benefited from the article from the part of the patient.

We have been through so many different stages of this illness, from severe aggression to total apathy to extreme restlessness including wandering at night. Since a few nights we are at least sleeping through, due to the pattern being broken by sleeping tablets.

My greatest wish would be to find a place near where we live where my husband can go during the day, which caters more for young Alzheimer patients. After all, he is from the hippy past and is unhappy in the presence of old people in an old-aged home.

Thank you for your energy.

Best wishes

Charmaine


From jmishan@hawaii.rr.com

I am primary caregiver for my 88-year old father who is in the advanced stages of Alzheimer's. I've been with him for 5 years now.

I also am Public Awareness Coordinator for the Hawaii coalition to improve end-of-life care, that started with a Robert Wood Johnson grant.

I participated in a very effective workshop at the local chapter of the Alzheimer's Association, a support group that incorporated journaling and writing poetry. As one fellow-caregiver said, "Other workshops are like bleeding without coagulating," meaning that in this one, we really felt healed and joyous from sharing our miseries and triumphs through poetry.

Because the sessions we had in 2001-2001 were so powerful and healing, we decided to publish a book of the resulting poetry, with stories of we caregivers and our loved ones. It got nominated in the Top Fiction category for local Hawaii awards in 2003, and was on the bestseller list in Hawaii for awhile.

The book is Mosaic Moon by Francis H. Kakugawa

Thanks for you beautiful site, and for being number 1 on Top Alzheimer's Sites!

Aloha,
Jody Mishan
Public Awareness Coordinator
Kokua Mau - A Partnership Improving Care at the End of Life
Phone: (808) 988-3295
Fax: (808) 988-4869
E-mail: jmishan@hawaii.rr.com
Web: www.kokuamau.org


From JRNYWMN@aol.com

Karen and Jamie - re Karen Henderson's piece ...and perhaps this is too long to publish.

Janalee and I are into the end of our 6th year with Mom, having brought her here with us May 1997. It's been incredibly difficult, with only brief periods of what seems to be pure joyousness and peace. Truth is, Mom isn't a difficult "task". It's that we, the caregivers, are challenged to "cooperate". We have...not "opposite" views...but very different distinct ideas of how to tend to, and live with, and "sit with", and even entertain...Mom. I have seen this same concept with the guys at work who are caregiving. Sometimes, I catch their bewilderment at my comments or recollections of the weekend. Certainly, they must catch my return "I don't get why they don't get it" gaze.

Caregiving has not been easy for us. Midway, we tried two assisted living homes, well-known, beautiful. After 22 months, it was no question for us that Mom should be home with us [and unless you really want to know what it was about the places, I'll hold that to myself here.] Since Aug 2001, Mom's been back here. For her, it's been constant care (i.e. 24/7) and love. [Regretably, she's been around when some pretty heated discussions about her occurred, and admittedly, she has been "in-the-know" enough to be affected emotionally. No one wants that..but it happens.]

To generally sum up some of our experiences about Mom's Alzheimers and aging:

  • Since we got the pressurized (i.e. compressor-operated) mattress pad, we've not been plagued with pressure sores (we had only two that got us into a serious "get rid of it" mode, and we were successful with lots of diligence).
  • We learned how to deal with her very thin skin (and truly wished we had invested in Band-aid stock). Just a note about cellulitis...it's not a thing to play with. Very serious.
  • We've dealt with her osteoporosis and Parkinsons with meds, vitamins and diet...and careful, "lots of concentration" handling. [That is, you have to be totally focused on her body, and not necessarily the task at hand when you transfer.]
  • We've done paps and mammograms and, at this point, know we won't do it anymore unless something evidences itself--she's quite appalled at, though tolerates, these doctor visits.
  • She's "the best" at the dentist, even still with her own teeth at 86. This last visit, they gave her the pink bracelet, and she loves it!
  • She's still "Mom". I could go on forever about this one. I'll try to keep it brief (this will most certainly become part of my journal):

She hugs me when I'm upset; she kisses me when she's happy and grateful; she eats like a horse for me though she knows I'm watching her closely enough that when she gives a "signal", I'll stop feeding her. [She has to eat like a lady, or she gets quite upset.] She loves to dance; she laughs when we exercise her legs and rotate her feet in the mornings;she coyly nods her head with a grin when she thinks we're cute [you know, pants=boy]; and she laughs at herself when she's "told" us a good joke. She gets grumpy while sitting outside (too hot, windy, tired), can't stand the heat anymore, needs to go "you know where". She generally knows her boundaries, and sometimes fights us in the restroom when we help her. She goes through the motions of the shower, in the shower. She often gets upset that we're ruining her hair when we wash it ["I just got it done"], but we get kisses and kisses when we're finished (oh, yes, after the manicure and pedicure that go with all that). And she loves her peppermint candies!

Give me one more moment here. We started Mom on Namenda about 6 weeks ago. She's on the 10mg/a.m. and 10mg/p.m. dosage. She's on Aricept, as well as the Sinemet for Parkinson's. Re the Namenda: I'm not entirely convinced that it's the right thing for her, but here are my observations at this point:

  • She's spoken in clear, correctly-phrased, appropriate FULL sentences since being on it. Most everything prior was choppy or very hard to discern.
  • She responds quickly and is actually involved in our conversation (for maybe 1-2 sentences). You heard of the 10-second delay in broadcasting? That's what I've always considered her responses (prior to Namenda). You say something, there's "the pause", then she speaks.  Not with Namenda--the responses are almost instantaneous.
  • She's back to some hallucinations; she gets intense when she's very intent in getting her message to me.
  • She's a bit moodier, though not markedly so.
  • It's difficult to tell the difference in sleeping mode, because she's off-and-on about sleeping a good part of the night.
  • There were a couple of days not long after we went to 10-10mg when she slept 2-3 hours straight. It quite bothered me. I told myself that if this were the result, perhaps it wasn't worth it. Clearly, it could have been the 10 mg at the afternoon that kept her awake at night. Hard to know, but it really upset me because it was so different.

Karen and Jamie, whatever you print of this (and you know I don't care)..if anything... will be okay. I guess this is just filling in for our chat group! Miss all you guys. Take care.

Ann, Janalee and Mom


Please remember that The Ribbon is YOUR newsletter. We always welcome anything you wish to share with everyone. We love poetry, book reviews, articles, stories, email, tips and tricks that worked for you, just anything that you want to share with others. Send it to either Jamie@theribbon.com or Karen@theribbon.com and we will get it out to everyone in the next issue!   We do love hearing from each of you!

Hugs and Peace,

Karen and Jamie

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