Volume 6, Issue 14
July 14, 2002

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

I know we stress how important a support group is and I want to give you an example of how helpful they can be.

Grandmother has been having some problems walking since she has had two broken hips. She has been using a walker and walking slowly but walking. Recently I have been using the wheelchair to keep her from getting so weak but still use the walker for getting from bed to potty and back. I noticed that she is stooped way over and is watching her feet and that her feet won't move. This was starting to concern me very much.

I went to The Gathering Place and asked if anyone else had experienced this type of thing happening. Many of the people there told me that their loved ones either were doing the same thing or had done the same thing. It just seems to be a progression of the disease. I learned that what I had been doing, which was to tell her to stand straight and look at me helped her to walk those few feet.

Sometimes you just need someone who has "been there, done that" to tell you that you are on the right track. Thank you, to all who attend the support groups!!

Jamie

Before I Forget

The Person With Dementia (PWiD) perspective

This came from the DASNI mail list. Carole has give me permission to use it to help us understand.

DASNI: Dementia Advocacy and Support Network International
www.DASNinternational.org

Eileen said,

"I also have a question. One of the things I "think" happens to the people wecome in contact with is this:

When we are talking about something, and the person responds with something we think is unconnected to the conversation, could it be that something we have said have reminded them of something else? and it is this that they are responding to?????
I would appreciate it if you [or anyone of the group] had any ideas about this?"

Carole's reply

I can only speak from my own experience, Eileen, but I think you have it right. When I worked on cognitive retraining on a computer, my first goal from the neuropsychologist was to improve in basic attention. Over a two-minute period and at various intervals, fourteen signal lights were flashed on my screen. I was to click as quickly as I could after each flash. Then a graph of my response times was given to me.

When my responses were quick, the chart showed a low point. When my responses were slow, the graph showed a spike or mountain. The spikes revealed times when my attention had been diverted somehow.

Sometimes the diversions were the result of distractions in the room I was working in (like the mail deliverer coming in the door), but sometimes the spikes were from passing thoughts and ideas I had had while waiting for another signal flash. In the beginning, I would have seven or eight spikes in a two-minute period of time, and they were of varying heights. Ideally, I was to get no spikes and an even, flat graph. That would mean that my attention was being sustained throughout the two-minute period. I soon learned that the highest spikes occurred when there was a "real world" diversion in the room. People would pass by and talk to me, the office's phone would ring, etc. The greatest number of spikes, however, occurred when my own thoughts and ideas interrupted my task. I found that I was "thinking about" the task I was doing when I should have been just doing it.

From watching myself watch (if you understand what I mean), I learned how to shut out those thoughts and just click when the flash appeared. I was building new neural pathways, which is possible because the brain is to some extent plastic. Building new neural pathways is not easy to do and takes a huge amount of time and effort. I trained for an hour a day over four months. It's somewhat like digging a tunnel with a teaspoon, so you have to be very certain you choose the right destination for your tunnel. In doing this rehabilitation I learned to notice my own cognitive processes better. This brings me back to your question.

Yes, what you speculate is happening is very likely happening. You ask a question about my brother, and I start thinking about brother and that reminds me of sister Bonnie and then of the time Bonnie fell off a horse. I say, "Bonnie had a concussion." For you, that must be as disturbing a non-sequitur as if I asked you how the stock market is doing, and you answered 'cheese burger and fries.'

In the example about 'brother', you can see that while the answer 'she fell off a horse' is not a logical response, it has an interior sense to it nonetheless. It is important that people who work with us understand this. Our inexplicable responses at times are not hallucinations or psychotic yammering or even Martians taking over our beings. The comments have an internal sense to them to which you simply have not had access.

I believe it takes some intense, very scientific and graphic education such as the cognitive retraining I received in order for a person with attention deficits like this to be aware of them. I wasn't aware of my 'flighty' mind until I had to examine it with a microscope. Before that, I was aware only that sometimes when I responded to a person, they got these vaguely alarmed or disappointed looks on their faces and disengaged from me. Non-sequiturs like those above may have been the reason, but I wouldn't have known that at the time.

Your students can better understand the way we sometimes respond if you will have them do the following exercise several times until they get the hang of it. It is a type of "stream of consciousness" writing, which I used in writing classes to build fluency. Given them a starting phrase, and ask them to put their pens to paper and write NON-STOP for five minutes (working gradually to ten). The only requirement is that they can't pick up their pens or pause even for a fraction of a second. They should force the writing, repeating the last word they wrote until another one comes to them, building on whatever comes to mind.

Later, have them share their writings with the group. They will hear how other (normal?) people's minds wander, follow free association, use rhyme, repetition, alliteration and a host of other strategies just to keep writing. What they have written will not be logical, but it will make sense in its own way. It seems to me that if they watch their own minds work in this non-linear, illogical way, they will be less fearful of the strangeness people with dementia sometimes exhibit.

For example, "Spring rains" . . . are drizzle, storms, floods, being flooded flooding in my basement..basement basement, bargain basement, cheap plastic handbags and old women's dresses snowflakes that land on your nose and eye-lashes Julie Andrews billowing dresses dresses my church dress frilly collar collar collar collar sounds like dollar the dollar store everything's a dollar store get more for your dollar a dillar a dollar a ten o'clock scholar...

You get the idea. One thing to remember when talking with people with dementia is that even though the conversation is difficult going for you, for the person you are speaking with, it is nonetheless personal attention and someone wanting to understand them. People with dementia are so hungry to be heard.

There are some inspired professional care-givers (like Christine Jonas-Simpson) who have learned the knack of drawing people out even when they don't understand and struggling to find the sense in what people with dementia have to say. She knows that their experiences make sense to them, and she works to understand through the person's eyes what their reality is like. In fact, a favorite question from this perspective is "what is it like for you [to have a sister named Bonnie or to live with dementia right now]?

You didn't ask for anything long-winded like this, but I have been thinking about this topic for a long time. I'm glad you thought to ask!

Best wishes,
Carole Mulliken
Mulliken@fidnet.com (Mulliken@fidnet.com)

Oh! My Aching Back

by Mary C. Fridley RN, C

Caregivers and back injuries are no strangers. The pulling and tugging used to move a disabled loved one will take its toll. Statistically, a back injury can cost $10,000.00 before surgery or rehabilitation, and one-third of all employed persons will have a back-related injury in their lifetimes…and caregivers are no exception.

Here is a quick review of the structures of the back and their purposes: The spinal column provides support and flexibility for the head and trunk and protection for the spinal cord. It is made up of five different types of bony structures called vertebrae. Between each vertebra are cushions called discs that consist of a tough outer shell and a soft, jelly-like center. A "slipped disc" means the disc is being squeezed and impinging on the spinal cord or an exiting nerve. The spinal cord is about 18 inches long, 1/4 inch thick, and has 31 pairs of nerves that exit from it. There are 400 muscles that stabilize the spine, maintain posture, and provide for ease in movement. 1000 tendons connect the muscles to bone. Ligaments, which connect bone to bone, keep the spine aligned to prevent injury with movement. Any one of these structures can suffer an injury, but muscle strain is the most common cause of back pain.

So how can you prevent back strain or injury when caring for your loved one? Start by maintaining good posture and using good body mechanics. Good posture prevents too much stress on any one area of the back and good body mechanics means using and moving your body parts in balance. Standing erect with your ears, shoulders, and hips in a straight line is the ideal posture. Good body mechanics consist of these basic principles: See your feet as the base and keep your center of gravity above them. Spread them apart to the width of your shoulders and balance your weight over this base. When lifting an object off the floor bend at the knees, keep your back straight, and hold the object close to your body. If pushing something heavy, keep your body straight, put one foot forward, and push your weight into the object. To move your loved one in bed use the same principle but put one foot back and gently pull her towards you shifting your weight back. Always use your abdominal muscles for strength, they act as an internal girdle. When assisting your loved one to stand, face her and establish a good base, bend at the knees, reach under her arms and place your hands on her upper back. Have her put her hands on your shoulders, not around your neck. Now gently rock back and forth and using the momentum lift on the count of three. Always use smooth rhythmic movements instead of jerking ones. If your loved one is bathed in bed, be sure she is close to the side you are standing to avoid over reaching. A hospital bed is ideal because its height can be adjusted to meet your needs.

Use common sense and never attempt to move someone heavy alone. If your loved one falls and can't get up, call the paramedics. They will come, help her up and assess for injuries.

It takes work to maintain a healthy back. Exercises such as gentle stretching, walking, abdominal muscle strengthening and even weight training are beneficial. A pain free healthy back is a blessing. If you ever suffered from a bad back you know what I mean.

Mary is a registered nurse certified in gerontology with more than twenty years in the geriatric health field. She is the owner of Gero-Resources specializing in caregiver, eldercare, and successful aging education. She provides staff and community education as well as motivational speaking engagements. Mary is also an author of two caregiver advice columns and contributes articles to various websites. She will be happy to answer your questions or concerns while maintaining your anonymity. She can be reached at Gero-Resources, PO Box 573, Riva, MD 21140 or at geroresources@hotmail.com (geroresources@hotmail.com).

The Caregiving Years

by Denise M. Brown

Last issue we started you off with Stage 1, The Expectant Caregiver. Today we continue the series.

Stage 2
The Freshman Caregiver

I am starting to help an aging relative.

Who are you?

You have been caring for an aging relative for six months to 18 months. Your duties range from errand-running and bill-paying to hands-on care.

Your keyword: Find.

Find services that help; find support that comforts; find ways to enjoy your hobbies and interest.

Your Purpose:

This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against, you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your care recipient getting along? What situations would create overwhelming stresses for both of you? What situations should you try to avoid because you know they will lead to nasty fights and bitter arguments?

You'll get a feel for the present and future budgets needed to provide the care your care recipient requires.

In addition, keep up with your hobbies and interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own, enjoying yourself.

As a "freshman caregiver", what can you do?

Learn as much as you can about your care recipient's illness, disease or condition.
Consult the local branches or chapters of national organizations such as The Arthritis Foundation, the Alzheimer's Association, The Cancer Society. What does the future hold for you and your care recipient?

Learn how to provide proper care from health care professionals or from health care videos, manuals or books.
If your care recipient is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving techniques: lifting, transfers, bathing. Or, search the Internet for hands-on care information.

It's very difficult to provide care when you are unsure of what you're doing. You'll feel much better when you're confident of your skills.

Join a support group--online or in your community.
It's so isolating to be a caregiver! Support groups will hook you up with others in similar situations; often, you'll learn of community resources and options from other caregivers that you were not aware of.

A Tip from Denise:

Making a decision on behalf of an aging relative can be intimidating, causing you anxiety, guilt and confusion. You may be plagued by this thought: What is your responsibility?

Keep this in mind as you struggle to make the best decisions for an aging relative: You are responsible for providing a safe and healthy environment for your aging relative. That environment may be your care recipient's home. It may be your home. Or, it may be the nursing home.

If may be helpful to break down the decision and determine: Where will my care recipient be safest? Where will she enjoy the healthiest environment? Sometimes the answers become clearer when we have a goal to work toward.

Count on regular breaks from caregiving.
You can't be a good caregiver to someone else if you don't take care of yourself. Plan for regular breaks--an hour daily, an afternoon weekly, or a day monthly--whatever you can manage. Enlist the help of relatives and community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways--through financial support, social support (calling the care recipient regularly just "to talk"), as well as respite support.

Rely on help from community organizations.
Meals on Wheels, home care agencies and day care centers, to name just a few, may offer services that your care recipient needs.

Contact your local Area Agency on Aging for a listing of services and organizations in your community. Visit your local medical equipment supply store to find devices and gadgets that enhance your care recipient's abilities--and independence from you.

In addition, ask about local, state or federal programs that might provide financial assistance for you and/or your care recipient. As your care recipient's care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your care recipient can afford, will help you plan appropriately for the future.

Keep in mind what your care recipient's wishes are.
If appropriate, ask for his or her input and ideas.

Does your care recipient still feel good about living at home? What does your care recipient fear or dread? (These are also good questions to ask yourself!)

Reflect the changes in your journal.
How do you feel now? What are your concerns? Fears? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have given you comfort?

Web Link
>>Resources that can help Stage 2 Caregivers

Stage 3
The Entrenched Caregiver

I am helping a relative or friend.

Who are you?

You've been involved in your care recipient's care for two to five years. Your involvement is almost daily--if not constant. Your care recipient may live with you--or your involvement means that your day is structured to be available to your care recipient. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat--you're proud you've been able to provide such wonderful care and make decisions that support your care recipient's best wishes--and sometimes melancholy--why you? You've been mourning the loss of your care recipient's abilities and functions and often long for the days before caregiving. And, you're tired.

Your Keyword: Receive

Receive help--from anyone who offers; receive breaks from caregiving; receive support.

Your Purpose:

To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient--this stage may be the most difficult for both of you. The changes you prepared for in Stage 1 and 2 are now a reality--you have become something of a lifeline to a family member or friend.

As an "entrenched caregiver", what can you do?

Determine your limits.
How long can your care recipient remain at home? What's your comfort level in providing care in your home? For instance, some caregivers feel uncomfortable providing care when their care recipients become incontinent. Others determine they can provide care at home as long as Medicare or insurance benefits offset some of the home care expenses. Others feel that they can provide care as long as their other family members, like spouses and adult children, will put up with it.

But, everyone has limits. What are yours?

Continue regular breaks.
Consider annual weekly breaks--investigate short-term respite stays in your community's nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can.

A Tip from Denise:

In order to survive a trying and emotionally-charged experience, we need to find the meaning. Your experience has a family caregiver is meaningful. You can find the meaning when:

You receive help for yourself and your care recipient from community organizations, your church or synagogue, your family members, your care recipient's friends and neighbors. Regular breaks mean you can gain a healthier perspective.

You allow yourself, and your care recipient, to feel the emotions of the experience. Is your care recipient angry that she has had to leave her own home? Allow her to tell you about it. Do you miss your old life--its action, its freedom, its spontaneity? Allow yourself to vent your frustration in a healthy way, in your journal, to your support group, in your artwork.

When you receive and allow, you make room for meaningful moments between you and your care recipient. And, that's when you find the meaning of your caregiving journey.

Keep up with a support system
--a caregiver's support group or empathetic and understanding family members or friends.

Continue to learn about your care recipient's illness or condition.
What's next for your care recipient? Are you up to the next stages in his or her illness?

Start a second journal that you use to detail your care recipient's needs and your caregiving responsibilities.
Note any changes in your care recipient's health and condition so that you can confidently discuss your concerns during physician appointments. Continue to chronicle your caregiving journey in your first journal. What causes you to mourn?

Web Link
>>Resources that can help Stage 3 Caregivers

Links

Kristine Theurer
www.kristine.ca

OCT 25, 2002 - Barcelona, Spain
Alzheimer's Disease International world conference
Kristine peforms "Where Is She" at the conference and gala banquet for 3000 delegates

You can download the song or the video free from this site. It is a lovely song and is about a man she knew who had Alzheimer's.

Support Groups

The Gathering Place

The Gathering Place - Online Alzheimer's Caregiver Support - TheRibbon.com
www.theribbon.com/GatherPlace

The room is internet based so it can be accessed by anyone. They meet Monday through Friday
9-11pm EST
8-10pm CST
7-9pm MST
6-8pm PST

"The Caregivers Corner"
Hosted by:
HOST iVH Phenix
Date: Tuesday
Time: 8:00 PM Edt
Place: Positive Reflections
AOL ONLY

Alzheimer's & Dementia Caregivers Support Group
Weekly@ Friday
Time: 9 PM EDT
Place:Health Conference
Hosted By: HOST iVH KerlyQ & HOST iVH Piper
AOL ONLY

Email Bag

From Superscan1@aol.com (Helen)

I know you are very busy. I really need to ask someone who knows one question. My 75 year old husband was diagnosed with alzheimers in Jan of 2000. At that tiime he had had 2 carotid artery surgery 6 weeks prior to that diagnoses, The surgeries were after having had a light stroke that left his left hand and foot numb.

He still has all the other symptoms of Beginning alzheimers but his memory has slowly improved and now his memory is perfect except that he cannot add numbers any more without making at least one mistake and can no longer drive a car. His gait has changed greatly and his speech pronunciation has changed.
I am trying to figure out if Alzheimers is always first , and mainly a memory problem. And whether or not memory is always greatly affected with alzheimers . It is a possibility he was missdiagnosed. Unless by some possibility aricept, and about 1000 units of Vitamin E are keeping his memory intact. It is beginning to appear to me that if the medicine was doing that much good for him , I should also be reading about others having that good of luck with the medicine.

He has a problem. Things he used to be able to do , he can no longer figure out how to do them. I strive to know exactly what his problem is . Most people seem to be seeing quite a lot of deterioration in their loved ones in two and a half years. If anything it seems to me that mentally, he has improved.

Thankyou so much for reading this. I feel like you might give me some insight as to whether this is alzheimers or something else, that it might be wise to be researching ,in a different direction. A Neurologist ran many tests Including a MRI before the diagnoses. Thankyou so much for the Ribbon and the help you are giving myself and so many others. The help means so much and I wish I could repay you instead of asking more help myself.

Thanks again
Helen
C shell on AZ chatroom and Superscan1@aol.com (Superscan1@aol.com) on the internet.

From BJBudy@aol.com (Becky)

I just got back from Creative Memories Convention and we raised over $500,000.00 it was awesome!! The head man for Alz. CEO was there and it was so touching. I just pray they find a cure soon. Just makes me feel so good to know our company can help in some way. We plan on doing the walk this year too. Yes, we are helping any way we can to help find a cure. Remember put those precious memories in Safe Acid Free Photo Albums for your family to cherish in the years to come.
Have a wonderful week, Becky

Hugs and Peace,
Karen and Jamie