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The Ribbon - Care for Caregivers
Volume 2, Issue 21
October 29, 1999

I have a bit of good news. Mina who posts on the Alzheimer's Disease Message Board has written an article for us. She has been diagnosed with Early Onset Alzheimer's Disease. I'm keeping my fingers crossed that she will send us an occasional article. Thanks Mina!


Point of View

EOAD (Early Onset Alzheimer's Disease), my diagnosis. In one sense a blessing, - there are medications now available that will forestall Alz.D progression - not halt, for as we all know there is no cure for Alz.D. And on the flip side a curse, -- the diagnosis is devastating -- a death sentence with no possibility of a reprieve.

At first you might say that there is a sense of relief in knowing that there is finally a name for the craziness in your life that is consuming you . . . or is it that is consuming your life ?! And then you educate yourself as to just what Alz.D is and you are devastated - crushed by all that you have just lost. The guilt of the burden that you will be placing upon your family is overwhelming... but, what to do?

Now that you have a name to your 'problem' you tell people, to try & help them understand, to defend your peculiar behavior. Timidly at first, and so does your caregiver. ----Oh, yes -- we now have labels for us too! You will now be referred to as the 'loved one' or 'LO' while my hubby is now to be called the 'caregiver' (CG). With the EOAD diagnosis this becomes hard for people to understand - I still look the same, and for the most part can engage in conversations and still maintain my social skills - there is no outward, visible sign at this early stage of the disease that my brain cells are dying and in their death taking away my memories, the essence of my self and will eventually eat away and consume the cells that tell my body how to talk, how to walk, how to eat, how to breathe...

And so in sharing with family, friends, associates of your new found loss rather than a comfort and understanding shoulder to lean on you find indifference, almost a challenge to prove your diagnosis - Why on earth would anyone ever choose Alz.D.??!!!!

And so I guess when I have lost enough brain cells that I can no longer recognize them, I am sure they will believe in my diagnosis and they will seek solace and comfort for their loss of our friendship, family ties - as I grieve now, . . . .alone

Mina
Nothing the heart gives away is gone, it is kept in the heart of others . . . The Heart Remembers

Contentment is not the fullfillment of what you want, but the realization of what you already have


Feelings

Like people of all ages, Alzheimer's patients experience feelings of joy, sadness, fear, anger, and jealousy. As a caregiver, you need to recognize and respond to these feelings. You can assist the family member in dealing with feelings by exercising patience, sensitivity, a sense of humor, and by using the following steps:

  • Treat the "patient" as a person. Through words and touch, try to do everything you can to relate to this individual as a valued human being with emotional and spiritual needs.

  • Avoid talking about the person. People with Alzheimer's disease are often hurt when caregivers talk about them as if they're in another room.

  • Call the person with Alzheimer's disease by his or her name. Avoid cruel and dehumanizing descriptions such as "the bedwetter," "granny," or "gramps." Also avoid isolating the individual from visitors.

  • Speak slowly and in simple sentences. Slow down your rate of speech and lower the pitch of your voice.

  • Give the person with Alzheimer's time to hear your words and prepare a response. Keep in mind that it can take up to a minute for the person with this disease to respond.

  • Keep communication on an adult-to-adult level. Avoid baby talk or demeaning expressions. Smiles and handshakes go a long way to set the tone for adult interactions.

  • Communicate one message at a time. The person with Alzheimer's disease can be confused by a long string of messages such as: "Good morning. Let's get dressed and come down to breakfast." Instead, divide the message into sections.

  • Keep in mind that the person with Alzheimer's disease probably can't tell time. Instead of saying "John will be here at 2 o' clock." Say, "John will be here after your bath."

  • Be positive, optimistic and reassuring to the person. Use such expressions as "Everything will be OK. Don't worry. We're doing great. We're going to get through this. I'm here to help you." Expressing your feelings will help you release tension and help comfort the person.

  • Give praise for the simplest achievements and successes by making such comments as, "That's great," "You're doing really well," or "Oh, you did such a good job with that."

  • Prepare the person for what's about to happen. Instead of pulling the patient out of a chair or pushing the patient across the room, make such comments as, "We need to get up now." Then, gently assist the person to get out of the chair or move across the room.

  • Provide suggestions and structure. For example, don't ask, "Do you want to take a bath?" Instead, say, "It's time to take your bath now."

  • Be aware of your body language. Even though you might use kind and gentle words, the person with Alzheimer's disease will pick up tension in your face and body. Your feelings will come out through the tone of your voice.

  • Subtle differences in word choice and sentence structure will probably confuse the person. Use the same words in the event you need to repeat a message. The person with Alzheimer's disease won't see the similarity between the following statements: "Please sit down here" and "Why don't you come here and have a seat?"

  • Maintain eye contact, smile, and use touch to comfort and reassure the person.

  • Avoid taking responsibilities away from the person through such comments as, "Here, you can't do that. Give it to me. I'll do it for you." Instead of assuming that the person can't perform certain tasks, put the emphasis on what the person can do.

  • Maintain your sense of humor and don't be afraid to kid around and joke with the individual. A person's sense of humor can remain intact during the various stages of the disease.

  • Keep in mind that the person with Alzheimer's disease wants to contribute to the family's well-being. Don't be afraid to ask for help and cooperation with such requests as, "Could you please help me put these plates on the table?" The person might take twice as long to perform a task but will feel the enjoyment of being helpful.

  • Help the person with Alzheimer's disease label emotions by making such comments as, "You look sad," "This must be really frustrating for you," or "You're really feeling angry right now, aren't you? You know, it's OK to feel angry." Acknowledging an emotion and giving it a label may encourage the person to discuss these feelings further. In addition, don't be afraid to share your feelings with such comments as, "I feel sad too, but I'm here to help you and we'll get through this together."

  • Avoid discouraging the person from talking about difficult and emotional subjects such as dying. Don't reject or dismiss feelings with such comments as, "Oh, you don't need to worry about that" or "That's not going to happen."

  • Remember the value of repetitive activities and exercise. Walking or performing an enjoyable activity such as sorting coins might help distract the person from feelings of anger or depression.

  • Create the opportunity to reflect on life. Many patients enjoy going through old photo albums and talking about happy and enjoyable events. You may also want to sing familiar songs that evoke old memories and feelings.

  • Allow the person with Alzheimer's to tell stories even if he repeats the same story over and over again. Help the patient explore his feelings with such comments as "You really liked visiting your uncle didn't you. That was a really happy time for you."

Alz. Assn., Dallas - Tips for Daily Living


In Passing: Those We Must Remember

From Rootsflo

I don't know if you have heard yet, but my mother-in-law, Grace, passed away on Friday, October 15, after a long battle with AD. She fought for almost 2 years with this dreadful disease, but towards the end, she knew who we were and was able to tell us goodbye, then she slipped into a coma in the early morning hours of Thursday and passed away quietly around 11:00 a.m. on Friday.

Although I have not been in the chats lately, I know that all of you have been there for me many many times and my family and I are greatful to all of you for your thoughts and your prayers, and all the times that you have helped me understand the things that were happening with my mother in law. We will miss her deeply, but know now that she is at peace and no longer has this dreadful disease, and is rejoicing in heaven. We are very thankful for the years she had on earth with us as she was 93 when she passed away.

Thank you again for your prayers, blessings and thoughts as we will still need them to get throught this sad time.

Love and Hugs
Anna and family


Poetry

From WilloRain

"CareGiver"

Two words that come together
When you speak of someone dear.
It is that special person
If you call, they're always near.

You'll see that in a 'CareGiver'
Love comes from in their Heart.
With loving hands and guidance
They help each new day start.

Caring for the fragile soul,
Giving day to day.
They meet the needs of loved one's
Spreading love along the way.

A gentle touch, a helping hand,
A glow that makes you smile.
Always near to comfort
And go that extra mile.

They want no fame or glory,
And it puts their mind at ease,
To know they've helped a loved one
Deal with Alzheimer's disease.

So show a little kindness
To CareGivers across this land.
You may be the one someday
Who needs a helping hand.

With Peace and Understanding,
Throughout the ends of time.
There's someone who will care for you
And make your Spirit shine...

The CareGiver...

Loraine 10/99


Medical News

Brain Cell-Stimulating Pathway May Help Treat Diseases
Researchers from Yale University School of Medicine report that the growth of brain cells, which normally ends in adolescence, can be re-stimulated using a mechanism dubbed "Notch" signaling. It is possible that Notch signaling may play a role in the memory loss that occurs with Alzheimer's disease, the researchers speculate.
Go to Reuters News


Prions May Cause Alzheimers, Says Nobel Winner
Dr. Stanley Prusiner, who won a Nobel Prize in 1997 for his discovery that prions cause certain neurodegenerative diseases such as Creutzfeldt-Jakob disease, now suggests that prions may play a role in other neurological diseases, including Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis (Lou Gehrig's disease). Prions, tiny protein particles, are thought to be infectious agents spread through transplants or, it is speculated, through eating infected meat. They are best known as the cause of bovine spongiform encephalitis, or "mad cow" disease.
Go to Reuters News


E-Mail Bag

From HVNFUN61

Thank you so much for your reply.
Just a note about my situation. My mother has vascular dementia...just got the official diagnosis last week (even though of course the problem has been going on for awhile). Another thing, I am not my mother's caregiver. Since this past July mom has been living with my sister. They are in Texas, I am in Indiana.

At this point my sister is no longer able to have mom live with her. We are in the process of trying to find a "place" for mom now.

I try to help in anyway I can, mainly by providing any support I can, finding as much information as possible and mainly just listening. If you have any suggestions please let me know, I feel so bad about not being able to help both my sister and my mother right now. I try to get home when I can but it is a long trip and with school started just don't have time to go as often as I wish. I have just recently found sites and have visited some chats that are a big help. The guilt of not being there to help at this time in my mother's and sister's life is huge. Also, much to my pleasure my sister is finally reaching out a bit to others. It has never been a problem for her to with me, but persuading her to reach out for support from others has been tough!!! I keep trying to convince her how important it is to take care of "her needs". I will forward your site to her. Just the other night she did come to a chat with me and actually asked a question. YIPPEE!!!!

Well, didn't mean to run on so....Thanks again. And I can not tell you how much it helps to have you and all the others reaching out to others.
Terri


From Rootsflo

Just wanted to let you all know that I just received Grace's death certificate, and yes, yes, yes, right there on the cause of death was Alzheimers Disease!!!

Although the tears started flowing again when it was handed to me, I am really glad to see that the doctor put AD as the cause of death.

Thank all of you again for the thoughts and prayers.

Love and Hugs
Anna and Family


Helpful Link

A new site:
Welcome to The Gathering Place, where people dealing with Alzheimer's can "Gather"
http://www.theribbon.com/gatherplace


Don't let the Ghosts and Goblins get you!!

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)

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