Volume 1, Issue 9 - The Ribbon Newsletter

Issue 9

Since our own KMenges581 (Karen) sent in an article this week about what she is doing we will be starting a new section called "Happenings" . We hope you will let us know what you are doing or what events are coming up in your area concerning Alzheimer's. What you do may give someone else an idea to use where they live. Share your ideas by sending an e-mail to KMenges581.

Caregiver's Checklist

What you should do and know at the different stages:

STAGE II and III

Decide who will be the primary caregiver.
The primary caregiver needs to realize that the job ahead will be hard and help will be needed.
Decide which of the family members will help the caregiver and decide how much help they will be able to give.
Talk to other family members (brothers, sisters, etc.) and ask if they will be able to help with the patient in some way. Maybe they can help one day a week or one weekend a month.
Obtain an identification bracelet for the patient.
Remove important identification, hospital, and credit cards from the patient's purse or wallet so that those items will not get misplaced.
Establish a good relationship with the patient's medical doctor.
Talk to the doctor about the patient's ablility to drive.
Meet with a lawyer to get legal advice on decisions that need to be made about health care and finances.
Learn all you possibly can about the illness so you can deal with it in the best possible way.
Try to teach family and relatives about the illness so they will understand what is happening to the patient and be of some help to the primary caregiver.
Find a good support group in your area and attend the meetings.

STAGE IV

Reassure and comfort the patient, repeatedly, with words or hugs.
Give the patient time alone if he or she needs it.
Keep your sense of humor.
Don't take what the patient might say or do personally.

STAGE V

Be patient and make an effort to guess what the person is telling you.
Read the patient's body language.
Ask questions that offer choices (For example: ask "Do you want orange juice or coffee?" not "What do you want?").
Help the patient save face or avoid being embarrassed.
Ignore wrong answers. Don't argue.
Keep the anxiety level down to prevent catastrophic reaction.
Stay with the patient during an activity.
Expect to have to reengage the patient in the activity frequently.
Don't try to get a restless patient to sit still or lie down.
Seek respite for your own health and well-being.
Do not use logic or try to reason with the patient.
Never assume the patient does not understand what is being said or done.

STAGE VI

Be prepared to help the patient judge distances, find chairs when sitting down, and keep his/her balance.
Keep a watchful eye and step in gracefully when the patient needs assistance with feeding, dressing, and day-to-day activities.
Ask questions that include answers.
Replace worn-out items in the patient's wardrobe with clothes that are easy to put on and take off -- such as pullover shirts, pants with elastic waistbands, shoes with Velcro straps.
Make sure shoes are a good fit.
Patients sometimes cannot tell when the water temperature is too hot. Therefore, check the temperature setting on your home's hot water heater to prevent scalding.
Make a safe sleeping area because patients may get up confused during the night. Keep objects out of pathways to the bathroom and other rooms.
Let the patient eat with his or her fingers and cut food into pieces he or she can easily eat.
Be sure tea or coffee is not too hot.
Learn the Heimlich maneuver and also CPR.
Include exercise in the patient's daily routine.
Choose outings that do not require concentration and that don't last too long.
If you are unable to have a live pet, fill the vacancy with a stuffed animal.
Do crafts, one step at a time with the patient. The easier the craft, the better.
Make sure anything you leave lying about is harmless.
Remove or cover mirrors and other reflecting objects.
Allow rocking and repetitive behavior. It helps to relieve stress in the patient. If it distresses others, distract the patient with an activity or remove him or her to another room.
Recgonize the good that comes from even the simplest things you do.

STAGE VII

Do not attempt full care without assistance.
Exercise the patient by moving each part of the body gently.
Allow children and pets to play with the patient.
Take the patient outdoors several times a day.
Give the patient pleasure with music.
Dance with him or her or move his or her arms gently to the music.
Be alert for signs of developing physical problems.
Provide the patient with a twin bed or hospital bed.
Bathe the patient daily and give a bed bath if necessary.
Keep the patient's hair short for easy care.
Lubricate and massage the skin to prevent bed sores.
Cushion sensitive areas of the body with pillows.
Move a chair or bed-bound patient every hour or two.
Talk with the patient's doctor about whether the patient should be kept in bed and about problems with toileting.
Always have assistance when trying to lift the patient.
Establish a routine to avoid bowel and bladder problems.
Wear rubber gloves if you must come in contact with body fluids.
Provide partial adult diapers or full diapers as needed.
Always accompany the patient when he goes to the bathroom.
Keep patient's fingernails and toenails clean and trimmed.
Watch for dental problems, clean the patient's dentures, and/or assist the patient in brushing after meals.
Check glasses and hearing aids to make sure they are clean, they fit, and they work.
Provide food that can be eaten with little effort.
Be careful about choking. Give the patient food a little at a time to prevent him from eating too quickly.
Watch for signs of dehydration (not enough fluids in body).
Provide frequent snacks to make sure that the patient is getting enough food and drink.

The above lists are adapted from the book Alzheimer's: A Handbook for the Caretaker by Eileen Driscoll.

Happenings

Being a part of the Alzheimer's and Dementia Support Group for almost a year and ahalf has been the life line that I needed to work through the difficulty of accepting and coping with my mother's diagnosis. Today I went to a local support group, asked to speak there by the facilitator, the administrator of a local NH with an AD unit. It was a wonderful experience, to see these people, just like us. To share with them the invaluable information that I have received on the Internet. To open their eyes to the wealth of information that is available to us. They sat in wonderment as I described how I "stumbled" in a chat room one day, and found these wonderful, caring and giving people who have helped me and my family to find the strength to carry on. It was a well attended meeting of about 15 people, mostly older. A man named Tom who is coping alone with his wife's illness. She is only 69 and was diagnosed 4 yrs ago. There was Emil, his wife passed away just recently. He said he still needs help. 57 yrs they were married. And there was Gene and Millie. Millie has dementia and is scared. Real people, real faces, real tears. We shared and I thought of all of you and how much all of you mean to me. Being older, most of them don't have computers but their grandchildren do. And they are all so anxious for help. I took along copies of The Ribbon and instructions on how to find us on AOL. There was nothing to bring home. It made me realize how we must all continue to reach out, to talk to someone who is not getting the answers they need from their doctor or who thinks this is so unusual or that they are alone....we must keep trying to get the word out, to raise awareness. I hope to do this again. My mission is to spread the word and to keep trying to enlighten and comfort those who are dealing with this terrible illness. It is the sharing that keeps us afloat, In Love and peace, Karen

Medical News

From KMenges581

Keep Alzheimer's Patients Talking
If you have a friend or relative suffering from Alzheimer's disease, keep them talking. A Florida researcher says simple conversation may be an important therapy for those with moderate or severe forms of the debilitating illness. Writing in the Archives of Psychiatric Nursing, University of Florida researcher Ruth Tappen says many Alzheimer's patients often stop talking due to fear or embarrassment over memory lapses. But many of those individuals "retain more self-awareness, responsiveness to their environment and ability to connect to others than is generally recognized." She says her four year-study of more than 70 Alzheimer's patients, seeking a link between mental performance and exercise, indicated that those engaged in conversation after exercise demonstrated an increase in descriptive skills. Further, other patients indicated a willingness to walk and talk if such conversation was initiated by other patients, Tappen says.

Email, email, we get email

From Bobbi191

Thank you so very much for the information. The time I spend in the chat room helps cope with the rest of the week. At least I don't feel like I am alone in this situation. I really appreciate all the work you put into this and all the information I get from the Ribbon. Thanks Barbara

From MeeMawMoe

Thanks for another great newsletter. You both are doing a fantastic job. I want to thank you and the group for everything. Even I don't always chat much when I join the support group, I am always listening and taking it all in. I enjoy feeling a part of the group, even though I don't like to face the facts sometimes. I am still in the process of feeling sorry for myself a lot. lol But besides all the sharing and helping one another, I love the jokes and laughter that is there. And I also feel the love that you have for one another. I love to laugh, therefore my family has to endure my silliness sometimes. Even my husband laughs at me, well, most of the time, good therepy for him, I think. I think our teenage daughter gets a little perturbed sometimes though. lol Again thanks for everything. I hope someday I can offer some help to you, instead of taking it all. Love, Sharon

From PampMom

Thank you so much for the newsletter. Each issue just gets better and better! I hope you know this newsletter not only benefits those in the support group, but is shared with many people outside the chat facing similar circumstances. You are doing a wonderful job and it is greatly appreciated! Pampmom

From SARAHGOOD

I just received a copy of THE RIBBON Issue 7 from a dear on-line friend. I cannot tell you how appropriate the timing was for this! My 81 year-old mother is in the early stages of what I believe to be Alzheimers (next week she undergoes MRI of the head to determine if it's really Alzheimers, dementia, or tumors) and is in transition from semi-independent living to a full time live-in caregiver after several episodes of falling in her apartment and five weeks at a nursing home for follow-up physical therapy for a compressed lumbar vertebra. (I might also add that two years ago she was hospitalized six weeks for Congestive Heart Failure.) I am a nervous wreck trying to determine what is best for her, given her financial situation (live-in is $120 per day) and juggling her myriad medications. I cannot even begin to explain the guilt feelings I am enduring trying to ensure my mother's well-being while making life a little more bearable for my family !!!! These decisions are not the easiest as I have a 6 year-old and a 10 year-old at home and my husband travels 2-3 weeks per month. The point I guess I'm getting to here, is PLEASE may I be added to your distribution list of THE RIBBON? This appears to be exactly what I need. Also, is there an online support group that meets occaionally to discuss such problems? I would appreciate any information you could provide. Thank you! --Sarah--

From NO900

Thank you for The Ribbon #8, I read all and it helps me to cope, however I find most people are caring for parents and I am caring for my husband who has short term memory, he knows most people but can't remember their names, My main problem is dealing with the same questions over and over again, I answer over and over again until I want to scream, I know that he can't help it but what I don't understand is that he can remember quesitions but not answers. I would like to hear from people dealing with husbands because there is a big difference with a husband than a parent. Thank You

From TALLY98

Dear KMenges581 and the rest of the Alzheimer Group, Hi everyone. Sorry I haven't been at the chat for quite some time. I miss all of you alot. Especially the hugs. I've been very busy with work and helping my Gramps deal with his Alzheimer's. I just wanted to let you know that you don't have to send the Ribbon Issues to me anymore. You can send them to someone else who would benefit from this terrific newsletter. I want you to know that the Ribbon newsletter has helped me more than you'll ever know. I somewhat understand this horrible disease in a way that I can help my Gramps better. The same goes for the group chats. I've enjoyed them, cryed in them, given hugs out and recieved them, and found alot of useful info in them. Please know that I'll continue praying for you and your families. We're all in this together and we're not alone. Take care and GOD bless. Love and {{{Hugs}}}, Kelly Jo :-) Smile GOD loves you TALLY98@aol.com P.S. I know where to find you, if I may ever need you again. Thanks for everything.

From VeeBeeLV

BEDTIME

by Vi Berger Bill doesn't like to go to bed. He likes to sleep - but not in a bed. He'll sleep on his recliner, on a couch, on a chair, anywhere but in bed. I don't know why. I haven't figured it out yet and probably never will. He sleeps like the proverbial log. The only time he gets up is to answer nature's call and then promptly falls asleep again. It may not be on the same couch in the den, he might have wandered out to the living room and tried out that couch; he might have changed his chair; it doesn't seem to matter. He falls asleep. He has also decided that it is a waste of time to undress at night only to have to dress again in the morning. He goes to sleep fully clothed with shoes, socks, trousers, and his favorite bow tie adorning his shirt. I've tried to convince him that what he is doing is not right. It's not natural. People should go to sleep in a bed where they can stretch out and rest their bodies. They should also rid their bodies of their daytime clothes so that their bodies would have a chance to breathe, I tell him. I talk - no good. I reason - same result. I cajole, I tease - a deaf ear. I've even used sexual blandishments. He doesn't know what I'm talking about. So I yell. Now he's really puzzled. What's he doing that's so wrong, he wonders. He's happy. He's rested. I'm the one who tosses and turns all night. I puzzled over my problem until the answer came to me one day while I was showering him. I noticed that the skin on his legs was very dry and flaky and I convinced him that he would have to keep his trousers, shoes and socks off so I could apply lotion to his legs. Sitting on the recliner, he raised the extension so that his feet were elevated and, generously, I applied the lotion rubbing and massaging it gently into his legs. He enjoyed the feeling of the massage and the attention he was getting. Because his legs were greasy and he didn't want to get his trousers dirty, he knew he could not get dressed again. He sat there waiting for his legs to dry and finally fell asleep. Well the massage became a daily routine. Bill actually looked forward to having his legs massaged and put up very little resistance for getting undressed (he still wore his shirt with the bow tie firmly attached.) So I made progress on one problem, but I still had to solve the sleeping problem. After a nice, warm shower, one evening, I took Bill by the hand and led him into the bedroom. The bed was turned down. I sat down, invited Bill to sit next to me and to my utter amazement he accepted my invitation. I showed him the pretty linen, the nice warm comforter, the soft pillows. He decided to lie down in the bed; I made sure the pillow was comfortable for him, covered him snugly and within a few minutes he was fast asleep. I looked at him, smiled at my victory, and quietly left the room. Later that evening I, too, went to bed. I looked over at Bill; he was still sleeping and, contentedly, I lay down and closed my eyes - until- I hurricane-strength waves shook me awake. . My eyes flew open. The light was on. Bill was on the side of the bed bouncing on it and laughing. "What the hell are you doing?" I yelled. "I'm on a trampoline," was the answer. So now as I pass the recliner and see Bill sleeping peacefully, I tread softly so as not to disturb him. He looks so cute, I realize, with his beloved bow tie securely fastened to his shirt.

LINKS

From AlzJane198

Alzjane198 is now hosting a mid-day chat on the web. It is sponsored by the New Mexico chapter of the Alzheimer's Association. You may join in at 12:30-2 pm EST on Mon, Wed, and Fri. For those who can use links click hereChat Room. For those who cannot type the following in your browser: www.nm-alzheimers.org/chat.html Join in with Jane and continue to help, learn, and enjoy chatting.

From BH AChambs

I remember alot of interest with Bill's location of how to alzheimer proof your home and ran across this site. Thought I would forward it to you. Thanks again. You guys really are doing a great job. Solutions for Living

Also remember to change your links for our regular chats if you haven't done so already. PEN is now Personal Empowerment IMH is now Positive Reflections Of course CSG remains the same.

See you in the chats, Karen & Jamie