Volume 1, Issue 25 - The Ribbon Newsletter

Issue 25
December 23, 1998

Christmas really snuck up on me this year so I'm a little late in getting the following articles to you. If you have some last minute shopping to do, then maybe this will help.

Enhancing Life For the Older Adult with Alzheimer's Disease or Other Dementias: Some Gift Ideas

by Stephanie Zeman RN MSN

Most people with AD are fairly mobile and able to participate in some kind of activity for at least a few years. Gifts which promote activities have the potential to improve the person's quality of life, provided that are carefully selected to match the functional level of the person with AD..

The following suggestion have been divided into gifts for early stage dementia, the moderately impaired, and the severely impaired. These are only a handful of ideas from which to choose..

Early Alzheimer's and Related Dementia

Most individuals at this stage are: able to communicate fairly well, quite active and need to be engaged in some activity 60% of the day. They are aware of their condition and struggle to remain independent. Gifts that enhance independence or encourage activity are excellent choices..

Games: Simple, but familiar games, such as dominos, large numbered cards, an invitation to a Bingo game( be prepared to watch over your guest's card). Low priced items, but they have potential for quite a bit of enjoyment.

Tickets to a concert, musical, circus. Ball games can also be excellent choices. Any event without a plot to follow is a good choice. For safety either take the person or send along a companion

Taxi charge account for transportation to visit friends ( coordinate plans on both sides of the trip). This gives the person a sense of freedom and independence when they can no longer drive.

Old family photographs highlighting the major events in the person's life. Useful and enjoyable throughout the course of dementia.

Fruit basket or flowers are always a welcome gift.

For the Moderately Impaired

Persons with moderate stage AD will have some difficulty communicating, will need help dressing, and be unable to manage most daily activities without supervision or help. Wandering is often seen in this group. Exercise is important but attention spans varies so activities are best limited to fifteen minutes..

Simple to manage clothing. Tube socks are easy to put on correctly. Shoes are available with Velcro closures since shoelaces can be a problem. Jumpsuits with back closures for those with incontinence problems are very good choices.

Materials to sort. Sorting is an activity that most people with AD can enjoy. Try pennies and penny folders, a bag of buttons, or large beads.

Music. Especially the old songs often can bring back wonderful memories. Try to locate stores that have remakes of old albums. Also religious music or music of their country of birth can bring great pleasure.

Tape Church or religious services. Many people with dementia can no longer attend religious services. This can bring a great source of comfort.

Short car trips. See Christmas lights, flowers, seasonal changes.

The Severely Impaired

At this level the person has almost no understanding of the spoken word and is unable to speak coherently. Attention span is very short. In this stage of the disease people do not have the capacity to deal with anything but the simplest of tasks. Often times their long term memory takes them into the back and they may believe they are living in the home or community of their younger years..

Photo albums, family pictures, memory books. A gather of pictures from the persons past can help if any memory is still intact.

Pet visits. Most people with late dementia still enjoy the visits of dogs, cats, and other small animal.

Recordings of old music

Cuddle animals or even a lifelike cuddly baby doll.

Video tapes with pleasant sights such as garden, fish tanks and sounds can be soothing.

Hand/body lotions Most people with late stage Ad still derive comfort from touch. Try giving a hand or body massage. ( Do not massage legs, as blood clots can form in this population.

These are just a few ideas that may bring pleasure to those with AD during the holidays and on special occasions.

Stephanie Zeman has a Masters in Nursing, specializing in long term care and gerontology in since 1961. She has developed Geriatric Education Resources in 1987 to provide educational workshops consultations and support for family caregivers. This article in an excerpt from her book: Gift Givers Guide. For more information about this guide she can be reached at Geriatric Resources PO Box 7144 Fairfax Station 22039-7144

Coping With Grief During The Holidays

1. Find people you trust and with whom you feel comfortable, and talk about your feelings before the actual holiday or day of celebration. Keep talking and ask them to keep listening.

2. When you're afraid of wearing out your welcome, or wearing out the listener's ears, start writing a journal. Write down your thoughts, feelings, whatever you need to get off your chest.

3. Give yourself permission to cry---alone or with someone who will accept your tears without trying to turn them off. God gave us tears to shed---not to bottle them up. They're poison that needs to be cleansed from our bodies.

4. Listen to your body, and learn to be aware of stress. Then learn to relax.

5. Exercise.

6. Get proper nutrition and rest.

7. Remember your loved one. Make a list of all of the positive things you can remember about that person, all the good memories.

8. Reach out to others. Do something nice for someone.

9. Pamper yourself. Buy yourself a nice gift.

10. In the case of the death of a loved one, buy a beautiful Christmas candle and light it each day during advent as a reminder of your loved one.

11. If wrapping gifts seems to difficult, ask someone to help you or to do it for you.

12. It's okay to change family traditions.

13. Give a special offering to your church or favorite charity in memory of your loved one.

14. Stick to your regular routines---wake -up time, bed time, go to work, church, etc.

15. Make a list of things to do.

16. Give yourself permission to laugh and enjoy the holiday.

17. Concentrate on the good things. Try to keep your thoughts and attitude positive.

18. Be reasonable about your expectations for the holidays.

19. Be gentle and patient with yourself.

20. Tell your family and friends what you need from them during this difficult time.

21. Thank God for the years you had / have had with your loved one.

22. If hanging up a Christmas stocking for the loved one, do something different with the stocking. [fill it with notes or flowers, something they enjoyed].

23. If they have passed away, place a wreath or appropriate flowers on the resting place. It's okay to share the holiday season with them.

24. Again--talk and cry, talk and cry. Talk to a trusted friend, a counselor, a pastor. Talk to God, talk to your loved one. Take time daily during the holiday season to express your grief. Cry if you need to, remember with joy the good times. But whatever you do, don't pretend that it hasn't changed.

**Editor's note: A lot of us do not realize how early we start the grieving process. It starts long before our loved ones actually pass on. Remember this and understand why you may be feeling such a sense of loss, stress, or grief at this time. This pertains other special days as well as the ones we are going through now.

These wonderful articles are from the following website:
Alzheimer's Outreach
It is well worth checking out.

Announcements!!

Attention All Better Health Alzheimer's and Better Chat Members

Your Hosts BHost Ridl, BhostSTS, and BHost AC would like to wish everyone a Happy Holiday. The Christmas and New Year's Day Holidays fall on Fridays this year. There will be no scheduled Chats on those days. However, the rooms will be reserved and opened for any members that would care to chat.

COMMUNITY STORIES:

Better Health would like to begin regularly highlighting real life stories and experiences of our community members in our daily programming. We all know how empowering it can be to read about someone's experience, especially to know we aren't alone and that there are others out there who understand just what we are going through. As you certainly know, our community is made up of many special people. Sharing these stories will make Better Health really come alive and be a welcoming and embracing place to those who visit us. :o)

Each story should 400-600 words in length, and only the information you give the "ok" to use will be included (for example, you may or may not want to include your real name). This is up to you! :) Maybe you are interested in sharing your own story? If so, please email Rachel Henry, Community Program Manager, at s/n BHthRachel.

Book Links

From STSWILLIE

Alzheimer's Disease Bookstore

From BAvadian

Thank you for helping me feel so at home during your chat. I still have fond memories of the experience. Given the chat schedule you sent, I believe I can join you for a day or two as my schedule allows. I will look forward to it. Also, I will announce it to two support groups tomorrow as I believe others will benefit highly from your experience and knowledge.

Re: "Where's my shoes?" You may order copies in advance via our website which two kind gentlemen put together for us. Although the website is functional and you may print out an order form easily, it is still in the process of being updated.

Here is the hyperlink below and the address if the hyperlink does not work.

"Where's my shoes?" My Father's Walk Through Alzheimer's
http://www.isle.net/~cygnus/Alzheimers.html

Genuinely Yours,
Brenda Avadian
The Caregiver's Voice
Author, "Where's my shoes?" My Father's Walk Through Alzheimer's

Personal Note

I would like to take a moment to thank each of you who sent emails and email cards during the emergency with my mother. After staying at the hospital for 5 days and almost losing her twice in one night I was one tense person. I am one of the strong siblings and I was not able to cry to let off stress. When I got home and saw all the messages and cards I was able to cry my heart out. I really needed it and you guys gave me the right to cry. I was overwhelmed with your thoughtfulness and the taking of your leisure time to send a note to me. You guys are the greatest and I appreciate each and every one of you.
Love to all, Jamie

E-Mail Box

From NO900

Thank you for #24 Newsletter, I really would like to hear from caregivers taking care of their spouse, most people seem to care for a parent and I took care of my mother so I can relate to their problems but a spouse is different, I think the stress is far worse but that is my opinion. Soon there will be monthly meetings for support groups in my area where the caregiver will be in one room and the patients in another room will be entertained by volunteers. Thanks for listening. NO900

Editor's note: I think this could be a good thing for those who care for their spouses. You could communicate and draw strength from each other. I'm sure it is more difficult than the rest of us know. If you would like to respond through The Ribbon, in order to share with others also, then send those emails in!

From Jewish nun

I write this through tears, so it's blurry. I have felt so alone. joane's poem made me cry AGAIN. I am losing my best friend, my daddy. I know his body's almost 86, but inside there is his soul which I still reach occasionally with the strength of my love. It hurts physically, this slow separation. Mother and he live alone with full time help in their home. Mother's worn out, had dimentia too and screams at him. tell him to leave her alone and he cant walk away cause he fell and is using a wheelchair right now. he calls for help. For years now ive gone. My frustration is that I am not so well-have copd, and arthritis and need joint replacements. I am soo tired. I went to one Alz support group but cried out loud thru the whole thing and felt foolish.. (Im a grandma, not a child btw). i go to therapy, I reach out to loving friends...but no one can touch this sore in my heart..this hole. When i show up there dady says, "Thank G-d"..mom is depressed...then just as my brothers say maybe they should go in a home, mother orders gas logs and redecorates their bedroom 9from her bed with oxygen)..go figure!. I know from past experience that only G-d can heal my pain but I get angry with Him....Ive been a caregiver all my life for someone..a sick child, an emotionally ill mom, an alcoholic husband--i am so tired..today I just said NO to everyone...I cant go down the tubes. When my parents call that they need me..it's so hard to decide who to take care of ..me or them. I do the best I can. There are no words to explain the bond between my father and I..I have written about it--published one piece..have camcorded thier memories9But now he says who's that fellow on tv when i show him). I need support..from those who understand..I wish i could get rid of the guilt I have for not being able to be there at all times, and the guilt I have over feeling ill myself. How weird to know that G-d is there--and like a defiant child i wont turn to Him, not like I used to. Not my daddy, G-d....I miss him so. Sybil.

From SewingBabe

In response to letter from Currby4 Issue 23

I have seen leaning in people very occaisonnally. Usually it is a side effect of a anxiety medication and only occurs when the person is tired. The two people I saw it with in almost four years were people who walked almost constantly and were on medications to help calm the anxiety. Hope this helps.

From AZUREE1650

Dear Karen and Jamie,
My sincere wishes for a happy, healthy, holiday season for you and your loved ones. I want to thank you for all the useful information you have given us this past year, and most of all, your time. As we all know, our jobs as caregivers is rewarding, yet can be most difficult at times. The information you provide us is most appreciated.
Sincerely,
AZUREE1650 aka Charlene

From jelmslie@erols.com

Please send The Ribbon newsletter to my sister.

I am getting it and it is wonderful. I have been mailing it to my mom who is the caregiver for my dad. They live a few minutes from my sister who just got the internet and can now get it to mom faster. She loves your newsletter and brings it to her support group for others to read. Thank you for all your hard work -- this is such a needed venue for information and the ability to vent and reach out.

From Csober

BLESS YOU BOTH FOR ALL YOU DO,
I WANT TO THANKYOU AGAIN AND AGAIN
FOR BEING THERE FOR ALL OF US..
THANKS A MILLION TIMES OVER... YOU
ARE ANGELS AND HAVE EARNED YOU CROWNS.
CHARLENE

From SERENGETI

Just an interesting note on the research data regarding anti-inflamatories. My mother has AD and is in advanced stage at the age of 60. Her sisters are 80 and 72 and neither one seem to be displaying any signs of dementia BUT both of them have had severe arthritis and been on aspirin or ibuprofen for many many years. Seems reason enough to me to continue to take preventative advil or aspirin. My mom was an anti-drug (of any kind) person so had to be in extreme pain to even take an aspirin. From observing my family it would appear they may be onto something here. Thanks for your wonderful newletter. It's nice to be kept abreast of current findings and to know how others are dealing w/ the same situations.

Marcia

From Wesswon

I'm glad I've been able to get aquatinted with the Ribbon. It helps me to feel I'm not alone. We just place my mom in a nursing home a few months ago. My dad was trying to take care of her at home. She fell and broke her pelvic bone and went to the hospital. It was then that we decided she needed nursing home care. My dad was already worn out. Her fall was almost a blessing in disguise. Dad would have probably kept going, and it would have cost him his health. Again, thank you for a place for us to turn for support. We all need that.

From CM41620

Wow - what is a 'Care Giver' was so wonderful, I am a care-giver and each of those stories was about ME! I am so encouraged to know that my Grandmother is not the only one who carries around soiled depends and I am not the only one who has to keep pads on everything she sits on (including the car). Thanks again for a wonderful issue and another reminder that I am not alone.

Cari

From Mewaterbro
In response to Dayle829 Issue 24

I wanted to just say a word to the writer below but was not sure how to communicate with her accept through you folks. I just wanted to make sure that Vicki has checked into all the possible state aid that might be available to her mother, since she says her mother has nothing. I know in here in AZ we have a very progressive program for the elderly who need care and are out of resources and I know not every state does; but I just wanted to encourage Vicki to leave no stone unturned in researching options for aid--financial and otherwise. There must be some local government or other agencies which deal with seniors and aging issues, and she could start there. Maybe she has already done this, but if not I just want to urge her not to neglect any possibility of help. She sounds like she could really use it and deserves it and if there IS something in her state, it would be a crime for her not to be able to take advantage of it.
Sincerely, Margie

Karen and I wish each of you a Merry Christmas, Happy Hanukkah, Happy Kwanza and Season's Greetings. We also wish a Happy and Prosperous New Year to all. See you next year!

Hugs, prayers, and peace,
Karen (KMenges581)
and
Jamie (DrMOM1955)