The Ribbon Web
In the summer of 1998, The Ribbon web site was launched. Last year, our wonderful, talented webmaster, Weather91, secured our new domain name and www.theribbon.com was born.
Although we are fast approaching a hit count of 10,000, we all feel that our work has just begun. Our mission is, and always has been, to reach as many caregivers as possible, to share the information, feelings and pains that go along with being a caregiver for an AD patient. The stresses that go along with the caregiving are there, regardless of whether your loved one is living with you or across the country, in their own home or in a care facility. Alzheimer's Disease is an illness that creates many victims. The entire family is affected.
The Ribbon web site can be a lifeline. Write a note to other readers, search for a topic that is affecting your family, read medical articles, post a message on the message board, or go to The Gathering Place, our on-line chat room. All of these things are there for you, the caregiver. It is your forum. A favorite place is The Dedication Garden. You can read what other people have on their hearts, love and feelings for both loved ones and for caregivers.
We are constantly looking for new things to add to the site. We welcome feedback from our readers.......let us know what you would like to see there. In the months to come, we are planning on adding a Book Nook, where you can order, on line, books to help caregivers, some written by folks who are regular contributors to The Ribbon.
Our angel, Photoljt, is working very hard and putting in a lot of time in The Gathering Place, our chat room. You can access it from the main page of the web site. We hope to be able to help Linda out by hosting a chat on a regular basis in the near future. And we are also planning on having guests in the chat room. Watch future issues for announcements of times.
It is also a great honor to announce that The Ribbon was voted Top Alzheimer's Caregivers web site for the month of September. Our award is posted proudly on the main page of the web site.
Top Alzheimer's/Caregiving Sites,
brought to you by A Year to Remember
Keep in touch, put the site on your Favorites list, go there often...it is YOUR place.
Helping Your Elder Adjust to a Residential Facility
After grappling with the difficult tasks of caregiving to your loved one at home, you may find it necessary to place him/her into a residential care facility. Once you have selected the appropriate facility for your elder, be it an assisted living facility or nursing home, all of you will have to deal with the challenges of adjusting to new routines.
Some facilities have a "30 Day Rule" which allows them to decide whether your elder "fits in" with their facility. The 30 Day Rule seems more than fair to me. If a patient is going to show signs of adjustment the facility will be able to make the appropriate decision. This protects them from having to keep people they absolutely can't manage in their environment and who might injure other residents.
The vast majority of people with dementia have difficulty with adjusting to a new home environment. For at least two weeks the person can't find things, is besieged with new people and routines and has feelings of frustration and/or anger. There are some ways to help your loved one adjust:
Expect agitation for 2-3 weeks. You might ask your elder's doctor for a light prescription for Ripserdal, Haldol, or Seroquel and use it for a few weeks (in a VERY light dose) BEFORE the placement. The patient may be confused, but not upset and agitated.
Do not necessarily avoid visiting for two weeks, even though the facilities suggest this. Follow a formula something like the following:
-- Geri R. Hall, PhD, ARNP, CNS, FAAN
As the old woman reclines in her wheelchair, stares vacantly into space, no longer speaks, and cannot feed herself, you wonder why God allows her to live.
"What is her life worth?" people ask me about my mother.
Then I watch as the two-year old runs across the room when we arrive at the nursing home and touches her hand. His six-year old sister holds up a picture she's drawn and says, "See what I made for you, Grandma DeeDee".
With an effort, the old lady focuses on them and smiles. When the little boy sits in the chair beside her, she rubs his soft hair. The little girl gives her a hug. She can't communicate with the children in words, but the sense of love surrounds them.
The tears come to my eyes as I watch the generations respond to one another in a world where age and recognition don't matter. My grandchildren and my mother share through smiles and touch.
Mother Has a Purpose
"She has a purpose," I say to myself. She is touching the lives of her great grandchildren and teaching them about family relationships and caring, even though she doesn't realize it. God has a purpose in her life and a reason, it seems, for her to continue living even though it's not the type of life we would desire if conditions were ideal.
Ravages of Alzheimer's
My mother has Alzheimer's disease and has been in a nursing home for more than six years. She no longer knows who I am, or if she does, it's in fleeting glimpses. She can't feed herself nor care for herself.
But she does respond to touch and kind words with her lovely smile. My grandchildren, two-year old Alex and six-year old Kara, accompany me on weekly visits. They seem to enjoy these trips to the nursing home and seeing Great Grandma DeeDee and other residents. Alex doesn't understand who she is; but apparently she's become a familiar face because he'll pick her out of a room of residents and run to her wheel chair. Kara knows that Great Grandma no longer can care for herself and requires more attention than we can give at home.
Children Enjoy the Nursing Home
Both children also enjoy participating in special events at the nursing home - Christmas and New Year's parties, an Easter egg hunt, and sharing these occasions with family members. They also like to be involved in activities such as bingo, exercise classes, and crafts.
Families Can Participate
Placing a relative in a nursing home may not be the way we would wish to handle the situation if conditions were ideal. But life usually doesn't hand us perfect situations. We must consider the realities and act accordingly.
However, we still can experience interaction as a family unit. We can teach our children and grandchildren that the elderly are important and need our attention. The children also learn that family members have varying degrees of capability and require different kinds of care and love.
Not Depressing for Children
I think it's so depressing for children to see old people like that,"I've been told.
However, my grandchildren don't feel that way. To them it's fun to visit the nursing home, make Great Grandma DeeDee smile, receive attention from the other residents and staff, to draw pictures for Great Grandma and other residents, to have a tea party with Great Grandma. To them, being old is a natural part of life and going to visit Great Grandma at the nursing home will be remembered with pleasure and fondness.
"And we make Grandma DeeDee happy," concludes Kara, when asked why she visits a woman who doesn't know her.
"Grandma smiles," comments Alex and his face breaks into a wide grin. "Grandma happy."
Thus they reveal that enjoyment is a two way relationship as they interact with their great grandmother and form a bond of love between the generations.
(I wrote this piece two years ago. My mother is still alive and even less capable. However, visiting her at the nursing home still delights Kara and Alex as they hope I'll time my visits for the hours they're out of school and can accompany me.)
Mary Emma Allen
Mary Emma Allen is the author of the book about her mother's Alzheimer's, "When We Become the Parent to Our Parents." She gives talks to nursing homes and to groups about coping with this disease.
Visit her Web Site for more information:
In Passing: Those We Must Remember
Please keep me on your loop. You all are doing a wonderful job.
My Dad has passed now, and one of my goals is to begin research into EOAD, and send info I find to you.
Laura Dailey RD,LD
I have been a subscriber for several years........the archieved issues of The Ribbon really helped in me to be Caregiver to my Husband. I have just forwarded your latest issue to several new friends who have also become Caregivers to Mothers & Husband. I just noticed however that your new Newsletter failed to give a direct URL to your web site so someone can search your archieved newsletters and all those wonderful suggestions which I implemented and without which I would many times have been lost with ability to cope.
Could you please email me your direct URL so I can forward it to my new friends.
P.S. A Veteran and/or Veteran's Widow's benefits can move faster through the system with copies of Purple Heart, Combat awards and other such Awards.......It does not have to take months and months........I suggest anyone needing help get in touch with their local VAMedical Center and talk to a Social Worker who has been within the VA System for some time. If the patient is a Veteran then he may have Service Connected Disabilities for which he has never made claims before and that also needs to be addressed if one is looking at long time care, also the VA has Nursing Homes for the disabled Veterans & respite care for the family in many cases. Every case is an individual situation depending on the circumstances.
My husband was career Air Force, 26 years and I spent 3 years just learning the system. A good site to get advice/help is a web site of wonderful Veterans helping Veterans who have become experts at researching the VA Law..........
My husband went to a Salvation Army day care center. They were wonderful. My husband was at a fairly good level at that time although I couldn't leave him alone. The Director invited us for lunch and seated some very social people at our table (my husband still loves to be around people). She told him that she really needed some volunteers to help during the day and would he be interested. My husband couldn't resist the fact that somebody wanted him to do something productive. He was there the following day. We began at 2 days a week, quickly moved to 3 and then to 5 days a week. He liked the feeling of going to the "office". Although now he is in an Alzheimer facility I bless the day we found and used the Army.
Dear Karen, Yes!!!!!!!! The ribbon is number one. I enjoyed talking in the chat the other night. I want to thank you for the "The Ribbon" and also for putting in my poetry in Issue 7 that was just sent out. This is a wonderful support system with very caring hearts. Love to all and God Bless you all on your continued works with this disease. Love, Lynn
Congratulations! But we've known it all along.
Hope everything is going well for you and your family. I know I haven't talked to you lately, but thought I'd pass along an update.
Looks as though we have reached another plateau. As you know I was holding out for the waiting period necessary for some legal issues. We were planning on proceeding on placement for Granny this month, but someone upstairs intervened. Last week Granny took a turn for the worse and I took her to the ER. Well, she is still there and will remain there to be evaluated to determine where she belongs and a bed opens up in the care center. The doctor says he can't believe I've been able to care for her as long as I have. I wouldn't have been able to if it wasn't for the support you and the support chat provided by the NM Alzheimers Assn have provided me. But, he says that he doesn't see how I can possibly bring her home and care for her. Just like that, over night she goes from getting around as usual to the next day when something happens and things change over night. She isn't a happy camper and is still trying to get out of bed, and when I'm there, she wants my help to leave, which is hard to take, but she is sleeping most of the time. I can see where once she is placed she will probably deteriorate a lot faster.
Now, it is strange not having her here, but she is still here in spirit. I keep looking over my shoulder wondering when she is going to appear looking for me. It is weird being able to go outside and not have to worry about hurrying back in before she gets to missing me and looking for me. I've been able to ride my horse and do other things that I've missed for the past three years. I still haven't heard a word from my parents and I've heard (second hand of course) that my Dad has suffered several strokes and health wise it sounds like he isn't doing very well. Be interesting how things play out in the near future, but I'm still taking things one day at a time, you never know what tomorrow may bring.
We did recently finally get to purchase that double wide that I've been dreaming of the past three years, it is just a shame that granny wasn't able to enjoy it more. She had some problems adjusting to the new house though, but she was at the point she didn't recognize where she was anyway.
Well, guess I'd better let you go, just wanted to let you know I've been thinking of you and Jamie a lot lately.
Take care and God Bless for all the wonderful things you two do for us!!
We will take a moment to thank all of you for voting The Ribbon as the top Alzheimer's Disease website. We can't say it enough...We couldn't do it without all of you. You make us so proud. Until next time....
Hugs and Peace,