The Ribbon - Care for Caregivers
Volume 7, Issue 5
March 14, 2003

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

I'm getting this issue out a bit early as I don't think I will be able to work on it later this weekend. As I speak my Mom has slipped into a comatose state preparing for death. She had her surge of energy over the last two days and now she is not responding. So far her respirations are not labored and it seems she is breathing easier than she has in days.

The family has been gathered for a week almost and no one is ready to leave with the thought that they will have to turn around and come right back. Though this time is extremely sad, we have had some great fun since we are all punch drunk. We have been taking shifts at night sitting up with Mama. She has been very restless and the Hospice nurse says that is called "terminal restlessness". She will take her oxygen off and she really needs it now.

It has been hard on my husband, Nick as there are so many people around. He can't deal with so many for very long. He knows Mama is dying but he can't grasp why we want to stay with her so much. Gosh how I hate dementia of any kind!!

I know y'all are probably reading this and wondering "Why is Jamie doing The Ribbon when she is handling this?". Well the answer is that it helps my mind focus and it is a way of touching my friends and acquaintances and feeling the kindness and love and prayers that y'all have sent out to me. They have all been noticed and felt. I've been so touched and blessed.

When Mama's time comes to "Cross the Creek" I will let Karen know and she will let all of you know. http://crossingthecreek.com/(Link: http://crossingthecreek.com )

My love to all of you,

Jamie


Sleepless in Seattle, Baltimore, Rochester... Why Mamma Doesn't Sleep

by Mary C. Fridley RN, BC

The number one reason for institutional placement of someone with Alzheimer's disease is nighttime wakefulness. If you're living with a loved one who has Alzheimer's disease sleep may be a distant memory. Here's a familiar scenario: it's 2am and your loved one is awake, ready for the day, and no amount of talking on your part is going to get her back to bed.

For your loved one with Alzheimer's Disease time has no meaning. Yesterday is the same as today and 2am is the same as 2pm. Now add that to normal changes occurring with age and you have a double whammy! Even though your loved one has dementia she will still experience normal changes that effect quality of sleep just like you and me.

The need for an average7 to 8 hours of sleep a night doesn't change as we get older. But sleep becomes more fragmented, time spent in deep sleep is shorter, and it's not uncommon for older adults to nap during the day to make up for nighttime depravation. For someone with Alzheimer's disease sleep is even more elusive due to confusion and disorientation and caregiver concerns about daytime napping. However, there are some things you can do to help promote better sleep.

Provide structured activities during the day that are both physically and mentally stimulating. A short nap (about an hour) right after lunch can also be helpful. Contrary to popular opinion an early nap will not cause your loved one to be more wakeful at night. Exhaustion from sleep depravation is more problematic and may contribute to 'sundowning', the evening agitation so commonly seen in Alzheimer's disease.

Avoid chocolate, spicy or gas producing foods, caffeinated beverages, and stimulating activities in the late afternoon and evening. Maintain a sleep routine for your loved one and be consistent about the time to go to bed. Put a large faced-clock in the bedroom along with a note about what time to wake up.

Be sure there is adequate lighting and a clear path to the bathroom. Decreased bladder capacity is normal with aging and many times wakefulness is caused by the need to urinate and agitation from the inability to relieve the urge. When your loved one wakens, don't make a big deal about it. Assist her to the bathroom and calmly orient her to time. Encourage her to go back to bed but don't force the issue, it may only cause more problems. If she rummages in her room, and it's not harmful, allow the behavior to be.

Nap when your loved one naps. It's easy to fall into the routine of doing chores while she sleeps, but your sleep needs must also be met. The chores will still be there when you wake up and with both of you refreshed they can be done together.
If she's taking a cognitive enhancer like Aricept, Exelon, or Reminyl you're most likely giving it in the evening. In some people these medications can have a stimulating effect. So, if your loved one has trouble sleeping, try giving it in the morning.

Medication is also available for nighttime wakefulness that is out of control or becoming detrimental to your health. Don't be afraid to talk to the doctor about it. Just be aware that sleep inducing medicines have side effects so additional safety measures, like preventing injury from falling, should be applied. Always start with the lowest dose and increase as recommended by the prescribing practitioner.

If nothing works, it may be time to consider alternative placement. Assisted living facilities and nursing homes are equipped to manage this behavior and most do a good job. Research the facilities through your local Area Agency on Aging, by talking to family members of residents, and unannounced visits to get as much information as you can before making a decision. Don't think of placement as a personal failure instead think of it as another caregiving experience on the journey through Alzheimer's disease.

God Bless.

Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net (geroresources@comcast.net).


In Passing: Those We Must Remember

From AZUREE1650@aol.com (Charlene)

Dear Jamie and Karen, and those of you who have been there since the beginning.

My dear sweet Mother passed away on February 7th.

Please accept my gratitude for the compassion "The Gathering Place" has given me during the last eight and a half years of my Mother's life.

Your generosity of spirit provided me with the support, confidence and strength to be attentive to my Mother, right up to her last breath.

My biggest fear was, when do you know, "enough is enough?" My Mother decided that when she stopped eating, five day's prior to her death. It was terribly difficult and emotionally draining as I wanted to keep her. Hospice was called in and they gave me the direction and strength to remain calm and attentive. I will be forever grateful. My Mother and I were alone for a little over an hour before her final journey home. An hour I will never forget. I softly, played her favorite song, "Ave Maria," in the background as I gently stroked her face and told her over and over, how much I loved her. One month later, I miss her so much, yet she will remain in my heart, forever!

Charlene
(AZUREE1650@aol.com (AZUREE1650@aol.com))

Please join us in sending your deepest sympathies to Charlene and her family. Our thoughts and prayers are being sent.


Clinical Trials Web Program

The Oregon Center for Applied Science (ORCAS) seeks people concerned about an aging loved one with memory problems to test the effectiveness of a new educational Web program. The Web program, supported by the National Institute on Aging, offers strategies for dealing with common problems, balancing home and work demands, coping with stress, and more.

Volunteers must sign up for the research study by MARCH 25 and will receive $50 for participation. Study participants will be asked to use the Web site and complete 2 on-line surveys (30 days apart).

Go to http://www.agingfamily.org for more information or to sign up, or call 1-800-934-0626.

Please pass this information along to others who may be interested.

Thank you!

Sincerely,

The Staff of the Alzheimer's Disease Education and Referral Center
a service of the National Institute on Aging
National Institutes of Health
U.S. Department of Health and Human Services


Little Girl Lost

Little girl lost can I help you
Can I help you find your way?
Little girl lost can I help you
Won't you please decide to stay?

Little girl lost can I touch you
Can I wipe away your tears?
Little girl lost can I hold you
Can I take away your fears?

Little girl lost do you know me
Do you remember who I am?
Little girl lost can you trust me
I wonder if you can?

Little girl lost don't be frightened
I know you've lost your way
Little girl lost please don't leave yet
Oh won't you please decide to stay?

Little girl lost I know you're tired
For your journey's been too long
Little girl lost I know that much too soon
I will look for you but you'll be gone.

Little girl lost you look so happy
Is that a smile I see upon your face?
Little girl lost could you be trying to tell me
You've finally found your peaceful place?

Little girl lost as I look into your eyes
Which are no longer filled with fear
Little girl lost my heart longs to keep you
For I need to always have you near!

Little girl lost I must be happy
You have finally found your way
Little girl lost I must be so very thankful
That God let you leave heaven for even a brief stay.

January 16,2003
Ellen from Detroit, MI

From Ellenbabe1@aol.com (Ellen)


Help Study the Impact of Alzheimer's on Children and Grandchildren

Alzheimer's affects not only the patient, but the entire family. What are the challenges and joys that they face? Dr. Sharon Hamill, a developmental psychologist from Cal State San Marcos, has received a grant from the National Institute on Aging to study how Alzheimer's impacts Sandwich Generation families — the adult children and grandchildren of Alzheimer's patients. We are looking for Mexican-American or white adult children of Alzheimer's patients; these adult children are married and have at least one 14-18 year-old teenager in the home. The Alzheimer's patient does not have to be living with the family. Families who complete a 30 minute telephone interview will receive $15 for their participation and a copy of the study's findings. If you or someone you know qualifies, please call 760-750-3684 or email us at care4ad@csusm.edu (care4ad@csusm.edu). Please help us to help families coping with this devastating disease.


Email Bag

From Ellenbabe1@aol.com (Ellen)

Thank you so much for publishing my letter about my mom's passing away and also a poem I wrote for her..

I brought her ashes home today and it has been very difficult to accept that her beautiful body is in this tiny bronze container...how could a heart that big now look so small?

Bless you all..you remain in my thoughts and prayers as always...

ellen


From PampMom@aol.com (Debbie)

Hi Jamie,

I've been wanting to write and let you know I've been thinking about you, and with the new Ribbon today, it seemed like a good time. I am so sorry you have been going through such a rough time. I hope you know my thoughts are with you, I admire you so much for all you do.

We have just been through the issues of when is enough again, with the worsening and passing of Marge's mom, Dorothy. I know that was the hardest part for Marge, just letting nature and God take charge. There was really nothing anyone could say to make her choices easier. We did remind her, though, to think what she would want if she were in her Mom's position. This she was sure about. She also called hospice, but her mom only lived a few weeks after they became involved. There is never a "good" answer to these decisions, like Kev told me, you just have to make the best decision you can with the information you have at this time. I'm so sorry your husband cannot be more supportive, you really need him now, but as you said, he is probably offering all her can with what he is going through.

I won't take up too much of your time, I just wanted you to know my heart goes out to you, and I'm sending a long distance hug to one of the most special people we have ever met. If you ever need an ear, I've got two!! Take care, Debbie.


Remember even though the days may still be cool where you are, Spring begins on March 20th. Hooray!!

Hugs and Peace,
Karen and Jamie

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