Volume 1, Issue 7 - The Ribbon Newsletter

Issue7
April 17, 1999

I'm going to try this with AOL 4.0 but I'm not going to get fancy since there are still folks who are not ready to change. I like parts of 4.0 but some of it is taking some getting used to. Before we continue with the follow up articles on Long Distance Care we are going to share a letter we received concerning a major health issue.

I thought something that happened in our family may be of interest to all who receive the Newsletter. A family member who was living by herself was taken to the Hospital and diagnosed with "Ecoli". She is a very active 84 year old and her mental state is quite normal. Immediately I thought it was from contaminated food, but later found out that was not the case. She was washing her Attends out at night and then using them again. From this she got a "Urinary Infection" and then the infection went into the blood stream. It was Ecoli. Her kidneys shut down completely and her blood pressure was almost undetectable. She was very sick and because of her age they didn't think she would make it. But thank heavens she is a very strong lady and she finally came through it. Although she is still not well and may have repercussions from this. Her kidneys are still not operating at full capacity. I for one, could not believe someone would do this,. But I have been told it is quite common with the Elderly. So all you Caregiver's out there keep an eye out for this one. Hope this information will be of some help you all. A Fellow Caregiver

Saying Good-bye to Independent Living

It can be very wrenching to leave one's own home and move in with a loved one or enter an assisted-living facility or nursing home. On a symbolic level, it is a clear statement that the affected individual is no longer a free agent, but has become dependent on others. Reactions to this transition vary tremendously. Some people go meekly, relieved that others will take care of them, and glad to be rid of the increasingly confusing burdens of living independently. Others flatly refuse to leave their homes, and accuse family members of "kidnapping." A good way to ease people with early Alzheimer's out of independent living and into living with someone else is through a slow transition process: First a combination of frequent visits from caregivers who help with cooking and housework. Next, a meals-on-wheels program, a maid, and a daytime aid a few days a week. Then full-time at-home help--in either their home, or yours. In the transition away from independent living, there are no clear lines of demarcation that say: It's time to have full-time care. Use your judgment.

But here are some signs to look for:

Clear confusion.
- Increasing loss or misplacement of necessary everyday objects, for example, finding the person's toothbrush in the refrigerator.
Changes in personal care.
- Wearing dirty or ripped clothing.
- Wearing shirts backwards.
- Going outside barefoot.
Changes in eating habits.
- Food left out.
- Meals uneaten.
- The stove left on.
- Evidence of burned food.
- Evidence of eating of raw food that should have been cooked.
A proliferation of reminder notes.
- A person who can live independently may write a note: "Take out garbage Wednesday." Someone who needs more help might leave 20 such notes around the house--and then still not do the task.
Changes in home management.
- Running the air conditioning in winter, or the heat in summer.
- Leaving windows open in the rain, or the water running.
Changes related to the telephone.
- Conversations become increasingly vague as memory for detail fades.
- The person calls at inappropriate hours, or an excessive number of times, or not at all.
Handwriting deterioration.
- As Alzheimer's progresses, writing ability fades.
Wandering.
- You find your loved one walking up and down the street, unable to recognize home, or neighbors or the police call you about your loved one's wandering.

Once you make the decision that your loved one can no longer live independently, you must make the arrangements, because the affected person cannot. For family members who must manage this from a distance, the challenges are enormous. Contact your local Alzheimer's Association affiliate and the one closest to where the affected individual lives. Together, they can help connect you with resource people, organizations, home-care agencies, and supervised living facilities. For a while, it might be possible to manage the affected person with live-in help. This may be a good option in the early stages of the illness, when the person still has enough cognitive function to resist moving out. But as Alzheimer's progresses, and round-the-clock care becomes necessary. You might decide that the affected individual will move in with you. But no matter where the person moves--in with you or into a supervised facility--expect the transition to be rocky. Involve the affected individual as much as possible in planning the move. If the person refuses to move, it doesn't help to negotiate. Simply proceed, with gentle reminders that there is no other alternative. It's normal for caregiving loved ones to feel guilty, ashamed, anxious, and depressed about moving a loved one with Alzheimer's, especially if the person is nasty about it. Remember: You are not abusing or abandoning your loved one. You are doing the best you can to cope with a horrible disease. Expect transition problems. Changes are upsetting to many people who have full control of their mental faculties. Changes tend to be even more upsetting to those with Alzheimer's disease. If the person has moved into your home and has significant adjustment problems, don't face the situation by yourself. Get help. If the person moves into a nursing-home, staff are used to transition difficulties and can handle them. Over time, as the illness progresses, attachments to former surroundings fade.

Preparing To Be A Caregiver

It isn't easy to bring a loved one with Alzheimer's disease into your home. Do not do it impulsively. Those who cope most successfully plan the transition carefully and take a good deal of time--several months--to adjust to the idea and to allow everyone else in the household and extended family to adjust as well.

Consider:

Division of responsibilities.
- Who is going to take care of what?
- Are you prepared to shoulder the entire burden?
- Or are your spouse, siblings, children, and others willing to help?
- Can you arrange for other help? If possible, do this in advance.
Your marriage.
- What does your spouse think of housing someone with Alzheimer's? Even if your spouse is very supportive and helpful, all the added responsibilities and stresses and strains are bound to affect your marriage. Can you handle it?
- Really listen to how your spouse feels. Consider discussing your plans with a marriage counselor, clergyman, social worker, or other professional who can help you sort out how caregiving might affect your marriage.
Your children.
- Kids will be kids, and a lot of what kids do can be very upsetting to people with Alzheimer's disease. Likewise, a lot of what people with Alzheimer's do can upset kids.
- How do your children feel about sharing their home with a mentally impaired relative?
- How will their friends react?
- How will the presence of the affected individual affect your relationship with your children?
Your siblings and other relatives.
- You take in your loved one with Alzheimer's, and your siblings commit to helping out. Then they don't come through the way you thought they would. You confront them. They insist that they're doing everything they agreed to do.
- Meanwhile, you're stuck doing a great deal more than you thought you would. How would you feel?
- Or, conversely, your siblings spend more time at your home than you'd planned on. Perhaps they don't trust you to care for the affected individual. How would you feel about that?
- Or perhaps their constant presence puts a burden on you and your immediate family. How would you deal with this?
Your job.
- Can you provide quality care and work at the same time?
- Even if you can--and many people cannot--having a loved one with Alzheimer's disease at home can prove quite distracting while you're at work. Can you handle that?
- Do you have the kind of relationship with your boss and co-workers that would allow you some flexibility in scheduling? You might consider evolving to part-time employment, with part-time help.
Your home.
- Do you have room for the affected individual?
- Do you have adequate furnishings?
- Bathroom facilities?
- Are you sacrificing a den, family room, study, or guest room to house the person with Alzheimer's? If so, how do you plan to cope with the loss of that space?
- The long-term presence of any new person changes household dynamics in many ways. Try to anticipate as many as possible. Chances are, you won't be able to anticipate all of them.
Your finances.
- It's expensive taking care of a person with Alzheimer's--and as the affected individual's condition deteriorates, it gets even more expensive. Do you have the financial resources to cope?
- Are other family members willing to contribute?
- Does the affected person have financial resources you can draw on?
- Meanwhile, you may have to cut back on work time, or stop working altogether. Can you afford to do that?
Your leisure time.
- No doubt about it: Caring for a loved one with Alzheimer's cuts deeply into your free time. As the disease progresses, you may have to severely curtail relaxation time, hobby time, gardening, dates with friends, outings to cultural events, etc. Could you cope with that?
Your sleep.
- Like newborns, people with Alzheimer's often do not sleep through the night. That means that you may not be able to, either. Sleep deprivation causes irritability, depresses mood, reduces energy, threatens sense of humor, and makes daily stresses feel even more challenging. How do you plan to cope?
Your things.
- People with Alzheimer's disease don't mean to make messes. They can't help themselves.
- You can understand that intellectually, but what happens when you find your jewelry strewn about the house?
- Or when your spouse finds a crafts project destroyed?
- Or when your daughter finds her closet a shambles?
Your social life.
- There's bound to be less of it. Friends may be put off by the presence of your loved one. They may call and visit less, and you may have less time to call and visit them. How would that make you feel?
Your neighbors.
- Unlike a spouse, neighbors don't have veto power over whom you bring into your home. But the presence of someone with Alzheimer's disease in the neighborhood affects them as well.
- Their concerns are legitimate: The affected individual might wander into their homes, or step in front of their cars, or intimidate their children. How do you plan to keep the peace?
Your own physical and mental health.
- The responsibilities of caring for a loved one with Alzheimer's disease can be overwhelming. While you're taking care of the affected individual and managing all the changes that means for your home, family, and finances, you must also carve out time to take care of yourself.

An excellent link to help you out: Solutions for Living

When To Consider Relocation

Everybody has limitations. At some time, the patient's needs may be more than you can handle, or a behavior problem such as wandering may cause you to risk your health. If the time comes to consider placing the patient in a long-term facility, such as a nursing home, look at the situation realistically, practically and honestly. By acting responsibly in making decisions about care, you are not abandoning your loved one. Your time and devotion will continue to make the patient's life better wherever he or she lives.

In Passing: Those We Must Remember

BHAChambs informed us that a former member and host had a loved one pass. BHBill01 lost his mother.

Keep this family in your thoughts and prayers.

Email, email, We get email

From BBymaster

I am new to this support group, and I am very glad to know there is something out there for the support. Having seen my mother go from a very alert person in her 80's to someone that does not even know who I am is a very hard fact to deal with. I find it very hard to deal with the anger when soneone I work with (the people I work with are in their mid 20's to early 30's) says "I understand what your going through" when they don't have a clue what I'm going through. I know this sounds petty, but it makes me very angry. How can I cope with this type of anger?

From Csober

I WANT TO THANK YOU AGAIN SO VERY MUCH FOR TAKING THE INTREST AND THE TIME AND THE LOVING CARE TO REACH OUT TO SO MANY OF US THAT ARE JUST LEARNING ABOUT THIS DISEASE.I BELIEVE I COULD NOT HAVE MADE IT THIS FAR HAD I NOT LEARNED FROM THIS GROUP WHAT DEMENTIA IS REALLY ABOUT. ALL THE SHARING FROM THE OTHERS HAS LET ME KNOW THAT I AM NOT "CRAZY" AND MOST IMPORTANT THAT I AM NOT ALONE NOW. THANK YOU AGAIN CHARLENE

From Pmsdyny

My husband was diagnosed with A.D. in 1988, and died in 1995 at the age of 65. I know he was being affected by the disease long before 1988. We had been married for 42 years, had both written living wills, become one another's health care proxy's, and discussed what we would, and would not want, if we became ill. Feeding tubes were one of the things we agreed we would never want to use if it became just a matter of keeping us alive. Don was an engineer, a fine athelete, and was in superb physical condition before A.D. struck. What terrible things the disease does to a person physically, mentally, and emotionally. He was in diapers for over a year and a half. During the last six months his balance was terrible and he would often fall when he tried to walk, and not be able to get up. In the last months, he began to eat less and less. When he developed pneumonia and began to refuse food altogether, I knew what he would want . . . knew that I needed to let him go. I stayed with him almost 24 hours a day for 16 days in the N.H. to make sure that no one used any kind of forced feeding, oxygen, or antibiotics. He died very peacefully as I sat by his side telling him it was okay to go . . . Such decisions are so very personal, and ones that each of us must make in our own way, and in whatever way with which we feel comfortable. Just as is the decision of whether or not to use a facility of some kind. It doesn't seem to me that there are "right" or "wrong" ways. It is a tough thing to walk alongside a loved one as he or she disintegrates under our noses, and it seems so important to not feel as though we have to do any of these things one certain way, or the way anyone else does it, or the way anyone else thinks it should be done. With love and respect to all caregivers. Pat

From Poppybenny

I just wanted to tell you both how wonderful this newsletter was and what a great job both of you are doing. I really look forward to getting this newsletter. It makes me feel connected and not so alone. Thanks again for doing such a fantastic job.

From WilloRain

You have done a wonderful job at putting out our newsletter "The Ribbon". Great job !! As a poetry lover, I truly enjoyed having the poetry added, and wanted to Thank you. As this wonderful group of people have helped me through some difficult times, with my Mother, who has Alz., I am sending along a poem in hopes that I can, in return, help others realize they are not alone in this fight against this horrible disease. The first time my Mother did not know me, I was devastated... She just turned her back on me and walked away. This is where this poem comes from... the hurt... the loneliness...and the fear of what the future had in store for both my Mother and myself. God Bless you all, who have shown me so much Love & Support, and Thanks for all the Hugs!! Loraine (WilloRain) "The quiet one"!!!

From Ylbrd

My name is Cathy I live in Orlando Fl, I just read your story in the"Ribbon" newsletter. I just finished going through the exact same thing with my mother. Who died Feb 4, @8am 1998 and who I miss dearly. I took care of her here in my home for over 2 years. My Mom & Dad moved in with me from Connecticut in Dec 1995. My Father couldn't take care of her anymore by himself. The first thing I did, was tried to get a Dr. (she had been diagnosed with ALZ. 2 years before - they told my Dad to start looking for a Nursing Home!! that's all, no help) Every Dr's Office I called said they were not taking any new patients ( after I said she had ALZ.) Finnaly I called our Local Alzheimers Resourse Center and asked if they could recomend a Dr & they did. He was a Gerientologist (specializing in older people -Geriatrics-) He was also the head of the "Memory Disorder Clinic" AND a professor at local Medical school. I called the office they gave us an appointment for the following week. The first visit was a 4 hour exam he was "wonderful" he checked everything, did blood work & sent her for a MRI test. He diagnosed her with Parkinsons Disease but she did have dememtia /Alzheimers too. We muddled through the last two years with a lot of humor the hardest was the last few months since Sept 97 she's been in a hospital bed in our Family Room & the center of our lives. The Dr is everything..... he made suggestions, ordered a raised toilet seat. then a wheel chair. etc. He ordered Home health Care next, they came once a week to help me give her a bath. little by little it was 2x a week, then near the end 3x a week. All this help paid for by medicare, because the Dr ordered it. You need a Dr that works with you. Don't be afriad to ask questions. But FIND that Good Dr first. I am not sorry about anything I did. She died peacefully in her sleep no feeding tubes, no IV's , no hospital, just love & patience, medicine to keep her comfortable that's all. Good Luck , I hope you have other family members that can help you too.

God Bless,
Cathy

From FTSEFFECT

I wish I had at the last part of my Moms AD the info given today...... it would have helped me, if not her. She had home health PT etc but I think that it would have been nice to have Hospice. She aspirated on ice cream then was found to have pneumonia and just deteriorated and died within hours here at home with her family at her side.........very peacefully. Her last dies were very difficult and it took up to two hours to feed her a single meal. In spite of an air mattress and special nurses she had horrible bed sore on her tailbone. I will miss my Mom very much, but not the conditions that she was living in.......I know now that she is at peace and whole again..............Suzanne

From SASSYWANDA

Help!!! To make a long story short, I have taken care of my mom for the last 22 years and she has dimentia now and early signs of alz. She believes I have stolen money from her which is not true, I have financially taken care of her for years. So she called all the rest of my family (4 sisters & 1 brother) and told them this. well all but one knew better, so the one went with my confused mother and had my power of attorney taken away. My mother can put on like she knows exactly whats going on and try to convince people she was the nanny for the Kennedy's when John was president, and so on. Well after a family feud, I told my sister that took p.o.a. to take care of her now, and she half way is. My mother won't speak to me, she is tearing my heart apart and acts like it doesn't even bother her. I don't know what I should do, it's such a mess. We were always so close, and I was the only one for years to take care of her, I know she is not getting the care I used to give, but when my other sister told her I was so upset, she just blew it off, because now finally someone else is paying attention to her besides me, so she is content. I am so afraid something will happen to her before all this is resolved and I have let the two of them hurt me enough. I don't know if I should just stay away until she calls me, or should I go back for more. Please, I am open for any suggestions from anybody. wanda

From JRNYWMN

Aging Parents and Common Sense, a free 56-page booklet listing addresses and telephone numbers of organizations, fromt he Alzheimer's Association to the National Academy of Elder Law Attorneys. Available from the Equitable Foundation, 787 Seventh Ave., Box B, New York, NY 10019
The Do-Able Renewal Home, a 44-page manual on retrofitting a house for an older person with physical imitations; and
Staying at Home: A Guide to Long-Term Care and Housing, a 47-page aid to finding and paying for in-home services. Both free from the American Association of Retired Persons Fulfillment Center EEO1101, 601 E St., N.W., Washington DC 20049.
Survival Tips for New Caregivers, a 25-minute video ($4) available from AARP Program Resources Dept. P.O. Box 51040, Washington, DC 20091
Directory of Accessible Building Products 1996 (71 pages $4), a compendium of household items for the disabled, from barrier-free showers to stairway lifts. Available from the NAHB Research Center, 400 Prince George's Blvd., Upper Marlboro, MD 20774
Home Care for Older People: A Consumer's Guide (116 pages $13.50) and
Managing Your Health Care Finances: Getting the Most Out of Medicare and Medigap Insurance (88 pages, $12), both from United Seniors Health Cooperative, 1331 H St. N.W., Suite 500, Washington, DC 20005.

[all taken from Money Magazine/May 1996]

Karen, when I find the info on Triad, I'll send that on to you. Thanks, Ann found number for Triad....1-888-874-2343 ...is a support program designed to provide information and resources to help the patient, caregiver, and healthcare professional in managing the day-to-day realities or Alzheimer's Disease....is a free educational service sponsored by Pfizer Inc and Eisai Inc. in collaboration with the Alzheimer's Association and The National Council on the Aging. Ann

From Aroline1

Thank you for noting my sweet Irish Boy's passing. I have received email from the chat rooms and can't tell you how it helps. I want to stay with the group incase I might be able to offer some help. I also need to help mysellf. Please keep sending my the Ribbon. Susan

From LPNYFLGANY

Caregivers have something in Common with Geese

When you see geese flying in a "V" formation, you might be interested in knowing what facts scientists have discovered about why they fly that way.

1. FACT: As each bird flaps its wings, it creates an uplift for the bird immediately following. By flying in a "V" formation, the whole flock adds at least 71% greater flying range than if each bird flew on its own.
TRUTH: People who share a common direction and sense of community can get where they are going quicker and easier because they are traveling on the trust of one another.

2. FACT: Whenever a goose falls out of formation, it suddenly feels the drag and resistance of trying to go it alone and quickly gets back into formation to take advantage of the lifting power of the bird immediately in front.
TRUTH: There is strength and power and safety in numbers when traveling in the same direction with those with whom we share a common goal.

3. FACT: When the lead goose gets tired, it rotates back in the wing and another goose flies point.
TRUTH: Each of us needs to take our turn in giving direction for the good of the whole.

4. FACT: The geese honk from behind to encourage those up front to keep up their speed.
TRUTH: We all need to be remembered with active support and praise.

5. FACT: When a goose gets sick, or is wounded and falls out, two geese fall out of formation and follow it down to help and protect it. They stay with it until the crisis resolves, and then they launch out on their own or with another formation to catch up with their group.
TRUTH: We must stand by each other in times of need. We are fortunate that there are more geese in life than turkeys. Let's remember to uphold each other in friendship and to give each other a big "honk" more often. Makes you think doesn't it?

Hope you all had a nice Easter, Karen and Jamie