Volume 1, Issue 14 - The Ribbon Newsletter

Issue 14
July 24, 1998

A Note of Thanks

I'd like to thank all on my on-line friends for the tremendous outpouring of support I have received in the last few weeks regarding my move from NJ to PA. As many of you know, I made this decision to be closer to my mother. Brother John has been dealing with mom's illness alone and has reached the point where he is burnt out and needs help.I have only been here a week and I am already convinced that this move was completely necessary. Seeing Mom everyday, repeatedly answering the same questions over and over again, seeing her wear the same outfit 2 days in a row (if I let her), seeing her paranoia over her money, all clues to how she is continuing to decline and making me ever sure that I have done the right thing.The 400 mile distance between us would only have become more difficult to deal with, perhaps not for her, but definitely for me. I have received notes, poems, and prayers giving me encouragement and courage to go on. I thank you all from the bottom of my heart. Spending time with Mom and unpacking has kept me from the meetings but for a few moments here and there but knowing that you are all with me on this, well, it has made the transition so much easier. Hopefully, we will settle into a pattern soon that will allow me to return with regularity. I keep all of you in my heart and in my prayers and will be back soon, Love, Karen

No family is ever "ready" for Alzheimer's Disease. It is impossible to imagine the enormous demands and the changes that will affect the care giver as well as the victim...the reserves of strength, patience, and humor you will need. Ultimately, an Alzheimer's victim will require the same constant, watchful supervision as a small child. In other words, this disease does not only affect the person who has it, but every member of the family. Here are some tips that have helped others who have been confronted with many of the problems you now face.

Involve all family members. Caring for an Alzheimer's patient is a tremendous burden. By enlisting the help and support of all the family members, including those who live far away, you'll reduce the dangers of becoming overwhelmed.
Seek professional advice. An expert professional counselor who specializes in the problems of aging will be able to help you make wiser decisions.
Stay flexible. Instead of rushing to make decisions about everything at once, take time to learn as much as you can about the patient's condition and to evaluate your particular situation. Then try to break it into easier-to-manage sections.As you consider possible strategies for coping with each section, remind yourself to remain flexible. A plan that works today may become awkward by next year and totally impossible five years from now.

Each patient, each family and each set of circumstances is unique. Since the progression of the disease can vary widely from one patient to the next, the most livable solutions are likely to be the ones that are rooted in your own experience and understanding and can be adjusted to suit your specific needs as they may arise.

Most of all, REMEMBER that you're ONLY HUMAN! And there is only so much one person can do. Many people feel anxious and guilty no matter how much they do for their loved ones. To avoid this emotional trap, try to set reasonable goals and do your best to meet them. That is all anyone can DO!

NO ONE can care for an Alzheimer's patient alone! As soon as you learn of the diagnosis, you should begin making plans for the future. Enlist all willing friends and ALL family members. Consider relatives you haven't seen for a while, children who live far away, even children from the patient's previous marriage, if there was one. Not everyone can help in the same way but nearly everyone should be able to make some contribution. Children who live at a distance may be able to send money to help with some of the special expenses. Those with little money may be able to contribute time. Every family is unique and each must work out it's own strategy for coping with Alzheimer's.

Try not to leave anyone out. If there are family members you feel uncomfortable with, perhaps a social worker or other trained counselor can arrange a family conference for you. This is helpful because it means that someone other than you will explain exactly what Alzheimer's disease is and what kind of care will be needed. The family conference approach also gives family members a chance to share their feelings about the situation and to be specific about the kind of help they're prepared to offer.

Remember, your loved one will continue to change, physically and emotionally. When hired caregivers are needed, whether in-home or in a nursing home, it might be a good idea to display pictures of the patient BEFORE Alzheimer's stole the personality. Alzheimer's victims cannot control behavior anymore. It is good to remind people that this person lived a productive and loving life before Alzheimer's disease. This may even improve the quality of daily care.

National Newsletter - Volume 16, No. 2 - Summer '96

Eight year-old Brian Stansfield gets up early each morning to read the newspaper to his grandfather before leaving for school. Jessica Powers, 15, hurries home from her extra-curricular activities to cook dinner for her family. "When someone in your family has Alzheimer's, everyone has to pitch in and help," says Jessica.

A growing number of children and teenagers have grandparents -- or even parents -- who have been diagnosed with Alzheimer's disease. Often the affected person lives at home and children help provide care. Caregiving can be a 24-hour-a-day activity for some family members. And sometimes, care requires an adult's full attention, making it difficult for parents to consider how the disease affects their children. "Even most support services and resource materials are created for adult caregivers and seem to overlook children," says Paul Raia, director of patient care and family support for the Eastern Massachusetts Chapter of the Alzheimer's Association. "But young people experience different feelings and have unique needs."

Never too young to care

Even the youngest family member is affected by a loved one's Alzheimer's disease. Raia believes small children, in particular, benefit from information about the disease. Without it, erratic behavior that typically accompanies Alzheimer's can be misunderstood and even frightening.

Brian used to think he was to blame for his grandfather's periodic outbursts. "Since Thomas, Brian's grandfather, never directed his anger specifically at him, we never realized he felt responsible," says Denise Stansfield, Brian's mother. "Now we set aside time to talk with the kids about what's happening and how they're feeling."

"Open communication and education help make Alzheimer's less mysterious to kids," says Beth Boivin, president of the Alzheimer's Association's Northeastern New York Chapter and facilitator of a children's support group. "Parents should offer simple, honest explanations whenever possible." Boivin uses large, colorful puzzle pieces to explain how the brain works. The children in her group learn how Alzheimer's disease makes certain parts of the brain "sick", causing the person to act differently. "I always make sure to leave the piece that represents feelings intact, so kids remember their family member is sensitive and still needs love" adds Boivin.

Jim McCrea, Ph.D., researcher and author of Talking with Children & Teens About Alzheimer's Disease (see Resources, pg. 6) believes one of the most common mistakes families make is sheltering their youngest members from the person who's affected. "Studies show that children have a calming affect on people with Alzheimer's," says Dr. McCrea. "Young people can be extremely caring and resourceful, once they understand what's happening."

Sometimes, Brian is the only person in his family who is able to communicate with his grandfather. According to Denise, there are days when Thomas will only leave the house if Brian is there to encourage him. "When I'm able to help grandpa, it makes me feel good," says Brian.

Life as a teenage caregiver

Teenagers have different, yet equally important needs. "Being a teenager isn't easy, but being a teenager whose mother has Alzheimer's disease is especially challenging," explains Jessica, whose 46 year-old mother is in the early stages of the disease.

"It's the little things that are the hardest," says Jessica. "Like wondering if she'll remember to pick me up from school or recognize my friends." Raia believes it is emotional support that teenagers affected by Alzheimer's need most. "Sometimes, they seem completely unaffected by what's going on, and that's OK," explains Raia. "What's most important is that they have someone to turn to when they need to talk." Jessica agrees. "I talk to a few close friends, but mostly, I still talk to my mom."

In some families, teenagers often are expected to assume the unofficial role of "assistant caregiver." Boivin doesn't discourage parents from involving teens or even younger children in daily care or household chores. But she does caution them about overwhelming young people. Boivin suggests finding a few reasonable activities that the young person is capable of doing, and asking them for some assistance. "It's appropriate to ask for their help," says Boivin, "but be careful not to overload them with too much responsibility. You've got to allow them to be kids, too."

Help is available

Children, like adults, usually feel better when they realize they're not alone, and that there are other young people they can talk to who are going through similar experiences. Many chapters of the Alzheimer's Association have additional information available specifically for young people, and sponsor support groups especially for children. To locate the chapter nearest you call (800) 272-3900.

Tips for parents

Talk to your children about Alzheimer's disease. Discuss changes in the affected person's behavior as they occur.
Encourage young people to ask questions. Help them understand what's going on and provide age-appropriate information and explanation.
Remind kids that the behavior of the affected person is a reflection of the disease. Help them understand that the person may not always mean what they say, or intend to act the way they sometimes do.
Educate and involve their friends. Ask your children if they've discussed Alzheimer's disease with close friends or classmates. Talk about ways to make their friends feel welcome and comfortable in your home.
Let them help. Find activities that the young person can help with. Be careful not to overwhelm them with too many caregiving responsibilities.
Set aside time for the kids. Find some time each day to give your children some indivdualized attention, reassurance and emotional support.

In Passing: Those We Must Remember

Cape1313

I just wanted to take this opportunity to thank you and everyone else who have emailed me or contributed information through The Ribbon.

My father passed away on June 10, and I'm sorry that I have been so slow contacting you. You have done an outstanding job in getting information out to people like me.

If I can ever help anyone with a loved one who has AZ, I will be happy to lend some of my experiences, both good and bad. I learned a lot through trial and error and if my experiences will help others, I would like to offer any assistance that I can.

Again thanks for your help.

Carl Riltchie

Gail325

I want to thank-you for all the information that you gave me concerning my granddad, but I did not have to make a decision at the end. My granddad Clinton Brown passed away on Sunday morning very peaceful. We were all at his side when he took his last breath. I will miss my granddad very much, but I know he is in a better place.

Linda

Grief and Guilt

Contributed by STSWILLIE

Catherine Esterheld from Sandia Hospice recently spoke about "Grief and Guilt" at an Albuquerque Manor Support Group Meeting. She offered wonderful insight into these two feelings which often plague caregivers.

People seem to understand grief/pain resulting from a sudden or an expected death; it is definitive and has an end. With a disease such as Alzheimer's, the grief is long-term; there is no definitive end. It is not only difficult for caregivers to deal with the years of grief and heartache, but friends who try to support the caregivers often tire of the unending trials. How long it takes for the caregiver's pain to ease depends upon the intensity of the relationship.

Caregivers, by nature, generally are focused on meeting their loved ones' needs. As caregiving chores consume their days, many caregivers deny their own needs. Coupled with this, caregivers experience guilt because they are healthy, they have a life and they are still able "to do." It is important for a caregiver to realize that denying his/her own life does not and will not change or delay the progress of the loved one's disease! In fact, making time to meet a caregiver's own needs allows him/her to better support and care for the loved one.

Placing a loved one in a residential facility is difficult and painful. Visits, following placement, often cause the caregiver considerable heartache, grief and guilt. A comment frequently heard following a visit is "I feel worse after I leave." Catherine made the following suggestions to caregivers:

Establish a visitation schedule and stick to the schedule.
Make plans for yourself following your visit (meet a friend, go to lunch or a movie, play golf). Do not return to your home to dwell on the visit.
Take a friend or relative with you to visit; that person can help you leave.
If the above do not work, set aside your visitation days as days you "expect" to feel "low"; then, "live" the days you do not visit.
Educate yourself about the disease process. You may not be providing direct hands-on care for your loved one, but you are still providing FOR his/her care.
Daily, notice one good thing in your world.
Daily, ask yourself, "What do I need today?"
If applicable, surround yourself with new friends who know you as "you", not as a couple.
Choose to make a new life for yourself (new activities, hobbies, interests, etc.).
Remember, you have a "right" to live, to enjoy and to be healthy.

Links

Click here: Well Spouse Foundation

Jamie, we have had a lot of commentary on spousal care lately. This site may be helpful to many....Karen

E-mail Box

From SSabel2884

Thank you both for this wonderful newsletter-- and for this last issue in particular. My mother to whom I am not only the primary, but the sole caregiver (except for her wonderful home health aid, Beth, who saves my life on a regular basis) is probably in stages 3-4. Your newsletter full of coping techniques was so helpful. I will put them to use immediately.

I have another problem that I could use some advice about: I am having a difficult time coping with the fact that she is nearly incapable of remembering any conversation longer than 5 minutes. The conversational circles are driving me so mad that I hesitate to bring up a topic, knowing I will have to repeat ad nauseum all the facts leading up to it. Any suggestions (besides patiently repeating it... I know, I know-- that's what I need more patience. Maybe I really need a recipe for patience!)?? The poor dear is starved for conversation. Maybe she just needs a more patient daughter.

Shannon

Karen's answer to SSabel2884 in part. (Karen, I loved it and thought it should be included. :-)

I like the term "Conversational circles". That's a very accurate description. I'll give you an example: Last night Mom and I had dinner together at my house and then went over to my brother's for coffee. (Decaf, of course!) John and his family have acquired a new puppy. A tiny white Bishon Frieze (sp?), little 3 lb.darling named Belle. My mother loves the puppy and everytime we go there she holds it almost the whole time we are there. She must have asked at least 20 times, "How much bigger is she going to get?" She asked me, John, his wife, the kids...we were all looking at each other. It was driving us nuts!!!

But you know what, she had such a sweet look on her face as she stroked that puppy. She said she wished she could have a puppy. (Pets are not allowed where she lives). It was such a nice evening for her. All she talked about as I drove her home, was Belle.

What I am saying, Shannon, is.....take it one moment at a time. There are so many stories we hear in group and in The Ribbon. We must be thankful our loved ones can still ask questions. You are a good daughter or you would not be asking for help for her. Just smile and hug her and answer the question again. That's what I am trying to do.....see you in group.....Love, Karen

From SERENGETI

Hi ! First, let me say what a wonderful job you both do on The Ribbon! It has had a very helpful information and had we had this info several years ago it would have made the "signs" more recognizable! Does anyone have a list of AD support groups on or off line around the country? My parents are 1500 miles away from me. Mom has AD and my Dad has a suspicious "spot" on his lung. If/when he needs surgery I will probably be able to get home but, of course, will be unable to stay but a short while. If there is no general list...if anyone has information on support groups in Lincoln, Nebraska I would greatly appreciate it! Thanks! Keep up the wonder work girls and good luck in your changing status, Karen!

Karen & Jamie: I know when I first heard about you and your newsletter (which is wonderful, by the way!) I remember you saying something about a chat line. Of course I can't find that first e-mail so if you have time could you please mention it again? My Dad is full-time caregiver for Mom. He's doing such a marvelous job! I'm really proud of him! He is, however, going in for a lung biopsy on Monday and we are all praying the outcome is positive! I would like to have my brother & myself get into the chat room. I make copies of The Ribbon for my dad, brother, and my best friend who also has an alzheimer's mother. I know that not everyone has or takes the time to let you know how important your words of wisdom and encouragement are to us but ...you are terrific and your important job you've created for yourselves will definately create a place in Heaven for you both! Thank-You!!! Marcia

From MeeMawMoe

Thank you girls for the recent issue of The Ribbon. It was great and informative, as usual. I especially liked the information about not arguing with your loved one. That is one of the hardest things for me not to do at this point. Jerry is still at the stage where he can sometimes be convinced that something isn't how he believes it is. But I can't depend on that. Sometimes it is impossible to convince him of anything. Then we both become frustrated. I have to be careful not to take my frustrations out on someone else. I have gradually become aware that I shouldn't argue with him. But that leaves me with no one to argue with. Help. It's not that I like confrontation, but we have always had a little (argument time) in the past. Seemed to relieve tension.. I'm the type that gets it all out and then I feel better. Now my poor teenager probably gets more than she deserves. LOL. So, who wants to come to Okla. for a visit and have a little argument with me. Good therapy. LOL

Thanks again. I always send these to friends and relatives. We all appreciate them and everything you are doing. Hugs, Sharon

From LD4TPC

My father has AD in stage 6, your newsletter and assistance has been an invaluable resource. I forward/print it for other family members. I am trying to get Mom to get online- I set up a computer and aol account for her at Christmas, but she just won't. She just wont go to it, sit down and try. Of course, her life is a nghtmare, and one more challenge is overwhelming, I recognize that.

I go to do respite care 2x month, and recently for 2 one week stays while she went out of town. I am considering relocating with the kids (5,7) to be more available, which would split my family up, my husbands job is not very transferrable. We would only be 2 hours away.

My older brother lives in town with Dad, is a corporate executive, and want to handle finances only, not personal care time.

At a recent family meeting, it would agreed that I would not relocate if:

Mom would get more help, 2 afternoons, in addition to the 2 mornings of hhc she has now, and that brother would help with that, and if she could arrange for a room at her friends apartment to use as an oasis.

Mom has not moved at all to do anything that she and the family agreed would be best for her and Dad. PS,she only recently consented to me coming for 2 long weekends monthly for respite. She lets herself get crazy before she accepts help.

Do you or your wonderful network have any suggestions on how to "prompt", or encourage her to go on, schedule the extra hhc, etc, basically, accept more help?

Thank You Again
Laura Dailey

From NO900

Ribbon #13 has been the best yet as far as I'm concerned because it has taught me many lessons as a caregiver for my husband, DO NOT FIGHT WITH AN AD PATIENT. I can relate to almost all of the reasons given and believe me it is better to live a lie than to argue, I call them WHITE LIES because it is a way of life to save my sanity. I have learned a lot in the past from your Ribbon letters and appreciate all the information, and I still say this one is the best, I am sure it will help many dealing with this terrible ailment. I have found that I cannot tell my husband about plans or visits until the last hour because he will constantly ask WHEN, WHAT, WHERE, HOW. I am still learning and appreciate the information from The Ribbon.
love NO900

From MARYMARYIM

I just want to say Thank you for The Ribbon and all the hard work you put into it. It has been very helpful for me to know that so many people are going through the same problems I am. I still have trouble dealing with a lot of things with my Mother, who is 84 and has lived with me now for 2 1/2 years. She keeps asking me why was she moved out of her house? When I tell her the DR. says she cannot live by herself anymore, she says she was doing just fine. She doesn't remember I had to stay with her most of time. Then she wants to know how long she has been with me, I tell her 2 1/2 years and she doesn't believe me, she thinks she has been here just 3-4 weeks, then she gets upset because she can't remember and starts crying, and wants to know why she can't remember. I explain to her about Alzheimer's and she just cries more. An hour later we go through this whole conversation again. I don't know what to say to her when she asks me all these questions, and I don't want to see her cry all the time. Any suggestions?
Mary

From Piano kf

hello--once again thank-you for the newsletter. It is most helpful to me Just knowing we are not alone in our struggles with this horrible disease is a comfort. It is so hard on all of us and just exhausting. I am tired all the time, and miss my once normal life.What choice do we have but to do the best we can? God Bless you for the information and friendship. It is nice to know that I am in such good company with many thoughtful and wonderful people. Take care, and God Bless you all...kf

From Bubbierg

Dear Ribbon Friends,
What a great help you offer us! Better than my two support groups which offer good lecturers but small opportunity to exchange coping ideas. I really loved today's issue. I am long past the "denial period" for my husband's AD. Now 71, he needs 24 hour supervision and is incontinent and cannot engage in meaningful conversation. But his imagination is amazing and entertaining. I am realizing that in an unexpected way, we are both enjoying this special time in our 47 year marriage.

He likes the adult care center he attends 3 days a week, and they know how to handle his occasional intensity. Our home is pretty and a pleasure to both of us. I like to cook and invite company at least once a week. We also still go out to restaurants with our many friends and I am impressed with how well they adapt to his erratic table manners and off the wall conversation. We even have gone on several cruises and to my surprise, the others at our assigned table enjoy helping to make him comfortable and happy. A few friends initiate our times together but mostly I get on the phone and our calendar is full.

Our children all live far away but we manage to get together several times a year. They both needed a little therapy when we got the diagnosis because their dad had always been the pillar of our family's strength. But now they are fine and accept this part of life with humor and tenderness.

For the moment I have to suspend some of my preferred activities, but I am only 68 and still planning for later opportunities. Next month I will start studying for the Law SAT's. Nuts? Who cares?

Of course there are moments that are almost unbearable. But I have learned that they are just moments. Sometimes he gets so frustrated at my guidance, especially about taking medication and showering. He occasionally threatens to punch me, but I can always deflect him and depend on his non-violent nature. So far not a problem. Many of your suggestions in the newsletter --- like deferring the request for a few minutes-- really work like a charm!
Perhaps my situation is unique. But I am living out this thought:

Yesterday is history.
Tomorrow is a mystery.
Today is a gift!
That's why it's the present

Good luck to all
Rosalie

Helpful Information

From Ridley6

The catalog is called

Buck & Buck
1-800-458-0600

Easy wear, and easy care clothing.........has all kinds of clothing for multiple needs, they even heat seal your loved ones name in the clothing. Has stuff for wheelchairs, clothing for those who have difficulty dressing due to limited mobility, stuff with velcro or back snaps, clothing for those who like to take it off at the wrong time, etc.

Hope you are surviving the heat. Keep cool. We'll see you in group.
Hugs and Prayers
Karen and Jamie