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The Ribbon - Care for Caregivers
Volume 8, Issue 11
July 10, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

I've been on a bit of a roller coaster during this time between issues. I've been sad and a little down because Nick has admitted for sure that he can no longer work and we went to sign him up for Social Security. He has fought this for as long as he could. I think the fact that tomorrow will be his 55th birthday had something to do with it. It doesn't really matter, it is just one more thing to let him realize just what he has lost. I keep stressing the positive and tell him that now he can begin to concentrate on what he still has but Nick is kind of a negative type of thinker.

I've also been very happy. I was asked by my local chapter, Mid-South Chapter of The Alzheimer's Association to participate in a video to be shown to new volunteers and to new sponsors. It will give them an idea of what our chapter does for caregivers and those who have a dementia. Needless to say, I was VERY happy to do this. We hear facts and figures all the time but not too often do we hear from the people in the trenches. Caregivers and the Persons with Dementia need to be heard and heard often.

I have also been asked to speak at the Memory Walk Kick-off Luncheon. This is another opportunity for a caregiver to be heard so that others can be spurred on to gather more and more donations. The Memory Walks are the biggest fundraisers for The Alzheimer's Association all around the country and as more and more people are being diagnosed more and more funds are needed. More programs are being added to the different chapters and they need the funds to implement them. We need to help them so that in turn they can help us!

Now that I've said that, I will let you know that I'm participating with the Bridges team this year at the Memory Walk. Everyone knows that every other year I will be a Jane's Angel but this is the year for Bridges. If any of you wish to sponsor me by making a donation you may send it to the address above with the check made out to The Alzheimer's Association or you may donate on my secure webpage.

Memory Walk 2004 Nashville - General Donation

If there is anyone in the Nashville area who would like to join our team please feel free to do so and we will welcome you with open arms. The event will be held at Greer Stadium, Home of the Nashville Sounds on September 25th at 9:00am. I feel that if you raise $1 or $10,000 you have made a difference in someone's life.

I have included some articles that I hope will help answer the Inquiries from the last issue. Happy reading!

Jamie


Grappling With Guilt

"Guilt is the gift that keeps on giving." -- Erma Bombeck

Caring for someone with dementia can bring out the best or the worst in the human personality. Compassion, concern, and loyalty are just a few of the positive characteristics that may emerge.

At the same time, caregivers may experience feelings of frustration, depression, and guilt as a result of too much stress. Guilt or self-reproach seems to stand out as the feeling most difficult to overcome.

Some people are prone to guilt and another person's chronic disease may simply intensify it. Even those without this tendency may begin to feel its effects after awhile. There is plenty of room for feeling guilty when the condition of someone you are caring gets worse in spite of your best efforts. This is a terrible burden that too many bear without consideration of the fact that their efforts may be unrelated to the progression of the disease.

Although countless situations may breed guilt, a few common examples point out the dilemmas involved:

  • The daughter of a woman with dementia works a full-time job in addition to raising her children. She spends every Saturday helping her parents but whenever she leaves their home, her father pleads for her to stay longer. She feels guilty for not being more available to her parents as well as her own children.
  • A son begins to argue with his mother who has Alzheimer's disease who is acting irrationally and he ends up pushing her against a wall. He suddenly realizes that she cannot control her behavior and he should have reacted to her differently. He feels guilty for making a bad situation even worse.
  • A husband arranges for his wife with Alzheimer's disease to attend a local adult day program. In her absence, he is unable to relax and worries if she is missing him. He wonders if he has made a mistake in making the arrangement.
  • The wife of a man with dementia promised him and herself that she would never place him in a nursing home. After several years of home care, she feels completely worn out and regretfully moves him to a nearby facility.

In some cases it can be argued that guilt may serve a useful function. It can motivate one to reflect upon mistakes and lead to a positive change in behavior. However, persistent guilt can become a crippling problem. Such guilt usually stems from high expectations put upon oneself that cannot be met. Failure to meet these self-imposed standards leads to more guilt and a vicious cycle develops. They get caught in a trap of thinking that they should or ought to be able to meet all needs at all times. When guilt replaces a freely made commitment as a dominant motive in providing care, then some form of help is clearly indicated.

Guilt may be impossible to dismiss altogether but at least it can be put into a proper perspective. The following are some "guilt guidelines":

  1. Acknowledge that you are in a no-win situation in regard to Alzheimer's disease; it will indeed get worse in spite of your best efforts.
  2. Set realistic goals; the focus is not on a medical cure but on providing comfort and a good quality of life. The results may not be tangible but take pride in making the difference to the person who counts on you for help.
  3. Accept your shortcomings; perfectionists are bound to be disappointed over and over again.
  4. Do not take yourself or your role too seriously; remember that laughter is good medicine without any bad side effects.
  5. Take a break on a regular basis by enlisting the help of others to provide substitute care.
  6. Share your thoughts and feelings with a compassionate listener; if a close friend or relative is unavailable, seek counseling through a local church, synagogue or mental health agency.

Guilt can become a crippling problem that chips away at self-esteem and makes life burdensome.

Burnout may be the end result of guilt that goes unchallenged. It is often necessary to find other people who will remind you of the good job you are in providing care to someone who cannot always be appreciative. It is essential to acknowledge guilt and move beyond it in order to remain emotionally healthy. After all, one of the chief needs of a person with dementia is an emotionally healthy caregiver.


Daniel Kuhn MSW
Mather Institute on Aging, a division of Mather LifeWays

Daniel Kuhn is the director of education at the Mather Institute on Aging, a division of Mather LifeWays, a nonprofit organization based in Evanston, Illinois that serves older adults. He completed a master's degree in social work at the University of Illinois in Chicago. As a licensed clinical social worker, he has been active in the fields of health care and aging since 1973. He has authored or co-authored over 30 publications about the impact of dementia on individuals and families including the book, Alzheimer's Early Stages: First steps for family, friends & caregivers. He is currently directing a federally funded project to enable family caregivers in northeastern Illinois to take better manage their own self-care.

E-mail: dkuhn@matherlifeways.com
Web Site: http://www.matherlifeways.com/


Long Distance Caregiving

from the Alzheimer's Association

Caring for a loved one who lives far away can be emotionally and financially exhausting.

Concerns about your loved one's safety, nutrition, health, and care may seem overwhelming. You may also feel guilty and anxious because you cannot be there every day to see how the person is doing.

This page offers advice on coping with long-distance caregiving and considerations for when it's time to move your loved one into an assisted living facility.

Determine what services are needed

If the person with Alzheimer's disease lives alone, it is important to monitor his or her ability to manage various daily tasks. Visit the person with Alzheimer's disease to determine what kind of assistance he or she may need. Make the following observations:

  • Is there appropriate and adequate food available?
  • Is the person eating regular meals?
  • What is the condition of the living environment? Has it changed?
  • Are the bills paid?
  • Do friends and relatives visit regularly?
  • Is the person maintaining personal care routines such as bathing and grooming?
  • Is the person still able to drive safely?

If you are unable to answer these questions, the person's doctor, neighbors, family members, and friends can be good sources of information.

Turn to others for help

Establishing an informal support system can help ensure the person's safety and give you peace of mind.

  • Family members and friends can provide companionship. Ask them to visit once a week or so, depending on how far away they live.
  • Neighbors can check regularly on your loved one. Ask if they will remain alert to anything unusual such as the smell of smoke or the sound of an alarm coming from your relative's home.
  • Community organizations, such as churches, synagogues, neighborhood groups, and volunteer organizations, often provide companion services.

Make the most of visits

Few long-distance caregivers are able to spend as much time with their loved one as they would like. The key is to make periodic visits and use your time effectively:

  • Make appointments with your loved one's physician, lawyer, and financial adviser during your visit to facilitate decision making.
  • Meet with neighbors, friends, and other relatives to hear their observations about how the person is doing. Ask if there have been any behavioral changes, health problems, or safety issues.
  • Take time to reconnect with your loved one by talking, listening to music, going for a walk, or participating in activities you enjoy together.

Consider carefully before moving a loved one into your home

The decision to move the person to your home is influenced by many factors. Here are some things to think about before moving the person into your home:

  • Does he or she want to move? What about his or her spouse?
  • Is your home equipped for this person?
  • Will someone be at home to care for the person?
  • How does the rest of the family feel about the move?
  • How will this move affect your job, family, and finances?
  • What respite services are available in your community to assist you?

Moving a person with Alzheimer's disease from familiar surroundings may cause increased agitation and confusion. You may want to talk with your loved one's physician or a social worker or call your local Alzheimer's Association chapter for assistance before making a decision. In some situations, an assisted living or a residential care setting may be a better option for the individual.

Caring for a loved one in a facility

Whether your loved one lives in an assisted living or a residential care facility, it is important to maintain ongoing communication with the care staff and friends who visit regularly.

  • Work with the managing nurse and physician. Agree on a time when you can call to get updates on the person's condition and progress.
  • Call family, friends, or other visitors and ask for their observations.
  • When you visit, meet with the staff members who have primary responsibility for your loved one's care.

Resolving family conflicts

Caregiving issues can often ignite or magnify family conflicts, especially when people cope differently with caregiving responsibilities.

Family members may deny what is happening, resent you for living far away, or believe you are not helping enough. There may also be disagreement about financial and care decisions.

To minimize conflicts, try to acknowledge these feelings and work through them.

  • Have a family meeting. Talking about caregiving roles and responsibilities, problems, and feelings can help ease tensions. You may want help from a professional counselor or clergy.
  • Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
  • Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member'spreferences and abilities.
  • Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer's and the caregiver, and decide if any changes in responsibilities are needed.

Many long-distance caregivers feel guilty for living far away from the person with Alzheimer's. This guilt, compounded by the grief related to seeing a loved one's decline, may make it difficult to emotionally recover from a visit. It is important to seek support from family, friends, a counselor, or the Alzheimer's Association to help deal with these feelings.

Care Partners | Long-Distance Caregiving


In Passing: Those We Must Remember

From Dglennox1019@aol.com

Vicky, aka MVictoria82 asked that I pass this info along. Her mother, Italy Luhman passed over at 2 am on June 22nd. There will be no funeral or wake. She will be having her Mom cremated. Will update you with further info when Vicky lets me know.


From cglaughter1@wmconnect.com

It is with great sadness but with a celebration of life at the same time, I would like to tell you that my Mother, Mary Gerber, when home to be with her Lord at 1:00 AM on Thursday, July 8.

Due to family coming from out of state we will be having the calling hours on Tuesday from 6:-8:00 PM with the funeral on Wednesday at 11:00 AM.

Our family would appreciate your prayers at this time.

Chip Gerber


One of The Ribbon's Avid Fans to be on Radio

Hello Readers of The Ribbon

I will be talking about Alzheimer's / Caregiving on a radio station in TX which is also accessible via Internet. It will be a LIVE CALL in SHOW.

As we work together to increase awareness of Alzheimer's disease and increase funding, I welcome The RIBBON Family to call in and share your experiences and even about The Ribbon, The Gathering Place and GoF. The more we increase awareness the more media is likely to continue bringing this disease into the mainstream and with it, we can campaign more successfully for much-needed additional funding.

Date: Monday, July 26
Time: 10:20 PM (Central Time)
Interview Length: One Hour
Regular Call-In 214 787 1990

KMSR 990 AM
Current demographic audience includes persons ages 30 - 65 residing in the Dallas/Ft. Worth metroplex and surrounding areas with upper-middle income levels. We also reach beyond the DFW through live online streaming of the show at http://www.990mainstreet.com/.

For those of you who don't know me...I am Brenda Avadian, based in the Los Angeles area. My father was diagnosed with Alzheimer's in 1996...my husband and I moved him from his Wisconsin home of 45 years into our California home to care for him when my brother and sister who live in WI appeared to neglect him. The entire story will be told in the second edition of "Where's my shoes?" My Father's Walk Through Alzheimer's. The first edition is sold worldwide.

I continue to write books and speak about caring for loved ones with Alzhemer's/dementia. All the sales proceeds of our books support organizations worldwide.

My story is on TheCaregiversVoice.com

I am sending this to you early so you have time to share it with The Ribbon readers and they have time to share it with their families, friends, and even local Alzheimer's chapters.

Please feel free to let me know if there's additional information I can provide as we work together to help families who walk with their loved ones who have this disease.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Tel: 661-945-7529 (California)

Speaker and Author, Finding the JOY in Alzheimer's~Vol. 2:
When Tears are Dried with Laughter
, Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times
(soon to be released in the Slovenian language) and "Where's my shoes?" My Father's Walk Through Alzheimer's
(also AVAILABLE in Audiobook, the German language, Die Zeit mit dir,
and "¿Dónde están mis zapatos?" in Spanish and NOW in Korean).
Look for the SECOND EDITION of "Where's my shoes?" in late 2004!


Links

Wired News: Alzheimer's: Beyond Stem Cells

Despite the high profile that Nancy Reagan and others have given the idea of using embryonic stem cells to treat Alzheimer's disease, advances are likely to come faster from other approaches.


Email Bag

From CareVoice@aol.com

Hello TheRibbon.com Inquirers,

Alzheimer's in caregiver's future...

There is a delicate balance to be maintained in assisted suicide. Although, not a single person I've asked, wants to live as my father lived with Alzheimer's, including my father and me, our discussions of his ending his own life ended as the disease progressed. In fact, he started living a relatively happy existence as the months passed, except when he had to be cleaned. Unlike other diseases and illnesses, a person with Alzheimer's can no longer make decisions or carry out the act of suicide. My father lost awareness, then his ability to think and make sound judgments. He existed each day in his own world without an overarching sense of life and death decisions. He was not aware of what he had lost. Sometimes, I imagined asking my father, "Do you want to die? Would you like me to see how I can help you?" Even if I held a gun (assuming I could get one) to his head or heart and said, "Shall I end your life?" He might ask (even in his demented state), "Why would you want to do THAT? Did I do anything wrong?"

Even if we could legalize assisted suicide, what about the situations where ill-meaning family members decide to "help" end a parent's life sooner in order to gain an inheritance? I recall my own brother and sister complaining about the costs of my father's nursing home care. We can never be sure that a person who truly wants to live even in a demented state will be allowed to, because some over-enthusiastic family member or even ill-meaning caregiver step in to "help" end someone's misery.

Balanced Approach: Write a DETAILED advance directive in insure against abuses. Give copies to EVERYONE close to you. Hope that our laws progress to treat us as mature responsible human beings with freedoms and liberties upon which this country was built. (Then again, when a hair dryer manufacturer has a warning label: "Do not use in shower" due to too many frivolous law suits, I'm not too sure about the hope for "mature responsible human beings" part above.)

Guilt-free time off...

There used to be a time when someone would knock on my door asking for a donation and if I didn't give one, I'd feel guilty. There used to be a time when I was a child and my mother would tell me to go up to my room and study while she did my chores. Sometimes, I'd go upstairs, close the door, and stare out the window at the high school boys playing football in the park across the street. Then I'd feel guilty.

Once I turned into my late 30s and started caring for my father in our home and then started writing books, speaking about caregiving and Alzheimer's and donating everything we made on the books, I stopped feeling guilt. Today, even though I do not actively provide care, my hours run from 5:30 a.m. until 10:30 p.m. nearly seven days a week. (Part of this is due to our moving ...the best thing to imagine is Extreme Makeover: Home Edition. It was hard enough to move during a busy time--new book coming out and more. Now we need to do some major fixups!) Today, when someone asks for a donation, I tell him, I already donate heavily and to causes related to Alzheimer's. He says, "Okay." I don't feel an ounce of guilt. Today, when a homeless person asks for money, I ask if I can buy her a meal. I feel no guilt for not giving her money. Today, when someone asks me to do something, I feel no guilt when I have to say, "No" Today, when I try to take 15 minutes for myself, I feel NO GUILT because my work days are already approaching 18 hours and because I am so exhausted when my head hits the pillow, I am asleep in seconds.

Bottom Line: Each of us knows what we can handle. Some people look at my hours and wonder how I survive. Truth is, I've been wondering this myself lately. Still, each of us knows, deep inside, what we can bear. Guilt tends to creep in because we feel we can always do more. But truly, once we work long and hard hours and meet some of life's major challenges head on (Jamie describes this in some of her opening remarks), there is little room for guilt. We are honestly too exhausted to give another ounce. And you know what, when we feel we've worked THIS HARD, we deserve a BREAK. And when I party, I PARTY! And I know when Jamie parties, she PARTIES! I've been there. So caregivers, if you truly feel you are worked to the bone, TAKE A BREAK! It will improve the care you provide, make you feel better about yourself, and help you to survive! To paraphrase the old saying...When the CAREGIVER is HAPPY, EVERYBODY's HAPPY! Just ask Jamie!

THANK YOU The Ribbon, for giving me a time to reflect and ponder.

THANK YOU readers, for asking these questions and for reading this response.

Okay, back to work!

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Tel: 661-945-7529 (California)

Speaker and Author, Finding the JOY in Alzheimer's~Vol. 2:
When Tears are Dried with Laughter
, Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times
(soon to be released in the Slovenian language) and "Where's my shoes?" My Father's Walk Through Alzheimer's
(also AVAILABLE in Audiobook, the German language, Die Zeit mit dir,
and "¿Dónde están mis zapatos?" in Spanish and NOW in Korean).
Look for the SECOND EDITION of "Where's my shoes?" in late 2004!


From Sclukas77@aol.com

Hello,

I would like to respond to inquiry #2 in the last issue regarding an article about how a caregiver can feel good about taking care of one's self and not feel guilty.

A suggestion I have is that you check with your local Area Agency on Aging or Alzheimer's Association and ask if they sponsor the Taking Care of You: Powerful Tools for Caregiving classes that are available in many states.

Powerful Tools for Caregiving is a six-week class for caregivers to learn how to manage problems better and to seek and find solutions. It can help caregivers thrive as individuals.

I was fortunate enough to attend a class a few years ago, learn to take care of myself, and get rid of the guilt associated with the decisions that I was making for my Alzheimer's mom.

These classes are designed specifically to take care of the caregiver. I am now a leader of these classes in Wisconsin and every class member that I have had contact with leaves with plenty of "tools" to help in Alzheimer's caregiving and other caregiving situations.

I could go on and on about how great these classes are but I will sum it up as one of the caregivers in a class commented, "I feel more confident asking for help using the communication tools I learned. More help means a healthier me to take care of my mom." I feel exactly the same way.

I hope this helps,

Sharon


From Currby4@aol.com

Re Inquiries

on the first remark.......... Since my grandmother had alzhiemers and then my mom, i worry too that it may be in my future. Being I have taken care of my mom thru it all and still am............... your question sure has been in my thoughts once or twice, or more. I don't think I could help my mom, and I am not sure I would want to put that on my family members either. So I guess I'd be stuck.

2. I am lucky to be able to use respite care for my mom. The very first time I took her to the nursing home I felt quilty almost the whole vacation. Each time it got a little easier, but I still feel bad. BUT I also know how much better rested I feel after she has been there a week, or even a weekend.

Laura


From JRNYWMN@aol.com

Love you guys. As always, you stay true to the point of "The Ribbon", helping caregivers and those in early-stage Alzheimers still able to communicate their needs and thoughts. Kudos over and over again.

A Mom story (if you remember me telling those in chat)...
I started Mom on Namenda in February. Mom's not entirely a different person, but her responses are different. This morning, as I was [sponge]bathing her and getting her ready for the day, she said "I really appreciate everything you do for me."

I mean, c'mon, who would expect that out of the mouth of someone who had been on Aricept for 7 years, started exhibiting clear declining symptoms a couple of years ago, and who has (as is typical) Parkinson's and Osteoporosis. It was a full sentence, completely appropriate to the situation, and initiated by her!

Now, to make it better, she raised her head and looked me squarely in the eyes when she said that. Her eyes were sparkling with love and sincerity. Not to confuse or stilt things, I admit she'd had (I thought) a good night's sleep.

........

Food for thought for those hesitating about Namenda.

Is Namenda the answer? Heck no. But it's surely given Mom that control and dignity, and power of communication back, even if temporarily.

Wanna know what it's done for me, as her daughter/caregiver? It's enabled me to sit eye-to-eye and speak slowly and get APPROPRIATE, quick answers to my questions. Important? You bet...when it's about "are you cold", "do you want to go to bed/are you tired?", "Do you want some chocolate cake?" [Be prepared for a great big grin and eye-raising response to that one!] Or, not so high on the list of fun stuff..."do you need to poop?"

Will everyone get those great responses? Probably not, but there's not one second (following the initial month) that I've considered taking her off it...and I've been grateful more times than I can tell you that I did it.

A note here: Mom has really good insurance. Not everyone does, and I'm sorry about that as well. I truthfully don't know the cost of purchasing it without insurance; it's a med that, in my opinion, should be given out, along with Aricept, by the government to anyone and everyone who is in mid-late stage Alzheimers.

I told a friend of mine, whose father is Dutch, who speaks only Dutch now to his kids (on those rare moments when he does speak)...if you have the financial capability to have this drug, and you don't get it, you're robbing HIM and YOU. You can't imagine how much stronger my Mom is in her conversations, in emphasizing things, in speaking up for something that's important to her. It's given her back a degree of control and connection. It's enabled us to be better caregivers for her.

It's a risk. It's a risk. It's a risk.

Every med is a risk...but after you talk with your doctor, read up on the med's history in Europe, and give it a trial, you may find that it "works" for your loved one. What have you to lose by conversation and research?

Why are any of us here? Why do we read The Ribbon? Not to dictate what SHOULD be done, but simply to be better advocates for our loved ones, and to find others who can support that and enable us.

As always, I love you guys. Keep up the great work. Ann


There you have it! Stay safe and take care of yourself.

Hugs and Peace,

Jamie and Karen

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