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Newsletter Volume 1 Number 6

Hello again:

Thank you for coming to my website to visit and learn. The year is halfway over, and summer is here. I hope you are able to enjoy some warm weather. I am glad to have my daylilies in full bloom. A different show beckons every day.

I think that enjoying each season helps us be strong caregivers by reminding us that life around us is varied and interesting. When we feel overwhelmed or defeated with the sameness of each day of caregiving we find new things to look forward to.

I trust you found some good resources in last month’s newsletter. Please email me if you have found others that have helped you and I will share them in a future newsletter.

This month I am continuing with resources via the internet. When I began my caregiving journey, I did not find much information on the internet. These are some sites I know about because I am an Occupational Therapist, and some others I have found by searching on caregiving topics. The entire subject has mushroomed in the last 6 months—a testament to the increasing number of caregivers today.

Products and Companies (this is no particular endorsement of these companies; they have information and products that you may find helpful)

Sammons Preston www.sammonsprestonrolyan.com The “go-to” company for all things related to rehabilitation. There are sections for aids for daily living as well as bath and toilet equipment.

American Ramp Systems www.americanramp.com This company deals in ramps, both portable and fixed, and rentals. They also have a portable roll-in Wheelchair Shower that can be attached to any faucet and may be a low-cost alternative to bathroom renovations.

www.soundbytes.com A catalog source for hearing resources

www.independentliving.com A catalog source for low-vision products

Aging Well Magazine www.agingwellmag.com The website has a number of articles and recipes, as well as a senior housing locator. You can subscribe to the magazine and newsletter onsite.

Caregiver Information and Support Organizations

National Alliance for Caregiving www.caregiving.org The site for information and support for caregivers. There are several downloadable brochures and books that may be helpful.

AARP www.aarp.org/family/caregiving Loads of information including caregiving from a distance, an information form to track where all important papers are kept, a book about caring for parents, and much more.

PBS www.pbs.org/wgbh/caringforyourparents/ At this site you can watch the PBS special Caring for Your Parents, download a handbook and read interviews with the doctors who consulted on the project.

Family Care America, Inc. www.FamilyCareAmerica.com Dedicated to improving the lives of caregivers of the elderly, disabled and chronically ill by creating a resource where caregivers can obtain information, support and resources for caregiving.

Family Caregivers Alliance www.caregiver.org This site provides information on services and programs in education, research and advocacy for caregivers of people with chronic disabling conditions.

National Family Caregivers Association www.thefamilycaregiver.org Supports, empowers, educates and speaks up for the more than 50 million Americans who care for chronically ill, aged, or disabled persons. Run by Suzanne Mintz, the author of A Family Caregiver Speaks Up.

Rosalynn Carter Institute for Caregiving www.rosalynncarter.org A wealth of information and training for caregivers. RCI establishes local, state and national partnerships committed to building quality long-term, home and community- based services. They provide caregivers with effective supports and make investments that promote caregiver health, skills and resilience. The focus includes supporting individuals and caregivers coping with chronic illness and disability across the lifespan as well as limitations due to aging.

Well Spouse Association www.wellspouse.org A national not-for-profit membership organization that gives support to wives, husbands, and partners of the chronically ill or disabled.

Alzheimer’s Association www.alz.org

Online support groups:

Beliefnet caregivers support group http://community.beliefnet.com/forums/forumdisplay.php?f=105

http://www.caregiving.com/ Includes support groups for new and continuing caregivers, a forum, a book club and other information for caregivers.

I hope you will find some support and information from these resources. And, of course, you can find information on the other pages of this site. Thanks for visiting. Feel free to share this information with others.

And if you have some other resources you would like me to share in the newsletter, please email them to me. Thanks!

Until next month, I wish you peace.

Dora
Dora Hutchens, OTR/L
www.dorahutchens.com
dhutchens@dorahutchens.com
423-895-1046

Newsletter 1 Vol. 5 - Helpful Reading

Hello again:

I hope your month is going well. Here is a quote from the quintessential caregiver, Dana Reeve: “Some choices will choose you. How you face these choices…is what will define the context of your life.” I hope the information in this newsletter can help you face your caregiving tasks.

This month I would like to share some resources about caregiving that I have found helpful. They are in no particular order. I hope you will check them out. If you have others that have helped you, please feel free to send them to me and I will put them in a future newsletter.

Books:
The Comfort of Home by Maria M. Meyer, with Paula Derr, RN. This is actually a series of books, one general, and the rest more diagnosis specific. The specific diagnoses addressed in separate volumes include Multiple Sclerosis, Parkinson Disease, Stroke, Alzheimer’s Disease, and Chronic Lung Disease. There is also a Spanish version, a journal, and a CD of meditations.

I like these books because they describe aspects of all the factors in caregiving. They include “getting ready” (knowing if you really want to be a caregiver, assembling equipment, and dealing with financial aspects), “day by day” (including a great chart for the daily plan of care, avoiding caregiver burnout, basics for physical aspects of care, and traveling with a person whose health is declining) and “additional resources” (such as medical abbreviations and caregiver organizations). These may be my new favorites because they are so comprehensive and easy to use.

Still Giving Kisses by Barbara Smith, OTR/L http://www.barbarasmithoccupationaltherapist.com/stillgivingkissesdescription.html This book includes symptoms of Alzheimer’s and various strategies to help care for family members with this disease. Because she is an occupational therapist she used creative ideas to work with her own mother. You can download the book or purchase it in print if it isn’t in your local library.

Your Name Is Hughes Hannibal Shanks: A Caregiver’s Guide to Alzheimer’s by Lela Knox Shanks. Interspersed with many anecdotes from learning to care for her husband, Mrs. Shanks presents much information for caregivers including symptoms and stages, techniques for successful in-home management, and surviving the stress of caregiving. She was most successful in caring for her husband because she always allowed her husband to be as independent as possible. (This really resonates with me because of my occupational therapy background.)

The Accessible Home: Updating Your Home for Changing Physical Needs by Creative Publishing International, Inc. This book divides the home into living areas with challenges in each area. It includes project directions for installing accessibility features, such as handrails, pocket doors, specialty light switches, kitchen shelving options, single-lever faucets, grab-bars and keyless deadbolt locks. Although it is not completely comprehensive nor up-to-date (published in 2003) it contains a list of websites and other resources, like how to find funding for your project. Directions are clear and complete. Even though I am not a mechanical pro, I think I could easily follow these directions if needed.

Other inspiration:

I have found that doing some inspirational reading has helped me in my journey of caregiving. Some of my favorites include:

Anything by Wayne Dyer, but There’s a Spiritual Solution to Every Problem has really helped me to be responsive to my husband’s needs even when they seem overwhelming. I read a small section every day to keep me tuned up and tuned in.

Eckhart Tolle’s A New Earth has given me strategies to remain “present” during my caregiving experience.

Martha Beck’s Finding Your Own North Star is a great book to help you figure out where you are going and how you will get there. I would also like to read Steering by Starlight, her newest book. Martha is a caregiver for her Down syndrome son.

Broken Open: How Difficult Times Can Help Us Grow by Elizabeth Lesser is on my “to read” list. It is both memoir and insights from her years as co-founder of Omega Institute and offers tools to help make the choices we all face in times of challenge.

Well, I hope you will find some support and information from these resources. And, of course, you can find information on my website www.dorahutchens.com. Thanks for visiting. Feel free to share this information with others.

And if you have some other resources you would like me to share in the newsletter, please email them to me. Thanks!

Until next month, I wish you peace.

Dora
Dora Hutchens, OTR/L

www.dorahutchens.com
dhutchens@dorahutchens.com
423-895-1046

Newsletter Volume 1 Number 4 - Caregiver Feelings

Thank you for reading my newsletter. Did you read last month’s? I talked about
the book, Taking Charge, Overcoming the Challenges of Long-Term Illness, by Irene Pollin and Susan K. Golant and eight fears that people who are coping with chronic illness usually face. If you missed it, you can read it and other archived ones on my website: http://www.dorahutchens.com/newsletter.html.

This month is also from information from the above book, but about feelings that caregivers may have. Being a caregiver is a tough job, requiring patience, forbearance, physical and emotional stamina, and an iron will. It can alter your life’s course. Caregivers may have these feelings:
1.“I feel as if my life is spinning out of control.” Life may now be dictated by your dependent one’s illness. This is frightening.
Try taking charge of what you can control. Try to find some time each day for what is truly yours. Find ways to reduce stress. Spend time with friends, or go for a short walk, or just make a cup of tea. Maybe pull some weeds or prune some bushes.
Also pay attention to occasions when you feel you have done all you can. This may help bring a sense of peace.
2.“I feel as if I’m a different person than I was before the illness.” This may be true, and you might resent some of the changes. But also try to recognize that you may have grown from this experience.
You may feel that you are more compassionate and patient. You may be less likely to take things for granted. You may have a greater appreciation for what you still have, in spite of your losses. You also may find a strength you never knew you had.
3.“I resent my loved one’s dependence.” Try not to be overly solicitous or to take away the person’s sense of self-worth by doing more than is needed. Allow as much independence as the individual will accept. Try to let go even if you feel you can do the task better than your loved one. Even though you have to sit on your hands, it is better to let them try first and help later. Then you can praise them for their efforts and both of you feel more positive.
4.“It upsets me when others point and stare at us.” If you allow this fear to control you, you may become more isolated. Choose with whom and how you share news of the illness. If you or your loved one is being discriminated against, voice this to someone who can help make a change. The world is much more aware of ways to include people with disabilities into activity than it once was.
5.“I feel like running away from home.” If you feel overwhelmed by your caregiving responsibilities, you may be experiencing burnout. Most often, burnout results from perfectionism and high expectations for oneself, the need to work hard, idealism, the need to prove oneself, difficulty saying no or delegating responsibility, self-sacrifice, an unrealistic sense of one’s limitations, and being a “giver” instead of a “receiver”.
Practice declining things that are not as important, and doing so in a positive way, rather than allowing yourself to get so fed up that you fly off the handle. Maybe you need some respite assistance. Ask; it is available in most areas. Even your friends can be a help at times.
6.“I’m really angry.” You are caught in a position you never wanted to be in. Keep in mind that you are angry at the illness, not the person. Be careful how you express your anger. Sometimes people are not capable of dealing with or understanding your feelings, so you may want to vent your anger elsewhere.
Exercising, taking a ride, pounding some nails, writing a letter or a journal entry, or painting a picture of your feelings may help. Also, meditation may help you become calm. Spirituality and faith may help during the rough times. It is acceptable to be angry with your situation, but not abusive to your loved one. You may want to seek a counselor, clergy, or professional if you need extra help.
7.“I feel isolated.” Few people really understand your situation. Even if you are surrounded by other people, it is still possible to feel isolated. Find and join, or start a support group. Turn to your religious institution for support. Work with an interfaith volunteer caregiver. Arrange for respite so you can visit friends or have lunch out.
8.“I’m afraid my loved on will die (and also – guiltily—I’m relived by the thought).” Sometimes after a long time caregiving, the caregiver can’t stand to see their loved one suffer. At any time things can change. Life is fleeting. Try to make the most of your time with your family member. Appreciate the good times and the pleasure of their company, since you won’t have it as long as you expected.

I hope this helps you recognize some of the feelings you are experiencing. When we recognize them, it can help us deal with them in more positive ways.

Until next month, I wish you peace.

Dora

Newsletter Vol1. No.3 - Fears in Chronic Illness

Thank you for reading my newsletter. Did you know you could receive it automatically? If you haven’t given me your information, just fill out a contact form and you will automatically receive the latest one each month.

This month I read the book, Taking Charge, Overcoming the Challenges of Long-Term Illness, by Irene Pollin and Susan K. Golant. They list eight fears that people who are coping with chronic illness usually face:
1.The fear of loss of control. The person may have made plans for the future, but these may now be in question. It is unknown from day to day if they will ever regain control of their life.
2.The fear of changed self-image. Sometimes people with chronic illness don’t see themselves as the same persons. Maybe they are less confident, feel less attractive, physically weaker, or somehow damaged. Maybe they can no longer earn a living, question their belief in God, or see themselves as defective or unlovable.
3.The fear of dependency. What if the person had always been the strong one and now as a result of illness is the dependent one? There may be a fear of loss of independence. This may make it difficult to accept help or may cause the person to give in to fears, making them overly needy and dependent.
4.The fear of stigma. They may be frightened that others will distance themselves once others know they are sick. If disfigured in some way or if there is some physical disability, they may be afraid that others will point and stare. This may cause withdrawal into the confines of home.
5.The fear of abandonment. The feelings we have as infants stay with us through our lifetime and may be intensified during an illness. The person may fear that their caregiver will tire of the drudgery and also feel that their personal sense of security is threatened.
6.The fear of expressing anger. There is anger at knowing that they will never be “cured”. This is the consequence of frustration. But people have been taught that anger is unacceptable and so are afraid to express it. They also may be afraid that their rage will drive others away. Or they may be afraid of flying out of control. Anger kept inside can lead to depression and lack of energy.
7.The fear of isolation. Chronic illness can lead to physical, social, and emotional isolation. People who are ill for long periods may lose their ability to socialize and this may cause them to withdraw further. Withdrawal usually takes a long time to occur.
8.The fear of death. However, death is not usually feared as much as the fear of living with the illness until death.

Sometimes it helps to have an understanding of what the people we are caring for are feeling. Next month I will talk about feelings that caregivers may have.

Until next month, I wish you peace.

Dora

Newsletter Vol1. No.2
The Starfish Story
adapted from The Star Thrower
by Loren Eiseley
1907 - 1977
star story, starfish on beach, wise man

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "I made a difference to that one!"

His response surprised the man. He was upset. He didn't know how to reply. So instead, he turned away and walked back to the cottage to begin his writing.
All day long as he wrote, the image of the young man haunted him. He tried to ignore it, but the vision persisted. Finally, late in the afternoon he realized that he the scientist, he the poet, had missed out on the essential nature of the young man's actions. Because he realized that what the young man was doing was choosing not to be an observer in the universe but to make a difference. He was embarrassed.
That night he went to bed troubled. When the morning came he awoke knowing that he had to do something. So he got up, put on his clothes, went to the beach and found the young man. And with him he spent the rest of the morning throwing starfish into the ocean.

Few stories have gained internet popularity the way "The Star Thrower" has. Most often it's cited as "author unknown," but it is actually a classic from 1979 written by Loren Eiseley, who has been hailed as a modern day Henry David Thoreau.

Loren Eiseley was both a scientist and a poet, and to this day his writing is the subject of much discussion and inspiration. In this story he is the "wise man" touched by the innocence and determination of another soul.

"The Star Thrower" is a classic story of the power within each one of us to make a difference in the lives of others. And though it has appeared in many forms (sometimes it's a Native American man who is throwing the starfish into the sea, sometimes it's a grandfather, or a young girl or boy) it is nonetheless a powerful reminder that we should be here for each other, and to seek to help, even in small ways, whenever we can.

In such turbulent times as these, when we may feel alone and small and unable to make any lasting changes we may find ourselves asking "What can I do that will make a difference?" or "What can one small person like me do?"

In reality we don't have to be rich, talented or even particularly intelligent to make a difference in the life of another. We just need to remember that we ARE here for a purpose and that making small changes in the world eventually add up to something bigger in the life of another.

When we become throwers of stars, we too, have the power to change the world.


Explorer Consulting
Newsletter Vol. 1 No. 1 - Home Safety Checklist

Welcome to my website. During the coming months I will be sharing information to help you take care of the people you love. I invite you to share your strategies with me so I can share them with the others who come to this site.

This month I'm introducing the topics I'll be covering in the future. I'm passionate about folks having the best information so they can make the best decisions.

Physical modification includes all the things we do to make people and their homes safe. This could be permanent features like grab bars and walk-in showers or temporary modifications like extensions to handles. It also includes adaptations we make for sensory changes like better lighting or assistive listening devices.

Dementia management strategies are important to help keep our family member calm and ourselves sane.

Support for caregivers is critical because we can't take good care of them if we don't take good care of ourselves.

Here is a handy safety checklist (courtesy of Easter Seals) to help you check their home. Some of the items are also important to look at if there are children in the home.

1.Are electrical extension cords in good condition?
2.Are electrical extension cords kept from being stretched across heavily traveled areas of their home?
3.Are unused electrical outlets covered or locked?
4.Are electrical outlets checked regularly for overloading?
5.Do you know how to turn off the gas and electricity in case of emergency?
6.Are proper size fuses used for replacement rather than pennies or substitutes?
7.Are floor surfaces non-skid?
8.Are all floor coverings fastened down?
9.Are fireplaces screened and protected?
10.Are open flames such as candles kept away from walls and curtains?
11.Are there smoke detectors in their home, and have the batteries been checked lately?
12.Is an approved fire extinguisher kept on each floor?
13.Are emergency phone numbers – police, fire, doctor, utilities – handy to the phone?
14.Is a sturdy stepladder available for climbing?
15.Do interior doors such as those on closets or bathrooms have safety release locks that allow them to be opened from either side?
16.Are the windows securely screened?
17.Is lead-free paint used on all accessible items that might be placed in the mouth?
18.Are firearms unloaded and locked up?

Until next month, I wish you peace.

Dora