About this Site |  About Us |  About Me
What is Patient Hands? |  Submitting Ideas, Articles and Links
About Links,Linking and Advertising |  Author's Note

The Mission of Patient Hands:
To relieve isolation by building community.
To inform, To improve and To inspire.
To change attitudes and To enable change.

Author's Note:

In Reviewing this site, you will notice that I use personal pronouns indiscriminantly and that I use the term "family patient".

Family caregivers come in all shapes, races, genders, sizes and ages. One of the objectives of this site is to break away from stereotypes and acknowledge the contributions, challenges and accomplishments of us all.

In the last 30 years, hospitals have narrowed their patient criteria to such an extreme that patients who are still unable to care for themselves are told to find a caregiver and sent home without regard to the liklihood that a family caregiver is available. If the discharged patient needs to be moved into a terminal care center or a residential nursing facility, more often then not, the completion of arrangements will be left up to him regardless of his ability or willingness to make them.

My personal opinion is that all too often, the term "family patient" is entirely accurate and down playing the gravity of a person's medical condition by referring to her as only a family member or a loved one, does her a poor service and whitewashes a practice that endangers the people who are least able to defend their right to responsible treatment.

Contact Me
Directory of Links
Google's Text Translation Utility

FRIENDS

ALZwell Caregiver Support Page

DORIED's Alzheimers Pages

Empowering Caregivers

Hospice Patients Alliance

Inner Wisdom

National Organization for Empowerment

Prairie Gal's Website

About this site:

In 2003, I spent four months in Seattle with my oldest son, who was having a stem cell transplant. I sat in a lot of waiting rooms, I talked to a lot of other caregivers. We talked about the weather, we talked about our family patients, we talked about the government, we exchanged our favorite urls.

To a family patient and his caregiver, a useful url is a lifeline. It means:

• Applying for a free drug program that isn’t widely advertised.
• Finding out where treatment centers are and how they differ.
• Finding an affordable wheelchair or a hospital bed or leg braces.
• Learning about a time trial before it’s closed.
• Learning about a treatment that may never even be mentioned simply because the doctor doesn’t want to try the unfamiliar.

For a patient suffering from a catastrophic illness, a little bit of misinformation needlessly wastes one of her most valuable resources.  Time.   A lack of timely information, can be terminal.

In search of solutions to their own problems, family caregivers find that a useful URL helps to:

• make necessary purchases when their family patient is homebound and can't be left alone.
• Provide entertainment and reading materials.
• Continue their own education or provide tutoring and home schooling for a homebound child.
• Improve their knowledge and understanding.
• Find a way to make some money.
• create awareness of pitfalls they might never otherwise consider.
• Link with other caregivers who are facing similar problems and looking for similar answers.

I came away from Seattle with the idea that family caregivers need a site that lists all the useful links so they don’t have to slog through five million search results to find one obscure url that might not even be listed under the keyword they have chosen to search.

In searching links, I thought about us.

• I discovered how many family caregiver links have caregiver needs confused with patient needs.
• I discovered that some good links were hiding in unexpected places.
• I found a lot of links. Too many for a single page.
• I decided that links needed to be organized by which ones were generally relevant to the needs of all caregivers and which ones were relevant only to caregivers facing particular circumstances.
• I decided that publishing an ezine, would be more interesting and more informative than listing a cybermall.

I can’t even tell you what finally made me realize that what family caregivers need the most is a community. Maybe finding out that more than 70% of all American family caregivers report isolation as being their main problem. That’s about 38,000,000 people and that’s too many caregivers for any of us to feel alone.

PARTNERS
Who Make This Site Possible

Amazon.com
CB Mall
Work In Your PJs

About US

I spend a lot of time in waiting rooms, (i.e. doctor, hospital, clinic and lab waiting rooms.) On any day, I share these rooms with other caregivers. We hardly acknowledge each other. The sorry fact is that not only are we transparent to our government, we are next to invisible to each other.

Annually, American family caregivers contribute 257 billion dollars in services to the medical industry and to our society.

All those zeros ought to guarantee more than what we’re getting.

Why shouldn’t we feel like we’re entitled to something?

Many of us are desperate for respite care. All of us need to pay our bills. All of us need to be medically insured and able to build a retirement. All of us need protection under the law when we are dealing fairly and honestly in our family patient’s behalf.

Where is our government?

Where are we?

We are 54 million isolated souls wending our way through an endless number of silent waiting rooms. That's where we're at.

Consider what 54 million family caregivers means. There are at least 54 million family patients around also.

I do honestly believe that 108 million consumers can make their own solutions without relying on government funding, while remaining independent of partisan politics. In addition, we can:

• Understand why the medical industry in this country is so out of wack and work toward restoring it’s balance
  and
  
• Encourage our lawmakers to recognize the special agency that family caregivers have with their family patients.

3.5 million family caregivers are still highschool students. We can:

• Provide them with tutoring programs
• Convince our government to make highschool classes available on line as is done in European countries
• Become their mentors
• Establish all the programs that we older caregivers need that they need even more.

This site is about us. It’s not meant to be a commercial site but it’s going to have start making some money if it’s going to stay hosted, support message boards and chat rooms and if it’s going to grow.

But, I’m not asking you to buy anything or to donate any money. I am asking that you consider becoming involved in something bigger than yourself.

To reach its goals patienthands.com must become a true community. Growing it must be a community effort.

If you've read this far and you want to help:

• You can email me, tell me that you stopped by, that you agree or disagree and offer some constructive suggestions.
• If you tried one of the links and it didn't work, you can email me about it so I can figure out what happened ASAP.
• If you have trouble with your browser being able to display any of these pages correctly, you can email me with information about your browser and computing system so I can adjust my pages to work well for as many people as possible.
• If you really like what you read and you have your own website, you can add a link to this one. You can tell me who you are so I can add your link or banner to the About Us page.
• If you know of links that ought to be included here, you can submit them.
• You can tell your friends and family about this site.
• You are welcome to submit your ideas, your articles and your experience and expertise. But. . . It may be a good, long time before I can afford to pay for any of those things.

About Me

Like most family caregivers, my credentials are my family members, or more specifically, what ails my family members and what I do or have done to help them cope.

I provide some kind of care to more than one family patient.

• My mother in law suffers from ventricle heart arrythmia, high blood pressure, TIA's, emphesyma, degenerative disk disease, hyperthyroidism, memory loss and a few other things ... well, as she says: There's not a lot wrong with her just a little bit of everything.
• My husband's younger brother is mentally retarded and has Wegener's Granulomatosis, a terminal autoimmune disease which destroys pulmonary and kidney function.
• My mother is a cancer survivor with Crohn's disease, who suffers from multiple problems resulting from the nerve and tissue damage caused by radiation treatments to her neck.
• Last year I donated some time to help care for a woman in the final stages of stomach and bone cancer.
• In March of 2004, I traveled to California to help provide hospice care for my father who was diagnosed with a rare form of leukemia that causes complete bone marrow failure in people over 65.
• In April of the previous year, I spent 4 months in Seattle with my oldest son so he could receive a bone marrow transplant in an attempt to cure Hodgkins Lymphoma.

You would think that all this experience would make me some kind of expert. The value of my experience is that now, I take less for granted, I ask a lot more questions, and I'm considerably more persistent about nailing down the details.

What I know is that, at whatever stage I am now, there is someone standing back there on the threshold uncertain as to what her next step should be and whatever my future direction, there is someone on the path ahead of me and he already knows where the pitfalls are and can probably point me to the shortcuts.

One of the problems with writing the text for this site, is that I struggle with how much of my own personality and experience to write into it. Practical wisdom advises that it should be professionally homogenized and emotionally pasteurized. Warring with objectivity is the simple fact that everything I know about family caregiving -- every question I have ever asked -- has been inspired by the suffering and disappointments of people I deeply care for.

Patient Hands is not about me. Patient Hands is about us. However, I will probably have more to share about my family and you will undoubtedly hear my voice screaming through some of these pages -- which I have finally decided is probably well and good. What I want is for this site to be about family caring and about silent voices finally being heard.

What is Patient Hands?

Right at the moment, Patient Hands is a private, unincorporated business entity and I am it's sole proprietor.

It's short term financial goals are to:

• Make enough money to sustain its existence and it's future growth.
• Make enough money so I can have the time to provide for its existence and its growth without having to work an outside job.

It's primary long range goals are to become a public, not for profit, corporation which actively works toward all the goals in its Mission Statement and dedicated to enabling family caregivers.

Does it have any chance at all of achieving even it's least demanding goal?.

I imagine that is up to you.

Submitting Ideas, Articles and Links

If you wish to submit an idea or link, email me. If your idea or link is included in the future development of this site, your contribution will be acknowledged in a contributors section of the About pages and you will have my deepest thanks.

If you wish to submit an article, please query first about your idea. If you would like to submit but don't have a ready idea, query anyway. I have some ideas of my own and I need a lot of help. In the future, most of the ideas for articles I wish to assign will be posted to the main page of the section where they will be included. Before writing the article, query first in case the one that caught your attention has already been assigned.

If your article is published, as compensation, in the links area of the page where your article appears, Patient Hands will extend you the opportunity to post your own favorite link and a descriptive blurb on the subject of your choice, not to exceed 150 words. Content and language must be free of objectionable material. Static graphic links are acceptable. Animated links are subject to approval. The size of included graphics may reduce the amount of space available for text. Links to sites that promote pornography or other forms of exploitation will not be posted.

Patient Hands claims first electronic publishing rights. The author retains the copyright and all other rights.

You don't need to be a professional writer to submit. You don't need to be a health care professional. Your article needs to be informative, topical, well written, free from objectionable language and any statements you make other than personal opinion, must be supportable.

Patient Hands, as an electronic publication, is subject to all laws regarding personal privacy, slander and libel that apply to other publishing media. The author is expected to respect our position and use due diligence to protect our interests while querying, interviewing, quoting or otherwise reporting information regarding any person, persons or business entities.

In regards to web related style sheets and formatting, articles will be edited without notice. Factual information will be checked. The author may be asked to provide copies of notes and interviews to support quoted material.

Articles that are substantially changed by cutting or reorganization of material will be presented to the author for approval before publication. Any extensive rewriting will be the author's responsibility.

Article length should be between 500 and 1000 words. Longer articles may be accepted. The main ideas of long articles need to be separated under sub-headings for navigational purposes.

In addition, at the web mistress' discretion, articles may be posted to the active site for a period of no less than 30 days. Beyond that time, the author has the right to limit the maximum number of days he/she wishes the article to appear.

Author Links will remain posted for so long as the article is published unless the link is broken or redirected to a site which is inappropriate to a family publication.

Patient Hands retains the right to archive copies of all it's webpages and to keep archived copies of all articles available to the public for reference purposes. If relevant to the author's bio or to the subject of the article, the author's link and/or blurb may also be retained unless the author objects.

Links, Linking and Advertising

With the exception of links posted by contributing writers and reciprocating links to acknowledge sites that have linked to us, the links on this site are selected because they are useful to family caregivers.

In regards to commercial links, all links are chosen because they are useful to family caregivers. Some commercial sites offer affiliate/associate programs or partnerships and if they do, I have most likely taken advantage of the opportunity to generate some cash flow. However, such opportunities are not part of the criteria for selecting a link.

The sites that are actually willing to pay something for hosting their banner or link will be acknowledged in the About pages under Partners Who Make This Site Possible. In some cases, commercial links include an exclusivity clause as part of their affiliate/associate or partnership agreements. In such cases, where a decision must be made as to which links to include, the link that represents the greatest benefit to family caregivers wins.

Patient Hands does not sell advertising space. If you think your product, service or opportunity would be of value to family caregivers, then contact me, state your case and submit your url.

If you wish to link to Patient Hands, Patient Hands will post a reciprocating link in the About pages under Friends. If you would like me to include a banner or other graphic with your link, email me and tell me where to copy the graphic from or send it as an attached file. If space permits, information promoting your link will be incorporated in the link area. This is not a daily publication. I add links and update the site at least twice a month so your link may not appear immediately but should be ready to view within three weeks.

Below I have provided sized graphics and link information. The graphic is a .jpg file extension. With Internet Explorer, just right click on the graphic and "save picture as".

   100 x 35 px

   150 x 50 px

   200 x 70 px

<a href = "http://www.patienthands.com target = "_blank">Patient Hands</a>