Have just discovered another site that helps caregivers and stroke survivors with forums and handbooks for everyone to post their experiences.

Here is an excerpt from their ‘About Us’ page with (hopefully) a link. If I’ve been able to put this in correctly.

“The Stroke Network provides on-line support to stroke survivors and stroke caregivers of adult stroke. We have found that a stroke caregiver or another member of the stroke family will seek out a web site looking for information about stroke after their loved one has just had one. They will perform a search in one of the major Search Engines, ie Google, and then click on our homepage at http://www.strokenetwork.org/

Not only do we have dozens of resources for stroke survivors but we also have many resources for the stroke caregiver.

On the one hand, the stroke survivor is usually looking for information about stroke or is trying to connect with other stroke survivors. Many stroke survivors are released from their rehabilitation hospital and then might not have a local stroke support group, transportation to the group, conflicts with the meeting schedule or might have emotional lability so bad that they cannot bear the thought of being around others.

On the other hand, the stroke caregiver needs information and lots of it.  Stroke caregivers are faced with a multitude of decisions.  Many stroke caregivers are totally stressed out between having to make immediate decisions,  searching for information and then needing a medium to vent, rant, rave and to ask practical questions.

Our support services include daily chat sessions, instant messages, email, blogs and a message board with several forums relating to topics important to stroke survivors and stroke caregivers.  Full benefits are displayed in the Member Area.  Our information resources include a monthly newsletter, book shop, articles, links, webcasts and a Stroke Caregiver Handbook that our experienced stroke caregiver members have written for the new stroke caregiver.

There are many more features to our site. Our forums are available to anybody with a computer but may not be able to make it to a real life support group. We use the net to connect with others, however we can.

So who are we? We are people from around the world who have survived a stroke that want to do something for our stroke brethren. We know that they cannot obtain the stroke support locally so we are here for them on-line.”

Do visit the site!

The Internet is truly a useful means by which to find appliances, equipment and gadgets to help a stroke victim and his or her care giver. One site which is rich in content is Caregiver Products.com. Although this is a clearly commercial website Here there is a wide plethora of products and disability aids for stroke and other handicapped individuals.

Some of the items that caught my attention were ingenious products like a leg-lifter and a ‘Muff Vest’. This vest was designed by the spouse of a stroke survivor and helps to distribute the weight of an affected arm across both shoulders.

Other equipment like accessories for a wheelchair or a Bed Caddie – a piece of equipment that helps people with a general weakness or decreased back strength to pull themselves up to a sitting position are featured.

Prices are given in US dollars but it’s not clear whether these items can be shipped to India and whether there’s an affiliate supplier in the sub-continent.

The biggest or hardest challenge a caregiver faces is—as the Serenity Prayer says—finding the courage to accept the things that cannot be changed, the courage to change the things that can be changed and the wisdom to tell the difference.©

The 23rd Psalm
The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name’ sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.

St. Teresa’s Bookmark
Let nothing disturb you;
nothing frighten you.
All things
are passing.
God never changes.
Patience
obtains all things.Nothing is wanting to him who possesses God.
God alone suffices.
Taken from: http://www.healthsystem.virginia.edu/internet/chaplaincy/help.cfm

Communicating with caregivers about their role can be challenging. In 2001, the National Family Caregivers Association and the National Alliance for Caregiving conducted focus groups with caregivers to find out what they think about their role. Some highlights of the final report are provided here, and offer some insight into ways to improve communication with caregivers whether you are a healthcare professional, a social worker, or a friend or relative of a caregiver.

Caregivers focus on their loved one, not on themselves. In general, most caregivers see caregiving as a role they play in relation to their loved one, not something they need to support themselves in doing. Many say they are “putting their own lives on hold” to care for their loved one and will “balance it out” later.

Many caregivers are hesitant to share duties with other family members. Participants are reluctant to seek help with their caregiving duties — even from other family members — for many reasons. Some feel that no one can care for their loved one as well as they do, and so feel guilty leaving their loved one with anyone else. Others feel they have no one to ask for help, or are waiting for people to volunteer.

Most caregivers are unfamiliar and uncomfortable with outside services. Participants are especially resistant to the idea of receiving respite services from an outsider. Few were aware that such services are even available, and most assume that they would have to pay someone to provide this service. Many argue that their loved one would not feel comfortable having a stranger care for them. Many say they would not feel comfortable using a respite service to do something “just for themselves,” and would only use such services to get things done like shopping or laundry.

Caregivers are reluctant to discuss their caregiving responsibilities at work. Some of the caregivers have talked with their employers about the affect caregiving has on their work lives, and many have found their employers to be supportive and flexible. However, this is not always the case. Some are reluctant to talk with people at work about their caregiving. A few say they have harmed their careers — or even had to give up jobs — because of their caregiving role.

Many caregivers are reluctant to talk about — or even speculate on — whether or how caregiving affects their own health. They admit to feeling tired and stressed, but few talk of other effects. Only a handful have talked to a doctor about their caregiving. On the other hand, a few say they have been clinically depressed or physically ill as a result of caregiving.

Most caregivers, if they are looking for help or advice of any sort, are interested in how they can do a better job as a caregiver or improve their loved one’s quality of life. This suggests that the best way to approach caregivers is to start by talking about caregiver resources, ways to help the person for whom they are caring, and improving themselves as caregivers. Then, you can talk about making things better for themselves, focusing on the fact that getting the help and support they need, and taking time for themselves, will make them better caregivers.

Adapted from Family Caregivers Self-Awareness and Empowerment Project Focus Group Report.

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The following has been adapted from Stroke Recovery Canada

To any visitor who also happens to be or have been a Caregiver, I invite you to please add any tips you possibly can. 

• Take one day at a time
• Accept your limitations
• Learn to ask for and accept help
• Don’t feel guilty about your position
• Don’t bottle up negative feelings – talk about them to someone you trust
• Have a daily routine and stick to it
• Take time for yourself and stick to it
• Take time for yourself every day
• Keep your sense of humour
• Look after your health – get plenty of rest, exercise daily, eat a nutritious diet, and see your doctor when stress builds up
• Take advantage of local support groups – of any kind, friends, a coffee group anyone
• Develop a caregiver peer support network (SRN)
• Try to remain socially active
• Find a caregiver respite programme in your community
• Consider modifications to the home and assistive devices
• Consider nursing and housekeeping services

*Quotes contained are by participants from a caregiver workshop help in Burlington in 1995, involving the Community Health Services Centre, Burlington SRA, Fellowship of Stroke Survivors and the United Way.

For more information about stroke recovery, contact:

Stroke Recovery Canada
10 Overlea Blvd.
Toronto, ON M4H 1A4
1-888-540-6666 or 416-425-4209
www.strokerecoverycanada.com