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Tips for Caregivers

Stroke Connection Magazine often has articles that are so beneficial for Caregivers.  Here are some tips from thier article in the November 2010 issue.  Subscribe

  • Take stock of your abilities, needs and concerns.  Ask yourself: Am I able to be a caregiver?
  • Ask yourself what you need to do tomorrow, next week, next month and next year to get through this illness.  If the time frame is too large, make smaller time assessments of your needs.
  • Determine if your loved one understands and accepts the demands of the illness.
  • Develop a care coaching team – and make a list.  Include doctors, nurses, therapists, social workers, financial advisors, attorneys, family members and friends.  Make sure the list includes phone numbers and e-mail addre3sses and is never far from your phone.
  •  Learn to laugh at the little things.  Time is precious.
  •  Find time to talk, cry, laugh, discover, give, take, inspire, hope and dream
  • Protect your own health.  That means eating a good diet and getting regular physical activity and respite care.  Get the sleep you need and visit your doctor regularly.
  • De-stress:  Implement stress reduction techniques such as exercise, massage, meditation, journaling or support group.
  • Make sure your hoe is set up to provide safe care.
  •  Use appropriate technology, such as smart phones, medication reminders, life alerts, drop-foot therapeutic devises.
  •  Know your limits and set appropriate boundaries.

“Just Trying To Take Care Of You” is an article by Lyn Mouat in her segment “Fuel for the Journey” for the StrokeNet Newsletter.

Depending on someone else for things I used to do myself is hard.
When we went on a cruise this spring, we ordered a scooter to help me get around. It included a wheel chair. At times, the chair was more convenient than the scooter. I found being in that chair extremely frustrating and humbling.

I wanted to control everything while in that chair. The truth is, I really had no control at all and needed to trust Gary to wheel me around safely.

Being my full time caregiver, Gary Read On

Caregiving Resources

The American Stroke Association has a great list for Caregiver Resources on their website. Click on this link to access: Caregiver Resources

Administration on Aging

Provides links with information and assistance in gaining access to supportive services in your community. Administration on Aging

While caring for stroke survivors can be highly stressful for some families, many families feel little or no strain from caregiving, and even report that being a caregiver can be personally rewarding, according to research published in Stroke: Journal of the American Heart Association.

In a study of 75 stroke caregivers:
90 percent reported that caregiving enabled them to appreciate life more;

44 percent reported “no strain;” and

41 percent reported “some strain.”
Furthermore, average depression scores were well below depressive symptom levels typically reported in similar studies recruited from clinical settings, researchers said.

The findings came from a population-based study of the stroke care experience that the authors said includes caregivers who may be coping well and who may not seek out professional assistance.

“Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients,” said William E. Haley, Ph.D., lead author of the study and professor at the School of Aging Studies of the University of South Florida, Tampa.

Researchers studied 75 people caring for stroke survivors enrolled in the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an epidemiologic investigation of stroke incidence and mortality including a large, racially diverse national sample of adults over age 45. They gathered caregiver reports of the prevalence and stressfulness of patient impairments through an ancillary project, the Caring for Adults Recovering from the Effects of Stroke (CARES) study. Both REGARDS and CARES are based at the University of Alabama at Birmingham.
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The following is being issued by American Stroke Association:

1. It’s better to find out than miss out. Be aware of the medications that have been prescribed to your loved one and their side effects. Ask if your home should be modified to meet the specific needs of the stroke survivor. Ask a doctor, nurse or therapist to clarify any unanswered questions or to provide written information that explains what occurs after the stroke and during recovery or rehabilitation.

2. Reduce risks, or stroke may strike again. Survivors who have had one stroke are at high risk of having another one if the treatment recommendations are not followed. Make sure your loved one eats a healthy diet, exercises, takes medications as prescribed, and has regular visits with their physician to help prevent a second stroke.

3. Many factors influence recovery. Recovery depends on many different factors: where in the brain the stroke occurred, how much of the brain was affected, the patient’s motivation, caregiver support, the quantity and quality of rehabilitation, and how healthy the survivor was before the stroke. Because every stroke and stroke survivor is unique, avoid comparisons.

4. Gains can happen quickly or over time. The most rapid recovery usually occurs during the first three to four months after a stroke, but some stroke survivors continue to recover well into the first and second year post-stroke.

5. Some signs point to physical therapy. Caregivers should consider seeking assistance from a physical or occupational therapist if their loved one has any of these complaints: dizziness; imbalance that results in falls, difficulty walking or moving around in daily life; inability to walk six minutes without stopping to rest; inability to do things that he/she enjoys like recreational activities or outings with family or increased need for help to engage in daily activities.

6. Don’t ignore falls. Falls after stroke are common. If a fall is serious and results in severe pain, bruising or bleeding, go the Emergency Department for treatment. If a loved one experiences minor falls (with no injury) that occur more than two times within six months, see your physician or the physical therapist for treatment.

7. Measuring progress matters. How much acute rehabilitation therapy your loved one receives depends partly on his/her rate of improvement. Stroke survivors on an acute rehabilitation unit are expected to make measurable functional gains every week as measured by the Functional Independence Measure Score (FIMS). Functional improvements include activities of daily living skills, mobility skills and communication skills. The typical rehabilitation expectation is improving 1 to 2 FIM points per day.

8. A change in abilities can trigger a change in services. Medicare coverage for rehabilitation therapies may be available if your loved one’s physical function has changed. If there appears to be improvement or a decline in motor skills, speech or self-care since the last time the patient was in therapy, he/she may be eligible for more services.

9. Monitor changes in attitude and behavior. Evaluate whether your loved one is showing signs of emotional liability (when a person has difficulty controlling their emotions). Consult a physician to develop a plan of action.

10. Stop depression before it hinders recovery. Post-stroke depression is common, with as many as 30-50 percent of stroke survivors developing depression in the early or later phases post stroke. Post-stroke depression can significantly affect your loved one’s recovery and rehabilitation. Consult a physician to develop a plan of action.

11. Seek out support. Community resources, such as stroke survivor and caregiver support groups, are available for you and your loved one. Stay in touch with a case manager, social worker or discharge planner who can help you find resources in your community.

12. Learn the ins and outs of insurance coverage. Be sure to consult with your loved-one’s doctor, case manager or social worker to find how much and how long insurance will pay for rehabilitation services. Rehabilitation services can vary substantially from one case to another. Clarify what medical and rehabilitation services are available for hospital and outpatient care. Determine the length of coverage provided from your insurance (private or government supported) and what out-of-pocket expenses you can expect.

13. Know when to enlist help. If rehabilitation services are denied due to lack of “medical necessity,” ask your loved one’s physician to intervene on his or her behalf. Ask the physician to provide records to the insurance carrier and, if needed, follow up yourself by calling the insurance company.

14. Know your rights. You have rights to access your loved-one’s medical and rehabilitation records. You are entitled to copies of the medical records, including written notes and brain imaging films.

15. Take care of you. Take a break from caregiving by asking another family member, friend or neighbor to help while you take time for yourself. Keep balance in your life by eating right, exercising or walking daily, and getting adequate rest.

Source: American Stroke Association

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Eldercare Locator

The Eldercare Locator is a national toll-free directory assistance public service of the U.S. Administration on Aging that helps people locate aging services in every community throughout the United States.

Why is it so hard to ask for help? An article by Stroke Connection Magazine.

What’s a good response to the statement “Call me if you need me?” Despite the fact that family caregivers are drowning in responsibility or are really confused about what the next step out to be, they often respond “no thanks” when help is offered.. Asking for and accepting help is a complex issue. Obviously you first need to admit that having some help will make a real difference in your loved one’s quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be the easiest to ask others to do? Which do you really want to do yourself? And which, if any, can you afford to pay others to do? If this just sounds like more work, know that it doesn’t have to be an overwhelming task but rather just a way to organize the thoughts and information you already have. Are you ready to give it a try?

Here are SIX STEPS to getting help…
1. Recognize that caregiving, like any job, is made up of lots of individual tasks, not all of which are of the same importance. Some tasks take a few minutes; some may take many hours. Some tasks are easy; others require some skill and fortitude. The challenge is to know the difference.
2. Recognize that asking for help is a sign of strength, not weakness. It means you truly have a grasp on your situation and have come up with a proactive problem-solving approach to making things easier and better.
3. Create a list of the tasks that need to get done in any given week, or at least those you are most concerned about, such as balancing your responsibilities at work with taking Mom to the doctor and Susie to soccer practice, bathing and dressing your husband, cooking, cleaning, etc. When you see how long the list is you’ll quickly understand why you are so tired and don’t have time for yourself.
4. Group your tasks into categories such as personal care tasks for your loved one, transportation, household chores. You can group your tasks into only a few broad categories, or many specific ones. There’s no right or wrong way. It’s all a matter of personal preference.
5. Write down your caregiving worries. Where will we get the money to pay for John’s medications? Who will care for Mary if I get sick? Where can I find an adult day facility that provides transportation? Seeing them in black and white helps diffuse some of their emotion. It also allows you to think more rationally about your concerns and understand how getting help with some of your tasks might lessen the stress. It can provide the basis for deciding which tasks you might ask a neighbor, family member or the church to help out with, which you are willing and able to pay someone else to do, and which there might be a public program for.
6. Share your lists with someone you trust before you actually reach out for help — a friend, therapist, or clergyman, perhaps. The intent is to first get comfortable with the idea of talking about your need for assistance and hopefully get some encouragement and good ideas in the process. Then take a deep breath and actually ask someone to help with one of the tasks on your list, or ask for guidance in resolving your most persistent worry. Start with something small, especially if you are looking for hands-on assistance or something that requires someone doing you a favor. Don’t get discouraged if you get rejected at first. It sometimes takes perseverance. Just remember —the effort is worth it because the goal is better care for your loved one and yourself.

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Take Care of Yourself!

As a caregiver for a stroke survivor, it is easy to forget to take care of yourself and manage your own health. National Stroke Association has developed the STARS program with support from a Charitable Contribution from the Bristol-Myers Squibb/Sanofi-Aventis Pharmaceuticals Partnership. STARS stands for Steps Against Recurrent Stroke and is a program that focuses on ways to reduce the risk of a recurrent stroke in your stroke survivor.

Take Care of Yourself!
You may become so preoccupied with caring for your loved one that you forget your own needs. Taking care of yourself does not have to take a lot of time or money. Here are a few ideas:
Take an occasional break from caregiving (use respite or adult day services or if finances prohibit paying for a break ask for help from family, friends or community organizations). To read more tips, visit www.stroke.org/CARE .

Take time out for yourself: something as simple as enjoying a cup of tea or coffee, reading a book or watching a movie while your survivor is napping or has gone to bed can provide some relaxation.

Join a support group. Find a local support group in your area by visiting www.stroke.org/support_groups .

Try journaling: reserve some time for writing by getting up early or going to bed after your survivor — this can be a great way to begin or end your day. For more information about the power of journal therapy, visit www.stroke.org/SS_MAG_ma2008_care .

Be sure to get enough sleep, eat well and keep your own doctor visits to make sure you stay healthy and manage your risk factors .

For more information, contact the National Family Caregivers Association
at (800) 896-3650 or http://www.nfcacares.org/

and

National Stroke Association at
(800) STROKES or www.stroke.org .

Sponsored by Bristol-Myers Squibb/Sanofi-Aventis Pharmaceuticals

An article by Stroke Smart Magazine.

After her husband’s stroke, Leah Ann Price used to call home from work several times a day to check on him, growing nervous if he didn’t answer right away. Ed, a cabinet installer in Council Bluffs, Iowa had a stroke at age 54. His wife became his primary caregiver.

“It can be very stressful,” said Leah Ann. “His balance is off. It is difficult to leave him alone.”

But since turning to Faith in Action, a national volunteer outreach program that offers respite care and support to chronically-ill people and their caregivers, Leah Ann does not worry as much. “It’s been a blessing,” she said.

The Prices are among a growing number of family caregivers who are turning to repite-care programs for support.

“Respite care is an opportunity for family members to take a break and put their loved one under the care of someone who will give them the same attention that they would,” said Kristine Cichowski, director of the LIFE Center of the Rehabilitation Institute of Chicago. “It allows the caregiver to take a breather, for a couple of hours, days or even a week.”

The cost of respite care can range from token fees for volunteer programs to $80-$150 an hour, said Cichowski. Or, it can simply be a family friend stopping by for an hour or two a week. The care-giver doesn’t have to be a registered nurse or medically trained. High school students, church groups and senior citizens can offer respite care.

“It’s critical for caregivers to take a break because you’re only as good to your loved one as you are to yourself,” said Cichowski, who turned to respite care in 1999 when her father had a stroke. “I had four kids at home and some of my help even came from strangers. People want to help, they just don’t know how. It’s OK to ask.”

She recommends starting out small – having a friend stop by for coffee and talk to the stroke survivor. It’s important that the caregiver be there for the first visit or two to help build the relationship and get conversations rolling.

Getting the stroke survivor involved in support groups or classes is another form of respite care, and Cichowski. While the survivor is in class the caregiver can take a break.

“An underlying theme is people contact, which particularly important for stroke survivors who can feel isolated,” said Cichowski. “So the more you broaden your support network the better.”

RESOURCES:

National Respite Locator Service: www.respitelocator.org ,

Life Center of the Rehabilitation Institute of Chicago: http://lifecenter.ric.org

Lotsa Helping Hands: www.lotsahelpinghands.com

National Respite Coalition: www.archrespite.org

National Family Caregivers Association: www.nfcacares.org

Faith in Action: www.fianationalnetwork.org

Family Friends: Homecare www.familyfriends.com

National Adult Day Services Association: www.nadsa.org

Senior Companions: www.seniorcorps.gov

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