Tuesday, May 28, 2013

Caregiving After A Stroke: Suggested Resources

[Reviewed and updated January 29, 2024]

Every one of us needs to show how much we care for each other, and in the process, care for ourselves. ~ Princess Diana

A reader writes: In all the years I’ve known her, my mom (age 79) has never been sick. Since my dad died six months ago, she’s been in and out of hospitals four times. She suffered a stroke and has had multiple seizures, all coming out of nowhere! If that wasn't enough, we now have to have 24 hour, 7 day care to make sure she doesn't stroke/seize again. We can't afford around the clock care so we are doing it ourselves. My sisters and I are trying our best to fulfill this sometime overwhelming duty. I am pulling the graveyard shift and it is killing me....
I am exhausted...beyond exhausted...there aren’t even any fumes to keep me going. I have not had more than 2 straight hours of sleep in any one day for the last 5 days....my body is struggling with the new graveyard shift.....I feel so overwhelmed, depressed, sad, conflicted, angry, scared and miserable. I have a young son with his own health issues that I have to deal with. I want so much to be just a mother but find myself being more of a daughter.....something’s gotta give and I think it's gonna be me. Help!

My response: First, it's clear how completely overwhelmed and exhausted you are, and it is imperative that you find some sort of respite for yourself as soon as possible. Getting yourself into a state of total exhaustion will do nothing to help your mother, and staying there will only put you at further risk for burnout and a breakdown of your own immune system, thereby making you more susceptible to all kinds of physical and emotional illness. So I urge you to make this a top priority for yourself.

How to begin?

Consult with a Specialist
You need some expert information from an eldercare specialist who can guide you in assessing and meeting your mother's needs for safety and well being, as well as your own needs for support and respite from your duties as her primary caregiver. So the first step might be to consult with a Geriatric Social Worker, a specialist who can offer experienced support and advice on how to deal with your mother's situation, help you to feel less helpless and alone, and assist you in exploring whatever services are available to you that you might not know about already. You can find a geriatric social worker by contacting your Local Agency On Aging (AAA), or you can ask your family physician, hospital, senior center, social service agency or religious community to suggest a geriatric social worker they have worked with in the past.

Your concerns about your mother's safety and the risk of her having another stroke are valid and certainly understandable. Nowadays there are many resources available to assist you in that regard.

AARP's Caregiving Resource Center

Adult Day Care: How to Pick a Center

Assisted Living Directories - See Grief Healing's Caregiving Links page for listings.

Being a Communication Partner - Caring for a stroke survivor with aphasia can pose unique challenges. Learning more to become an effective communication partner can help make things easier for you both.

Caregiver Personal Stories - Read stories of other stroke family caregivers who've shared their experiences. To request an information packet about stroke, see stroke information request.

Caregiving Café - This website provides a directory of useful links, contacts, resources and information about all aspects of caregiving, in order to more efficiently and effectively provide care to loved ones or to oneself when care is needed; to inform and to educate caregivers about rules, regulations and care; to 'meet' other caregivers in order to gain support, friendship, motivation and ways to cope as well as to exchange ideas; and to provide caregivers with a comfortable and inviting place where they can 'take a coffee break' from their duties, remembering that everyone needs time and space to recharge.

CareGiving.com - "We're a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand . . ."

Caring for the Elderly - Here you'll find online resource listings for the elderly, their children and caregivers, compiled by Jane Gross of The New York Times.

SeniorsList – Find Senior Services (e.g., Area Agency on Aging; home care; adult day care; assisted living facility) in your own community (search by zip code).

Benefits Checkup - A free service of the National Council on Aging (NCOA), a nonprofit service and advocacy organization in Washington, DC. Many adults over 55 need help paying for prescription drugs, health care, utilities, and other basic needs. There are over 2,000 federal, state and private benefits programs available to help. But many people don't know these programs exist or how they can apply. BenefitsCheckUp asks a series of questions to help identify benefits that could save you money and cover the costs of everyday expenses. After answering the questions, you will get a report created just for you that describes the programs you may get help from. You can apply for many of the programs online or you can print an application form. Types of expenses you may get help with include medications, food, utilities, legal, health care, housing, in-home services, taxes, transportation, and employment training.

Caregiver Guide to Stroke  - Practical Tips and Resources for New Caregivers : A stroke in the family can cause many shifts, whether it is relationship dynamics,finances, home modifications or role changes. As a spouse, sibling, child, grandchild or friend, you may be charged with providing daily assistance and support, plus planning and facilitating your loved one's care. Because stroke is sudden and unexpected there is often little or no time to prepare. Caregiving is a difficult job that takes a physical, mental and emotional toll. The American Stroke Association developed this guide to assist you and your family members throughout the caregiving process.

CaringRoad.com - An online community of family caregivers whose support network will help you meet other family caregivers who understand and empathize with how difficult it is to sustain this important role. You can base your search on the illness you're dealing with, your relationship to the person you're caring for or your geographical location. Based on the information you provide, this unique database will generate a list of other family caregivers in similar situations.

Life After Stroke, for Family Caregivers - Family members can help their loved one by providing encouragement, celebrating improvements and letting the survivor do as much as possible independently. Caregivers and other family and friends can reassure stroke survivors that they are wanted, needed and important to them. Providing care for a loved one after stroke can be an extremely rewarding experience. At the same time, it can be stressful and frustrating when you are suddenly thrust into the position of caregiver without warning. The information here will help you take care of not only the stroke survivor in your life, but yourself.

Medicaid – Find Medicaid information by state.

Medicare – What Medicare covers.

Next Step in Care – For FamilyCaregivers: Leaving the Hospital and Going Where?
"Sometimes it is not so easy. Your father is still recovering from his stroke and needs speech therapy and help relearning to walk. He may want to be at home, but you are not sure whether you can take time off from your job to be with him all day. What kind of help will he need? And for how long? You need information and advice from the discharge planner or case manager assigned to your family member's care. You should find out who this person is as soon as possible, arrange a time to meet, and ask for resources for making this important decision. Remember that your family member and you as the family caregiver have both rights and responsibilities." Read on here: https://www.nextstepi...Going_Where.pdf

Practical Information - Tips from other stroke family caregivers and valuable information to help ease the day-to-day stresses of caring for a loved one with stroke.

Recovering After a Stroke: A Patient and Family Guide - Strokes can occur in different parts of the brain which will result in different physical, emotional, and/or cognitive (mental) deficits. Caregivers will face different challenges based upon that person's specific set of needs for comfort and safety. Challenges to be addressed: Mobility, Swallowing, Activities of Daily Living, Communication.

Resources for Caregivers - Reminding us of the need to balance our own needs with those of the person we're caring for, this site connects caregivers to numerous resources and community services.

Stroke Caregivers Handbook (pdf) - "We are caregivers to parents, spouses and friends. Our ages range from the 20s to the 80s. We are men and women, faced with a situation almost no one else can understand without walking in our shoes. After five years, our group decided to share our knowledge and experiences with others who cannot join us online. Hence,the creation of this book. It is currently a work in progress, as material can be continually added to it, in order to provide useful, practical advice to caregivers dealing with stroke. Whether new to this plight or an 'old-timer'– we hope our tips and ideas will help anyone facing this situation."

The Rosalynn Carter Institute for Caregiving

Seek Professional Help
Finally, while I can offer you all sorts of resources I've managed to find on the Internet, the question arises: Where will you find the time or the energy to follow all these links and investigate which resources would be of greatest use to you and your mother? That is where a geriatric social worker can be of such enormous help to you, my dear. That person will be able to sift through all of this information and help you find what best fits your individual circumstances. I hope you will think of this as a gift you can give to yourself, and one you need and so richly deserve. ♥

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