The FYI’s Elder Care Toolkit
The Needs Of Elders
A large percentage of the American population is part of the “sandwich generation” – people who care for their elderly parents while also raising their own children. The FYI Eldercare Toolkit was inspired by conversations about the unique needs and responsibilities that come with caring for an elderly parent or relative.
Signs
How do you know if your parent or elderly relative is reaching the stage where they might need extra help? Here are some signs you can look for:
• Does their house or yard need care?
• Do you notice disheveled clothing?
• Are there broken appliances in their home that aren’t getting fixed?
• Are there spoiled/expired groceries that don’t get thrown away?
• Have you noticed changes in mood or extreme mood swings?
These are just some of the early signs that your loved one may need a little extra help. Click here to read more.
In addition to these signs, elders may have specific needs that may not occur to their caregivers. What are some needs they may have?
Empowerment and Autonomy
Empowerment and autonomy are key needs for elders, regardless of their living situation. Elders need to feel independent – they need have a say in the decisions that affect their lives.
In a study based in a nursing home, two groups of older patients were examined. One group was given the autonomy to decorate their rooms with their choice of plants, structure their day how they liked, and decide what activities to engage in. The other group had each of these factors pre-planned by the nursing home staff. Those who were given autonomy in decision making had happier moods and felt more hopeful.
Here are some ideas to empower elders with a sense of autonomy:
• Involve them in small decisions, like choosing their own meals or social activities.
• Give them an active role in arranging activities.
• Encourage them to make healthy life choices by presenting them with relevant information and asking their opinion on major decisions, especially those that concern them.
• Encourage them to do as much as they are able. If they can no longer perform a whole task, allow them to do what they can before assisting them with the task.
Mental-Health and Well-Being
As a person ages, it can be easy to notice that their physical health is impacted. But aging takes a toll on a person’s mental health too. Elders can experience memory loss or dementia due to illness or aging. Various mental health problemsbecome more likely with age, like depression and anxiety. These conditions are more common in elders than once thought. They can stem from:
• An increase in life stressors like loss of mobility or the inability to perform tasks that were once easy.
• Loneliness due to loss of friends and family
• The feeling of loss that may come with moving from a familiar home or a change in routine and/or environment
Identifying risk factors and signs of depression is crucial in caring for elders along with knowing how to help.
Empty Nest Syndrome
For many parents, caring for their children occupies most of their time and energy. But what happens when their children become independent and eventually move out of the family home? This shift can leave elders with a large void and lack of purpose. What can help?
• Planning regular visits with their children and extended family
• Learning how to use technology to stay connected with family and friends
• Having a regular exercise routine
• Being surrounded by social support from family members and/or community members from similar ethnic and cultural backgrounds
This new lifestyle will come with many adjustments. One such adjustment is the relationship that older parents have with their adult children. Check out this article by The FYI about nurturing a healthy relationship with adult children.
Older adults also have enormous life experiences that are an important resource to the community. Their life experience, time, and energy that was once directed towards raising the family can be channeled elsewhere, such as:
• Getting involved at the local mosque
• Tutoring at schools
• Reading to elementary school children
• Mentoring young people
• Teaching skills like cooking, knitting, making repairs
An Aging Loved One: What to Expect and How to Prep
Panelists Nadeem Siddiqi, Maryum Khwaja, LCSW, and Omar Haydar discuss the elder care journey, the caregiver and elder relationship, self-care and avoiding caregiver burnout.
Talking To Your Family About Elder Care
Have more than one conversation
As you begin having these discussions with your parent(s), don’t try to address all concerns at once. These conversations will be sensitive, so you’ll need to have more than one conversation and give things time. Not sure how to get started? Here are some conversation starters to help bring up the topic.
Communicate with gentleness
When you introduce the subject to your parent(s), make sure you explain the reasons for your concern with respect and consideration rather than by making demands. People tend to get defensive if they fear that some of their autonomy may be taken away. When discussing caregiving with siblings or relatives, avoid talking/arguing about the caregiving situation in front of the older adult being cared for, especially talking about him/her in the third person. This can make it feel as though s/he does not have as say or an opinion in the situation.
Empathize
Empathize with what your parent or relative may be feeling. Realize that it can be hard for elders to accept help from their family. They may be afraid of losing their independence or burdening others with their needs.
Listen genuinely
Make room for them to express their needs and be respectful of their concerns and wishes. If your help isn’t accepted even though it’s needed, try to be tactful in offering care. If they understand that you are not trying to take control or manage their life without their consent, then your help may be better received.
Anticipate the feelings of other family members
Realize that these conversations are not easy for anyone involved (grandparents, parents, or children) especially in cases of serious illness. Make sure to talk about these issues with children who may be affected by the decisions being made about their grandparent(s).
Leverage spiritual support
Use spiritual resources to deal with loved ones’ sickness and mortality.
Be prepared
Learn how to work through inter-family conflict that may arise.
Explore different options
Explore different options for caregiving that the family can discuss together. There is no one-size-fits-all solution and each family is unique. For example, some families may consider external care, such as in-home caregiver or other such alternatives.
• Ensure that the person you are entrusting them with is certified and receives proper instructions regarding the care of your elder family member.
• Make sure that you, your elder relative, and the caregiver are all on the same page about the tasks and services being provided. Try this sample contract as a starting point.
• If considering a nursing or senior home, here is a list of common pitfalls to avoid when choosing a facility for your parents.
Familiarize yourself with the signs of possible elder abuse, and how to get help if this is something that you suspect.
Download our free
Elder Care Khutba Guide!
Use this guide to prepare a Khutbah sermon about the importance of understanding the needs of elders and preparing for the caregiving journey.
Sharing Caregiving Responsibilities
With 2 out of every 3 caregivers a female, the role of caring for elder parents is more often filled by women than men, whether it be a daughter, daughter-in-law, or spouse. [1] Caregiving is a demanding responsibility, and an imbalance of gender roles in the family can lead to difficult conversations, hard feelings, sibling conflict and even broken relationships. It’s important to have honest conversations with your family members to discuss the responsibilities of caregiving.
Be honest with yourself
Be honest with yourself and each other when discussing concerns regarding your parent(s) and their mortality.
Consider exsisting roles in the family
• Who is the closest to the parent/care recipient (which could potentially determine this sibling’s particular role)?
• Who should be in charge of overlooking and managing tasks related to the care of your parent(s)?
Create a plan
Create a plan to work towards sharing the load more fairly.
Everyone must contribute
Everyone must contribute in some form or fashion.
Be flexible
Be a team
It can be really difficult for caregiver to ask for help, so its important for family members to offer help rather than waiting to be asked. Also, especially as life circumstances change, responsibilities may need to shift among family members. Frequent check-ins about caregiving responsibilities can be helpful to avoid burnout or conflict in the family.
Seek out resources together
Many educational support programs exist to provide information about eldercare. Attending these programs with at least one other family member is an opportunity to maximize support for all.
Tips for managing conflict
When managing conflict in the family related to caregiving, keep these things in mind:
• Set goals for productive solutions like compromise and/or forgiveness, instead of focusing on “being right.”
• Recognize your limitations. Sometimes knowing when to stop trying to make someone understand is just as important as educating your sibling(s) and advocating for them to be involved.
• Consider your own role in the conflict. Remember that you can’t control how the other person acts — but you can control how you respond. Take time to honestly consider your own role in the conflicts you’ve had in the past and think about how you can handle things differently.
• Let go of the idea that asking for help is a sign of weakness.
• Set boundaries. It’s important for anyone in a caregiving position to set and maintain solid boundaries, but this is especially true if you have a difficult relationship.
Refer to this guide about how to handle family conflict.
4 Tips for Support When Caring for an Elder
Without leaning on a wider circle of support, caregiving can easily become overwhelming.
3 Tips for a Stronger Relationship with your Adult Children
How to give advice so they listen.
Aging with Dignity - Tips to Navigate Caregiving
How to navigate common conversations about aging.
Avoiding Burnout Through Self Care
Those who are taking care of others are often in need of the most care themselves. Caring for an older adult can be emotionally, physically, and even financially draining. Caregiver burnout is a “state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. It occurs when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially.”
Find ways to help manage stress
It’s difficult to provide the best care to your elder parent or relative if you don’t care for yourself. Look out for the signs of fatigue and burnout, and invest in your own care.
Find ways to help manage stress and practice self-care. Ignoring stress and fatigue harms both the caregiver and those they are caring for.
Circle of support
Help your elder loved one lean on a wider circle of support. See this article from The FYI for 3 practical tips.
Accept help
Accept help from others. If you find it difficult to do so, read more here.
Lifestyle changes
Accept the mindset and lifestyle changethat comes with caring for an elder.
Take breaks
Finding creative ways to take breaks is another way to reduce stress.
Use an app to help manage your responsibilities
Use an app to help manage your caregiving, responsibilities, connect with other caregivers for social support, and access resources and tips to overcome some of the daily challenges.
Looking for more?
Check out these resources for more helpful information.
• Basic Checklist for Taking Care of the Elderly
• A Khutba Guide on Eldercare for imāms and khatībs
• Elizz – Information, education and skills training to help with caregiving
• AARP – State by state resources and solutions.
• Senior Care Resources by A Place for Mom – Free resources and advising on senior living
• How to apply for a handicapped parking permit – Disability status by State
• Technology – Alexa and other voice assistants for senior care
• Living with Alzheimer’s – Information, education and skills training to help with Alzheimer’s caregiving
To learn more about research related to this topic:
• A Social Constructionist Approach to Diversity and Social Relations Among Muslim Americans
• Family Caregiving Systems: Models, Resources, and Values
• Michigan Center for Contextual Factors in Alzheimer’s Disease – Engages with Arab American and Latino communities to bring information and resources about Alzheimer’s and related dementias
This toolkit was authored by Sarina Bajwa, MA, Issra Killawi, BA and Sarrah AbuLughod, MA, with support from Tariq Elsaid, MSW candidate, Madiha Tahseen, Ph.D., and Sameera Ahmed Ph.D. It was reviewed by Dr. Kristine Ajrouch, Ph.D. whose research focuses on the experience of aging from the perspective of older adults.
An update to this toolkit was generously funded by the
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