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Everyone will be touched by caregiving at some point in their lives. Rosalynn Carter said it first and she said it best: "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." The latest data shows that 53 million Americans provide unpaid care to an adult. Nearly one in five caregivers provide care to an adult with health or functional needs.
Caregiving literally means the activity or profession of regularly looking after a child or a sick, elderly, or disabled person. This definition of caregiving includes a very large population of paid and unpaid caregivers. Many people don't consider themselves caregivers. They may be a parent with a child with a disability; helping an older loved one by picking up groceries for them or helping them pay their bills; a staff who provides supports and services; part of the "sandwich" generation, i.e. taking care of their own children while also taking care of older family members. The caregiving umbrella covers a wide range of tasks, responsibilities and "other duties as assigned".
The caregiving role provides challenges and rewards to both the caregiver and the person receiving care. The role can often be overwhelming and exhausting. Many caregivers feel that there's always something more to do and they just can't get it all done. This ongoing challenge can often lead to increased stress and the decreased health of the caregiver. The person receiving care may also feel guilty about needing so much time and needing help to do things they used to do themselves. As the relationship progresses, a balance can be found through good communication, realistic expectations and additional caregiving resources.
Additional resources can often be found within the network of family and friends, in the community, online and through support groups. Caregivers are never alone, but can often feel very isolated especially when medical needs increase or rehabilitation for injuries or other health conditions is necessary. Many caregivers can find support through talking with others and finding local networks, such as through churches, for assistance. As caregiving responsibilities may increase, the opportunities and time for these social connections and support may decrease. Special effort and attention to keep the balance is especially critical at these times.
By nature, caregivers put others' needs first and don't feel that they can take time for themselves. They feel guilty about taking time for their own needs, however, they must be mindful to take that time to recharge and renew themselves. It is like the airplane instructions of putting on your own oxygen mask first so you can then attend to others. Likewise, caregivers must stay healthy and happy in order to take care of others. Taking even five minutes for a quick walk or just to sit and do nothing will ultimately lead to increased health benefits and continued positive interactions. Self-care can also increase the capacity for patience and understanding when caregiving situations become more difficult. Self-care is often forgotten or is way down on the list of priorities for the day.
Caregivers also become master information managers. Setting up working organizational systems, such as filing or weekly medication boxes, makes many tasks much easier to manage. A medical manager can keep all information easily accessible. This system makes the management of medical information much easier. Information about services received can also become overwhelming. A similar system, set up by category, online or hard copy, helps keep that type of information easily organized and retrievable.
Technology can also be used to keep track of information and make life easier. Automatic reminders and alerts can be set up on smart phones. Safety alarms can be set up within the home to alert caregivers remotely to any motion at any time of day. Technology can also be used to help stay connected with family and friends. Video chats can provide uplifting times for both the caregiver and the person receiving care. Technology is also an easy way to get the next generation of caregivers involved!
Caregivers need ongoing support to continue to be effective in their roles. This need has been recognized by lawmakers at the state and federal levels. Recent legislation in New York State strengthens the support for caregivers through the Caregiver, Advise, Record, Enable (CARE) Act. Congress received the Family Caregiving Advisory Council's report on 9/22/21 regarding the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act identifying the needs of caregivers.
In summary, the top five tips for finding balance while caregiving are to:
1. Appreciate caregiving time spent with the person.
2. Make social connections through in-person or online support.
3. Take care of yourself- physically, emotionally and mentally.
4. Manage information through organizing systems.
5. Use technology for tasks whenever possible.
Caregivers face many challenges, but can find balance and receive many rewards. Caregiving provides the satisfaction that someone else's life is improved and their needs have been met. The time spent in the caregiving role enriches both the giver and receiver of care. By helping one person at a time, caregivers really make all the difference.
To find more information on local support groups, go to: https://www.aarp.org/caregiving/life-balance/info-2021/support-groups.html
For an excellent self-care workbook, go to: https://www.caregiversnetworkek.com/wp-content/uploads/sites/255/2018/09/selfcarebooklet.pdf
For a comprehensive overview of digital resources for caregivers, go to: https://www.caregiver.org/resource/digital-technology-family-caregiver/
Recent legislation in New York State strengthens the support for caregivers through the Caregiver, Advise, Record, Enable (CARE) Act. Click here for more information on : https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2014/aarp-creates-model-state-bill.html
Congress received the Family Caregiving Advisory Council's report on 9/22/21 regarding the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act identifying the needs of caregivers. For the full report and more details, go to: https://acl.gov/RAISE/report
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The families of Wildwood’s site-based day habilitation programs at Riverside, New Karner, and Pinecrest have a new opportunity for connection with one another, resource sharing, and information acquisition--the Day Hab Family Connection Network.
Social worker, Amelia Izzo spearheaded the formation of this group to support individuals in both day services and residential services. It was an important addition to the program.
“After the school years, parents don’t have the same opportunities to connect. We wanted to form a group for that to happen again within Day Supports,” Jean Miller, Riverside Site-manager said.
Amelia is an experienced group facilitator, having conducted therapeutic groups when she worked at The Eddy. Amelia offers opportunities for both information sharing and emotional support.
“The Network is a resource for families who are caring for their loved one with a disability. The group was founded last April after families identified a need for community and connection,” Amelia said.
The beginning phases of the group consisted of talking with families and gauging their interest in a group that would connect them to other families living similar experiences.
“We asked questions like, ‘What would they want the group to look like?’ ‘Who would attend?’ How do we do this in the middle of a pandemic?’’ Amelia said. “Many parents felt that they hadn’t had this type of connection since their adult child was in school. Once their child transitioned into adulthood, a lot of those valuable relationships seemed to drift and get lost in life's shuffle.”
The first four sessions were piloted with Riverside families. The group had a steady attendance and a positive impact on families. The parents identified a want to expand the group and invite families from other programs. Sharing experiences seemed to be extremely valuable and with outside perspective, parents felt there was a lot to learn from one another. In November, the group expanded to Pinecrest and New Karner families.
“Once a month the group meets virtually to connect and discuss various topics. Some months we welcome guest speakers and other months we focus on support and building connections,” Amelia said.
The Day Hab Family Connections Group has invited guest speakers from various Wildwood departments to discuss Community and Individualized Supports, Family Support Services, In-Home Behavioral Supports, and the Residential placement process. They have also worked with outside community agencies such as Mental Health Legal Services. In November the group invited an attorney from the regional office to discuss advance directives, end of life decision making, and guardianship.
“During the emotional support sessions, parents check in with each other, reflect on how they are doing as a parent, caregiver, full time employee, and whatever other roles they juggle in day to day life. At the end of these sessions, the group will take time to set an intention of something to do for themselves before the next meeting,” Amelia said.
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This time of year can certainly be so much fun, right? Holidays! Movies! Music! Treats! But the Holidays can sometimes be stressful with changing routines, family dynamics, big emotions, and lately, the continued impacts of COVID-19.
To try to help everyone have the happiest holidays possible, here are three socialization tips tailored to help young adults with I/DD and their parents.
Pick Your Battles.
A common issue between parents and young adults is that the young adults may naturally start wanting to do things their way (e.g. choose to stay home from something. Wear a particular outfit. Request to socialize more with their peers than family). This can create a lot of distress for both parents and young adults if something comes up that everyone doesn’t easily agree on.
Or, perhaps the opposite: some folks find change very challenging, and when issues like COVID-19 adaptation, or scheduling, or routine disruption suddenly come up, distress can happen. I gently suggest both parents and young adults “pick your battles.” Ask yourself: why DO I celebrate at this time of year? What’s really important to me? Am I leaving my young adult room to become a grown up, developing their own holiday customs? Am I being fair to my parents, who are trying hard to balance a lot of things?
I argue, ultimately, this time of year is about coming together in kindness, love and support. Can we all talk together about mutually respectful ways to create our plans?
Be in touch with your feelings, and make room for them
It is absolutely normal for lots of different emotions to come up this time of year, especially considering the last year or two we’ve all had. It can bring up happiness and excitement, but grief is also a common feeling. It can come up related to love ones who’ve passed away, or missing the way things used to be pre-pandemic. It can also come up for parents and young adults, feeling a kind of bitter-sweetness about things being different at the holidays now that kids have grown up.
Grief can be expressed differently in everyone: sadness, tears, anger, aggression, shouting, or clinging even harder to physical routines. Besides grief, we might also feel tired, frustrated, and worried. Don’t be tempted to just “put on a happy face” during all your celebrating by pushing away emotions. That usually just makes them come out another way, like being grumpy or mean to others.
Whatever you are feeling this year, get in touch with it. Perhaps talk about feelings with family. Find ways to include what we’re feeling in healthy ways in holiday activities. Consider activities like looking at old photos and talking about feelings. Write a special holiday feelings journal entry. Find ways to welcome and affirm your feelings, as processing them may help you have more contentment and connection with others.
Take Breaks and honor others if they say they need breaks
This can be such a busy time of year. There is the stimulation of all the decorations, music, and energy of others. Plus the common routine disruption to add parties, and take program breaks. This can put a lot of stress on folks with I/DD, and their parents. Again, know this is normal. Even if Aunt Gertrude is saying you simply must come to her annual party you all never miss, tell Aunt Gertrude she might want to learn what demands like this can do for someone with sensory sensitivities, or social anxiety.
Remember to nourish yourself. There will be more sweets around than usual. Hydrate with water and get in those veggies and proteins. Rest, take breaks, and do what makes these days meaningful in your heart. Aunt Gertrude loves you anyway, I promise. If you need to stay home, tell her, and tell her why. And if she’s a total grump – why do we even worry what she thinks anyway? Stop being a grump, Gertrude! We’re all in this together. I suggest we put the focus on care & love, and show each other the real & beautiful reasons we gather this time of year.