Tag: caregiver support

Being Parents


I am the mother of an 11 year old girl who has a developmental disability. My daughter needs lots of support. At the moment my daughter is stable, healthy and in a good school. Often times I think about her future and about her needs. I know I will be caring for her when she gets older. For me it is important that she receives good care. Also that she can be healthy and happy.


Parents caring for their children with special needs are very important. As parents, we have positive impact in helping our kids remain in their homes. We know what our kids need. We know what they like and what they wish. Our kids keep us positive. They give us energy every day. They make us happy when all is going well. Our kids give us lots of love.

Caring for ourselves

As parents we don’t count with much time. The most important things are our kids and family. Sometimes we forget about our own medical appointments. Going to our doctor may take us longer time. We are sometimes really tired. We need to try to make more time for our own needs. We need to try to go to our doctor’s appointments. Is important that we are well, so our kids are well too.

For more information

Caregivers resources

Learning How to Cope

Kayak on a lakeWhat do caregivers do?

Caregivers are special people. They give so that others can be happy, healthy and have a better quality of life. Caring and giving can fill a person’s soul. It is also very hard work! Those who are paid workers get very little money for their work but still give all they can.

Caring for a loved one may mean there is no pay for work done. They give care 24 hours a day, 7 days a week, 365 days a year with little to no breaks. How can a caregiver practice self-care?

How can they deal with stress?

This blog will give some simple, low-cost ways to cope with stress brought on by daily caregiving. Try to make a list of coping skills so that in times of stress you will know what to do. Make sure your list is easy to access, like on the side of the refrigerator. This is a list of ways to help deal with stress:

  • 5 minute self-guided meditation This is a link to a 5 minute self-guided meditation. Five minutes of meditation daily can help to reduce your stress levels!
  • Deep breathing can be done alone or with the self-guided meditation. Slowly take a deep breath in through your nose and slowly let the breath out throw your mouth.
  • Slowly sipping a cup of water may not seem like much. But it helps slow your heart rate and can help reduce anxiety in the moment.
  • Music and dancing can help you release stress. Music can change your mood and how you feel.
  • If you have time and can afford respite, it should be planned. Even one trip that is scheduled per year can give you hope and something to look forward to.
  • Chew gum. It can lessen anxiety and increase your ability to focus!
  • Exercise! Just 30 minutes a day can improve your health!
  • Schedule your coping skills into your day! Just like you do for the one you care for. It may seem simple, but scheduling self-care will ensure that you get self-care!

For more information, you can also visit:

Autism Caregiver Support

Woman meditationing in a wheat field

Stress? Autism? Balance? Time.

Is it the techniques we choose? Or, is it the time it takes?

Is it possible? As a mom? To have balance? To manage stress?

As a mom to three children under 7, I am not sure. As a mom to a minimally verbal child with autism, I am really not sure. Things can get crazy. It’s difficult to step away from the stress. As caregivers, it is important that we care for ourselves. Easier said than done. When? How?

How can we take care of ourselves?

I think we all know that we have to do this. It’s the “how” that we all wonder about. How, exactly, do I care for a disabled child and take care of myself?
There are many studies that tell us that stress levels are high in moms of kids with autism. Still more tell us that if we manage the stress, we will be better moms. Caring for ourselves will help us care for others better. Okay. The question becomes how?

It’s about time…

A recent study at Vanderbilt University points to two techniques to manage stress. The first is mindfulness training. The second teaches a more cognitive approach. Both are led by peers. All well and good. I would love to try it. But, how are these people finding time? How could I possibly go? Researchers and policy makers are missing the point. We know how to care for ourselves. What we need is skilled, qualified care for our children. We cannot hire the babysitter down the street. The people that we hire require certain skills. Expensive, hard to find skills.

Do Researchers and Policy-Makers get it?

When will researchers and policy makers get it? Is it possible that just simply having time away has more of an effect on stress than the actual study intervention? I think it could. Imagine if an employer tried to work you like this? They can’t. There are Federal and State laws to protect employees. Not family caregivers.

    • 85% of 43 million family caregivers in the U.S. right now don’t receive any respite services.
      • National Alliance for Caregiving (NAC) and AARP Public Policy Institute, Caregiving in the US, 2015.
    • 4/10 adults in the U.S. care for a family member with severe health issues
      • PEW Research Center, June 20, 2013.
    • Care for the caregivers = More successful children. Happy healthy caregivers. Marriages. Siblings. All work to support the affected child. If the family functions well, the affected child will be better supported. A better supported child is more likely to succeed.

What can we do?

Multiple Sclerosis Caregivers Can Make a Difference

MS-caregiverOver the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.

We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.

The simple fact is when invisible symptoms are addressed, it can truly make a difference.


Stepping In

When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.

The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.

Two Way Communication Is Vital

Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.

Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.

Caregivers Taking Care Of Themselves

It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.

Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.

The National Family Caregivers Association and   www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.

Please join us next week as we review some helpful resources for living with MS.

*Names have been changed.