Roll Mobility Blog
Finding Joy and Support as a Caregiver
Caring for a spouse is easier with support.
Thanks to Terri Corcoran, a full-time caregiver and public relations chair for Well Spouse™ Association, for these tips on finding joy and support in the stresses of caring for a loved one.
How do you find the support that you need as a caregiver?
I find the support I need primarily from God Whom I have learned to depend on, by virtue of being in this very difficult caregiving situation. I also get support from the Well Spouse Assn., which provides emotional support and resources for spousal caregivers; I am very active in this wonderful, unique organization.
What brings you joy in caregiving?
What brings me joy is any step my ill husband can take or any word he can say (he is very disabled physically and cognitively by FXTAS, a genetic neurodegenerative condition which he has had for practically our whole 12 year marriage thus far – still going).
I am also very happy that I have cared for him at home, where he is happy and comfortable and very peaceful. I have kept him in as good general health as possible. As I look back over the very difficult years, I feel great that I have been able to give him so much love and care – and he still loves me too!
What are the biggest obstacles that you face in caring for your husband?
The biggest obstacles are of course my husband’s extreme disabilities – he needs help with all activities of daily living. I have home health aides 10-11 hours each day to help get him around, feed him, shower him, and stay with him when I go out.
Having to depend on aides who need lots of training and who come in all different levels of competence is probably the most difficult part of my job.
What is the most helpful caregiving tip that you could share with another caregiver?
- Find support groups of others going through what you are going through.
- Pace yourself. Full-time caregiving is like running a marathon; you have to find your comfort level of how much you can handle; never forget yourself, and listen to your body; find time EVERY day to do things you enjoy, even if it’s as simple as sitting quietly and reading.
- Exercise – essential for your own health as a caregiver and a wonderful way to ease stress.
Caregiver Advice from Erin Gilmer
Erin Gilmer
Erin Gilmer has experienced caregiving in several roles: to her mother who is disabled, to cancer patients for a volunteer organization, and as a patient advocate. She offers her advice for coping with the stresses of caregiving below:
How do you find the support that you need as a caregiver?
I find support for my caregiving by reaching out to others, whether it’s the nurses at the oncology center, the volunteer organization, colleagues in patient advocacy, or friends. I find that it is helpful to have a wide base of support. If you are leaning on only one person or organization for assistance, that person or organization may run out of energy to help.
What brings you joy in caregiving?
What brings me joy in caregiving is seeing the hope of those who are cared for.
What are the biggest obstacles that you face in caring for your loved one?
The biggest obstacles I find are time and energy. I wish I had all the time in the world to sit next to my mother when she’s in the hospital. I wish I could visit at the oncology center every day. But I have to return to my responsibilities. As for energy, balancing my life and caregiving takes quite a lot of effort. More so, when advocating for someone – whether that means coordinating care or talking to doctors, or finding treatments, or accessing care. That is really the hardest part for me. I love my mother, the friends I’ve met through volunteering, and the people I help as an advocate. But fighting for them can be difficult in our health care system.
What is the most helpful caregiving tip that you could share with another caregiver?
Take care of yourself first. Sleep when the other person sleeps. Eat regularly. Exercise regularly. Find a wide base of support.
You can find out more about Erin at www.gilmerhealthlaw.com or on her blog at www.healthasahumanright.wordpress.com.
Caregiver Advice from Rebecca Brown
Take time for yourself, as a caregiver.
Synergy HomeCare advocates respite and support for family caregivers. One of their staff members, Rebecca Brown, is a long-time family caregiver for her mother-in-law. She offers her advice as a caregiver below.
How do you find the support that you need as a caregiver?
Most of the time support information is found through searching different websites or talking with friends. Doctors or medical professionals can also be a resource along with government agencies. Most of the time, support is found with other family members and friends. Some churches are also a great support resource.
What brings you joy in caregiving?
My experience as a caregiver has brought me joy in seeing the person that I am caring for smile or know that I bring comfort and compassion to that person. Caring for someone in their most vulnerable time always brings moments of joy.
What are the biggest obstacles that you face in caring for your loved one?
The lack of support from government agencies and the assisted living facilities that we have interacted with over the years seems to be our biggest hurdle. We found care in group homes to be questionable at times and have witnessed neglect on the part of staff and management. The agencies that are in place to assist people with these challenges are under staffed and there seems to be a lack of concern or compassion. The paperwork is never-ending and trying to navigate through the system is exhausting.
What is the most helpful caregiving tip that you could share with another caregiver?
Take care of yourself first! You are no assistance to anyone if you are not in a healthy place yourself, be it mental, physical, or spiritual. Taking time to enjoy yourself away from your caregiving duties is crucial. Even short periods of time can be beneficial, such as taking a walk, having coffee with a friend, or reading a book at the library.
Caregiver Advice from Susan McHugh
This month’s caregiver story features Susan McHugh, a full-time caregiver for her parents. Sheila is the co-owner of Pink Ribbon Associates, a company that specializes in unique inspirational and motivational pink ribbon gifts for cancer patients and their families and/or caregivers.
Susan McHugh
“In 2007, my mother was diagnosed with mesothelioma. I am an only child and live in South Jersey. My parents lived on Long Island. I would work all week and then drive to their house on Friday nights. I finally quit my job and basically moved into their home.”
How do you find the support that you need as a caregiver?
“It was difficult for me to find support, as I was caregiving full-time, as well as attempting to take care of my father who was bipolar. When I had hospice come in, I asked for a social worker and she was wonderful. She came a couple of days a week and became my rock. I cannot say enough good things about hospice.”
What brings you joy in caregiving?
“It is obviously difficult to find joy in this situation, except that I got to spend quality time with my mother for two months. She worked my entire life and I was raised by a nanny, so it was wonderful to spend that time with her before she passed. It was also good to see some of the friends I had grown up with.”
What are the biggest obstacles that you face in caring for your loved one?
“The biggest obstacle for me was my father. He was angry and would have terrible outbursts. He would scare both of us. My husband would come to the house on weekends, and he was the only one who could control him.”
What is the most helpful caregiving tip that you could share with another caregiver?
“The biggest tips I can give someone is to make sure you (1) have a good, solid support system; (2) take breaks and get outside when you can; (3) seek out professional help if necessary.”
Caregiver Stories: Jessica Mast
Jessica Mast with her late husband Jimmy
This month’s caregiver story comes from Jessica Mast, a caregiver to her late husband, Jimmy, from 2005-2006 while he suffered from liver failure and a failed immune system. He was in and out of the hospital for seven months before passing away on his 28th birthday on June 17, 2006. Huge thanks to Jessica for her courage in sharing her story on this blog and through her speaking engagements. Jessica is also the author of The Call of a Caregiver.
1) How do you find the support that you need as a caregiver?
“I found my greatest support while caring for my late husband from my faith in God and also from talking to or reading about others who had been in a similar situation. My biggest support also came from our family who was there for us all the time as well as the caring medical staff at the hospitals.”
2) What brings you joy in caregiving?
“My greatest joy came from being able to be there and comfort Jimmy. It was joyful for me to take care of him physically, emotionally and spiritually. To see that I could meet his needs brought me joy. Also, to see how our experiences were used to comfort others brought both of us tremendous joy.”
3) What are the biggest obstacles that you face in caring for your loved one?
“My biggest obstacle was to keep from experiencing burn out. So many times I felt like I couldn’t keep going – I was physically and emotionally exhausted. And the discouragement after multiple hospital stays was hard to overcome. Each time I felt like I couldn’t keep going, I found my strength in prayer. God would give me the strength to do what I needed to everyday.”
4) What is the most helpful caregiving tip that you could share with another caregiver?
“The most helpful caregiving tip I could give to another caregiver would be first, for them to know that they’re not alone. Being a caregiver can feel lonely, but just to know that there are others who have been there who understand what they are going through. Also, for them to rely on the Lord for their strength. Another tip I would share would be to focus on what they have to be thankful for (writing a list really helps). This was probably one of the most helpful things to me.”
Caregiver Stories: Caroline McGraw
Caroline McGraw, caregiver and writer
This month’s caregiver story comes from Caroline McGraw, who serves as the Program Director for a caregiving nonprofit in the Washington DC area. Caroline writes about her experiences as a caregiver on her website, A Wish Come Clear.
Roll Mobility: How do you find the support that you need as a caregiver?
Caroline: As a long-term caregiver, I find the support that I need as a caregiver via taking time for myself: writing, reaching out and resting. Asking for help is not optional, but essential.
Roll Mobility: How do you help your loved one stay as mobile and independent as possible?
Caroline: I’ve help loved ones stay as mobile and independent as possible by ensuring that their medical equipment is assessed, inspected and serviced on a regular basis; that they see specialists and primary care physicians as needed; and that they have healthy, home-cooked meals and ample opportunities for rest, activity and fun.
Roll Mobility: What steps have you taken to keep your loved one safe?
Caroline: I’ve kept my loved ones safe by anticipating needs and potential obstacles/dangers, and by ensuring that physical, behavioral and medical protocols are followed correctly.
Roll Mobility: What is the most helpful caregiving tip that you could share with another caregiver?
Caroline: The most helpful caregiving tip that I could share with another caregiver: you don’t have to be a superhero. You get to be a human being, and being human is about reciprocity: loving and being loved, needing help and giving help.
About Caroline
Caroline McGraw is a Program Director for a caregiving nonprofit (L’Arche GWDC) and a writer with a focus on serving caregivers of people with intellectual disabilities.
You can visit her at A Wish Come Clear, where you can access her free ebook, “Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive).” It’s designed to be a support resource for caregivers, helping them to balance the responsibilities of caregiving with caring for themselves. The book is available via subscription to Caroline’s email list.
Caregiver Stories: Donna Lubrano
Thanks to Donna for her caregiver advice!
This month’s caregiver features Donna Lubrano, who was a long-term caregiver for her mother Rose.
Donna described her experience to us as a difficult but fulfilling journey: “I cared for an elderly parent with advanced Parkinson’s disease for 6 years until she passed away at the age of 92. I was able to keep her in her own home until the day she passed away.
It was quite a journey, and on the way, I met some incredible caregivers, support, and professionals who kept me sane and bolstered my courage as her disease became progressively worse. It is the single greatest thing I have ever done for another person: to help them live out their remaining years with as much independence as possible, surrounded by love and friends and—most important—dignity.”
Roll Mobility: How do you find the support that you need as a caregiver?
Donna: Because I was working full time, single, and managing my life and hers as well, I began getting therapy. It was a safe place to discuss my fears, sadness, frustration, isolation and loneliness. Many of my friends were starting to care for elderly parents as well, so we shared our emotions and gave each other support. Sad to say, I didn’t have the time for support groups, but there were opportunities in the area.
Roll Mobility: How do you help your loved one stay as mobile and independent as possible?
Donna: My mom had exercises for her body and mind that we did with her every day. We used simple exercises that the physical therapist gave us and made time during the day to do them—while watching TV or right after her ADL’s. When she became wheelchair-bound, we adapted them to seated exercises. For her mind, we played cards. She loved to read the newspaper. We made sure she had a subscription to the daily paper and got her subscriptions to great magazines. She loved her garden, so in the winter we would plant the flower garden and then in the spring and summer get her involved in the care and maintenance of the yard.
I left as much decision-making power to her as possible—even when she became wheelchair-bound, she ran her household every day while I stayed in the background making sure everything went smoothly. She was able to make her own medical decisions about the care and treatment she took for her disease. What new medications we tried, what new doctors we saw—if she didn’t like them or didn’t feel comfortable, she was the boss. We gave her as much control as she was able to handle given her health condition, and it gave her dignity and confidence that this was her life to live as she decided.
Roll Mobility: What steps have you taken to keep your loved one safe?
Donna: She had round-the-clock care and someone to watch that she did not fall or get hurt. She wasn’t happy about it at first, but her other caregiver became like her daughter at the end.
Roll Mobility: What is the most helpful caregiving tip that you could share with another
caregiver?
Donna: Caring for someone and taking responsibility for another person’s life is a huge responsibility—something some will never have the courage to take on or selflessness to embrace. Don’t forget your own physical and mental health. Whoever you are caring for is counting on you.
Caregiver Stories: Terri Corcoran
Thanks to Terri Corcoran for her caregiver advice!
As a full-time caregiver for her husband who suffers from a degenerative brain illness, Terri Corcoran knows the stress and isolation that can become overwhelming to a caregiver. In her search to find support, Terri came to realize the immeasurable benefits of sharing in a community of caregivers who know exactly what you are experiencing. She’s also come to learn the joy of using her experience to help others through her work on the Board of Directors at Well Spouse™ Association. Below, Terri shares some of the insights she has gained during her time as a caregiver.
Roll Mobility (RM): How do you find the support that you need as a caregiver?
Terri: My support is from my church and the Well Spouse Assn., for spousal caregivers.
RM: How do you help your husband stay as mobile and independent as possible?
Terri: I have home health aides to help me help my ill spouse do the little walking that he can. I have worked very hard at this for many years. I have kept him healthy aside from his degenerative brain illness, which has caused severe physical and cognitive disabilities. I hired a private therapist to work with him every 3 weeks.
RM: What steps have you taken to keep your husband safe?
Terri: He is never left alone in the house. At this point he cannot get up by himself, so he does not fall like he used to.
RM: What is the most helpful caregiving tip that you could share with another
caregiver?
Terri: Find a support group with other caregivers who are walking your difficult journey. Caregiving is extremely isolating, and you need to be with people who really understand what you are going through.
Our Badge
