Continuing on with the theme of featured caregivers, I would like to move onto Spousal Caregivers. Spousal Caregivers are a unique group because the bond that a couple shares between one another is much different than the reliance that is held between other caregiving relationships. Andrea Clay, a spousal caregiver for her husband and a caregiver for her mother, gave me her input on being a caregiver. She is also the National Partnership and Strategy Director for the Colon Cancer Alliance, an important organization spreading awareness for Colon Cancer, supporting patients and families’, and educating and advocating for research. Fueled by her passion for helping other families that are affected by colon and rectal cancer, Andrea is an inspiration for other caregivers.
What got you involved with your Health Activism? Tell us your Health Activist story.
In 2004, my husband was diagnosed with stage III rectal cancer. I have always been the kind of person who volunteers to help anyone in need but it was still a shock to find out my very healthy 43 year old husband was seriously ill and needed extensive treatment. In a rather ironic twist, his father was diagnosed with colon cancer during the same week. Talk about a tough week! Once we received the diagnosis, I was determined to put together the best team of experts to treat my husband. I called a friend who happened to be an oncology nurse and asked for recommendations for all of the specialists we needed. I wanted the best doctor with the best bedside manner. My husband was more interested in the best doctor but came to appreciate bedside manner when he had to see doctors weekly for months on end. After a grueling 18 months of chemotherapy, radiation and surgeries, my husband was declared cancer free.
Since then, our family has faced other health issues such as heart conditions including a serious heart issue with our 14 year old, multiple other cancer diagnoses for my father in law, kidney failure and eventual transplant for my brother and more ordinary issues such as braces for teenagers. My mother now lives with us, so I am officially a member of the sandwich generation–kids still at home and a live-in parent. She is still very independent but I have been her health advocate during a hospitalization and follow up care. On the bright side, I work for a leading patient advocacy organization, so I can look at all of my cancer experience and be proud that I can use my knowledge and passion to help other families facing colon and rectal cancer.
This month we’re focusing on advocating for another – what are some of the main challenges members of your caregiving community face?
Caregivers typically put someone else’s needs ahead of their own. While this is needed on a temporary basis, many caregivers fall into this trap and stay there for a number of years. If we do not take care of ourselves, we cannot take care of anyone else. Caregivers are also largely ignored by the medical community. A team of people surround the patient with support and inquire about their physical, mental and emotional health (hopefully) while the caregiver sits in the corner all alone (literally). Sometimes caregivers perform the role of amateur researcher and find themselves overwhelmed with information they have gathered. Many caregivers don’t want to scare or burden the patient with this information and need to make sure they have a close friend who can just listen to their fears and concerns without freaking out or trying to fix everything. While there are many other challenges facing caregivers, financial strain is felt by many caregivers. You hate to sound petty when someone is seriously ill but worrying about how to stay afloat can be the most stressful situation caregivers face. At our house, we used to say “cancer is enough” and when you add the pressures of everyday living to the mix, it can all feel overwhelming.
What are some tips you have for overcoming these challenges?
Ask for help early and often. People will offer to help–your job is to find a way to take advantage of it. We had folks lavish our kids with fun activities during my husband’s illness. The summer even though he was starting treatment it is still their favorite summer full of horseback riding, sleepovers, ice cream cones, etc. We had folks help us financially without asking. Christmas presents were purchased for the kids in order to ensure they had a wonderful holiday. Due to some food issues, instead of having folks deliver meals, we received grocery store gift cards. That was more helpful for our family since I viewed cooking every night as a hobby and it kept some normalcy in a chaotic time. I wish I had been smart enough to get help with the laundry. Keeping clean clothes in everyone’s dresser was hard during full days of doctor’s appointments.
Create a support system that works for you. I asked my tennis partners to limit their cancer questions to the first 5 minutes of our games so I could count on a cancer-free hour or two on the court. When I needed to communicate urgent information to our network of friends, I would call a friend who sent the email to our group. This helped eliminate repeating an update 20-30 times via phone. I would not return every call that we received. While everyone was well-meaning, not everyone needed to hear the information directly from me all the time. Finding a group of other caregivers is helpful since you can express your doubts and fears with a group who truly understands the challenges faced by caregivers. Most caregivers do not want to feel like they are burdening the patient and will not communicate potentially negative information.
Find an outlet–exercise, writing, painting, etc. to help you deal with your stress. I was not a role model on this specific point but had I taken a brisk walk every day, I would have been a better caregiver. I wrote on occasion but found it too hard to sustain and eventually gave up. I did try to have a night out with my girlfriends every month or so and we would do something fun–a movie (as long as no character was sick), dinner at an old favorite or shopping.
Trust your gut instincts. If you think something is wrong, say something. I might not have been well liked by the nursing staff at our hospital but I was well respected because I spoke up when something was wrong and worked with the team to solve the problem. We know our loved one best and if we think something is wrong, we are usually right. Everyone involved with treating the patient has good intentions but sometimes things get past them and caregivers need to speak up.
Let’s get a bit more specific with spousal caregiving. What are tips you recommend to other spousal caregivers? What are personal struggles that you had to overcome as a spousal caregiver?
Spousal caregivers face the unique challenge of keeping the marital relationship healthy while taking on the role of caregiver. When my husband was sick, he was concerned that we would relate as caregiver and patient rather than wife and husband. Sometimes a caregiver has to deliver bad news that a spouse would rather not deliver. This has to be considered as couples face a health challenge together. Other times, a patient needs tough love to be motivated to tackle an issue head on and other times a patient needs the caregiver to back off and give some space. All of these situations require tact and patience especially when the caregiver is also the spouse or partner of the patient. A few times, it might be necessary to state “this is your caregiver talking, not your spouse” in order to avoid causing harm to the marital relationship. Even in the midst of treatment, it is important for spouses to relate that way and while an official date night might be out of reach, spending a few minutes talking about regular life devoid of all health issues is important. Life marches on even with a health concern, so we all still have to participate in daily life to the extent we are able.
Balancing home life and caregiving can be difficult for anyone. The gutters still need to be cleaned and the car still needs an oil change every so often. If the patient was in charge of certain domestic responsibilities, couples need to have an honest discussion of how to get those chores done. The solution in some cases is to hire help but finances are not going to allow that in all instances. This is another opportunity to ask for the help you actually need. If someone offers to drive your spouse to a medical appointment but you really need someone to mow the grass, it might be time to ask if they can do something else. Caregivers need to assess how many things they can do and do them well. I decided that I could not be a the best mom and wife at the same time any time my husband was in the hospital. The kids and I made a list of who they would like to spend the night(s) with and I called friends until someone could take them. This allowed the kids to feel like they had some control and it allowed me to completely focus on the hospital stay.
Our family told every adult in our children’s lives (teachers, coaches, close friends, etc.) what was going on so that they could help keep an eye on our children. Caregivers have many demands on their time and attention and having other adults be on the lookout for any changes with the children can be helpful. This also led to people offering to help drive our children to various activities. My husband was not able to attend a school play, so a parent videotaped it and gave us a DVD to watch at home. This allowed my husband to enjoy it with our kids after the fact. A fun family memory was made and the kids don’t really remember that their dad was too sick to attend–they remember watching the play with him and laughing with him.
What else would you like members of our community to know about Colon Cancer Alliance and with caregiving?
The Colon Cancer Alliance (CCA) has a peer-to-peer support program called the Buddy Program which matches both patient/survivors and caregivers with someone in a similar situation. Offering that support to caregivers is somewhat rare but the CCA understands that a cancer diagnosis impacts the entire community and supporting the caregiver is just as important as supporting the patient. The CCA also has an online community devoted to anyone impacted by the disease. Caregivers take advantage of this to post questions and receive support online. Again, caregivers need a safe place to communicate their concerns and having an online community is another way to support them.
Any upcoming events/projects/plans that you’re excited about?
The CCA has a 5k series, the Undy 5000, which takes place around the country. Just over half of the participants are friends or family members of someone diagnosed with colon or rectal cancer. This event is a great way for caregivers to come out and meet others in their community. Public colon cancer events are hard to come by and the Undy is a fun day with a serious message. The Blue Note Fund is the CCA’s patient assistance program that gives out one time gifts of $300 to be used on ordinary household expenses
that can pile up during treatment.
For more information about the CCA, check out their website. Also, if you are interested in running, walking or watching an Undy 500, check out their Undy 500 website and see if the CCA is hosting a run near you! It is a great event that has in the past year raised more than half a million dollars!