Care To Ask

Lessons I Learned from Being a Caregiver
Cameron Von St. James
When someone you love has a serious illness, such as Alzheimer’s, dementia or cancer, taking on the role of a caregiver is challenging. It most cases, it happens suddenly and unexpectedly, and you find yourself completely unprepared. In my case, I was in one of the best times of my life as I had just spent three of the happiest months with my newborn daughter, Lily, when my wife found out she was seriously ill. She had malignant pleural mesothelioma, a form of rare cancer that is caused by being exposed to asbestos.
I had to swiftly take on the role of main supporter and caregiver to my wife. Something, at the time, I felt I was incompetent to do. Those were some of the most difficult and trying times I’ve ever faced. Although my wife beat the cancer and seven years later, she is still well, it took a lot of effort to get here. We have been through so much that made us stronger, and lessons that taught us to never lose faith, and to keep on going no matter what. I feel this has left me with a lot of experience that would be valuable to other caregivers.
I am able to share this experience and pass on helpful tips to other caregivers and their families by being an advocate for the Mesothelioma Cancer Alliance. There are a few questions that I am asked the most, and I am sharing the answers I give, which are based on the lessons I learned from my own experience and from other caregivers.

1. Take care of your emotional and physical well-being. This is really essential as you need to feel good in order to keep a positive atmosphere around the home. If you fall apart, then that will make the situation much worse, and it will make the person you are caring for feel guilty that they have put you in this situation. They do not need that. So, for their sake and yours, make sure you get enough sleep, good food and exercise. These simple things will prevent ‘caregiver burnout.’
   
2. Prioritize everything you need to do. This is key to being able to get everything done. Make a list of things that are important and prioritize them in order of urgency. Also, make lists of things that are not so important and that perhaps someone else could do. If you also have to take care of children and need to continue working, then taking the time to do this will be a big help to your day-to-day activities.
   
3. Use whatever tools you are comfortable with to help you with prioritizing and organizing everything you need to do. A pad of paper and a pen, laptop, iPad or any other way you may prefer can help you keep track of appointments, medications, and the hundreds of other things you need to see to. Keep all your medical and insurance papers well organized so you can get the information you need quickly.
   
4. Learn all you can about the illness your loved one is fighting. I became an expert on mesothelioma after my wife was diagnosed. The more you know the better you will be able to care for them. You can recognize what they are going through, anticipate how they will feel and understand the side effects they have to the treatment. This will give you confidence, and it will enable you to be a stronger caregiver.
   
5. Do not hesitate to ask for assistance when you need it. It is easy to get wrapped up with your own problems, and feel as if it is all up to you. However, try not to let this happen. Stay closely connected with family and friends, and any other social activities you normally participate in as this will keep you in touch with other people. It is normal to have moments when you feel you can’t handle things anymore, but what you need to do is ask for help. Wouldn’t you help someone else in your situation? Remember that everyone around you feels the same way, and they are willing to help; you just need to let them know. Even if it is just a small errand, it will be one less thing that you have to remember.
   

Being a caregiver is a great challenge, but it can also be one of the most rewarding jobs a person can have. There is no greater act of love or devotion than being a caregiver to a sick loved one. I hope that these tips will help you be the best caregiver you can be.

Author
 
Mesothelioma

Care To Ask

This month’s questions comes from someone who is wondering how social day care and adult day health programs differ.

Remember if you have caregiving questions email them to CareToAskCMAA@gmail.com.

Q. I am currently taking care of my uncle and I think he would benefit from some sort of a day program to socialize and be with others during the day while I am at work. Currently he is at the house all day by himself and he complains he is bored. I am confused on if we should look into social day care programs or adult day health programs. What is the difference between these two programs?

A. Social day care and adult day health programs are extremely valuable and important programs. These programs allow older adults to continue to reside in a community setting while allowing the informal caregiver to have a break during the day. There are differences between the care provided at social day care and adult day health programs. The level of care the older adult needs will determine which program is the best for them.

Both programs are offered during the day Monday-Friday, with some now offering extended evening and/or weekend hours. Most programs prefer that a person attend at least 2 days per week so the participant and staff get to know each other. Both programs offer socialization activities as well as nutritious meals and snacks. Transportation may be provided to and from the center.

Social Day programs, which may also be called Adult Day Care, focus on the socialization of the older adult allowing them to maintain structure and focus in their day. This type of program is best suited for the older adult who is still independent and does not require hands on assistance with any of their activities of daily living (ADLs), such as bathing, dressing, toileting and transferring, but require more supervision and structure than is provided at the local senior center. Social day care is not appropriate for those who need medication administration, wander or require constant redirection during the day. It is appropriate for the person who can take their own medications after a reminder is given or needs occasional redirection or cueing during the day.

If your uncle needs more care that what can be offered at a social day care program you should look into an adult day health program. These programs have registered nurses (RNs), certified nursing assistants (CNAs) and licensed practical nurses (LPNs) on site and can provide hands on assistance to participants. They can also bring other health care professionals, including podiatrists, eye doctors, dentists, physical, occupational and speech therapists onsite. Adult day health programs are best suited for the older adult who requires medication administration and/or assistance with any ADLs such as feeding, dressing, bathing, toileting or transfers. These programs are secure so they provide a safe environment for someone with dementia. They are not appropriate for someone who needs constant one on one attention or is combative.

Social day and adult day health programs are great programs for older adults and their caregivers. Social day care programs are less expensive than adult day health programs and have a lower staffing to participant ratio. It is important to make sure that the program, whether a social day program or adult day health program, is a good match for the older adult. Programs may have different populations that they focus on such as younger individuals with mental health or developmental disabilities. It is a good idea to visit the center and make sure it is a good match for the older adult. Many centers offer a free one day trial visit so the family and older adult can decide if a particular center will be a good match. Any center you and your uncle are interested in will conduct an assessment to be he is an appropriate fit for their site.

A very big thank you to Lisa Pontbriand, from St Francis Adult Day Health, for helping to answer this month’s question. For more information about the Adult Day health program at St Francis please visit www.saintfrancisrehab.com.

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