I “met” Mary Nix when she left comments here at TLeC and I visited her blog, EldercareABCBlog.com. In one of her comments she explained she is a caregiver not only for her aging parents, but also for her younger sister. Since that sounded unusual, I asked if I could interview her about her family’s story. I’m very pleased to bring you this informative and touching caregiver interview.
How and when did you become a caregiver? Please tell us about your care recipient(s).
When my younger sister was six years old, she was diagnosed with Cornelia DeLange Syndrome at the Cleveland Clinic. To this day I recall my parents’ conversation concerning her diagnosis and the Cleveland Clinic Doctors’ suggestion to put her in an institution. They wanted to do what was right by all of their children and their final decision was to keep her with us at home. At the time I was eleven and I recall being greatly relieved by their choice. Certainly, that isn’t to judge the fact that other families do choose that option, but for me, I just knew I didn’t want my little sister to leave our home. Growing up with a developmentally delayed sibling definitely helped prepare me to become a caregiver in many ways. You are naturally protective, but you also learn the necessary advocacy skills that protecting the vulnerable brings.
Later when my future husband brought up marriage, we also discussed that someday my life would involve caring for my sister, so I guess caregiving has always been in the back of my mind. For many years we searched for a duplex that would meet our needs as my parents and sister grew older and would need more assistance. Never finding a neighborhood we loved as much as my parents’, eleven years ago, when they were 71 and 78, we added an addition that changed my parents‘ home into a duplex. Shortly after that, Mom was diagnosed with Colon Cancer and my caregiving duties began when she returned from the hospital after a successful surgery.
Linda’s response: Your childhood experiences certainly made you aware of caregiving at a young age, and prepared you for elder caregiving later in life. Those are important insights that many adult children don’t have as they start their caregiving journey. The description of your parents’ decision about keeping your sister at home with the family reminds me again that placement outside the home is never easy, no matter the age or which family member it’s being considered for – child, spouse, sibling or parent.
What do your caregiving responsibilities consist of on a daily, weekly or monthly basis?
Daily I cook dinner for my folks and run errands for them. On any given day I may accompany one of them to a healthcare appointment to be an extra set of ears as they don’t hear as well as they used to. I also help them track their medications, refills, socialize with them, track doctors appointments and necessary procedures. If they get ill, my duty lists grows.
Linda’s response: Being that extra set of ears is also part of being your Golden Oldies advocate for health care.
A couple of times a week I spend time with my younger sister going shopping, looking things up on the computer or just hanging out. It is a nice time for both of us.
When she was tested at the Clinic, it was explained that the part of her brain that comprehends things was fully developed, but one of the areas there was a delay in was communication and the ability to communicate. I can only imagine how hard it has been on her for part of her brain to truly understand her situation, but the other to not be able to explain it all. When she was very young we all took sign language, which helped her a great deal.
As an adult, her ability to express herself has improved, she has a great sense of humor and she is really a hoot to spend time with. One thing I’ve seen over the years is that due to a lack of understanding, many people assume a lot of things about the handicapped. This includes the field of medicine. My Mom and I are involved in a group that is headed up by our family Dr. that will be creating educational videos for medical school students and other doctors on how to treat the developmentally delayed population. It is a very exciting project to be a part of and I am thankful that Mom’s lifelong activism continues.
Linda’s response: In two paragraphs you have opened up an entire world of caregiving I’ve had no exposure to. It adds another perspective for us who care only for Golden Oldies – and I suspect it is a caregiving experience with more similarities than differences. I think the medical profession needs to be educated more on how to treat the senior population, and their caregivers, as well.
If you presently work (full or part time), how do you manage the time commitment involved in caregiving?
I work for EldercareABCblog.com, Home Education Magazine and run a web business with my husband. All of these entail work at home, so I am extremely blessed to be able to adjust my schedule when needed, but I do keep a huge calendar on my wall to coordinate all of our endeavors. I get up early and go to bed late!
What are some ways your life has changed since you became a caregiver?
I had always considered myself to be organized, but as my caregiving responsibilities have grown I’ve learned to not only organize, but also to prioritize! I have also learned to let go of the fantasy of a perfectly clean house.
What is the most challenging aspect of caregiving for you?
I have had to learn to relax no matter what circumstances we are dealing with. I’ve never had an affinity for nursing and medical emergencies always caused me great stress when they came up. As an adult, I took CPR and Red Cross classes to try and overcome my uneasiness, but it wasn’t until I had to deal with repeated situations that I realized I had better learn to go with the flow. We’ve had times of quiet when all is well and other times where both my parents were hospitalized. We also have the situation of my handicapped sister who needs care in the midst of such situations, so it was either sink or swim and I chose to swim. As a caregiver I had to learn when to say no and to take care of myself so I could continue to offer care.
What is the most rewarding or enjoyable part of caregiving for you?
My parents and sister are kind, passionate and fun individuals to spend time with, but I think the most rewarding part of our journey has been the daily interaction my boys enjoyed growing up with that unconditional love and input from them.
Linda’s response: I love the multigenerational interactions your family situation created. There is a special bond between grandparents and grandchildren that is unique and precious. Also, Mary, you are modeling for your sons how to be an extraordinary caregiver!
What do you do to take care of yourself to prevent caregiver burnout?
I’ve certainly experienced burn-out, so I’ve learned the hard way that if I don’t prevent it, I’m only hurting myself and my family. I’ve learned to advocate for myself, to take care of my health, exercise and to make time for my interests and hobbies. I learned this after the time both parents were hospitalized and I felt like I was at the end of my rope. It’s a real balance, but I sought and found support and learned more about resources that were available to us.
Linda’s response: It’s too bad you had to reach that low point. Can you elaborate on the support and/or resources you found when you reached burnout? Not everyone may have the same resources available, but perhaps it will spark ideas for support they haven’t thought of yet.
My husband and kids knew I was reaching a low point, so they kept on me. I did look into going to a local support group, but I found that every time there was a meeting we either were in the midst of a crisis or had an appointment that could not be changed. I found a great deal of moral support from visiting different online caregiver groups and by talking to friends who were in similar situations.
Our family doctor at that time was proactive in my care as well. He helped me to learn to accept those things I could not change and to seek out and find the resources I needed to change those that I could. He and my husband both encouraged me to talk to my parents about my limitations. This was difficult for me, as I did not want them to feel that they were a burden in any way.
I finally did approach my Mom and as often has been the case in my life, she was my biggest advocate. I told her that as often as we joked about us switching roles and me mothering them, I didn’t want that switch. I loved providing care, help and nurturing, but I still wanted and needed them as my parents. Maybe not in the role they had always played, but their wisdom and guidance were still very much needed. They were relieved that I had brought my being burnt out up, as they had been seeing my stress and that caused them to feel like a burden, even though it was not my intent. By discussing our situation, it freed us all up to be more frank, to set boundaries and to know when we needed outside resources and when we did not.
Linda’s response: I suspect those frank discussions with your Mom (and Dad) were difficult to have, yet so important and powerful in their outcome, both for your well-being and theirs. Just reading about it, imagining the conversations, brought tears to my eyes, Mary.
There were times that I did not understand some of my sister’s occasional issues, which added to my burn-out, so I contacted a group called Welcome House that my Mom helped to create in the 70’s. Welcome House provides group homes for handicapped adults and they offer training for their caregivers. They generously allowed me to sit in on some of those classes and I learned some great caregiving and coping skills from them that also eased my burn out.
Linda’s response: Wow! How ironic it is that your mother helped to create this group, not realizing that her other daughter would be a recipient of her benevolent efforts so many years later.
What, if anything, do you use for inspiration or motivation during the more difficult times?
I try and count my blessings and remind myself that I can’t control everything. I was shocked into reality in June of 2004 when my 52-year young husband suffered a massive heart attack. I can remember almost every moment of that night, the ambulance ride, my children’s faces and the E.R. doctor who told me my husband’s attack was called a widow maker and most individuals don’t make it through. We were prepared for our lives to change drastically, but we were blessed to have some of the best surgeons in the state and they just happened to be finishing up another surgery at midnight that evening and saved my husband’s life. That night profoundly changed me. It was no longer my parents who were immortal, but I saw what ‘could’ have happened to my husband and I saw that the little irritating issues were no longer important.
Linda’s response: I am so sorry your husband and family had to deal with this scary health crisis and glad it had such a happy ending! Things like this do put things in perspective, that’s for sure. May his good health continue for many years to come!
What is the best caregiving advice you’ve ever received? Given?
Take care of yourself so that you can care for others.
Can you talk about what types of caregiving living choices exist where you live, which one your loved one(s) chose and why? For example, in California, there are a range of assisted living arrangements that Golden Oldies may select from if they do not move in with their family. They range from independent living, to some assistance, to board & care homes, dementia care, and nursing homes.
There are independent living communities here that offer full independence, to some assistance and are usually attached to a full-fledged nursing home. They seem like a nice choice as individuals can move from one level to the next within the community. I haven’t heard of any board and care homes here, but we do have a nursing home a couple of blocks from here that is a beautiful facility. One half is the nursing home and the other is the dementia facility. We chose to build our duplex to help my folks live here as long as possible and to be here to help care for my developmentally delayed sister.
The group I spoke of above, Welcome House recently built a new home, the Michael T. George Center that is designed to serve the aging developmentally delayed population. We were there for the groundbreaking and visited its grand opening and I wish EVERY home for the elderly could be built this way. It is so homelike that it seems more like a resort than a nursing home.
Linda’s response: I must admit, being focused on caring for aging parents and relatives, I never thought about the resources our country, and the world, must create for the aging developmentally delayed population as well. Thanks for raising our awareness about this very critical arena!
Do you have any other tips or resources you would like to share with the TLeC community?
Just as our children are not born with an accompanying guidebook, neither are our aging parents. When I was a new Mom I found great support within the La Leche League Community. I always suggest that caregivers find those in a similar situation near them or online to get the support and ideas needed to help them along the way. Whether caring at home or in assisted living – these issues take time during an already full time in a caregiver’s life. With a little planning, community and tips and tricks from others we are able to move forward successfully caring for our mature family members.
Thank you for being so open and honest about your life from childhood to the present day. I’m certain your experiences and wisdom will help other family caregivers in many, many ways!
Thank you for inviting me. I have done many interviews, but I have never been interviewed before!
Although my boys are both in college and no longer homeschooling, I continue to do a bit of writing for Home Education Magazine.
The majority of my time is spent working with EldercareABC, Inc. It is a wonderful group that has been created by Steve and Sandy Joyce. Steve and Sandy helped care for Steve’s folks in Ireland for ten years and Sandy’s Mom before she passed away. Although we have never met in person, they offer a great deal of support to me as well. Their site truly is created by caregivers for caregivers.
Please write your questions and/or comments for Mary Nix in the Comment section below.
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