I can feel the exhaustion and stress flowing through my veins and the fear sink into each and every bone. My muscles ache from the exertion of moving my sweet terminally ill daughter from one position to the next, from room to room, and with providing her with my absolute best level of caregiving I can. Her rare disease, Ataxia-Telangiectasia, has taken a large toll on her body for the past nine years. Now, she is in the last chapter of her life with hospice care. As we face down death and look bereavement in the eye, we know that we did everything we could to bring her joy and happiness. With that said, parents of chronically ill and terminally ill children often have a complicated marriage and more stressful than normal communication in marriage.
Communication in Marriage
It’s really no surprise that communication in a marriage is even more complicated when you have to talk about stressful and anxiety inducing things such as surgeries, hospitalizations, treatments, medical bills, and end of life care for your child or children. So how does having a child with a life threatening, terminal, or chronic illness change a marriage?
Personally, I have found that it has strengthened our communication, trust in each other, and closeness. With that said, we have had to face down some serious situations in our marriage. We battled the emotional and heart breaking journey through infertility. Together, we worked our way through the complicated maze that is adoption. Our marriage has withstood the devastation of losing my dad far too soon. The big challenges and life stress have a way of exposing every crack in your marital foundation.
Believing that your spouse or child’s parents knows what you are thinking. Assuming they know and agree without discussion and being flexible is a surefire way of causing even more stress in your marriage.
How Chronically Ill children change the shape of family dynamics
“I’m sorry Sweetie, but I really have to push this medicine through your sister’s g-tube, and then I need to prep her for her infusion. Then, I promise you we will work on your pumpkin project, ok?”
It’s an unfortunate situation, but when you have a chronically ill or terminally ill child, there are things you absolutely have to do first. On the other hand, it’s also imperative that each child be shown just how loved and important they are to you. The stress shines through when you feel like you are failing on every front. I always remind myself that waging wars on multiple lines is a bad battle plan. So, I try to rally my troops and find a way to let them know what needs to be done, and ways we can structure our days so that each of them gets enough support and affection.
My number one goal is to give one on one time and my undivided attention with each child. I do my best to set aside the fears, overwhelming to do list, and the stress of trying to be super human, and focus on them. I’m thankful that we have a friend family that my kids may also turn to when they need additional adult attention.
Not asking your children what they need and how they are feeling. I would take this a step further and enlist another trusted adult (friend, counselor, religious leader, etc.,) to be available for your child to talk guilt free to.
How Having a Chronically or Terminally Effects You Emotionally and physically
I will never deny the immense toll that raising Bea has taken on me. Despite that, it has given far more than it has ever taken. It would be irresponsible to diminish how much stress has shaped me both physically and emotionally. There have been sleepless nights, worry, fear, anxiety, jaw pain from clenching my teeth together, premature aging from stress, a giant crevice on my forehead from pulling my eyebrows together, endless fatigue, and so much more. The physical strain of lifting, twisting, pulling, pushing, bathing, washing, and the like have left my hips hurting, lower back pain, and sore neck, and being just bone tired. It’s been worth every single second.
You need to give each other a break, as in literally. Caregiver burnout is not good for your relationship, your family life, or YOU.
How the Dynamics Change in a Marriage
A relationship may evolve from marriage to children. That’s another transition from being a couple, becoming married, and then again when you become parents. Roles within each of those transitions transform. What was once acceptable may no longer be ok. For example, you accept that your spouse is not as focused on cleaning as you are. You may overlook this as a married couple. Then when you have children, you begin to feel that this is a bad example for the children. Whether the spouse adapts to the new dynamic or they don’t, it’s not the end of the world. However, when one of those children is chronically or terminally ill, you no longer have the emotional reserve to deal with one more thing. That sweatshirt on the floor become the proverbial straw that breaks the camel’s back.
Learn your “love language,” and make sure to know your spouse’s. Speaking and loving them in a way they need you to is important, but doubly so when you are so entrenched in stress.
HOW HOSPICE CARE IN YOUR HOME EFFECTS YOUR MARRIAGE
Do you want to know the most effective way to get your house cleaned in the shortest amount of time possible? Have someone call and say they will be at your house in twenty minutes! Of course, this only works if the person isn’t in my inner circle. Hospice is not in my inner circle. Any guesses as to what happens when they are in my home on a routine basis?
“Quick! Someone go and make sure the guest bathroom toilet is clean!”
We have nursing respite care for for a portion of three days a week. That’s five days a week of actually genuinely caring what the guest bathroom looks like!
How does that alter my marriage? I’m pretty sure my husband is not a fan of getting up early to make sure the kitchen is up to snuff. Yes, I know I shouldn’t care. However, with everything else beyond my control, I need a clean kitchen. Then there is the bedroom romance that is anything but! It looks like the laundry room ate our master bedroom! Then there is the communication of new orders, medicines, therapies, important dates, visit recaps, charting, etc. that must be relayed! Instead of canoodling and discussing your
undying love and devotion days at work, you are going into the stress zone and discussing all of the aforementioned. In short, having a rotating crew of people in and out of your home that you don’t “know,” is stressful on EVERYONE.
Setting healthy boundaries with those entering your home. Know what the emotional needs are of your family. If visitors have a positive effect, then invite away! However, do not feel guilty if the opposite is true. Not that you need it, but you have my permission to say, “This isn’t a good time for us. We should be available at 11 am on Monday or 7 pm on Thursday. Which works better for you?”
With that said, it is easy to lose a part of yourself when your lives are focused intently on the health of your child. When every day decisions become the difference between life and death, how could there not be a strain? Let’s equate having a chronically ill or terminally ill child to swimming. The water is stress and there is absolutely no way to empty the pool. You are required to tread water. For your marriage to stay afloat, you will both need to learn to do just that. If either of you has to hold too much weight, you will sink! You will have to divide the tasks and immense hurdles you face together.
Complicated Marriage Roles
Not asking for help when you need it. Know who your resources are where to find additional support if needed. It will genuinely take a village!