When Multiple Members of Your Family Have Chronic Illness
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You never expect to one day hear the words that you will live your life with a chronic illness. It is not your dream to be handed the news that your baby will live with a chronic illness. And you definitely don’t think following all of that you would then be told your spouse will live the rest of their life with chronic illness.
Don’t try to look up any information on families living chronic together. Unless there is a secret library somewhere, I could not find one. You can find a book on when you have chronic illness, your loved one has chronic illness or about chronic illness for your child.
While all of those can be helpful. They don’t help with the day in and out of life when more then one person in your home lives with chronic illness.
I call my husband my caretaker; he is physically able to work and can do most things. My 23-year-old also helps where he can with driving me around, running to the store or doing some of the chores I can not do.
While both live with chronic illness themselves, the roles are always changing in our family within a matter of days. They both also have limits depending on their own current stability.
In our home the chronic conditions range, and while I live with a debilitating chronic illness, there are many times I am the healthiest and able to take care of the others.
Here are some tips I hope can help anyone who finds they are in our shoes, with multiple family members living with chronic illness.
Communication is very important in our family, even if it isn’t always polite or nice. We must keep the conversation going. Let’s face it, dealing with one person with chronic illness is stress enough, but add on one or two more, and who wouldn’t argue at times.
A Shared Calendar
We have Google emails and calendars set up on our phones. Anything we set up on the calendar is sent to the shared account. We also color code the items we put in the calendar. So if I am looking at the month, I can see anything purple or yellow are mine, green is shared and red is my husband’s.
You both need to have an updated medication list every time there is a change to your medication or your allergies to medication. This is huge. I have so many medications it is hard for me to remember. We both can name a few of each other’s list, but there is no way we both can remember each other’s.
Having others help when they can is important, because caretakers wear out fast. They may be working, have children and/or elderly parents, and now are adding on the needs of another person. If the caretaker has a chronic illness, then they must run to their own appointments, get medications and have special requirements to care for themselves. They will often put off taking care of themselves.
We have found gold in doing freezer meals that we can prep the ingredients for into a freezer container to make on a busy day. It keeps us from always doing drive-through and it makes the decision of what we want much easier.
Knowing Each Other’s Weakness and Strengths
This is important in any relationship, but especially when you’re dealing with differing abilities, you do not want to have your spouse carrying the trash out and leaving behind a mobility device because they had to use two hands. You are only asking for trouble. (Take note here — some of the sedentary items can be just as dangerous left in the wrong hands. You may not be left with a spouse with a broken leg, but you may end up with an overdrawn bank account because the wrong bill got paid at the wrong time.)
A Backpack for Car Trips
I always take a stocked bag with drinks and snacks out with us. You need this for medication, fatigue and dehydration. (When you are on medication it is important to stay hydrated.)
It is so important that you take out time for fun, and it doesn’t have to cost anything. Play cards, watch a show, go for a car ride and listen to your favorite tunes or have friends stop by. Just make it a point to get out and have fun.
Be it sexual or just building on connection with each other, go for it! I often hear in support groups, “I just don’t feel like it.” How many things do we not feel like doing in life that we end up doing and later say “I am so glad I did!” This is one of those.
Stay Connected to Your Faith
I believe this takes a backseat for most people who are busy with life. I believe even more that when we are fighting chronic illness, we use it as an excuse to not go to our place of connection to our faith. Find a way to stay connected. I myself do online bible studies and online sermons, so whatever your faith is I encourage you to stay connected.
Give Each Other Space
Even when we are in my husband’s semi we take breaks from each other. I will get in back and put my headset on, so he can listen to sports. Or if it is his time off, I will let him sprawl out in the bed and I sit up front and read.
Signed Medical Release
One last thing that may not be for everyone, but helps us a ton, is we each have signed the medical release at all of our doctors to be able to let our spouse call in and ask questions, get lab results and request help with medication issues. If you do not sign this release, only you can call in to do these things. In our situation, where I can be down for months, it is important that my husband can make the calls. And there have been many times the roles have been reversed.
When you live chronic together, sometimes it feels as though everything is about health, appointments and medication. It is so important that even though you are warriors together, that is not all you are.
You are both individuals with hopes, dreams, passions and love.
Getty image by Halfpoint