A Spouses' Guide to Surviving Catastrophic Illness

My story starts simply enough. It was the Saturday before Christmas of 2008 when my husband suffered Myocardial Infarction. This is the big fancy scientific word for "Heart Attack." He made jokes about having a heart attack. I should have seen all the signs. He worked hard all his young life, smoked heavily, partied a lot, and generally lived robustly. Let it be known now that heart attack is no joke. We thought that it would be simple - he would be admitted to the hospital, have bypass surgery, be home in a week and life would be back to the tumultuous normal that it had always been. I was wrong. We were wrong - horribly, terribly wrong.

Patience is a virtue. It is also something that you need when caring for an ailing spouse.

I am generally a patient person, but no one told me that the time after the surgery, during the long recovery process afterward, would be the thing that would test my patience. When a bypass recipient is released from the hospital, the caretaker is only told how many times certain medications are to be taken. We are only told that the ailing person is going to need us to do darned nearly everything for the recovering spouse. Heart surgery is bad enough to have to go through, even though it is a life-saving procedure.

The doctor on duty was kind enough to alert us to the fact that my husband would find himself horribly depressed for most of the time that he would be in recovery, but the truth is that the caretaking spouse needs to be prepared for the very most emotionally charged, exhausting, patience-testing time in their lives. Everything in life at that moment is amplified, not only for the patient but also for the spouse. No one told me that I would have to carry him to the restroom, that I would have to bathe him, feed him, turn him over in bed, just like no one ever told me that these things were going to be easier than what I myself would go through. I ever there were a time in a married person's life where the words "...through sickness and through health..." were going to be tested, it is going to be during the recovery period after the trauma.

You may be thinking to yourself that your spouse would never turn on you, but I beg to differ, as I thought this very same thing and boy, was I wrong!

Be prepared to have you feelings hurt, your efforts minimized and who you are belittled.

The healthy caretaking spouse should take care to read and take to heart my warnings. I am in no way making this bigger than it should be. If you are the spouse who is not responsible for the monetary part of taking care of the family, at least when the ailing spouse is in recovery, prepare yourself to hear that you have done nothing in regards to bringing anything at all into the household throughout the span of your marriage that was worth a dime, or a damn, because unless their employer grants disability pay, you are going to be the reason that everything bad in the world happens. You will have days where there will be no bickering, but the silly arguments that happen happen more often than you care for them to. If your spouse was never one to argue over trivial things, you will find out for sure the depth of your own character through trying to rediscover theirs. I will not venture to say that you have to take it on the chin- at least not all the time- but get used to eating crow and lots of it. Get accustomed to the idea that the person you took to the ER a week or so ago is so totally NOT the same person now.

Yes, they love you, and if they could they would do anything to return to the normalcy that you once had between you. But know now that he or she is going through something that you cannot relate to. Please don't fool yourself into thinking that you can deal with them the way you did before. You cannot, not if expect for them to get better soon and be up and about. You cannot expect them to be able to do as they did before. It just is not going to happen that way. What will happen is that you will become frustrated, you will get angry, you will cry, and you need to know now that these things are all very normal for you to go through. However, the time to become alarmed is when you begin to cry uncontrollably and for seemingly no reason at all. Spouses of the catastrophically ill end up emotionally and physically drained. You will find yourself raising your voice at them, coming back an hour later and apologizing for your words and actions. Believe me, I know this because I lived it and still live it.

Learn to cope in ways that do not include the ingestion of alcohol, street drugs, or overdoing prescription medications for pain or mild psychosis. Meditation, exercise, support groups, learning a new hobby, even taking on helaing yourself through creative means like drawing, painting, taking a dance class - all these things are what you will need to be able to cope. You will be relearning why it was that you married them in the first place. You will learn the meaning of responsibility that reaches further beyond anything that could be close to raising kids.

...and the kids! What about the kids?

Children are resilient. They can handle just about anything. They need to be told the truth about what has happened. There is no way to make this sort of thing pretty, no way to make it easier for them to handle, no way to lie about it the way that you may have in the past about a pet that mysteriously disappeared. The person who suffered is part of them, regardless if that person is a biological or step or adoptive parent - it still hurts the same, and the kids, unless they are told the truth at the beginning, cannot handle finding out the truth later on, whenever "later on" is.

It is an uncomfortable process, telling the kids that they have to be quiet all the time because their ailing parent is sleeping or irritable. They do not understand what is going on and it is up to you to at least take the pressure off of yourself and tell them the truth. The ugly truth is easier to deal with in the long run. Keep them busy with helping you take care of your other half. Take care not to be short with them - they really do not know the magnitude of what is going on and it is your job (one among many new ones) to ensure that they understand the bigness of it all.

Tears will fall - yours and theirs.

Frustrations will begin to wear on you. What you used to be able to deal with you will now have problems with. Arguments will no longer just be the kind where you can kiss and make up. No, no, no - they now take on a new flavor, a new face. Now you will be made to feel guilty about things that you have little if anything at all to do with. Frustrations will mount and you will have to learn a new "fight style," one which will explain better not only to your spouse your feelings, but also will make them real to you as well. We like to believe that we are stronger than the thing that is there in our lives at the moment, but the truth is that we must be stronger than that. You must be able to deal with their inability to do like they used to do, and you will have to learn to accept that from this day forward, you have been given the unique job of caring for another woman's child.

Through it all...

You will survive, but only if you are willing to accept that your life has been shaken by this thing that will consume you if you allow it to. It will consume your spouse - make no mistake about it. You will be tasked with doing things that no grown person should have to. Your ailing spouse cannot do the things that they used to be able to do such as shower on their own, perform their own "toilet hygiene," if you will, on their own, remember to take their meds when they are supposed to, and the list goes on and on. You will learn to seek the extra strength that you will be needing in order to survive this ordeal. Never forget that there will come an end to this new confusion, and when you look back, the normalcy of old will seem like nothing compared to the new normalcy. It may even prompt you to do something extraordinary with your life. Many spouses I have come to know whose lives have been turned upside-down by sudden catastrophic ailment learn from the thing that has eaten their lives lessons that they would never have been able to learn otherwise.

In my case, it prompted me to seek higher education, become ordained and do Hospice work, and also, to form a nonprofit organization which promotes healing through art. We are all healers, all of us, and we all have the ability to creatively change our lives and the lives of those who we love. The surviving spouses need to know that you must take care of yourself as well as you did before all this craziness started. You will need your strength, your bearings, so that you can deal with not only what is happening in the world around you, but also with your inner world. Taking care to notice when you are going to have a bad day, when your spouse will have a bad day, or when things arise that no one has any real control over, and notcing how you feel and observing the way that you respond to the situation makes all the difference in the world.

It will be the difference between your inner strength and your ability to get through trying times later on in life and the ER for yourself. Take heart to these words, and know that you are absolutely fine, that the situation is temporary and that normalcy will return. Take these happenings as more of a test of strength, resolve and faith more than it will be seen as just one more thing that you have to do...and trust me when I say it- You HAVE TO do these things. Divorcing a sick person is cruel. You would not want them to leave you if the tables were turned, would you?

Keep your head up and watch the road ahead of you. There is a lot of self discovery along the way, but only if you are willing to keep your eyes, heart and mind open to it all !