I’m sure some of my acquaintances will tell me I shouldn’t have posted this to my blog. They may be right but I feel compelled to post it because it might help someone.  Isn’t that what Christians are supposed to do? I want to help anyone who has a spouse who has had a stroke or who wants to minister to the family of a stroke victim. Knowing what the victim and the caregivers go through will help you minister to them better.

The Context

I’m standing in the emergency room of the hospital eight months ago (July 4,2011). My wife (Jan) has just had a stroke and they are asking me for permission to intubate her. We had a no resuscitation clause in our will, and I had a durable power of attorney and medical power of attorney. Jan was unconscious, but she could squeeze my hand.

What do I say to them? To intubate or not to intubate – it’s a life-determining decision.

I let them intubate my wife because she could squeeze my hand. I know, my decision went against what my wife and I had talked about. But when faced with pulling the plug on someone you love, it’s not that easy.

Lessons Learned

Here’s what I’ve learned since then.

Life has been challenging for me and the two caregivers who have been with us all along. But Jan has had some very good days along with her share of bad days. Sometimes she laughs and teases and has a good time. Not too many days ago, she was on our back deck in the sun pulling her pant legs up to get more sun. She said, “This is wonderful.” I told her she was flashing our neighbors. She laughed and kept on pulling her pants legs up to get more rays.

Then there are the times when nothing goes right. Like last week, when she was in the hospital for the whole week.

But here is what all close relatives of stroke victims need to know – if you refuse intubation, you will never know the possible extent of the recovery.  My wife’s stroke was worse than a normal stroke.  They told me it was a moderate stroke – that’s code for a bad stroke; doctors tend to have trouble being straightforward with the truth. So, if you are faced with such a decision, push your doctor to tell you like it is. They won’t unless you do.

The second week in the hospital following the stroke, Jan was having severe breathing problems. I asked the doctor what he thought her chances were. He said to me “Not good. We can pull the oxygen and let her go if you want. We all have different religious values, so it’s up to you.”

That was one of the low points of my life. One of our caregivers was there beside me and heard the doctor’s comments, so we discussed it. I called our daughter and we talked. Finally I decided not to take the oxygen off.  I’m glad I didn’t. Jan recovered, and after five months in a rehab center, better known as a nursing home, I took her home where we could be together and she could be with her dogs and birds and pelicans.  She has always fed any live creature she could.  She continues to do just that, but through my hands. Still, it makes her smile.

I pray no one reading this will ever face this situation. But if you do, and if you take a stroke victim home, you have to be prepared for the inevitable: 24/7 care and a lot of expense.  That is what it takes today to keep Jan at home. I thank God we had the resources to take her home. Our experience in the nursing home was far from pleasant, even though she was in a private room. It was one of the best in our area. I will never forget the almost constant, shrill ring of the call button going off from one of the residents all day and all night.

One more thing to be prepared for: your patience will be sorely tested. Maybe that is what I am supposed to learn through all of this. I’ve never been a patient person.  But caring for a stroke victim who can’t do much for themselves requires tons of patience.

Now Jan has some good days and is up several hours a day.  But we have to use a sling and lift to get her out of bed. She can only turn over on one side.  She has to have her diapers changed on a regular basis each day. We are blessed to have a doctor who will come to the house – they are rare. She has a nurse who comes by now and then, a bather who comes twice a week, and therapists who come two or three times a week.  Sometimes she can participate in the therapy and sometimes she can’t. The two things she can do are feed herself and brush her hair. Everything else must be done for her.

As I write these words a horrible thought comes to me – how would my wife feel about sharing this with the public? After all, it’s not a pretty picture. I think – no, I know – she would want me to share our experience if it would help anyone make the decision to take their loved one home.

Would I do it all over again? You bet I would.  The day I brought her home she looked me in the eye, took my hand, and said “thank you.”  Several times since, she has put her hand on my face and said “I love you.”  You have to know, my wife has never been overly demonstrative.

Has it been easy? Not at all. It has changed everything. But has it been worth it. Would I recommend giving your loved one a second chance? Oh yes. I would have felt guilty for the rest of my life if I had not allowed the doctors to intubate my wife. One never knows. I still have hope that she will get better, even though she is 73.

Last week Jan was in the hospital for a week with a serious infection. The week after returning home have been the best five days she has had since the stroke seven months ago. Go figure.

Have there been times when I have questioned my judgment? Of course. But would I do it again? You bet.

Life is a crap shoot. And we never know the outcome. However, one thing is for certain – if you pull the plug, it’s over.

Twice over the last four years, I have been called to the hospital to sign a “No Resuscitation” order, better know as a DNR. So what I’ve shared is not some Pollyanna piece.  Life and death decisions do not come easily.  You need to talk this over with your spouse before you face such a decision. And you need a will. You need one NOW, no matter how young you are.

But in the final test, you have to trust your instincts in situations like this. When all else fails, err on the side of caution.  You can always pull the plug later.

I hope this helps someone.

Question: Have you or someone you know been a caregiver for a stroke victim? If you’re comfortable, share your experience in the Comments section below.