JOAN’S BLOG – MON/TUE, JUNE 8/9, 2009 – "IN SICKNESS AND HEALTH" - WHAT DOES IT REALLY MEAN FOR SPOUSAL CAREGIVERS?

This is one of those blogs that comes with a disclaimer. What I am about to write is my opinion, and my opinion only. It is a decision that is right for ME and I mean it to apply to only ME. It is NOT a judgment on those who disagree with me. Those of you who are familiar with my writings know that I make no judgments for or against anyone’s opinion. We are all different; we have led different lives; we have had different experiences; our experiences have shaped our opinions. I encourage all of you to express your opinions as your own, as I am doing now.

Okay. Now that the disclaimer is out of the way, here are the thoughts that have been taking up space in my brain lately. I hear from a large array of spousal caregivers – in e-mails, on the message boards, at conferences, at Advocacy programs, and a variety of Alzheimer’s events. The major theme from spouses is that “I took a marriage vow that said in sickness and in health. I cannot betray that vow by giving up taking care of my spouse and placing them in a care facility. I will care for them at home until ‘death do us part’.”

At the same time I am seeing or hearing about those spouses falling asleep in the middle of a sentence from the lack of sleep involved in 24 hour care. I am seeing or hearing about them ending up in the hospital for minor surgery turned into major surgery  because it was put off too long, while they were caring for their spouse. I am seeing or hearing about them being isolated in their homes, cut off from the world of friendships and activities because their life is totally given over to caregiving. I am hearing about tiny women trying to bathe, diaper change, drag, and lift a man twice their size, and injuring themselves in the process. I am hearing about frail, elderly men with heart problems of their own trying to lift their wives off of the bathroom floor when they have fallen. Worst of all, I am hearing of bruises and broken bones inflicted on both men and women by violent, out of control, once loving spouses, whose brains have been taken over by Alzheimer’s Disease. And I have read about and seen the tears flow from all of the caregiving spouses who say, “But he is my husband. She is my wife. I promised in sickness and in health. I cannot “put her/him away”.  Some of these spousal caregivers are fortunate enough to have the funds to hire 24 hour caregivers to come into the home. But most are not. Most get by with a few hours a week of in-home help. Statistics tell us that most spousal caregivers wait two years too long to place their husband/wife in a care facility. Two more years of deteriorating physical and mental health for the caregiving spouse.

So I have been thinking – Does “in sickness and in health” mean one has vowed to let spousal caregiving kill them? I think not. After reading about and listening to the stories of feces smeared walls, floors, and patients, night time wandering, injured backs, physical abuse, no sleep, constant exhaustion and stress, I have decided that for me, “in sickness and in health” does not mean that I should let caregiving kill me.

If my house burned down, I would not try to re-build it myself – I have neither the expertise, nor physical stamina to do it. I would pay the insurance money to the professionals and let them do it with my advice and counsel. As soon as I feel that my husband’s care is beyond my ability, I (and Medicaid) will make sure that he is placed in a safe, secure, environment with professionals who have the expertise to do the job with my advice and counsel . I feel that I can be a better advocate for his care if I am not exhausted, stressed, in physical pain, and in constant fear of violence. I remind myself that in a care facility, it generally takes 3 shifts of many people to do the one job that a caregiver tries to do alone at home.

That is not to say that I will not be hysterical, emotionally devastated, and heartbroken when I do have to place my husband, but it is to say that I do not feel it will be a violation or betrayal of my marriage vows. No where in the marriage vows that I took does it say – “Your job is to die caring for your spouse.”

My husband and I have discussed the issue. We have agreed on it. And for now, we have both agreed not to think about it anymore (Which will be easy for him, because he will forget the entire conversation). I feel a bit of stress lifted from my shoulders in having made the decision. It is the right one for me.

MESSAGE BOARD TOPIC: Joan's Blog - June 8

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