A journal, properly maintained, serves as an historical record. Regularly left unattended when entries should have been made, though, a journal’s value declines precipitously. In the latter case, it may as well comprise random shreds of information that not only fail to tell a story but, indeed, may mislead. My failure to keep and properly maintain a journal of my wife’s experience since being hospitalized in mid-July this year contributes to an incomplete recounting of what both she and I have been going through. Much of what we have gone through is personal and private and not the sort of thing one makes public; at least not for long after the fact. Yet I have failed even to record it privately. What I have written has been recorded on this blog. Looking back at my posts, I see that the story is utterly incomplete, yet it does reveal to some extent the degree to which our experiences have fallen and risen and dipped again…and again…and again.  But, still, the story has not been properly recorded. No yet. I intend to spend some time in the next few days—maybe much longer—trying to document what I have failed to document. I will not post it here; not in the immediate future, anyway. But I think I need to make an historical record of one of the most painful periods in my life thus far. I assume, but cannot be certain, that it is one of the most horrendous experiences my wife has ever had, as well. And it continues.

I’ve been advised to “take care of” myself during this extremely difficult time. Though I’ve gotten advice on how to do that from several people, I don’t know quite know how. Several people have offered to help me in any way they can; they are genuine in their concern, I am sure, but I do not know how they can help. They cannot remove the constant worry and fear. They can listen, but I am certain that no one can afford the time to listen long enough, because I don’t know long I might need to tell what I am feeling. Once they heard me, though, what could they possibly do to assuage the guilt and pain, I wonder? I do not want to ask someone for help, only to have them try and discover there’s nothing they can do. That would transfer guilt and disappointment to someone who was only trying to help.

I do not know what I need to get through what seems to be a never-ending crisis. One of the worst aspects of it, for me, is that the stress and strain and mental anguish I feel must be a tiny fraction of what my wife is going through. I feel intense guilt that I can even think of relieving my pain; hers is the pain that needs relief, far more so than mine. I cannot get that out of my mind. When I try to direct my attention to other things to get my mind off what my wife is experiencing, I am consumed with guilt for having the audacity to even attempt to give myself relief when I cannot give it to her.  Those brief moments of talking with friends or having a glass of wine with neighbors or taking on projects for the church give me momentary respite, but after that break I feel even worse for having taken it. People tell me I should not feel that way. Maybe I shouldn’t, but I cannot help it. I think I’m hard-wired to react that way and the only way to stop it is to cut the wires.

Writing about what I am thinking, even as disjointed and convoluted as it is, is probably healthy. That’s what I am doing here. I am not asking the unfortunate reader for help; this is for me, to preserve what’s left of my own personal sanity.

I mistyped a word in the paragraph above. I wrote “preserver” instead of “preserve.” Perhaps it was a Freudian slip of the finger, an acknowledgement of a need for a “preserver” to cling to, hoping to keep from sinking. This is hard. Too damn hard. Too hard for me to continue writing about it here.


About John Swinburn

"Love not what you are but what you may become."― Miguel de Cervantes
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2 Responses to Hard

  1. Bev, as always, you give sage advice. I thank you for that. I do try to avoid feeling guilt, but it is a difficult thing. Difficult or not, I know I must try. You are right; I can help only if I keep myself healthy for the challenges in front of us.

  2. bev says:

    It’s a good thing to keep some kind of journal when someone is ill — not just a sort of narrative, but include alongside any narrative — such details as medications that the person has gone onto, or off of, changes in doctors, any diagnostics. That can be very important — not always — but often.

    One thing that I hope you will know is that often the caregiver is more upset and tortured feeling than the person who is actually going through the experience. That’s something I have discussed with both patients and their caregivers. I remember when I had some things go badly wrong in 2005 and 2006 and had to have surgery, I think Don was more upset about a lot of it than I was.

    Try not to feel guilt for little breaks away from the stress of what’s going on. Those breaks are what helps one to cope and gives you some stress relief so that you can step back into the ring and keep duking it out with the disease or any other obstacles that come up. Tired, stressed out caregivers or spouses are not as effective as they would be if they had some serious rest and de-stressing talking with friends or doing whatever helps. Going through medical stuff is a team effort. so it’s important to do what you can to stay healthy and ready for whatever lies ahead.

    tale care. b

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