Strategy for a Care Giver’s Survival

The pain of seeing my wife deteriorate and knowing that today will always be better than tomorrow is sometimes almost unbearable. I find myself having to struggle very hard not to give into the sorrow, not to draw away from the outside world entirely.

As I look back over the 4 years since she was diagnosed, the changes in her oddly echo the schemes of evolution. In evolution there is the gradualism in which changes happen slowly over long periods of time and punctuated equilibrium as a major event incites more radical changes. In FTD there are gradual changes as the brain deteriorates and there are sudden major declines caused by events like urinary tract infections.

It is a challenge to me to change my own emotional makeup just to be able both to maintain some equilibrium in a constantly changing environment and to preserve something of what my life was before. What has always been the most valuable to me are ideas that derive from the 4 Noble Truths of Buddhism. These 4 Noble Truths are not religious but are guidelines for behavior and I have derived my rules for survival from them.

Live one day at a time is probably the most commonly generally understood guideline. Don’t have expectations for the future, for behavior, just live for now.

An important follow on from that first guideline is to stop thinking about the prior arrangements or implied agreements with the person you care for. Yes, my wife used to do a great many things but she is not choosing to not do those things, that part of her is gone and she isn’t responsible so don’t expect more and don’t get angry when you have to pick up the pieces. I didn’t love my wife for what she did but for who she was and so, no matter how much mess she makes that I have to clean, I will continue to love and care for her.

Maintain something of yourself. We’ve all lost a lot along with gaining unrewarded responsibilities but I think it is crucial to maintain something of your past life, in some way. Find some way to wring some time to do something that you like and that is rewarding – even in a tiny way. These illnesses rob the patient of everything eventually, don’t let everything get stolen from you all also. Don’t let the disease kill two people.

The last rule was the most difficult for my. I do my best to keep anger and bitterness from my life. Believe me it is a constant and difficult struggle to push those away but expressing anger, bitterness or negativity never adds to my life, just detracts from it.

I live my life by these 4 rules as much as possible. I try to let little else in. They don’t relieve my grief, they don’t make my wife’s situation any better but, like a bandage over a wound, they keep other elements from exacerbating the pain.


Addendum: Someone asked me this: My biggest struggle is to find the path between negativity and realism. How have you found that path?
and I responded:

that is a tough one. When a situation is obvious or someone says something that is clearly wrong/stupid/bigoted/unkind, then I have no hesitation is saying what I think is ‘real’.
If I have to reach for a value judgment and there are lots of unknowns, I will just back off.
This last rule is relatively new for me; I’m embarrassed I’ve learned it so late.
If I have been negative in the past, I try to make it better;
that doesn’t always work.
Recent example: I play pickle ball and one of the players is quite a physically lovely woman (and a good player) but she is rather unpleasant and caustic to the point that many people won’t even be on the same court with her; the last time she was unpleasant to me I told her that she wasn’t my wife and she had no right to talk to me that way. We’ve not talked since – even to the point that we’ve played doubles on the same team and not spoken.
A couple of weeks ago, I stopped her and apologized for what I’d said. She said I was fill of crap and walked away.
No matter, my intent from now on is to treat her as pleasantly and courteously as I do everyone else.
It may not make any difference in the way she acts towards me, but I won’t have the burden of being negative to her any more.
All these ‘rules’ are to lighten my burden.

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11 thoughts on “Strategy for a Care Giver’s Survival”

    1. that is a tough one. When a situation is obvious or someone says something that is clearly wrong/stupid/bigoted/unkind, then I have no hesitation is saying what I think is ‘real’.
      If I have to reach for a value judgment and there are lots of unknowns, I will just back off.
      This last rule is relatively new for me; I’m embarrassed I’ve learned it so late.
      If I have been negative in the past, I try to make it better;
      that doesn’t always work.
      Recent example: I play pickle ball and one of the players is quite a physically lovely woman (and a good player) but she is rather unpleasant and caustic to the point that many people won’t even be on the same court with her; the last time she was unpleasant to me I told her that she wasn’t my wife and she had no right to talk to me that way. We’ve not talked since – even to the point that we’ve played doubles on the same team and not spoken.
      A couple of weeks ago, I stopped her and apologized for what I’d said. She said I was fill of crap and walked away.
      No matter, my intent from now on is to treat her as pleasantly and courteously as I do everyone else.
      It may not make any difference in the way she acts towards me, but I won’t have the burden of being negative to her any more.
      All these ‘rules’ are to lighten my burden.

  1. Love reading your blog Lew.
    I still struggle with #3 for myself, but I’m striving to accomplish this one.
    You’re so right about this disease not killing us both.

  2. Thoughtful , helpful, piece. So much spoke to me Just now when I need it. Really needed to read this just now.
    You are an inspiration. Paving the way. Thank you.

  3. To: John A, Cindy, Nancy and Mary.
    Thank you for both reading and commenting.
    Makes me feel good that people who share my situation like what I think.

    Lew

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