It is amazing what a little recognition and positive
encouragement can do to bolster the spirits even in the face of a less than
positive future.
In many ways watching ones spouse descend into increasing
cognitive difficulties can easily become an isolating situation for the
care-giving spouse as well.
Many doctors do not want to speak to openly about their thoughts, fears,
or prognoses without proof. HIPAA makes
it more difficult to communicate with the spouse’s physicians. Even with letters of authorization from
the patient, power of attorney, medical power of attorney, each conversation
can become a hard won battle that often ends in disappointment as the
information needed is either not there or not forthcoming. Doctors are humans too and react to their patients on a human
level and watching a once-colleague and friend decline can cloud the waters of judgment.
Social life also becomes more limited. The confused spouse becomes easily
over-stimulated and easily confused.
Personal relationships falter as conversation becomes difficult, and
many people, not sure of what to say or how to be of help simply disappear. On
a purely intellectual level it is quite interesting, and I suspect I have
engaged in this kind of activity far too frequently in my own past. One doesn’t know what to say or do so
one says nothing and disappears. I
don’t believe this is purely intentional:
it is just so much easier to avoid the situation. If one is not directly faced with the friend
or colleague is no longer completely who he once was, or faced with difficult
conversations or inappropriate and embarrassing outpourings of emotion, then
one can more easily convince oneself that things are going well, or as well as
can be expected. “Take
care of yourself” becomes the unwitting anthem of abandonment. Remind myself never to casually toss
out that phrase again.
And yet I was completely surprised at how buoyed up I felt
after G and I had contiguous
appointments with my internist who is also G’s new internist after his previous
physician retired. For
the first time a physician actually spoke to me and said that what G was going through
was pretty obvious and discussed the possible outcomes and what I needed to do
to take care of myself as well. He
made sense. He explained how G’s
keen intelligence has in many ways helped him to mask what is going on, and how
easy it is to fall under that spell because no one really wants to believe that
someone they love/respect/admire is failing. But he also explained the obvious signs and what they
mean. He was the first doctor to
acknowledge that the things I observe actually fit in the pattern relative to
the fairly subtle but still obvious signs that he, the physician, saw. He was
the first physician who has acknowledged that although G is highly intelligent
and obviously still is, there is a good bit of cognitive loss and the best we
can hope for is to be able to stop the decline, and possibly gain a little
ground. But that possibility
depends highly on the results of tests that G is undergoing now, and the other,
more likely, possibilities are far less positive. And although he did not tell me anything that I did
not already know, the fact that he said something, that he acknowledged the
situation and actually did help me in understanding some of G’s behavior and
how to cope with it, was like receiving a gold star in kindergarten.
Although nothing has changed, everything has changed.
Comments
2 responses to “How do you spell relief?”
Mardel,
It must be so hard for you watch G descend mentally. HIPAA does make things very difficult…I wish HIPAA would be repealed…I don’t think it really helps in the long run.
I suppose one starts realizing the this is the start of a new and different life where you lose much of your husband and become the care giver…
I hope you have someone that you can turn to for support.
I have a similar situation. I have no idea how my husband’s disease progresses. Unlike you, I am a coward and have taken the path of what I don’t know won’t hurt me. It’s ironic because I grew up with a chronically ill father and vowed never to find myself in that situation again. Yet here I am. It’s just a “wait and see” process, and I feel that my life is hostage to his.