SOME VERY WISE WORDS
- MICHELLE MEYER WRITES
TO ANOTHER SPOUSE
CARING FOR A HUSBAND
WITH A BRAIN TUMOUR. (Reproduced with permission.)
Date: Fri, 16 Dec
2005 00:07:46 -0800
From: "Michelle & Dave Meyer" meyer1986@charter.net
Subject: RE: tired wife (LOOOONG reply)
Whew!! Tired is right. I'm sorry, Lori, that you find yourself in this
place. It's a difficult place to be, and you've been living it for a
while, it sounds like. You're doing so much, taking care of children, a house,
your husband and somewhere in there, even taking care of yourself. Take just a
minute to take a deep breath and give yourself some credit for all you're
doing. I'd give you a hug if I could!
A brain tumor can alter a person's personality, particularly tumors located
in the frontal lobes. This can be very tough to deal with. For the
caregiver and for the patient, too.
I haven't walked in your shoes, so I don't know if anything I say will be
helpful at all. We were fortunate that Dave remained the same, sweet,
loving and giving man throughout his 8.5 year battle as he was the day I
married him. That's not to say we didn't have disagreements about this
whole beast we were fighting. We did. I'm going to share some of what I
learned through some of those hard times, and if it's not helpful, just
delete it!
I learned that this journey we were on truly belonged to Dave. I was
involved certainly, as were our children (5, 4, and 1 when he was
diagnosed), but the actual journey was his. This was his life we were
talking about, and I learned the hard way that the burden wasn't mine to
take, no matter how much I wanted that. I was a witness, a helpmate, a
supporter, and everything that happened affected me, it's true, but my life
was not on the line. This was Dave's life, and ultimately, his death. I
had to learn to be there with him and for him, whatever came.
Dave would never talk about dying, either. He was determined to live until
his last breath. He would talk about treatments and research and what we
were going to do, but never, ever about "what if..." He lived in the
moment. There were things about that attitude that were wonderful, and
parts that made it hard to live with. I tried to remain open and give him
the opportunity to talk about things if he wanted to, but not force my
agenda on him.
Now, marriage is a partnership, and it's important that both people have
their needs met. I was fortunate that Dave would always listen to me and
what I needed to talk about. He also was not in denial, in that he had all
the legal/financial matters well squared away for us. But as far as needs
go, in many ways, Dave's needs were primary. What he needed mattered most.
As far as ultimatums go, I've never seen an ultimatum improve a
relationship. It's just not a good way to build trust or open
communication or mutual respect or any of the many things required in marriage, or
friendship for that matter.
Now, giving ultimatums is very different from setting boundaries.
Boundaries are limits that keep you safe, help you meet your needs and keep
relationships from becoming abusive. An ultimatum says, "Do this or else."
A boundary is when we say, "This is what I am/am not comfortable
with/about. This is what I need. This is what I'm willing to do."
As far as the kids go, that one breaks my heart. I feel sad that what your
husband is going through is keeping him from being able to enjoy his
children. I'm not sure what suggestions to offer...perhaps talking with
him about setting some time that is just for the kids and time that is kid-free
or quiet for him? Remind him how important his presence is to them, how
much they love and need him, and create certain times, "kid-dates" if you
will, when he can muster his energy and patience for a short time and play
a game or throw the ball around or whatever. Perhaps he can rally his energy
for this time and make it enjoyable, knowing he'll have some space to
himself later. Then find a place and time where he can have peace and
quiet to just watch tv or read or whatever he likes.
As far as the house being in top condition. Well, first of all....HA!
You've got kids and cancer living in the same house. I think you're lucky
if you can still find the kitchen sink! This is a place where boundary
setting can be very helpful. You can say..."I'm comfortable with the kids
picking up their toys twice a day. I'm willing to make sure they do that.
If you'd like them picked up more often, you're welcome to do so, but my
commitment is twice a day." Also, I know for me, that when I want things
clean, it's almost always about control. My life or my emotions or my head
feels out of control, so I grab the vacuum, trying to establish some order,
some sense of making things go right.
The fact that he wants to be with you 24-7, and is following you from room
to room in order to be with you, speaks to the fear that's underlying his
angry behavior. Anger almost always masks fear or hurt. Anger is a
secondary emotion, a protective device. The most effective way is to
address and respond to the underlying emotion. Imagine his fear. He has
fought this beast for 15 years. 15 years! You don't say how old he is,
but that's a significant number of years. He's beat it back twice, and now
it's back again. He's scared that it will keep coming back, he's scared of
losing you, he's scared of losing control, he's angry, frustrated, sad,
confused. The reason he doesn't want a "reminder" is that he's got the
ultimate reminder, throbbing, ticking, growing inside his very skull. And
that beast robs us of many things. Ultimately, it robbed me of Dave.
I try to imagine what having that reminder in my skull might be like. And
while I did live with fear, closely, for a long time, I'm sure that my
imagining doesn't even come close to the reality of what it was like for
him. Dave looked death in the face every day. He carried it around in his
head for almost 9 years. What must that be like? And then I think about
what a crab I am when I have a headache or a cold. And then I'd think
about what Dave was dealing with. Wow. Humbling.
So my suggestion would be to respond to your husband's clingy behavior with
reassurance. It's a paradoxical thing I've experienced over and over,
especially in the parenting arena, but it's true for most relationships.
The more we encourage someone to move away, the more desperately they
cling, but once we say, "Cling away, I'll be here as long as you need," they
suddenly get brave and independent...why? Because the need underlying the
behavior was met, the person feels safe enough to venture out.
I'm going to paste a post that I sent to someone on another list about
finding the balance in a marriage when you're living with cancer. Maybe
something in there will ring true...
Love, Michelle
Michelle Meyer
PROUD wife of Dave
www.caringbridge.org/wa/davemeyer
"Serenity is not freedom from the storm,
but peace within the storm."
<snipped post from Nov 04, 2005 to btcaregivers list
"This road we are on is exhausting, treacherous. There is rarely true
peace. It's certainly not what any of us bargained for. Dave and I had a
tradition of watching the video of our wedding on our anniversary. Last
year, as we did that for the 18th time, Dave said, "Boy, if you'd known
what you were in for, you probably would have run for the hills." In that 18
years we buried one child, had another diagnosed with autism and lived with
Dave's tumor for almost 9 years. It was certainly not in the fine print of
whatever contract I'd signed! But I still would not have run anywhere but
to him. While the journey wasn't what I envisioned, Dave was EVERYTHING I
hoped for, everything I needed. The road we walked together was hard.
Beyond hard much of the time. For better, for worse, in sickness and in
health, we hit it all. But I wouldn't have traded a moment of that roller
coaster ride with Dave for a safe, sedate walk in the park with anyone
else.
The balance in our relationship certainly shifted over the years, over the
course of this disease. I don't know that anyone actually has a "normal"
marriage. Couples have to find what works for them. For us, it was
ultimately important that in all things, we were together. We didn't
always agree, but we were always a team, on the same side. Dave was a football
coach, so football analogies come easily. Each part of the team is
important to the whole. The quarterback may seem to be in control, but he
can't do his job without the protection of the o-line. The receiver may
run into the end zone, but he couldn't do that without the qb passing well or
the blockers doing their jobs. So, while many thought Dave was depending
on me, or that I was doing so much, in truth, they just didn't understand how
to value all that he did, all that he was. He was more than my equal. He
was my everything, my support, my protector, my hero. In the end, even
after he had lost the ability to walk, to talk, Dave would pat his chest,
wanting me to lay my head on him so he could stroke my hair, to give
comfort to me. No, he couldn't take out the garbage or pick up the kids from
practice or help me make any decisions. I won't kid you, that was awful.
But that is nothing compared to what it's like to not have his presence
here. Kate was sick last week. At 4 am, as she threw up again, I missed
him so. I remembered past times, holding a sick child, looking over that
feverish little head, to see Dave's eyes smiling at me, saying, "It's ok,
hon. She'll be fine. You're such a good mom."
Life is never what you expect. They say life is what happens to you while
you're busy making other plans. In the bt world, we didn't get the life we
wanted. We got ripped off. You're right that not many people in this
world really understand, the ones who "get it" are few. And it's okay to have a
lot of big, sad, angry feelings about what you're going through. Really it
is. But don't stay there too long. If we spend all our time grieving the
life we don't have, we miss out on the one we do have. And there are still
blessings here. There is still joy.
Your husband is still here, still in your life, still in your arms. That
in itself is precious beyond belief. Treasure it. Take a moment to breathe,
fully, deeply. Look at his face while he's sleeping. Tell yourself the
story of how you met. Remember why you fell in love with him. Hold on to
that feeling with all that you have in your heart. Remember, you're tired,
you're drained, it's true... but he's fighting for his life. Like others
often simply cannot fathom what you're going through, we as caregivers can
imagine, but not truly know what it is like for these warriors. All we can
really do is love them, honor them, and walk beside them. I think at the
end of our life, we will ask ourselves: Did I love? Did I love all I
could? Focus on that love, that connection. In the end, it's all that
truly matters.
I don't know if any of these words are wise, but they are heartfelt and
come from love. Michelle"