Caregiver burnout

Well I think I am there. I believe I am suffering from an acute case of caregiver burnout.
I just spent 65 clams on caregiver self-help books on Barnes and Noble.com. Since my run-in
with the rudest therapist this side of the Mississippi, I decided I might read my way to better
emotional health. I am an avid reader and pending finding a new and improved
shrink, I realize I need help now. I vent a lot to my mom and sisters but it is a heavy load I carry
and I'm sure it's difficult for them to hear at times. My poor sister called me tonight to ask
about her babysitting Olivia so Tim and I can go see BRUCE on Monday and I had just woken
up from sleeping through dinner. I walked upstairs after another tough day of being beaten down and taken for granted and said "I quit, make your own dinner" and told Tim to take
Olivia to vacation bible school himself. I told my sister all that was bothering me and I know
that my family is very worried about me. I don't even recognize this worn out woman in the mirror that looks back at me. My health is starting to suffer. I am finally sleeping now that
I am not kept up with a sick dog and still I am exhausted during the day. I have been warned
by many folks, including my pastor and the social worker we saw before Tim's transplant
that many times the caregivers do not do well. I have even been told 2 0r 3 times "we bury
caregivers all the time." THANKS for that. Some people really need to censor themselves.
It's truly incredible what comes out of peoples' mouthes sometimes. But I am sure it is true.
I feel like I am drawing from an empty well everyday trying to come up with the strength
to keep going, catch up with everything and keep all these balls in the air. This girl is tired
and frustrated and depressed and fed up. I joined a book club and went to the first meeting
last week. Would you believe after all my threats lately that I am moving to a deserted island,
that is what this month's book was about. The woman self destructs and takes off for Jamaica and swims, drinks a little beer, smokes a little homegrown and tries to find out who she is and what
is important to her now. SOUNDS LIKE A PLAN TO ME!!! I realize that I have been a caregiver all my life. I was the mother hen
in my family and the shrink to all my friends. I have always been the one to call when you need
a hand. Unfortunately, this was not reciprocated when I wound up with a life-changing health problem. I guess when you are a caregiver type, you attract those who need that. Takers will
always gravitate to givers. Makes perfect sense, doesn't it? I wound up taking care of a family friend last week who had a blood clot in his leg. He
is a widower and I took him to the hospital, took care of his dogs, was his advocate, picked up his meds and gave him
his shots when he got home till he started doing them himself. I was happy to do it though because he is a giver and would do anything for anyone. It actually took my mind off my own problems for awhile too. It does feel good to do for others. It heals you in a way to be a help but there are limits. It's no wonder I look the way I do.
I never do a darn thing for myself. It's got to change. I am going to be no good to anyone if this
goes on. When we got together with the folks Tim had his transplant with, I heard him say something that stopped me. Both Tim and Jim push their MM out of their minds as much as
possible so they can live their lives as normally as possible. Jim's wife and myself are the
researchers. Tim said,"Denise has lived this more than I have." What he meant by that is that
it has been on my mind more and I have immersed myself in it. I do not believe for a second that
my situation is harder than Tim's. Even when I hear patients say that they think it's harder on
their spouse, I think that's nice to give a caregiver credit but I would never go that far. But I do
realize I need a break. I don't know if I can stop myself from learning how to help Tim but I have to start taking mini vacations from it or I'm gonna really hit bottom. In the last 16+ months, I
have both felt stronger than I have ever felt in my life and weaker. I revved myself up for his
transplant to muscle everyone through it. I was like superwoman and I was so knowledgeable
about the whole deal that all the nurses thought I was a nurse. A few docs did too. But all this stress is catching up to me now. Luckily, after all
that has happened, my husband feels and looks incredible now. Everyone tells him and
me that(one more person just 2 hours ago). I on the other hand, look like I've been clobbered with chemo or something. The ladies are crazy about Tim's curly hair and Mr. Sexpot is gonna dump me for a hot blonde if I don't shape up!
Just a little "heads up" to you girls out there, he is HIGH MAINTENANCE. So it's time to spend
a little time on me now. First stop, a massage at my old friend's place. She sent me a coupon for
a free massage for 2 and we have never gone. Tim won't commit so I'm going my darn self. It's
high time to fill the well back up. I don't think Jamaica's in the cards but maybe I should wear
one of those dreadlock caps down to Cape May next month and pretend! YA MON!

Hypochondria

A friend of mine who had her children young and long before I had my daughter once said to me,
"If you ever were afraid to die, wait till you have kids, you'll be petrified of it." My thoughts on that are "Thanks for sharing." But I never forgot she said it and she was right. It made a big impact on me especially coming from her. She was raised in a very religious household where
her father was even a deacon of their "born again Christian" church. She had a firm belief that
you died when your number was up and she seemed at ease with it even mocking me whenever
I put my seatbelt on when we were riding in her 1974 Volkswagon bug. She used to tell me with
a laugh, "that's just one more thing they'll have to pull off your charred body if we crash in this thing." My apologies to any bug owners. Anyway, when Tim was diagnosed with MM, I began to
have nightmares that I was also diagnosed with cancer and noticed a bit of a spike in an already
present but mild hypochondria. I guess this is pretty common especially when you have a young child and not any real good option for anyone else in the family to raise her. So last night as Tim and I are going to bed, I notice a pain in my groin and it turns out I seem to have a swollen lymph node there. I broke out into a sweat immediately. I went back downstairs as I felt on the verge of losing it and did not want to do that in front of Tim. Ya see, he was always the healthy one and having him get sick freeked me out in many ways but I always felt that if I checked out,
he'd do a pretty good job of raising Olivia. He is a great dad. I never thought he would get sick. After all the research I have done on MM, which is considered like a lymphoma as well as
all the people I have met and some who were just diagnosed with it, that was my first thought
when I felt this painful lump last night. I have not been a very lucky person when it comes to health problems. Though I always follow that with, many have had things much worse. But when
you feel like you've had nothing but bad luck, you think you are so vulnerable to anything. I am trying to keep myself calm about this. I have a lot of bug bites and a cut up toe from a stubbing
a few days ago. I have had a lymph node in my chin blow up on several occasions from having
skin breakouts in that area. Of course I went on the internet this morning and it is common to have lymph nodes blow up from any kind of infection or wound and one site even metioned a
stubbed toe but Hodgkins disease also came up when searching swollen lymph node. Do I give it
a day to see if it goes down or run righ to the doctor? I hate going to doctors. I could go on all day
about the major medical screwups that have happened to me all caused by doctors. The visions
that ran through my head last night were unspeakable. So scary. When I was 27, I thought I had
gall stones and a doctor told me after a sonagram, "you have a swollen pancreas and it could be cancer." The diagnostic test for this is a bit like an endoscopy but they search for a little hole in your stomach that they shoot die into to take x-rays of your pancreas and gall bladder. I darn
near bought it having the test as I had a bad allergic reaction to the demerol they used to "try" to put me out. The doctor then used just versad and I woke up several time during the procedure as they were shoving a tube down my throat. Not one of my better days. He wound up having a hard time doing
the test. I don't think he could find the hole to shoot the die and it was somewhat inconclusive.
I woke up to. "Well, we don't think it's cancer, come back in three months for another cat scan
and we'll see then." Translated, if you're alive in 3 months, that's a good sign. This is just one time out of several that I was told I might have a life-threatening disease and was then told,
probably not. I know the fear of this both not having a child and having one. It freezes the blood in your veins either way. So today, I do the hypochondria dance with myself all day. With the
exception of some real fatigue problems which I've had forever, and this stupid lymph node,
I have no other symptoms of lymphoma. I think I will give it a day and put some antibiotic ointment on all my cuts and bites and see what tomorrow brings. As always, my prayers go out
every night to anyone who has had a cancer or other serious diagnosis. And I sure hope that this
turns out to be nothing. We are full up with tragedy around here.

The great thing about people with cancer

It always happens that just when I'm about to give up on mankind, something or someone comes along to restore my faith. Yesterday we got together with the folks Tim went through his stem cell transplant with. Two of the couples are in their early to mid sixties and the other gal is a year or so older than Tim,45 or 46. She brought her boyfriend. The two couples live in PA and so
we meet halfway at a chili's out route 80. I am a pretty chatty person and we all did the transplants outpatient and stayed in the same condo complex together so a bond was formed and although I hate what brought us together with these fine folks, I am glad to have them as
friends now. We all e-mail each other and have kept in touch and spending an afternoon with
them yesterday soothed my soul after the really tough week we have had. I had a long un-diagnosed health problem for many years that sincerely affected the quality of my
life. It taught me at a young age what is important in life. Most people my age then and even now have not learned that lesson. I also live in a somewhat affluent area. Though we are firmly ensconsed in the middle class, we live around some very wealthy people. Though I don't like to
generalize, the fact is a lot of people around here are obsessed with money and appearances and
a lot of things that hold no real value to me. I've many times thought of moving but I don't want to move from our families. Our daughter is an only child who is fortunate to have a realtionship
with all 4 grandparents ( I did not have that) and I can't take her away from that. My husband's
business is built on his reputation and moving would have us starting from scratch. Now that Tim has MM, moving is not an option. Although we could find a place with an MM specialist,
you can't give up your support system when dealing with MM especially when you have a young child to look after. We also go out with another couple whom I met through the support group at
Tim's doc's office. Same age as us. It's not that we spend all our time with these folks talking about cancer. We do compare notes and information and share laughs about things too but it is
so different hanging out with people who have their priorities straight and are way past the
"keep up with the Joneses" garbage. The warmth and support is priceless. I actually teared
up when we got there yesterday and I saw everyone with their new curly hair and all looking healthy and
smiling. It was just what I needed to start to wash away the awfulness of the past week. So I
have to say, people who have cancer are evolved way past some of the immaturity that I just don't have the stomach for anymore. I have met some incredible human beings since we started on this journey 16 months ago. You have to take your blessings where you find them.

Isn't a therapist supposed to LOWER your stress?

At the risk of sounding like such a complainer these days, I have to tell the story of my week.
It really is almost comical if it weren't so sad. Since I really haven't even given this blog address
to more than a few people I actually know, I won't be offending anyone. Well I hope not anyway. Well we lost Sophie and that is the worst part of this past week. It was and is devastating and there's not much more that needs to be said about that. One of my daughter's best friends (and our good friend's daughter) has
been really betraying Olivia lately and out of jealousy and a competitive nature on her part has decided to try to turn a group of girls against our daughter. I felt it was going too far and spoke
to her mother as diplomatically as I possibly could. I thought we could handle this like two adults. Turns out I was the only adult involved. With a smile on and the sweetest of voices,
she did what I guess most people who cannot accept responsibility for something they or their kid did, she did the classic "deny it ever happened" in the form of "my daughter would never do that!" Sidebar here: she has had this problem with her daughter in her school before, and the second most common defense mechanism, pass the blame onto someone else thereby deflecting
attention off her kid. Somehow this is Olivia's fault and maybe she is not as mature as her daughter. I can't even find the strength to type long enough to tell you how backwards she has
that except to say that her daughter is obsessed with public potty talk and a parent at our softball game actually pulled me aside to ask if she had a mental problem or tourrettes. I am torn between ignoring all this or sticking up for my daughter and telling her how disappointed I am that she would go to such lengths as to blame someone else for her kid's behavior. God people are so immature sometimes. It's called REALITY people, it happens whether you can deal with it or not!!! What makes this worse is she sat her kid down and told her this theory not only giving her an excuse for her mean behavior but this kid now has one more thing to whisper to the "brat pack" about Olivia and her MOM told her this so it must be true.
Unbelievable. So I do what I thought about doing a year ago. I make an appt. with a therapist.
Tim is sooooo busy at work that we have to turn cartwheels to make this happen and I had a noon appt today. Tim and I both have miserable colds and woke up so exhausted. I felt guilty that he had to drag himself to the job early so I could make my appt. He is not great with time and often is late. He calls me shortly before the appt. and tells me he might not make it. GREAT.
I get my kid ready and tell him to pick her up in the waiting room of the office I am going to. He
totally rushes and gets home in time and off I go. I am tired, sick, in physical pain from a whole other situation and the counselor totally blows off the first 15 minutes of my appt. by staying longer with her last appt. not even coming out to say she'd be with me shortly. Now this is not like going to the regular doctors' office. You get a time and they are on time. They do not run over with people but today she did on my first visit. I was furious. Then I get into her office and
she is worried about her next appt. which she will be late for. She apologized and realized I was ticked and I thought, "how is talking to this rude woman going to help me?" She realized this
without me saying it and asked if this has negatively affected our session today. YA THINK?!!! I said " ya know, I should have been in therapy a year ago but I have had NO time to worry about me. I finally made this appt. My husband has cancer(she knew this) and he's sick and he just made himself crazy trying to get home in time to watch our kid. I am sick and tired and in pain and you are 15 minutes late!!! Was that a life threatening situation that you just had in here because I am trying to be understanding here?" We spoke for a few minutes and I realized she would spend the last 20 minutes of MY appt. watching the clock as she ticked off her next clent.
I said, "This is a waste of my time and you are rude" and I walked out. This was the cherry on the cake of my week. Ya know things are tough when even your therapist pisses you off!!! Just another day in the life. Time to find a new shrink.

A post for Sophie

Last week was a tough one and this one is destined to be tougher. Our beloved dog
is failing terribly and it looks like she may not be around another week. I feel guilty
even saying that, like I'm betraying her or something, but we had her to a specialist
in Yonkers last week and she is diagnosed with megaesophagus(causes constant vomiting)
and her back legs are losing function either to degenerative myelopathy(doctor calls
it Lou Gehrig's for dogs) or a serious disc problem that would require major surgery.
She is close to 13 and her quality of life is not good anymore. Tim is carrying all 65 pounds
of her up and down flights of stairs which he should not be doing and I have been doing it
also. (The small set of stairs and just down. I'm not nearly as macho as Tim.) As always,
the hardest thing is going to be seeing our daughter suffer. She is an animal lover and
has never been without this dog. We will not get a puppy as it is time to start travelling to
all the places we've wanted to go. I also feel pretty guilty that Tim and Olivia are going through
this pain. It was my idea to get a dog. Tim was totally against it as his dog died in his arms and
he never wanted to go through that again. I was not working and lonely and Tim was working so much that I told him it was
either a dog or a boyfriend. He told me to get a boyfriend. But she has had a good life. I hate to
see her suffer and it's just her time. We will be devastated and adding this to some of the other
really stressful things that are going on in our life, we have been ready to move to a deserted island. I think it's time to go hit some poor therapist's couch and unload some of this misery.
My mom and sister could sure use a break I'm sure. This girl can VENT I'll tell ya. I don't know
if it will help but it might be worth the co-pay if I can just sleep on the couch for 45 minutes uninterrupted! Do they even use couches? If I can't nap, forget the whole thing! Anyway,
just gonna take things a day at a time and try to keep Olivia really busy. Sophie is a great
doggie and a very loving "sister" to Livvy. She will be missed.