Need Objective Input/rant-sorta OT

[kate1621]

Hello,

Well, here's the scoop: J's done 5 days of chemo/radiation. Morphine is helping pain, when I can cajole him into taking it. He's dealing w/nausea, dizziness, weird paralysis on left side of face (??), not feeling so hot in general. He has anti nausea medication at home, plus ativan, which I've been giving him at night to help him rest.

My schedule looks something like this:

7 am drive J to hospital

8 am leave him for about 90 minutes, try to run errands/work

9:45 back at hospital, stay w/him when chemo is being administered

12:00 Home again

12:30-3:00 pm work

3:00 pm chores/meal preparation

4:00 work

6:00 pm supper

8:00 pm work

10:00 pm sleep

1:30 am work

4:00 am sleep

6:00 am get up/start all over

My job is inbound customer service rep, I telecommute. I have some flexibility w/hours. I can work in 2 hour increments throughout day. I also take laptop to hospital while he's getting chemo. However, that is the only flexibility I have. The boundaries are strict. I must have silent/professional work environment, all calls are recorded/monitored, and even a noise cancelling headset isn't fool proof. If I must cancel a shift, I must give 24 hour's notice, and I must be productive. There are percentage requirements that are stringent. If I fail to meet adherence, I lose bonus shifts-$$.

J's parents are highly disturbed by the fact that my home phone rolls directly to machine when I'm working. They refuse to leave messages on machine. (I have caller ID). He calls them daily, to the point where I have to schedule work around his making calls to them. If they're not home when he calls, the stress increases.

Yesterday, while I was working, J's mom called twice during hour. No message on machine. Few minutes later, I hear this bellowing in my kitchen. There she is, calling for him. (he was in back room) I had to immediately log out of company server, due to noise. She decided that because we couldn't answer phone, she'd drive over to say hi, even though he'd already called her that morning to check in. I ended up losing 4 hours of work time/bonus time.

I have 2 frustrations. 1)work is work, she wouldn't show up at his job, why show up at mine? 2) She just walked in. I find this to be incredibly rude. We aren't close. In fact, we've had 1 (not so pleasant) conversation in 3 years. My friends know that I value my privacy, and need my work space to be quiet, and understand that this is a boundary for me. For me, it feels like a blatant disregard for the fact that I live here too. Her son is here, so she can do whatever she needs to do?

Is she entitled to unlimited access to him in my house??

It turned into conflict w/J and I. What kind of son would he be if he didn't side w/mom? (his words) I got all the excuses, she's scared, misses him, is worried. Fine, how about some common courtesy? How about scheduling a visit? Not to mention the fact that my house is a mess, and the last thing I need is unannounced company. I'm just glad she didn't walk in at a more "inappropriate" time, or when I was coming out of shower in a towel.

Is this common for family members to do w/a cancer diagnosis? Can someone play devil's advocate? I'm totally disghusted. I can't count on her for any type of support, all I get is aggravation. Isn't my plate full enough? Will this get easier w/time?

Insult to injury, when we return to hospital on Monday, we're starting w/conflicting instructions. Nurse says only cisplatin, yet my notes, plus chart from Oncologist shows vp16 and cisplatin. Does one hand know what the other is doing?

I guess part of my stress just comes from the fact that I'm sleeping 2-3 hours at a time, and am running all the time. Sorry to rant.

Kate

-----------------------------

[Remembering Dave]

Kate,

One caregiver to another, I really really "feel your pain"

first of all, I'm sure most of your frustation is from lack of sleep. I can pinpoint that right away.

Is there any way you can consolidate your working time so that you can sleep at least 4 or 6 hours at a time?

Can J's mother take him to chemo?

Can the three of you sit down and discuss a game plan to help him? and to help you? Is it perhaps time to start communicating, call a truce, clear the air on whatever makes your relationship bad?

It's time for everyone to come together and do what's best for J. and that requires some good open communication.

Keep us posted,

Karen C.

[Donna G]

Hi, I had pancoast tumor, Took Cisplatin, and VP16, and daily radiation. I took Cisplatin only once a week on Mondays but VP16 5 times a week. It was a while ago. I did this for part of December and January. Then mid Feb I did have my right upper lobe removed, they said there was no tumor left , only scar tissue. In March I resumed the Cisplatin and VP16 until in April because of the development of neuropathy I missed the last sheduled week. I did not have face problems, only pain in chest and shoulder . Mary Ann , I believe ended up having to have several ribs removed also . I don't remember her having face pain. That tumor does press on blood vessels and nerves though. Hope you start getting into a schedule that gives you a better sleeping pattern. Is there any chance that someone else could drive him? People from my church were great for me On Cisplatin day they did drive, in the evening my husband came after work and picked me up. Keep us posted Donna G

[kimblanchard]

Hmm. A couple of suggestions. Since she is bound and determined to be part of this - like the others said - make her part of it, preferably a part where you are not there, too. If not the driving - maybe there could be a time each day when it is her time, like she comes over every day 2-5 or something and they stay in his room, watch TV, whatever.

Do they live close? Maybe you could even drop him off on the way home from chemo while you go to work at home for a few hours. She could bring him home for dinner?

About the phone machine, if they don't want to leave a message, it is their loss, don't even worry about it.

As for the door, get in the habit of locking it. I know, you shouldn't have to do that but in the long run it is better for you. It will keep unexpected people out and it will relieve your mind.

[kate1621]

Thanks so much for being here.

The circumstances aren't really conducive to J's mom providing certain supports. Both of his parents are elderly, sickly, father cant be left alone long enough to share in transporting, she's got many serious health issues of her own.

A counselor said it best when he said that her behaviors/value system are toxic to my well being. There's no particular "hatchett" that can be buried.

I am going to have him schedule a set time for her to come and visit, even if it's every afternoon, so I can get out of the house. I could take laptop to friend's house to do paperwork, or take a nap.

I've also compiled a short list of things she can do to help, and hopefully it will ease her sense of helplessness. Pick up groceries when she does her shopping, etc. I know that he'll be worried if she's upset, so I am committed to trying to be compassionate of her needs too.

I just feel like my house has become a free for all, and I really need to maintain a little order, and our income. The frequent drop ins from well wishers is really a challenge w/my work schedule. That's why I try to schedule short shifts, w/many breaks through day.

My job is non-negotiable. His job is too physically demanding for him to do right now, so our income is seriously affected now. We're going to be struggling to pay rent, and feel strongly that we need to move. My job is crucial right now. Will definitely start locking door.

The chemo ends on Monday, so just doing the radiation will make my schedule a lot easier, too.

He was up sick all night. He is soooo sick today. Not holding water even. He's in a lot pain too, throwing up the morphine too.

Thanks so much for being here.

Kate

[bellringer]

Poor you!!

You seem to be an amazing person, juggling everything & concerned for your in-laws too! I'm in awe of your ability to remain sane. It seems like you have figured out what you can do to ease your situation. I wish you luck & again want to say how much I admire your persistance & caring. Good luck!! claire

[Ry]

Oh honey can I relate to the mother-in-law part...except my problem is she doesn't want to help..just criticize.

I remember the beginning of this so well, I know its hard and tiring. I wasn't that tired even with a newborn in the house. I can remember leaving my job just to sleep for an hour or so. I was so exhausted I was near tears most times and the littlest thing set me off. Ok, sorry committing a post jacking here..back to you.

It will get better. Pretty soon the treatments will be done. It will get better, honest. Giving her jobs and something to do is a great idea, making dinner would get great. Making soup for him to have in the house would be nice. One of things I really appreciated was people bringing dinner and my mom would do our laundry periodically. People always ask if there's anything they can do..so give them something. When he starts to feel better and perk up send him to her so you can work. She will be in heaven.

Hang in there. Take care of yourself and try not to get run down.

Rochelle

[Snowflake]

My first marriage came with the mother-in-law from hell. Of course, marrying a "mama's boy" is a bad crime for a girl to commit, nothing will EVER be good enough, etc. (But hey, if you've been married to this guy for any time at all, you already KNOW that dance and all the steps...)

So, from my bag of evil tricks to yours...

Lock the door and install a bear trap under all the windows. Screen all calls - if they can't leave a message, it must not be important.

But seriously...

Set some groundwork in place - set your "business hours" and post them on your door like any other establishment. During "business hours", Mom or other drop-ins can visit quietly in another area of the house OR they can just wait until business hours are over and visiting hours can begin.

Part of this involves an attitude adjustment from your husband. She may be his mother, but you are his wife. He needs to grow up some and realize that his relationship with you is CHOSEN while his relationship with his mother is...well, NOT the primary one he is in. YOU should come first, dear, he LIVES with you!

Believe me, I understand that he is sick, but that is no reason for his manners to take that deep of a dive. I wouldn't expect him to be the "Host with the Most" right now, but humane treatment of his ENTIRE family is a must. Set some ground rules...decide what you NEED, what is important to you, and stick to it. Be firm, don't let 'em weasel around you. Your mental well-being is an important part of hubby's care. If YOU ain't happy, ain't nobody happy!

...and if they STILL give you crap and team up against you, let me know and I'll straighten out the MIL at least...

I wish you luck and hope you can find the strength somewhere to make it easy on everyone involved and organize a family care-net. Life is hard enough, throwing sand in the gears sure doesn't help!

Becky

[jamie]

Kate,

You do have alot on your plate. My advice??? Just Breathe. Sit and Breathe. Everything will still be there after youve sat... but your going to pop like a balloon if you dont slow down. I know it sounds impossible, but you need ot rest every now and then. Noone can take all that stress with out going bonkers... Just breathe...

Jamie

[Melinda]

Oh, Kate--

It is so hard being under all that stress, needing to take care of your husband, the practical household matters, AND feeling like the "bad guy" vis a vis your MIL. It's a wonder you are still standing!

She sounds like the MIL in "Everybody Loves Raymond" x10!

LOCK THE DOOR!!!

I understand that she, too, is terrified and wants to be of help (he is her son, after all)--but she needs to be realistic about what behavior is helpful. Your thought about setting a "regular" visiting hour for her sounds like a good one--also the adding a few groceries to her list (although--be prepared--she may add or delete as she sees fit!).

J. sounds too sick to talk some sense into her right now (if that was ever his strong point--it's a tough thing for some guys to tell their mothers "no" or to politely "back off" and respect that they are no longer living with them, with their rules).

You must, as everyone above has said, set some boundaries to not only take care of yourself--but to make sure that you are able to take care of BOTH of you right now. As you have made clear--your job is NOT to be taken lightly at this time (not that it should ever be--even if you had a million dollars!). Feel free to make that clear. If they don't get it--that's their problem. This is not play-time.

I guess talking to your FIL is out of the question, as he sounds rather frail himself...

Just remember--YOU ARE NOT THE BAD GUY HERE. You are doing what needs to be done to take care of your husband in his time of need and make sure that you both still have food to eat and a roof over your heads. My hat is off to you for living up to this task during such a difficult time. Many people (both male and female) have buckled under this kind of pressure.

I sincerely hope that you are able to get a little more sleep and that your MIL and various "well-wishers" are able to help, not hinder, your efforts.

Please keep us posted--you are in our thoughts.

Melinda

[Elaine]

I hope that people take care of others out of love and not a sense of obligation. One thing we fear as sick people is that we are a burden or an obligation. Not all of us, but the thought has crossed a few of our minds according to people I have corresponded with or talked to.

elaine

[cathyjack]

Kate,

Oh boy can I relate to the mother n law that won't go away!! But it did get better after awhile, once she accepted what was happening and a little time passed,but during the height of it I thought I would lose my mind so I can really understand your frustration. I don't really have any advise expect talk about it to who ever will listen. I think it helps to vent.

Good luck and I will keep you all in my prayers!

Cathy