Caregiver Issues - Any thoughts?

[mary757]

OK, we've done the first few loops of the rollercoaster - Dx, discuss options,start rad -- and from all you've posted, there is no saying how long this ride will be. SO . . .

I'm flat out of sick/vacation time but need to get Mom to the Rad treatments and the doc visits. . .

The client is very irritated that he's not my #1 priority . . .

I'm really really irritated that he even considers being irritated . .

The company says they support me but then want me to take on 3 more employees and 2 more jobsites . . .

How on earth do I do this with any dignity???

I'm a split personality now - the cancer side and the worker side. So I get off one phone with a doctor/oncologist/someother healthcare provider to answer the other phone regarding work related stuff. It is a miracle that I can speak English to any of them.

So when does "normal" return - even a new normal?? And when do I care again about those critical issues that were so important pre-Dx? Cause right now whether the client wants tile or concrete floors in his building really doesn't matter at all; or whether his schedule is off by a couple of days due to a late delivery - "Get over it!!"

And what do I do with this dark funk that I dive into as soon as I leave the role of cheerleader, coach, cook, problem solver, etc??

So how does anyone else handle all of these issues without going completely mad??

Thanks, Mary

[tjrasMOM]

I have no perfect answer for you....however, I am so relieved or comforted to hear someone else describing the SAME EXACT EMOTIONS I go through on a daily basis. I am an adult ESL teacher. Mom's first day of chemo (June 14) was my last day of work until fall. Now here comes fall. I start work, my 2nd grader starts and my 5-yr-old starts kindergarten all at the same time. AND, even though Mom is doing better than she was pre-diagnosis, chemo starts up again 8/23. Not only do I teach but I also work from home selling online with my hubby. AND...I'm about to start a new part-time career in the mortgage world. I had it all planned out before Mom's Dx. I had cut my teaching hours in order to plan for the hours in the mortgage world. With both kids in school, I was ready to double my income by taking on a new career. (I can't let go of teaching adults because it's the best job I've ever had!) Now I'm just thankful that I cut my hours so that I can be with her more through the appointments. But my point here is that I'm so scared to get back to the work & school routine AND try to take on a new career part-time. With the housing market the way it is, I don't have much choice. The economy is changing and I don't want to lose anything. We need 2 incomes. But I NEED to be with my mom as much as possible. Especially after chemo starts up again and she isn't feeling as good as she is now.

Over the past 3 months I've had some real jerky customers online. It's common that people get ticked off if product isn't shipped immediately or we don't respond to their emails within 2 hours (they do this because it's all online and they don't have to face me)...but last month I finally snapped & let someone really have it in email, listing WHY I couldn't respond to his email within a few hours..... I never heard from him again. =) I've never done it again...but it felt kind of good to do it that one time. I think that's all I needed. I'm not suggesting this is how to handle it...LOL Just sharing.

I don't know how we get through it. I have found a support group for caregivers of cancer patients that meets very close to my home. I wanted to attend...but haven't found the time. =(

[dchurchi]

Mary,

As your mom's profile is not posted I am going to assume, based on your post

this is all very new for you. So take it from a 2.5

year "veteran" when I say, the new noraml will just

happen. You can't force the issue, but believe it or

not within the next few months or so it will just happen.

You and your mom will find a rythum that works, and

the next thing you know your new normal has arrived.

Unfortunatley they do not hand over a Caregiver handbook when our loved ones are DX.

We are thrown into a whirlwind, and you just hope to

land somewhat on your feet.

I was lucky in I could change my work schedule around

alan's treatments and hospital stays, and as of right

now he is once again stable, so I feel as if I am on

a cancer break. I also understand how you feel about work, my job used to mean so much to me, now it is something that takes me away from Alan.

Ok I rambled on much longer than I should have. Please send me a PM if you want to. Prayers for you

and your mom.

[tjrasMOM]

I have to add that when the day is over & I lay in bed, I know that the only thing that matters, is spending time with my mom. I can state all the facts of how my life has changed since Mom's Dx, how life seems to be so confusing and stressful, blah, blah, blah.....but, if I had to find the positive in all this........it's been the fact that I now KNOW, down to my soul, the true meaning of life. That it is so precious and spending time with mom, making her laugh....seeing movies together, watching her with my daughters....are the ONLY things that are important in our lives right now. No job, new or old, matters. I am constantly aware of how all I want to do is create more and more special moments with my mom. I have started keeping a journal. I write about every doctor appointment, every phone call, every joke, every tear that I share with my mom. I quote her daily.

And anyone who has been through this with a loved one has told me......just BE with your Mom, honey......Just BE with her. Nothing else matters right now. =)

So true.

[mary757]

tjrasmom and KatieB:Ok, I cannot complain; I have it so much easier than either of you I have just 1 job, no school, and no kids to explain why I am not up to their activities. Just a big dog who is still waiting for me to get up and run at 4 am like usual. Kinda tough to get up this week but tomorrow is another day.

dchurchi: You are right I'm a total newbie and Dad went very quickly - 72 hours - so I have NO experience. It doesn't help that the professionals are having a bit of trouble with the actual dx. They can't biopsy the actual tumor so the bronchoscopy only biopsied a couple of places along the bronchus and every appointment there is some new complication or possibility.

We saw the rad onc today and he is not certain that Mom will make it thru the 25 treatments without a break. He is making noise about a two week break and then resuming. This goes along with my gut feeling that she is just super fatigued and we're only at treatment #6. Yikes!!!

My backup help (my sister) is riding to the rescue this weekend. She and I had a huge discussion about what is what and how we can keep Mom in the game. Looks like we can double team for a few weeks anyway.

Doesn't solve the absolute KNUCKLE-heads at work. "We MUST have a meeting to discuss this issue" right at the I-gotta-get-Mom-to-radiation point to my day. We'll have that meeting, buster, right after I take care of some real business. Like tomorrow or next week or . . .

[ztweb]

Oh Mary...bless your heart. I can read that you are so stressed, and I wish so much there was something I could do. As far as my dad goes, the "new normal" came when dad was given remission. Nothing was ever normal, or has been, really, as just the other day I was posting how I hated the fact that we just didn't have anything the same. My dad is just different.

I think that with your new view on life, it is pretty normal to say, "Hey, you know this job thing is not nearly as important as life." Now...knowing that doesn't make the juggling act any easier!

Stay strong and know we are here...if nothing else, be sure you have a strong support system, aren't afraid to ask for help, and give yourself an out every now and then.

Blessings,

Jen

[tjrasMOM]

Mary,

It doesn't matter how much we all have to deal with in our OWN homes....whether we have kids or not, etc. Because what we all have in common is our loved ones who are sick. Regardless of what we have to do, we all understand what we feel as caregivers. You are going through a lot. And just as I am sorry that I had to search out this web site, I am sorry that everyone here has needed to find this web site.

.....although, I am so thankful I found this support.

[janehill]

Mary, I think Katie has an excellent point about you getting the perspective of someone whose outcome was favorable.

Mine wasn't but a woman on my team at work's mother has NSCLC (in a bizarre twist) and was diagnosed March 2007. She had a huge tumor pressing up against the arteries around her heart and the sternum. She was considered stage IIIA and was terribly ill when diagnosed.

This woman's focus became her mother. She talked with our boss and figured out a way to work from home and it's worked. She still works from home but in all of this time it gave her the flexibility to take her mother in for chemo and daily radiation treatments. Low and behold that last week they got the results of her PET and CT scans and the doctor said that though he's not very old, he's seen thousands of cases and never has he seen someone respond so well. She is "cancer free."

He credits this to the care his patient received by her daughter. She was able to be there during chemo and radiation treatments and watch what her mother ate, drank, meds - she became her mom's personal assistant and nurse.

I can't tell you how blessed she feels that her mother had such a wonderful outcome and in knowing she had such an integral part of it.

When her mom was diagnosed, they said she had "weeks" and their world bottomed out. She was now told to "go live your life and forget about illness, you're perfect."

That is the ultimate payoff we all seek for ourselves and our loved ones. And it's sweeter than whatever the cost to get there.

I know personally how impossible this time is for you but sit, breathe, relax, make a plan, figure out logistics and you'll get through this with a long future to share with your mom.

[mary757]

Thanks for the support! Today was a much better day on one hand since Mom was peppier and Rad didn't seem to drive her straight to the couch like yesterday. But Mom tells me that she has been coughing up blood for 3 days now. Not as much as in July but . . . if I call the doc he'll put her in hospital and she will NOT agree to that. So I'll monitor and see how we do tomorrow. We see pulmonologist and oncologist on Monday so the plan is to wait for now.

Janehill: I appreciate the positive story you conveyed. My company has been fairly supportive but the client is something else. I've requested to move to a different client but as I am the head of the "team" I kinda have to stay for now. Client won't accept a replacement

trjasMOM: I understand what you are saying and appreciate your words.

I have to say that the people at rad have been great. They let me help her get situated on the table since she is so frail and then call me back as soon as they are done. I appreciate their consideration of Mom's feelings since she wants her family to help. I suspect before much longer they will be part of our family

[Andrea]

For me I was completely insane in the beginning. I was balancing work and my mom's diagnosis and practically holding back tears during client meetings b/c all I could do is cry. It was soooooo hard to get back to the brink of sanity.

I pumped gas, went in to get coffee, came out and drove away and pulled out the gas pump b/c I was such a wreck Then I went to work and had to act normal and play attorney.

Slowly slowly as my mom got further out, I became a bit more "new normal" and was able to cope better. I am not sure how l ong it took, definately a few months. After the initial shock I sort of went well.

When my dad's diagnosis came, I was too numb and just was sooo used to it all.

One day you are just going to realize you are living life in the "new normal" with good and bad days. We are all here for you whether it is a good or bad day!

[mary757]

Andrea: Thank you, so here is a weird question - I work as a consultant in my client's office and the people there know that my Mom is ill. But when I am at work I am in my work mode and I don't really like to talk about my mom's illness or treatment. It keeps me from getting weepy or anxious.

So the people want to know how I am holding up so well and aren't I tough to keep coming to work? I don't feel that I am handling it well, just well enough, if you know what I mean. And I am a jet puff marshmallow and not tough at all. I come to work 'cause it allows me to leave the big C at least temporarily and cuz I need the $$.

But, yeah, I go to meetings and design stuff and do the normal things I'm paid to do. Then when get-Mom-to-radiation time comes I leave and put on my happy aren't-we-having-fun face, you know??

So if I fake holding up does it mean that I really am???

Mary

[Maryanne]

You're doing a great job Mary, taking care of your mom, juggling work with that client. You are doing what you need to do. Working is one of the best medicines at it does take you mind off the C for awhile. Even though your minds drifts back to the reality of it all.

You are a wonderful daughter and I know your mom loves and appreciates you so much.

Just don't be too hard on yourself. You seem like a very level headed individual and I can understand your feelings.

Please know that Iam thinking of you and I am glad that you are feeling better.

We are always here for you 24/7

Maryanne

[mary757]

Maryanne: You are right - Up until recently I would have described myself as level headed! But don't you know, that is part of my problem -

This disease has not been easily quantified, the treatment is not definitive, and the patient's response is not universal.

I'm a linear gal with an engineering background, I'm a problem solver by nature BUT I CANNOT SOLVE THIS ONE NO MATTER HOW MUCH I WANT TO!!

And that, in a nutshell, is the very core of my frustration.

I must believe that at some future time, I will no longer feel the pain as intensely, the setbacks so personally, and the need for answers so limiting.

Mary

[onlychild*]

I'm so sorry you are going through this. I really struggled trying to balance mom and work. Things started to fall apart... what hurt more than anything was the lack of empathy, understanding at work. Mom has always been so important to me in my life and I wanted to spend time with her and then I REALLY needed to spend time with her and take care of her, so I took a FMLA from work. It was the best thing. I tried to maintain some freelance work on the side to keep some money coming in but when it came down to it I cancelled any extras we didn't need and reorganized my whole life and budget and moved in with mom.

I miss my mom so much and only regret I didn't kick my work to the wayside sooner - I didn't know she'd be gone in less then 3 mos.

Not sure if this helps but I understand that struggle and am just so sorry anyone has to go through that. I have friends in UK whose employers didn't bat an eye when they needed time off, whether they were sick, hung over or needed to care for a family member or friend.

Am thinking of you and wish you all the best!

Warmest regards,

Kate

[mary757]

Little Update:

Mom saw Onc and pul on Monday. Not sure how to process the results. Onc was not happy with her extensive reaction (skin) to the rad since yesterday was only day 10 of 25. Not happy with her weight loss. This was the first time seeing the Chief of Onc - very nice doc btw. He emphatically stated that she must eat and drink more regardless of how she felt!

Mom saw the pul after the onc and he was even more disturbed by the weight loss, the skin reaction, and the diarrhea. When I told him we were at 10/25 he asked when radiology would do a CT scan to check progress. I told him not til after #25. He said "let's get a chest xray tomorrow". Also stopped one of the antibiotics for MAC. He is absolutely disturbed by the fact that she is eating 800 kcals on her best day. She was very upset that I spilled those beans but, hey, I wasn't going to let her say she was eating well.

Bottom line is that onc and pul are going to discuss stopping treatment well aware that she will not resume it. And chemo and surgery are so out of the question.

So today was absolutely horrible with the idea that the fight may be over before we've barely begun. We see the onc next Mon and the pul next Tue. Is a miracle possible??

Don't feel like a positive outcome is in the cards today. Just can't see it.

[dscherer]

Please know that many have very rocky roads that lead to positive outcomes!! Just try to believe.

WHen my mom was in treatment she lost alot of weight and I to "ratted" her out. I tried everything to get her calories up. We started doing Carnation instant breakfast with whole milk and fortified with powdered milk. We got to the point that each shake was over 600 calories. SHe still had to force herself to drink. Many times she would say through tears "I am trying my best"

I am so sorry that you have this struggle. Please feel free to PM me anytime.

Prayers are with you and your family,

Dana

[SBeth]

It is all about perspective. I would cut off my right arm to still have my life filled with all that chaos and stress. Enjoy the time with your loved ones, be it waiting in the drs. office waiting room, sitting in the chair watching them sleep, or sharing a meal. Everything else in your life will eventually return to "normal". Blow off steam, come here to rant because God knows we all understand, kick out some "feel good" emails to those that can't seem to get it...but at the end of the day, be grateful that they are still with you!

[Julienyc]

I totally understand the craziness. I live in NY and my mom and dad live in Florida. My father has been devistated by my mom's diagnosis and conceded all caregiving responsiblities to me. I had to move in with my boyfriend in February because I couldn't afford airfare every month and pay my rent. I had to drive my dog to Florida because I was never in NY to look after him. My brother lives 4 miles away from my mom and dad and has only gone to 1 MD visit and only because I forced him to go- talk about denial.

I have been shuttling back and forth nearly every week to attend MD appoints, scans, test, etc. I have been on the phone and email contstantly to get authorizations for treatment, activate my mom's disability benefits, retire her from her job.... whatever. I was so overwhelmed by it all the time... and still am depending on the day. Probably the worst day was at the end of March- my mom had survived a craniotomy in Jan, WBR in Feb, and had started chemo in March. I felt like all things were starting to gel. We had gotten thru so much and had put so much behind us-we were just moving along... shaky...but moving along. Then we did our 1st brain MRI 2 months after the WBR and her neurosurgeon told us her tumor was back. I was beyond devastated... we couldn't believe the news. I was so upset that despite my best efforts I couldn't control what was happening-- I went into action mode... and mom had gamma knife in April... and now 4+ months later we are stable... a place I never imagined we'd be. It is only in the middle of June that I had a reprieve from panic attacks about my situation I still have them but less frequently.

Luckily, I work for myself so I could be flexible with my schedule but my business has suffered... I work as much as I can remotely and I do what I can... but my priorities have changed completely... and I've never had a clearer sense of purpose. My priority was caring for my mom and making that decision was the best I could have made. I don't know what tomorrow will bring but I know my family is priority.

You are doing all you can... and I'm sure your mom is cherishing the time you are spending with her as much as you are. I hope you can find comfort in knowing you are not alone in your struggles- I always felt better after reading posts that conveyed a similar plight- I wasn't alone... and you aren't either. You will get through- you can't accomplish everything all at once... take it one day at a time.

[mary757]

Well you guys were right! Mom is proving to be tough. She has made it through #14 and her massive coughing miraculously just stopped. No easing up then stop just STOP. So she feels like something is working even tho she is tired all of the time.

Weird tho, pul took chest xray last week and saw no change - we see him again on Tuesday. See rad onc on Monday for weekly update. Mom is committed to 5 weeks - she is not sure she can do more. Rash is still bad but not worse than a week ago.

So a bit of hope, we'll see.

Thanks for all of the good thoughts; I think they're working!!

[blueeye]

Hi, I just wanted to add that I totally know how you feel! Except that I work in the lab at the hospital and have to switch from daughter/advocate/caregiver one minute to lab tech another--often with the same nurses, docs and PA! That's kinda awkward to say the least.

What are you guys putting on the rash??

[mary757]

Blueeye: I can't imagine mixing work people and hospital people; that must be so difficult. RadOnc gave us Rx for Lidex. Doesn't cure it but takes the itch away. Techs just ask to have it wiped off before the zapping session. Then we reapply once Mom is done.

Mary

[raeh]

Driving down the road today; some lady was following behind us so close she could have almost zippered up the back of my dress. I'm trying not to lose patience, thinking I have precious cargo in my car, so what do I do? Give her the finger in the mirror, not once but twice... what a stupid way to let off steam because work still wants you to work, but you also need to be a daughter, care-giver, mother, wife, and everything else, and a cancer care-giver. Whew.... no wonder we don't feel we can cope, but somehow we do end up making it work.... let go of work/job as much as you can, realize time is short with your parent....

[mary757]

Raeh: That was too funny! I totally understand but cannot make my hand do it!!

Hope the rest of the day goes better.

Mary