Mom's Cancer and My Caregiver Stress

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

Hello all,

I've been posting here for a while.

My 80-year-old mom was diagnosed with Stage 3B Pancreatic Cancer in June 2006. That year she had the Whipple surgery. The margins were not clear and 7 of the 20 lymph nodes were positive.

In 2007 she underwent radiation treatment and gemcitabine chemotherapy. She was done by summer 2007 and no further treatments progressed. She was however checked via tumor marker every 3 months.

In Spring 2008, her tumor markers started to rise. A CT scan showed a very small tumor in the tail of the pancreas. The Oncologist got her back onto gemcitabine chemotherapy and radiation was not an option. The gemcitabine controlled the cancer growth until January 2009.

In January 2009, the tumor markers jumped up again. The Oncologist did another CT scan and a second tumor appeared in her right hip bone at the spine. She received radiation to that tumor to reduce its growth. The OC gave her xeloda chemotherapy in oral form. She handled it well for two cycles, but her tumor markers continued to climb. The OC took her off the xeloda and has ordered another CT scan. The OC is not saying much, but he does not want to keep poisoning her. He has made it clear that cancer is not responding to the chemo. He keeps giving her hope, talking about more gemcitabine, even though I know we are in the last days. We will be seeing the OC on Friday.

I am living with her and I have already been diagnosed with Caregivers Stress. It has turned into full blown Posttramatic Stress Disorder. Since I live with her 24/7, I see and hear every step down she makes. Caregivers stress is bad, I'm starting to get into the anger and resentment again. The last 2 months have been very kind and loving between us, but the stress is getting to me big time and my mom is generally abusive. I feel like I'm all alone, watching her die and no one else understands or seems to care.

I'm wondering why she is not put into hospice. That is not just for her, but for the family. Without the hospice set up, I feel like I'm the one who will be here alone while she dies. I think the OC is not ordering hospice to keep my mom's denial intact, so she doesn't need to accept loosing the cancer battle and death. I can see her going down hill day to day and I'm mad that I don't have the hospice support. Of course I'll be telling the OC this on Friday

For me, I am trying to get an appointment with a psychiatrist because I think I'm going to need medication for myself.

Help and support welcome...

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

SS:
My Mom is 82+ and in Hospice.

I'll have to add the usual disclaimer = EVERY case is different - just to be fair

I know exactly what you mean by the stress even though she is not at all abusive to me. Just the workload & worry is enough to get you down.

Hospice can certainly help on some levels but being in it 2 weeks today, it's not nirvana. You still have the worry & workload when they are not here.
Each Hospice I'm sure is run different - in home vs hospital vs specialized facility. We are at home & do not have 24 hr aide service in fact 50% of the aides being sent are so incompetent, I've stopped accepting them.

We did have Crisis Care for 3 days which provided a nurse for 12 hrs in the evening thru early am = great help so I could get some sleep.

The only stuff I would suggest
1) See if your Mom will admit she is ready for Hospice
2) See If the OC will admit there's really nothing that he can reverse or save her life
3) See if your Primary Care Dr can help
4) See if there is a Palliative Care Dr, counselor, etc that you can access for help.
5) Read up / research Hospice services in your area & go talk with them

Hang In There - try to avoid medications for yourself - see if you can enlist help from family, friends and even Hospice volunteers

Good Luck - I know some of what you feel.

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

I just wrote a big long rant, but then my mom 's OC called.

She will be placed on hospice and they should be coming by this week. That was all I wanted.

The OC said her prognosis was very poor, I believe he said terrible. He wants to see how healthy she is now that she has had a break from radiation and chemo. If he thinks she can take one more round of a mix of chemos, he will give her one more chemo treatment. If not, the cancer will take over soon. Even if the next round of chemo works, once done, the cancer will take over.

Her CT scan showed minimal growth in her tumors, but there is a blood clotting issue. I was worried about that too, I know there is a 50% chance she could have a stroke. I'll have to ask some more questions when I see him next week

All I needed was a little reality of the situation and hospice support.

My 80-year-old mom and my 75-year-old aunt have used denial to get through. That will not work on a young 36-year-old son.

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

SS:
Glad you were able to get the OC to move her into Hospice.

One of the best things in Hospice = totally different approach / focus.......mainly Comfort for the patient.

The team (nurses - social worker - counselor-Dr, etc) that will be involved will have LOTS of experience & will help you.
Again, every situation is different but it should be better.

You might want to check out the Hospice - Lessons Learned thread I started. It might help in some way.

Also google Hospice & Palliative Care plus the Hospice Org they are admitting her in.............if you have not done so already.

Hang In There

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

I've been reading your threads on hospice because - I wannaknow too Wink

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

SS:

LOL - LOL Very Happy

Humor & Music have help smooth a few bumps.............being in the forum let's know we are not alone

Humor - I've looked for a few tv shows or other diversions like talking few a few friends where we can laugh.

Right now I'm watching NCAA b-ball while Mom takes another nap

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

Oh my God, the stress is beyond...

I'm sure I'm going to crack-up.

Unfortunately, I am isolated in the country with no way to get out and get away. My friends don't live here. I only have one 75-year-old aunt. I love these two old ladies, but having to live in their world is pushing me over. I'm finally getting Netflix, but please, I can barley concentrate on TV as I listen to my mom 24/7.

I'm kind and loving, baking fresh cakes and cookies daily with new and exciting dinners my mom never dreamed of. I'm grateful she can eat and we have had time to heal and bond.

But I feel like Dr. Jekyll and Mr. Hyde and Mr. Hyde is angry and nauseated and making me sick.

That is Caregivers Stress.

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

Maybe we should open the thread up to compare Caregivers .......smile- please

small example - I came to check on my Mom 32 days ago (but who's counting) for a 48 hr trip.............and have yet to go home - as the improvement I was anticipating after living & helping her for 4 months never materialized..........now she is in Hospice

I know is all that I will say.

BTW - you can watch more NCAA b-ball on-line for free

Gotta go finishing washing the few clothes i have here - I took most home 'cause I thought there was no need...........

Seriously, I do try to push thru those real bad stress points by thinking
1) She has cancer & I don't - so I'm lucky
2) Still my Mom and I'll miss her when she is gone
3) Just "ego" complaining vs your GOOD soul that has you there in the 1st place..........ignore that ego voice

Hang In there - You are doing good work Cool

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

OK - I do loose it then get it back again.

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

SS:

Seriously, another one I try to remind myself often = Acceptance

The spiritual theory = Often things seem overwhelming & frustrating because we resist them (often in many ways) - if we Accept the reality - the situation we are in, then the path becomes clearer & the load much lighter. Our energy can be re-directed toward solutions or getting things done rather than resisting.

Believe me, there are lots to resist with an 80+ yr old ......I've got one too but resisting does not make anything easier.

Sherry · Regular Joined: 30 Dec 2008 Posts: 45 Location: Missouri

Ok, since you're talking about stress, I'll tell you how I'm coping which is not very well. My MIL passed away on Feb. 3rd. I keep having sinus infections that I can't seem to completely ever get over. This has been going on for months. I'm on two anti-depressants. One that brings me up during the day and one that takes me down at night so I can try to sleep. I haven't slept a whole night through in months. I get anywhere from 2-4 hours of sleep a night. I'm exhausted all the time. My knee, hip and shoulder joints hurt all the time. I have a lot of headaches. I eat very healthy and try to walk at least 30 minutes a day or do some cardio.

I have a step-father-in-law that has Alzheimers but still is living on his own and probably shouldn't be driving. He comes over to eat dinner with us every night and always says at least one thing off the wall. He has been talking about other women and stopped to see one 2 1/2 weeks after my MIL passed. Wednesday he said he wouldn't be over to eat on Thursday and was really secretive about what he was doing. He even called me the next day apologizing for being so secretive and said he was going to the gambling boat but still didn't say who was going. He always tells us everything he does and who he does it with. I just think this is so disrespectful to my MIL. He's 78. I keep telling myself he has Alzheimers and maybe this is why. He seems in his right mind most of the time, but you still notice things aren't always right. He is moving in a couple of weeks where his daughter lives and I can't wait. I don't want to be responsible for him and know that he's messing with other women already.

Plus my daughter is getting married in two weeks and she has gotten so cheated on the planning of this wedding. It hasn't been the wonderful event that it should have been. The invitations actually went out the day before my MIL passed away.

I also work full time and this is our busiest time of the year. So sometimes I feel like I'm falling apart. After the wedding and the step-FIL is gone then we have to go in and deal with my MIL's things and get the house ready to sell. I'm hoping when this is all done next month that I will start to feel better and get my life back to normal.

I hope I don't sound like I'm whining. I just wanted you to know you all aren't alone. This cancer can just really take it out of you.

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

Checking in...

I'm glad I'm not the only one who gets angry and stressed to the max.

I've been OK the last few day and it is a good thing too.

My mom's OC gave scary news so my mom needs everyone else stable.

I'm going to keep this thread for when I'm angry or stressed and I invite anyone else to join in.

Caregivers Stress is no joke and I do not think it is healthy to hold the negative feelings in.

Sherry · Regular Joined: 30 Dec 2008 Posts: 45 Location: Missouri

I actually got up and feel pretty good for a change. More energetic and don't have a headache. If only I could get over my hip and knee joint pains. I could really get in more exercise and I think this would help me. I've actually slept really well the last 2 nights compared to what I've been doing. Maybe I'm on the uphill swing finally.

Hang in there wannaknow & starseed. Things have to go up from here.

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

That reminds me...

I got so stressed the last two weeks I forgot to go for mountain hikes and meditate. I was doing that daily and that did help tons. I was going to add weight training but have not gotten there yet. I was bodybuilding before I moved so I have no excuse for not toughing my free-weights.

I'll make meditation and walking my goal this week.

Getting hospice in the house is a major relief too.

Sherry · Regular Joined: 30 Dec 2008 Posts: 45 Location: Missouri

Don't forget to try and eat very healthy. That is really important as well. I'm a true believer in exercise. My knee is swelling really bad right now so I can't do anything-not even walk. I'm trying to do some yoga and I think I may get out my hand weights and at least work my upper body.

Thank goodness you get a break now with hospice. That is also an important thing. Hang in there. I'm thinking about you.

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