#52130 07-25-2007 09:06 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Mom only has 19 more tx's to go. She gets really sore when I say only... Still, less than what she had to face to begin with. Today when she went back for treatment, I went to the rn's station to talk to them about antidepressant for mom. They said they would talk to my mom when she came out. Sure enough, we were geting ready to leave and they called us over. My mom handled herself a lot better with them than she would have with me. When the nurse said they would help with clarity...mom said she didnt' know if she wanted clarity. She embarrassedme by going off about what state the house is in, laundry, and food plans. I cleaned the house before I took off for the weekend, not really cleaned but did have everything out away, vaccuumed and dusted. I spent over 3 hrs in the kitchen a few wks ago on hands and knees-no one cares if they spill or drop something. I'm finding it difficult to be ok with wiping up after adults constantly. Laundry has always been an issue. Food is something new. She can't eat or won't really try...she's become extremely fussy. I felt like such an idiot sitting there, especially when I started questioning myself. I honestly don't get much help. My parents are the biggest mess makers and yet she complained that it was my kids. They are following other patterns laid out before them. I'm going to talk to them about it. I feel guilty as hell. I honestly feel like I don't want to put up with this any longer. I've been bending over backwards, not working since mid April and being treated like a servant. I've had it. I want to run away....even when I do escape I feel terrible about it. The garden we were working on in the beginning is dead...that is my fault too. She didn't like where I was plainting things, I aasked her where she wanted them, she got ticked off and went to her room-never to tell me. I'm not expecting to have fun, but it would be nice to be appreciated somehow. I sound like a big baby, I'm ashamed. I just don't know what to do wtih myself. I hate how this is all going....it's getting worse and her attitude is effecting everyone.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52131 07-25-2007 11:14 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I just wanted to apologize....I know better than to have a pity party for myself. I just seem to get beside myself sometimes. Hope everyone has a nice evening.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52132 07-25-2007 11:46 AM | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2007 Posts: 163 | Donna What you are feeling is completely normal...you have nothing to apologize for... it all just gets a bit overwhelming at times doesn`t it. Hang in there..you are doing a great job, you will never have to say "I wish I had or I should have done". You are doing all you can. Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
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#52133 07-25-2007 12:03 PM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Donna,
You have so much on your plate...I think you are in the right place to let it out.
Taking care of my husband (and getting him to treatment daily),raising my kids and trying to stay on top of my business has had me in an constant state of exhaustion (and sometimes tears).
My situation feels like a cake walk compared to yours. You have added two more people into your home, you have a less than compliant patient and you have a preteen and a teen. (I have a 12 and 13 year old).
I have been attempting to make the summer "normal" for my kids and also trying to get them to help around the house a little more (the latter part isn't working so well). My husband has been very compliant as a patient (and, yet, seeing him suffering has been trying).
You have multitudes more going on in your environment...and, you just lost a relative to an accident. That's just so much.
I feel blessed that I have had an abundance of help from neighbors and friends. I'm wondering if you are not getting as much help because you are taking care of a parent vs. a spouse.
Although, if anyone is offering to help...with meals, lawn care, etc...don't turn it down, you need the help. (That was a hard revelation for me, but every bit of help has been so appreciated)
Do you have sisters or brothers who can help and give you a little break? Can your father handle getting your mom to treatments on days when you aren't consulting with her doctors?
We're reaching the home stretch and I am finally getting better at accepting and sometimes asking for help.
And, I just started to give myself an hour in the evening to walk. That has made a huge difference.
You are going through tough stuff. Please don't stop posting. Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#52134 07-25-2007 12:57 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Donna,
Your parents are to old to change and I suspect their actions are not unusual or unexpected so I'm sorry but I don't get the feeling that your parents will ever appreciate, fully or not, your extremely valuable contributions. You're just going to have to accept that. Not saying that's going to be easy but I feel the sooner you stop looking (hoping) for thanks or them to change, the quicker you can get on with your life. I just hope your children can get through this without to much damage.
Their loss, not yours.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#52135 07-25-2007 01:12 PM | Joined: Mar 2006 Posts: 58 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2006 Posts: 58 | You have every right to feel the way you feel. I'm sorry, but your mother is being unreasonable and selfish, yes selfish and hurtful to you. My husband has been through hell with this dreaded disease. He is permanently on a PEG and when he talks people think he is drunk because of the surgery and this really hurts him. He was in pain during radiation and chemo and surgery and now he can't ever eat again. But, he never ever treated me the way your Mom is treating you. Is she getting some counseling, and are you getting counseling or at least going to a support group. There is help out there for you. Sometimes we have to be tough and let them know when they are being hurtful and when it is all too much for us. That is OK. I'm sorry, but this post really hit a nerve with me. My husband is fighting so desperately to survive. Now he is being tested next week for a spot in his lungs. I read about how your Mom is treating you and herself, and I just get angry. It is so unfair to you and your family. There is nothing fair about this disease anyway.
Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
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#52136 07-25-2007 01:31 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Donna - You are feeling and experiencing what a lot of us have, and it's not a pity party to have some compassion for yourself! I felt like a maid, too at times. I actually did run away, once - got in my car and drove home, crying all the wayl Of course, I felt so guilty, but things did get better after that. And about your Mom's reaction to "only xx more treatments" My son had the same irritated reaction but when we got a lot closer to the end of Tx, he started mentioning the count-down numbers himself, so maybe your Mom will feel more positive as time goes on. Also, don't worry about the garden - that's just STUFF and the fact that it's dead proves what an excellent caregiver you've been. "People before things" is my motto. Margaret has such good ideas above and going back to what Amy said about thinking what you can control, maybe you could see what things you could eliminate as well as get some help with the things you don't eliminate. It really does help to get some time for yourself. When anyone came over to see my son, I would use the opportunity to leave the house and do stuff for me. I told him I thought he should have some exclusive time with his friends, but it did me as much good as it did him. You shouldn't have to pick up after adults (unless they are really incapacitated). I still go over to my son's house a couple of times a week to do laundry and other chores and I was planning to show his 6 yr old daughter how to do laundry (of course making it seem like a privelege) but she can't reach the "On" button yet so I guess I'll hold off for a while. Certainly anyone over 10 (male or female) can do their own laundry. It's not hard and all the machines come with instructions. Anyway, Donna - you are doing a super human job and you do need a break. You've already done such good things. Killing the garden was good - it gives you one less thing to work on. Maybe you could get someone to go see a funny movie with you - or just go out for ice cream. Let us know what happens and how many things you were able to eliminate.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#52137 07-25-2007 02:18 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Dear Donna, here's a idea- why don't you go back to work and hire someone to be at home with them during the day? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#52138 07-26-2007 03:47 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hello, Thanks for helping me. I feel bad sometimes because everythign is onesided-my side. What I write is true, but I always have a nagging suspicion that I am biased-which of course I am. I spoke with my kids yesterday, they were wonderful. Jackie, my 17yr old, cleaned my parents bathroom, the back sunroom, had her boyfriend Joe cut the lawn, friont and back. Jessie, my 11yr old, dusted and cleaned up to the point she thought was great! I am just grateful for any help. I spoke with my mom for about 2 hours this morning. She said she hates herself for the person she is turning into. She cried, it breaks my heart when she does. I feel I have placed an ugly face on a beautiful woman. My mother is the most kind and considerate person I have ever met. This person I am dealing with now, though I know it isn't her, it still hurts when she says and acts certain ways. Last night for example, she was in a 'bad place', dad was sitting with her, holding her and trrying to calm her fears. My neighbor Mary has moved back to her parents house, she is going through hell with an estranged husband-too much to write about to explain--anyway, she came walking down the street with her greyhound. I pulled her into the backyard for her to show my mom her dog-mom loves dogs. It was then that mary started tellingus how her husband wants to keep the dog, the dog belongs to their 8 yr old daughter. The husband was admitted to warminster hospital yesterday. He has kind of threatened Mary about the kid and the dog. My mom got up, walked upstairs, came back down with two sets of keys-one for the house, one for the shore house. She told Mary anytime she needed help, felt she needed a safe haven for her, her daughter or the dog, to just come in, regardless of what she herself(my mom) is going through. She has always been this way. I am taking off for a week, leaving tmorrow with my kids, my nephew, and Ed. We are just heading to my parents pplace in Stone Harbor, NJ. I'll only be about 2hrs away, if needed. My sister will take care of mom for the week, it's her son I will have. She also has a baby girl, she'll be 2 in Sept-good therapy for mom. Dad is doing what he can, he's overwhelmed with fear and he's in agony because he can't make her better. I have finally decided that I will do what absolutely needs to be done, do what I need for me, take my dogs for a walk in the evenings, and get together with friends-even if I don't think I will enjoy myself. I don't know if I ever shared that my mom took care of my brother who was dying from AIDS, it was horrible-much like cancer, never knew what the beast was going to do next. She also was a part time caregiver to my aunt who died of lung/brain cancer...she is frightened, she has ideas of what could happen. She is frustrated because she is denied freedom from this illness. She'll get better. I'll try not to be so harsh about her and my family. We all are trying, in our own ways....even if that means not being the loved ones we can be. Thanks for all the advice. Amy- as soon as mom gets through this I am running back to the office! I can't wait!! Love, Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52139 07-26-2007 05:44 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Donna,
I think you are very hard on yourself. Of course, your mom is a wonderful person. You have made that clear in your previous posts and even if you hadn't, the fact that you are so compassionate and kind speaks volumes about her.
This is an awful cancer with no easy treatment path between the diagnosis and the cure. Between the treatments and the drugs, it's just not easy to feel or be yourself.
I am glad you are getting away and getting extra help. Keep asking for more and more help. It takes an amazing amount of energy to be a caregiver.
I find I get on edge easy...there's a lot to be edgey about. We're in the 6th week of treatment and I finally got smart enough (thanks to the relentless prodding of a neighbor) to get out and walk for an hour once a night.
And, it took me several weeks to not feel guilty about people wanting to help me and for me to accept the help.
Somehow, I felt like raising my family and taking care of my husband was my job and that if I couldn't do that, then I was failing. And, trying to stay on task with work...well, it's all just really hard and overwhelming when you are going through what you are with your mom.
Everyone is right, you have to take care of yourself.
And, you have to expect more of your kids. My kids are not pro-active and are asked to do very little in light of all that can be done, but what I do ask them to do, is now non-negotiable.
At first I cut them a lot of slack because their dad was sick, and then I started to get frustrated that they were not helpful...in fact, they were doing much to aggravate the household situation than to helping it.
Overall, I am not asking more of them than I would on a typical summer when I am working and they are home and playing all day...it's just that I think I messed up by easing up too much in the beginning.
And, with your mom, I do think the one battle to pick and win is to get her to stop smoking...no matter how ugly that gets.
Good luck, Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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