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Medical Forum / Diseases and Disorders / Cancer / September 2006A very sad update....
Hi I posted here awhile back about my mother who has cancer that had matasized to her liver. I wrote of my anger towards her and my father for not seeking better medical help to deal with her cancer, instead of choosing to stay in the small town where they live. Many of you replied to my post and i receieved many kind words....and i also found Penny's blog thru this group. Communication is not something that happens between my parents and my sister and i....my sister and i have tried repeatedly, to no avail. Very frustrating because my sister and i never knew what my mother felt, the pain she was obviously in...but thru Penny's blog, my sister and i have had a glimps into my mother's life the past 2 years. Penny holds a special place in our hearts for that reason. Her ablitity to communicate thru written words her feelings during this terrible time on her blog has helped me and my sister have so much more compasion even though my mother has rarely spoken to us about it. My father had choosen to not contact my sister and i when my mother was admitted into the hospital last Tuesday. He finally called me the past Friday...probably because he was sick of listening to all of my messages on his cell phone and their house phone. Calls to my mother just to say hello, to please call when she felt like it....the anger i felt (and still do) towards my father is not measureable. I am angry because i feel that he didn't find the best medical care, anger because i don't feel that he did all he could do and neither one of them would allow my sister and i to help, anger because they didn't "feel it was serious enough" to call us. Needless to say, i didn't hold on to my tongue....and told him the next time, i expected a phone call, i expected him to call her family in Spain next and then to call her friends, period. (okay, i used a little more colorful language than that...) I have not spoken to him since. While i know being angry solves nothing at this point, i can't seem to get past it. Yes, my mother's cancer has spread unbelieveably fast.....she is still in the hospital but Hospice has been called by her doctor. My sister had enough of the vauge answers from my father, so she packed up and drove up. (She is 12 hours away....i am 10hrs away) She got answers from every doctor that came into the room....and they weren't what we wanted to hear. Six months, perhaps 8 months at the most....radiation to help shrink to help with the pain. Although my sister and i knew this would be the outcome last year....our hearts ache. I have made arrangements for my mother's sister family to come in from Spain and i'll be on my way down asap. I guess the point of this email is to tell people who have cancer to please, please share information with your children. Let us be involved in your care, let us come see you whenever we want, let us know who your doctors are....let us be a part of this terrible time, let us drive you to your appointments let us question your doctors and you. I am angry at my dad for keeping us away because he (and my mother) didn't want us to see her sick and in pain. At least maybe i could have held her hand while she slept, or be there when she woke up. This is my fault too, for listening to both of them tell me "she's fine" or "she's under the weather a bit today" and not listening to my gut and just packing up and going to see for myself. I still call daily....and i get to talk to my mother...but she doesn't know who i am, calls me by my sister's name or her friend's name and is so under pain medicine that she isn't able to talk. I am angry at everyone, it seems....and i know that anger at this point is useless and i just need to pull up my big girl panties and do what i need to do: be there for her last days. If you've gotten this far in my rambling post, thank you....and remember to share your lives with your families and friends. We need you just as much as you need us.... isabel I am so sorry for what you , your mother, and your family are going through. Gail > Hi > [quoted text clipped - 64 lines] > > isabel > Hi > [quoted text clipped - 64 lines] > > isabel Isabela, I feel so sad for you. Men are terrible at expressing what they are feeling and communicating in general. I hope you and your sister can get together with both parents and tell them, nicely, how you feel. No point in getting mad at your Dad. It accomplishes nothing. Ask them NOT to leave you out on your Mom's condition. It just isn't fair. I have two sons and I bet they are sick to death of listening to me but at least they are informed. AND is will tell them both by phone iof things begin to look ugly. Neither live close by. Take care and I will also include you in my prayers at night. Betsy Betsy, Thank you for the kind words.....my sister is staying with my mother unitl i am able to be there on Weds...needless to say, she has my mother talking and my dad to a certain extent and we now have a clear idea of exactly what is going on. The answers aren't what we wanted to hear, but at least we know what is going on and how we can best be there for my mother. Your sons are blessed to have you communicate with them the way that you do. I'm not sure why my parents are the way they are...it's interesting to me that my sister and i are opposite...we share everything. I am so lucky and blessed to have her! thank you again for the kind words.... hugs...isabel > Isabela, I feel so sad for you. Men are terrible at expressing what they are > feeling and communicating in general. I hope you and your sister can get [quoted text clipped - 7 lines] > > Betsy isabelaorosz@hotmail.com wrote in news:1157758388.953735.82040 @i3g2000cwc.googlegroups.com: > If you've gotten this far in my rambling post, thank you....and > remember to share your lives with your families and friends. We need > you just as much as you need us.... > > isabel I am glad to hear you managed to crack the ice & get support to your mother & closure for yourself, your sister & your mother's relatives. Perhaps your father is a proud man? Unable to ask for help? Or maybe he puts up a front because he doesn't know how he'll manage without your mother? Maybe try to look at the situation through his eyes to understand. Please be gentle with yourself & your family. These are such difficult times, but they can offer riches too & opportunities for personal growth in the most unexpected ways. I will copy the Penny part & email it to her so she'll be sure to see it. She's in a lot of pain & it will make her happy to see someone benefited from her blog. Helping others means so much to her. I'll be thinking of you & wishing you & your family love, understanding, & peace. Many hugs ((((Isabel)))) Fig Figger.... Thank you so much for the kind words....i've been reading the past few days and have read of your situation. You are in my thought and prayers... hugs....isabel > isabelaorosz@hotmail.com wrote in news:1157758388.953735.82040 > @i3g2000cwc.googlegroups.com: [quoted text clipped - 25 lines] > Many hugs ((((Isabel)))) > Fig > Figger.... > [quoted text clipped - 3 lines] > > hugs....isabel How's it going now, isabel? How is your mother doing & you & your sister & father? Are the people from Spain there yet? This is such a difficult situation for all of you. Sometimes adversity brings out the best in us & other times it seems to bring difficult issues & emotions to the forefront. I hope you can enjoy some quality time with your mother & work things our with your father. Before my husband became ill himself, he treated me very badly when I became ill (pneumonia & the like). I finally figured out he was scared & couldn't admit it. I'm the type who can go for years wih not even a cold & then whamo - when I get something I'm knocked off my feet. He just couldn't deal with it. Your mother's doctors may be able to recommend a chaplain or social worker, maybe male, your father would talk to. If he has issues to resolve with your mother, it's often easier when she's still alive. A lot of us here have been through the death of a loved one. You are among friends here. I hope you come back! Hugs, Fig Fig, thank you again for your post. I'm doing okay....rollercoaster of emotions which is to be expected. i guess. My mother's sister and husband are coming in approximately 2 weeks....my sister and i will be trading off time to be there so everyone can have time with my mother alone to say all of the things they need to say and to help my mother during this time. I'm still angry at my father....and i've shelved that for now. You're suggestion of having a chaplin or social worker talk to my dad is a great idea, and one that neither my sister or i had considered. I am starting to think, in his own way, my father maybe has done what he thought was best.....even if i or my sister don't agree with it. My sister and i are very aggressive in wanting things done....and i'm afraid my parent's aren't like that. Thank you again....and take care of you. hugs...isabel > > Figger.... > > [quoted text clipped - 24 lines] > Hugs, > Fig > Fig, thank you again for your post. I'm doing okay....rollercoaster of > emotions which is to be expected. i guess. My mother's sister and [quoted text clipped - 14 lines] > > hugs...isabel isabel, You do seem calmer now, less angry. It was interesting what J had to say too, her perspective. It's our responsibility as loved ones to help the dying person do it her way. We may be able to help them consider different aspects of what they want, but in the end, their choices should be honored even if we disagree. Has she written a living will or 5 wishes (a form of living will used in may states)? The five wishes format leads you through thoughtful discussion of what she would want under different circumstances. If she's already written one, you might want to ask permission to read it & use it to guide you. Many hugs, Fig > Figger.... > [quoted text clipped - 8 lines] > > > > Many hugs ((((Isabel)))) Yes, well, I'll add mine here as well and while it's important for loved ones to know the diagnosis and prognosis or even go with the parent to help sort out the information, I wouldn't want someone calling every day (angry, frustrated, anxious) to get an update. Some days there's nothing (new) to report. Sometimes they need space (time to themselves). They're partners first and parents second. They did their job; reared you and your sister. Sounds like it's going to be busy and crowded if aunt and uncle are coming. If they're coming to visit, then go home, give them space. It's her sister. Use that time to sort out with your sister, some type of schedule as to who can be there, for instance, one week, to bedsit/errands/housework etc, while your father takes care of mother or bedsit while father needs sleep or a break away from bedsitting. Work with your sister and father to work out a schedule. I think you'll have to "take turns" each week, because you can't both be driving back and forth (10/12 hours) daily and they may not want people living "on top of them", every day. Of course, a lot depends on your mother's current status (as evaluated by a doctor or hospice type). If time is very short, you may all be staying.. hope there's room, or find one nearby. J-hoping. J, thank you so much for posting this point of view. I guess in the mist of it all, i look as them as MY parents first....not as they are first: a couple. I had never put it in that context. I look at them as my parents....and i guess i forgot that before me, before my sister, they were a couple. They've been married for 43 years now....stupid of me to forget that they probably are first and foremost to them, a couple. And thank you so much for the tips...you're right, it may be a little crowded and i do want to give my aunt her time with my mother. My mother lost her brother to pancratic (sp?) cancer earlier this year....needless to say, it's been a difficult year for both my mother and her sister. The calendar is a great idea.....i called my sister and she is picking one up to post in the kitchen of my parent's house and making it an information area with phone numbers, who to call, etc....My sister and i have a horrible habit of being too organized, i'm afraid.... but i think we should have done this much earlier. Again, thank you so much for posting what you did. isabel > Sometimes they need space (time to themselves). > They're partners first and parents second. They did their job; reared you and [quoted text clipped - 15 lines] > there's room, or find one nearby. > J-hoping. > J, thank you so much for posting this point of view. I guess in the > mist of it all, i look as them as MY parents first....not as they are [quoted text clipped - 17 lines] > > Again, thank you so much for posting what you did. I'm glad it helped. Let us know how iit goes with hospice and/or your sister's visit, please. J > Yes, my mother's cancer has spread unbelieveably > fast.....she is still in the hospital but Hospice has been called by > her doctor. Make sure a doctor will always be available, day or night, weekends or holidays. If she's going "in hospice", make sure a doctor is always (going to be) there; not just "on call". Get a list of their names and phone numbers, if not a schedule, so you can verify that there's always a doctor at the hospice. J >> Yes, my mother's cancer has spread unbelieveably >> fast.....she is still in the hospital but Hospice has been called by [quoted text clipped - 7 lines] > can verify that there's always a doctor at the hospice. > J Amen Get a list of their names and phone numbers, if not a schedule, so you can > verify that there's always a doctor at the hospice. > J Hospitals do not have to have a physician onsite, I have never heard of a hospice with a physician onsite. What would good care dictated was a visit from the physician. If the pain management needs where too much to handle a transfer to the hospital where there would be better access to services. The nurse should have advocated for her patient. She should have asked the physician to come in and evaluate the patient. She could have said, I feel uncomfortable executing these verbal orders without a physician evaluating this person. If the doc refused she should have gone up the chain until someone responded. Also a family member should have called the physician himself and requested a visit, often the extra pressure from a family will push doctor into visiting. Family members need to oversee the care. Hospices are required to have 24 hour social work. I would have involved the social worker and asked her to file an abuse ( leaving someone in pain without the appropriate pain evaluation could be seen as an abusive situation) and it seems like the family need the support. I would be very surprised if any facility handed out their numbers and on call schedule. The on call schedule is usually maintained by the answering service and they are very guarded ( with good reason). Family's need to get involved, if they don't get an answer they find acceptable they need to persist. If they still don't get the answer they need to find another provider ( which would have been near impossible on this holiday weekend). Overall this was not good hospice care, they may have never gotton the pain under control but an effort should have been made. usenetgirl@gmail.com wrote in news:1157815642.846498.297840 @i3g2000cwc.googlegroups.com: > Get a list of their names and phone numbers, if not a schedule, so you > can [quoted text clipped - 30 lines] > care, they may have never gotton the pain under control but an effort > should have been made. The nurses wouldn't allow us to talk directly with the doctors & we weren't able to contact them directly. All admin offices closed for weekend/holiday by the time we realized pain control wasn't happening & that there would be no doc. We asked for a doctor over & over & over of everyone including the chaplain & social worker types. Everyone there was doing all they could, but we thought a doc should see him. Calling an ambulance to come to the hospice to take him to the hospital would have been very extreme & we probably didn't have any insurance coverage for that anymore since he was in hospice care. But we couldn't find that out either because everything was closed. So we were hoping they'd eventually get a handle on the pain & they never did. The hospice insisted they were experts on pain control, dealt with it more than hospital. And we kept thinking that as extreme as his case was, something would trigger a doctor visit. I was posting here about how bad his pain was & how they couldn't control it. Just a very bad situation & I hope to learn soon if it was legal to operate that way. Fig > The nurses wouldn't allow us to talk directly with the doctors & we > weren't able to contact them directly. All admin offices closed for > weekend/holiday by the time we realized pain control wasn't happening & > that there would be no doc. We asked for a doctor over & over & over of > everyone including the chaplain & social worker types. That is horrible. Families and patients have the right to speak to the physician. Everyone there was > doing all they could, but we thought a doc should see him. No, they had access to the adminstrator, they should have called that person to deal with the non responsive physician. Calling an > ambulance to come to the hospice to take him to the hospital would have > been very extreme & we probably didn't have any insurance coverage for > that anymore since he was in hospice care. I can understand your thinking, but buried in the paper work is the fact you can revoke the benefit at anytime. But putting a person in pain in an ambulance is probably not the right thing to do. But we couldn't find that out > either because everything was closed. So we were hoping they'd > eventually get a handle on the pain & they never did. The hospice > insisted they were experts on pain control, dealt with it more than > hospital. And we kept thinking that as extreme as his case was, something > would trigger a doctor visit. The clue here is you stated that the hospice ran out of pain medication, to me this would have trigger me to think his case was extreme,also being a holiday makes it difficult. I was posting here about how bad his pain > was & how they couldn't control it. Just a very bad situation & I hope > to learn soon if it was legal to operate that way. It will be interesting to see what hte investigator finds out for you. Anyways I hope you find a resolution to this situation. |
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