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Roselvr, I can't believe you went through almost this same thing with your dad. I am so sorry for your loss. It is a tragedy that he didn't live to experience his dream.
Going through a closing on behalf of my mom will be my experience as well, but in reverse. She had moved into the Florida apt before selling her LI co-op apt. I set up her whole new apartment while she was in the hospital, as we had doctors telling her she'd be back there enjoying it after spending a couple of weeks in rehab building up her strength and mobility. Building up - ha! I took many photos of the apt to show her how all her photos, knickknacks, handmade throws etc. looked. A beautiful place with a view that went for miles. She would have been able to sit at her computer table and see clear to the Everglades. Now she will never see the place. Last week she sold the LI apt and for the past two days in addition to everything else I've been back and forth with her lawyer on LI to set up the closing in July.
I mentioned this in my message to you, but for others who may be reading, I set up an appt for my mom to see a very good doctor at a large practice near Stony Brook Univ. where the doctors are affiliated with SBU, Long Island Jewish Hosp. and other excellent hospitals. He is a specialist in cancer of the internal organs such as pancreas, liver, and stomach and board certified in hematology, oncology and internal medicine. I know him as i've been his patient for the past year for a rare autoimmune disease for which I had to have chemo. I hope and believe that if nothing else he will explain any options for treatment to her and will answer all questions. To my mind, chemo is probably a poor idea, and I hope mom reaches that decision as well. She has not had any chemo treatments as yet.
She is almost completely immobile and very weak, not eating, and I can't even imagine bringing her anywhere else. I hope she can make it down to the dining room in her new facility.
This is why is why I'm not sure if she's had chemo or not
I lived down there in the hospital for almost two weeks, then went crazy looking for a rehab place as the doctors were telling her she'd get her strength and mobility back and go home and enjoy life in Florida. I thought they were crazy. They set her up to see an oncologist who was supposed to give her some sort of chemo (I could not get much information out of this doctor, nor were my brother and I part of the conversation deciding to go ahead with chemo) and my mom doesn't have much information or the correct information. She thought she was going to take a pill, but it was actually an infusion.
Yeah; my dad finally retired; he was driving down to see us on holidays; he was enjoying blueberry season; so I told him to sell the house in Union County & come south. They looked at a few houses; then it just so happened that friends of our had purchased land & were going to put a modular on it; I sent pics to my dad & he hated it; then decided to come down at the final hour & made a deal; next thing you know he & I were picking the house; they were putting it up & he started getting really weak. We finally talked him into going to the Dr; he's been hospitalized ever since. I stepped in & got the houses moved; then we worked on the old one & got it listed; he ended up passing; old house ended up selling.
My dad & I were really close; I've always been the only kid of 3 that worked the family business. I was the only one that was always by his side. To lose him when he was moving to retire by us has been a very hard pill to swallow. I spent a lot of time telling him how I felt; he & I were together just about every day for the 8 months he lived; we did a lot of talking. He knows how unfair I feel it was that his life was cut short. He died a month before my birthday; which was his next goal to be alive for. I will forever remember him telling me how sorry he was that he wouldn't make it. Everyone got one more birthday with him except me & my hub. It kills me because of the way it happened; he was switched from CINJ to a local place; his arm blew up when they removed the PICC line; he begged to be admitted; the Dr refused. I tried to get my dad to go back to CINJ; I knew they'd admit him but he was too tired. I was told not to treat the swelling because it could end up killing him; stupid Dr could have given an ultrasound but didn't. The youngest (she stopped speaking to him 10 years before) went behind my back & was putting cold towels on the arm & next thing I know he's bedridden. He went pretty quick; called hospice on a Friday; he was gone by Monday night. I always asked how much time he had & this new Dr lied to our faces. I ordered his records after he passed; the Dr put a few weeks at most on his 1st appointment notes when he was telling us it could go a year.
The so to speak light; you get to say good bye to them; you can prepare. Forces you to make sure everything is in order. You know they are terminal; the doctor will not try to save their lives; so they will not be lingering in a nursing home with Alzheimers or something else where they're healthy but have no mind. It's hard to say good bye; but thankfully we get to. My dad went peacefully with me holding one hand & the apple of his eye; my son on his left side & my 13 year old also in the room. The one thing I wish I could change was what others did during those 8 months; his other 2 daughters showed their true colors & the wife he should have divorced when we were little was mentally checked out; she wanted him in a nursing home at one point; all he wanted was to die in his own bed. Thankfully she had no say in what happened to him; he made sure that I was in charge; he knew I'd fight her to respect his wishes. Once he was bedridden I stayed in his room with him. My son had already moved in a month before in case he was needed.
On the bright side; your mom has been able to enjoy 4 years in Florida. It's not easy having them live down there; my hub has a 93 year old gram in Coral Gables; we worry all of the time. Thankfully the brother of her deceased daughter in law needed a place to stay so he watches over her; I pray she will pass in her sleep one night because she has been very fortunate; has been on her deathbed once in her early 80's & has fallen a few times. Their bodies go down hill in their mid 80's; my ex neighbor had a horrible fall at 87 where he broke 4 ribs & punctured his lung. He refuses to stop driving; has totaled 2 cars since the fall.
Am new to the health area of city-data, as I usually spend my time in the retirement and other sections.
Tony, I read your whole story with your dad. I am so sorry for your loss. You and he fought a good fight in a battle that seems to have few winners, besides this awful disease.
My mom, 85, moved from LI to Florida on May 16. She lived up here all her life but had been snowbirding down in the Ft. Lauderdale area for the past four years. Finally she took the plunge and decided to move permanently to the independent living facility where she'd spent the winters. We spent the whole spring cleaning out her apartment, sorting, tossing, saving, giving things away. For a week or 10 days before she moved she was experiencing stomach pains.
At first she said it was food poisoning, something wrong with a chicken quesadilla she ate. Then the pains didn't go away and she thought it was acid reflux, which she'd had in the past. I urged her to go to the doctor, but she said she'd go in Florida after she moved, if it was still bothering her. A couple days before she moved, I said, why don't you let me take you to the doctor, your stomach shouldn't hurt this long, but she said no. She can be quite stubborn.
A week after she got to Florida she became jaundiced, and a friend took her to the doctor, who promptly put her in the hospital. She had liver failure. She underwent two procedures (first one unsuccessful) to get a stent in place, then three more procedures over a two-week period that included a CT guided biopsy, placement of an internal stent and removal of the external one. Meanwhile, even before the biopsy, we were told that she had pancreatic cancer that had metastasized to the liver. Surgery is not possible.
I lived down there in the hospital for almost two weeks, then went crazy looking for a rehab place as the doctors were telling her she'd get her strength and mobility back and go home and enjoy life in Florida. I thought they were crazy. They set her up to see an oncologist who was supposed to give her some sort of chemo (I could not get much information out of this doctor, nor were my brother and I part of the conversation deciding to go ahead with chemo) and my mom doesn't have much information or the correct information. She thought she was going to take a pill, but it was actually an infusion.
Anyway -- it's a long story and I'm not being too coherent -- but I put her in the best rehab place I could find, visiting six or seven places and picking one that had good reviews and seemed clean, bright and cheerful. I liked the director. Mom has been there nearly two weeks and has been quite neglected, very depressed, and has some stomach pain.
As I live in NY it is impossible for me to go back and forth every week, so my brother and I decided to move her up to LI. We're bringing her up either Tues. or Wed. and moving her into a very nice facility, Sunrise, which will accommodate all levels of care she needs including hospice. She will not have to move again. She will also be a mile from my job and very close to home, so I can see her every day.
She is very weak, finds it hard to eat, and is so angry and disappointed that her Florida dream will not come true. I am so angry, too. And so scared of what is to come. I got her an appt. with a very good doctor who I know personally (he treated me with chemo infusions not for cancer, but for a rare autoimmune disease) and I know she will get good care there...whatever it might be.
Mom is eager to explore the options with the doctor. I fear there are not too many. What she has is inoperable and there is already new pressure on the stent they put in from the cancer progressing (that is my guess, anyway).
Sorry for this extremely long post. It has been a hard time and I'm just glad to find a place where there are others who are experiencing this themselves or with loved ones. I wish everyone here good health and am sending some positive energy to all.
My dad's experience ? ( a few years ago )
Not feeling well over Christmas .
Went to doctor for diagnose Jan 3
I am very thankfull my dad had a great ...HONEST..doctor who told him there was little that could be done.
I'm glad he didn't recommend some cancer center to give my dad false hope, tell him " you are a fighter", suck every last penny out of him only to have him die in about the same time frame.
That is definitely her goal. She never wanted chemo in the first place and she may decide not to do it, which is fine with me. The Florida doctors pushed it, and there was no family discussion or input. She felt she had to say yes. I think when we go to the doctor here, we will go together and learn more, and I will be the one to ask the questions about goal of treatment, length and side effects, quality of life. My mother is very smart, but she tends to automatically listen to doctors when they tell her what to do, without necessarily asking "consumer" questions.
I am so very, very sorry to hear about your Mom. I lost my Mom to "pancreatic cancer" many years ago, so I know what your going thru. Many years before she was diagnosed, she ended up in the hospital and the Doctor that was treating her then thru her hospital visit told her she needed to start "chemo". The Doctor never told her personally and she was told by the nurse. I was working at that hospital where she was a patient at and there was no way I would let them do "chemo" on her~! The Doctor never came to talk to her about it like they normally do. Plus, I didn't like the Doctor for many of reasons. About 10 years later she somehow ended up being diagnosed with "pancreatic cancer" and back in the 1990's there was no cure and many now is. Anyways, I really feel for you and what your going thru.
It's such a hard situation. Losing a parent is hard enough, but the maelstrom of funding, placement, care given, choices... My father is currently in a nursing home for two weeks with pancreatic/liver/mets. He's 87 and there was never a choice of curative care, nor did he want it, but getting the nursing home staff and the hospice visiting staff and such on the same sheet of music has been the nightmare of confusion that so many people experience. My father is currently only semi-conscious, and my only expectation of the staff (and unfortunately, my sister and I have to stay on top of things) is that he have no pain. I think his current state is due to the fast progression of both the pancreatic and liver and I hope he will go as soon as possible, and certainly without any pain.
I think it's incumbent on all of us, especially the older folks, to have some idea of what we will or can do if we get some bad news or are treated for something serious and it's not gonna be cured. I thought I had my ducks in a row for a sudden accident or something (lawyer, proxy, will, directives) but this cancer thing is a whole 'nother set of things, and virtually all of my direct relatives have died of cancer or been treated and in remission (one aunt, 92 and demented, and my sister, 62 and clear for maybe 15 years).
At some point, the adult child who is involved in the care might have to say to the parent, "Look, this is how it has to be" even if "it" is something that parent doesn't want. Of course they don't want the solution. They don't want to be sick or out of control, either. Some are upset about dying itself (my father isn't). It can help, if you are trying to place someone somewhere they don't want to go, to tell them that you or other siblings/family are going crazy worrying about that person being alone/being in the wrong place/etc. and if they go to the new placement, it will ease their minds about her care.
Yes, it's a wild ride and one that a lot of people seem to be banging into lately (at least in my age group). No great answers, that's for sure.
Am new to the health area of city-data, as I usually spend my time in the retirement and other sections.
Tony, I read your whole story with your dad. I am so sorry for your loss. You and he fought a good fight in a battle that seems to have few winners, besides this awful disease.
My mom, 85, moved from LI to Florida on May 16. She lived up here all her life but had been snowbirding down in the Ft. Lauderdale area for the past four years. Finally she took the plunge and decided to move permanently to the independent living facility where she'd spent the winters. We spent the whole spring cleaning out her apartment, sorting, tossing, saving, giving things away. For a week or 10 days before she moved she was experiencing stomach pains.
At first she said it was food poisoning, something wrong with a chicken quesadilla she ate. Then the pains didn't go away and she thought it was acid reflux, which she'd had in the past. I urged her to go to the doctor, but she said she'd go in Florida after she moved, if it was still bothering her. A couple days before she moved, I said, why don't you let me take you to the doctor, your stomach shouldn't hurt this long, but she said no. She can be quite stubborn.
A week after she got to Florida she became jaundiced, and a friend took her to the doctor, who promptly put her in the hospital. She had liver failure. She underwent two procedures (first one unsuccessful) to get a stent in place, then three more procedures over a two-week period that included a CT guided biopsy, placement of an internal stent and removal of the external one. Meanwhile, even before the biopsy, we were told that she had pancreatic cancer that had metastasized to the liver. Surgery is not possible.
I lived down there in the hospital for almost two weeks, then went crazy looking for a rehab place as the doctors were telling her she'd get her strength and mobility back and go home and enjoy life in Florida. I thought they were crazy. They set her up to see an oncologist who was supposed to give her some sort of chemo (I could not get much information out of this doctor, nor were my brother and I part of the conversation deciding to go ahead with chemo) and my mom doesn't have much information or the correct information. She thought she was going to take a pill, but it was actually an infusion.
As I live in NY it is impossible for me to go back and forth every week, so my brother and I decided to move her up to LI. We're bringing her up either Tues. or Wed. and moving her into a very nice facility, Sunrise, which will accommodate all levels of care she needs including hospice. She will not have to move again. She will also be a mile from my job and very close to home, so I can see her every day.
She is very weak, finds it hard to eat, and is so angry and disappointed that her Florida dream will not come true. I am so angry, too. And so scared of what is to come. I got her an appt. with a very good doctor who I know personally (he treated me with chemo infusions not for cancer, but for a rare autoimmune disease) and I know she will get good care there...whatever it might be.
Mom is eager to explore the options with the doctor. I fear there are not too many. What she has is inoperable and there is already new pressure on the stent they put in from the cancer progressing (that is my guess, anyway).
Sorry for this extremely long post. It has been a hard time and I'm just glad to find a place where there are others who are experiencing this themselves or with loved ones. I wish everyone here good health and am sending some positive energy to all.
Hi , sorry for what you are going through and thanks. This disease is really terrible. My dad was once a healthy guy. He use to jog, run and bike everyday and also worked out. It's a shame that he is gone. Only 52 years old. Just disgusting. He was doing so well on the chemo at 1st. He tolerated 7 rounds of Folfirinox.. His tumor markers were going way down and his tumors were going away. It wasnt until February when things started to go downhill and he was in and out of the hospital all the time. On April 6th, the doctor sent him home from the hospital and told him that the best bet was hospice. My dad accepted it. I couldn't believe that the end was near. He died 11 days after hospice. I was so mad when he chose to do the hospice route. He did it because the cancer had spread to his lungs and spine. I still miss him alot. It feels weird when I come home at night from work and I dont see him here. Last year was my grandma that died and now it was my dad ( grandma was my dad's mom ). Back to back deaths. Hoping things work out for you.
Quote:
Originally Posted by Roselvr
Look at how quick Tony's beloved; healthy & 52 years young dad went. My heart rips just typing the words. He posted a photo of him in the other post which I will paste below; when you see how young & fit; healthy he was; it makes no sense. I want to vomit. He was 5 years older then me; 3 years younger then my hub who fought stage 4 oral cancer. Coming to this post is not easy; it reminds me of my dad fighting terminal cancer; we can see how much Tony loved his dad & while I don't know either of them; it never fails to bring tears to my eyes.
I'm pretty against treating someone your moms age unless it is for comfort. There are various types of chemo; I can't see her taking fulfirinox or 5FU. I can't see her suffering side effects at her age. My dad turned 69 the week of his 1st chemo; he was also pretty healthy. He was reduced to being so weak he couldn't get out of the bed to deal with the runs. The chemo killed his heart & lung function to 28% within months.
Thanks for posting the pic. He went way too soon, although the average length time for this cancer is 6 months to 1 year with chemo and less than that without chemo. My dad chose the chemo route because he thought that he was going to beat it. He wanted to be a survivor. Imagine how he felt when he heard that he had the worst cancer out there. Truly terrible. Towards the end, he just gave up and ate anything. He knew that he was going to do. He always told me to take good care of mom =(. My dad never had any side effects with Folfirinox. Some people can take it and some people cant. It depends on their body. Eventually, the chemo took a big toll on his body and his organs started to shut down from all the chemicals. I am not sure that the cancer killed him. I think it was the fluid buildup. What a beautiful pic that you posted.
We went through the same thing with my dad. The initial diagnosis before all the extensive testing was done was Acid reflux. So he was treated for that. Then the sudden big weight loss over the next few months and he wasn't getting better. He had an endoscopy and it came back clear. My mom said this can't be good. He had a sonogram of his liver and pancreas and was told he should see an oncologist. The results were given to the Dr. who confirmed it was stage 4 pancreatic cancer. My mom was the one who had to break the news to my dad because the Dr. felt he did know my dad long enough to tell him.The Dr. also told him there was no hope and chemo would not gurantee a prolonged life. This was in July 2004 and on August 26th 2004 he died. He was 57. He opted not to have chemo and just to be at home and comfortable and pain free. So he was on morphine patches. I feel for you and hope for the best. My thoughts and parayers are with you and your mom.
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