topic Re: Mistri... in Community Chat

Mistri...

JustJules — Tue, 14 Jan 2014 07:34:05 GMT

I tried to respond and it said the discussion was no longer active. Not sure why... so here is my response.

I typed out a long response to you in the other thread, and got that message that the commenting period was closed. I assumed that meant for all threads. Anyway, I'll try again. The cancer my father has is very different than what your dad has, so I don't think it is fair to make comparisons or suggest treatments. My father is also about 20 or 25+ years older than your dad, he will be 89 soon, God willing. The cancer my dad has started as basic prostate cancer, which should not have been a big deal, but he put off treatment even when he knew his PSA levels were high. The doctor could only suggest his treatment, he ignored that advice. I knew nothing of this at the time. My dad says he put off his own treatment because he was focused on caring for my mother, who had gone through a mastectomy for breast cancer. I came back to care for her, but again, my dad never shared what was going on with him. My mom was 78 at the time, it took a huge toll on her, even though she recovered from the breast cancer. Her health declined, and she died only a few years later from immunity complications. Anyway, my dad neglected his health, knowing he had issues. So, last year or a little over, we addressed it, he finally got the biopsy and of course it was raging cancer, his PSA levels were off the charts. At his age and surgery was not an option, but thankfully there was a new prostate treatment, an injection called Lupron. It's duration is about 6 months. After the first 6 months, his PSA levels were declined, so they did it again. His follow ups were good news, although his bladder was worn out in the process, and he is now on a permanent catheter that needs to be changed every 6 weeks. He has learned to deal with it, and he or I have to empty it numerous times each day, but he had a "lazy bladder" and without it, his urine would back up and cause him pain. He gets frustrated that not all his parts are functioning anymore. So, we thought we made huge progress tackling the prostate cancer, but unfortunately he had waited too long for treatment. He was having back pain and issues, and an MRI and scans showed that he has a cancerous lesion on his spine. It spread from the prostate cancer. Right now we are in the midst of wondering what the next step might be. He had a doctor appointment today, he goes for another MRI tomorrow, and depending on those results we will seek appropriate treatment. Surgery is no longer an option for him considering his weak health and age. His doctor has said that best case, they can do spot radiation treatment. Personally, I think they have put off addressing this issue with him because of his age. He has had lumbar injections for his back pain, but that is only temporary cure for something growing and getting worse in him. His experience has been different, he still has an appetite, although not what it used to be. Two years ago, he was on NO prescription meds... now he is on so many meds that it is hard to keep track of them all. Makes me sad. Of course the meds change his system, so then there is the fun of dealing with constipation and trying to adjust for that. He has been retaining fluid, his ankles and feet and calves have been all swollen, so the doctor is doing lab work to figure that out. It's one thing after another, yet he keeps positive. He is my dad, the only one I have, my world... I would do anything to keep him well and happy. Right now, the Parkinson's is manageable with his meds, I am more concerned about the cancerous lesion in his spine. I don't know what kind of treatment they can offer him that would cure him without making him worse.

So Mistri, I guess that is my experience with his cancer, and my very verbose way of saying I have no suggestions for your dad's experience. Sadly, it seems your father's cancer is more advanced and aggressive than what my dad has. I do keep him in my prayers and I think you are very wise to educate yourself and be involved. Doctors don't have all the answers, and I have found that I need to ask and provoke at times, and not settle for the basics. I don't know what the results from tomorrow's MRI will be, I can only hope for the best. Whatever comes back, we will deal with it as best we can. The only thing I don't want for my father is pain. Right now he is old, and slow, and he realizes his mind is not as clear, and he can't do the things he wants to do, but he isn't in a constant pain. I hope that day never comes. Anyway, I have no animosity towards you, and I am very empathetic about your situation. Anger is such a draining emotion... and it is easy to be angry when your loved ones are suffering. I often think I am alone, but then I read about other people here and their experiences, and I realize I am not. Not sure if anything I said was beneficial whatsoever, but it's late, and I'm exhausted, and it's the best I could do for now.

Re: Mistri...

mistriTsquirrel — Tue, 14 Jan 2014 07:48:56 GMT

I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

Re: Mistri...

JustJules — Tue, 14 Jan 2014 08:05:59 GMT

On 1/13/2014 mistriTsquirrel said:
I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

Thanks for your apology, and I apologize for any misunderstandings. I honestly do not recall ever telling you to "get over it" pertaining to your father's diagnosis. That is not something I would do. Perhaps you misunderstood me, and I think early on in our exchanges I did make some reference about getting over your depression, because I had suffered a huge spell of depression after the death of my mother. But, again, through some of our discussions, your experience with depression was different than what triggered mine, and I was wrong to seem not sympathetic. I truly don't recall ever thinking you should "get over it" regarding your father's illness, and I apologize if you thought that is what I meant. I would not or could not ever be so heartless. Everyone's journey with cancer is unique, so I cannot pretend to know how you are feeling, but I know how I feel, and it's a pretty frustrating path. Again, sorry for the misunderstandings.

Re: Mistri...

dooBdoo — Tue, 14 Jan 2014 08:55:40 GMT

I’ve seen a number of previous posts, and decided to add my view knowing it’s only my personal perception.

Both of you are highly articulate, intelligent, knowledgeable, passionate, and under extreme stress. You’re in a situation in which someone you deeply love is involved in the fight of their life, literally. You’re both in pain, your heart aches, your soul cries out, you’re both in a struggle which most of the time may leave you feeling helpless, empty and alone.

The written word is pitifully inadequate for complex conversation, even in the best of circumstances. Written discussions with people we know in real life, in email messages, Facebook conversations, etc., still can generate untended hurt feelings and spiraling misinterpretations. Add to that the fact that we have here a mode of communication in which, of necessity, a moderator removes posts and issues are sometimes never resolved… and bad feelings carry forward, damaged, unhealed and unchecked.

My guess is that you could be powerful allies in this journey you’re walking if only you could talk without the constraints of the forums and the added views of other posters (ok, yes, me included). Even when we decide to add our experience to a dialogue between two posters, sometimes it can become interference or an unnecessary diversion instead of the intended helping hand.

You are not alone, you truly are not alone. I hope you can find a way to join forces and become part of one another's extended support team. I’m sending my prayers and positive energy to you, to your dear fathers, and to their medical teams. I know many others here are doing the same.

(((Cyber hugs to you both.)))

Re: Mistri...

JustJules — Tue, 14 Jan 2014 08:58:19 GMT

Thanks dooBdoo, you're a wise and cool chick! Best advice I've heard all day!

Re: Mistri...

dooBdoo — Tue, 14 Jan 2014 09:04:47 GMT

On 1/14/2014 Jules5280 said:
Thanks dooBdoo, you're a wise and cool chick! Best advice I've heard all day!

Thanks, Jules. You and mistri have been kind and compassionate to me, offering comfort and sound advice. Something I appreciated and needed. My heart goes out to you both.

Re: Mistri...

mistriTsquirrel — Tue, 14 Jan 2014 09:36:24 GMT

On 1/14/2014 Jules5280 said:
On 1/13/2014 mistriTsquirrel said:
I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

Thanks for your apology, and I apologize for any misunderstandings. I honestly do not recall ever telling you to "get over it" pertaining to your father's diagnosis. That is not something I would do. Perhaps you misunderstood me, and I think early on in our exchanges I did make some reference about getting over your depression, because I had suffered a huge spell of depression after the death of my mother. But, again, through some of our discussions, your experience with depression was different than what triggered mine, and I was wrong to seem not sympathetic. I truly don't recall ever thinking you should "get over it" regarding your father's illness, and I apologize if you thought that is what I meant. I would not or could not ever be so heartless. Everyone's journey with cancer is unique, so I cannot pretend to know how you are feeling, but I know how I feel, and it's a pretty frustrating path. Again, sorry for the misunderstandings.

Actually, another poster posted what the two of us said during that exchange, as she had copied and saved it...but it is now poofed...which is fine...but you told me my dad is not the only human on the planet diagnosed with stage IV cancer, and I should get over it. After that, I stated that it had only been a week since his stage IV diagnosis, and I had not had time to get over it, and I called you a heap of nothing.

My dad retired in July, was told he has cancer in August, and was told he is stage IV in September. After a bone biopsy came back negative, my parents prayed for a miracle...that the spot on his femur would not be cancer, that it would be a mistake. The last PET scan was on the 20th. The follow-up appointment was on Dec. 30. Since I had the flu, I could not go (I was allowed to be in my parents house, but not within 10 feet of my father, and only with an ear-loop mask on). Fortunately, my brother stayed in town an extra day. I warned him that the doctors were going to shatter our parents' hopes and dreams at that appointment, and that he would probably have to prop them both up, so to speak. I was home when my parents and brother got back. I wasn't supposed to hug my dad, but I walked up behind him, put my arms around him, told him I love him, and silently cried. My brother sobbed, and my mom stood there, looking helpless with red, teary eyes. My dad did not cry...he walked into the next room, sat down in front of the computer and started playing solitaire.

Not only is the tumor in my father's femur larger, but the cancer has traveled to his sternum. The first course of chemo, which had seemed easy for him to tolerate, had done nothing to stop the cancer from spreading. I knew the cancer would still be in his femur, but I didn't count on it spreading elsewhere so quickly. Now he is going for a second round.

People who have 5FU and oxaliplatin for colon cancer have said it was tolerable...but people who have had it for esophageal cancer have told me it was worthy of the name "FU." I have been warned that he may not make it through this chemo...and I am not ready. He is only 66 years old, and he doesn't seem that sick yet...but I know he is. Sometimes I ask him how he is feeling, and he says he feels fine. The other day I asked him if he's been having any weird dreams and he said, "nope." I asked him what he takes to get to sleep, and he says, "nothing." Maybe he is trying not to alarm me...but his answers alarm me...and my mother does not get out of bed much, despite the fact that she is no longer on Coumadin and could get another blood clot at any time...she even gave me instructions in case she should die before my father. In the back of her head, I think she also wonders if maybe she still has cancer in her body too (they found cancer when they removed her thyroid earlier this year).

I don't know why I'm still typing this; it is late, and I need to drive my father to chemo tomorrow...then my mother and I will be attending a grief class at hospice, if I can get her out of bed.

Re: Mistri...

JustJules — Tue, 14 Jan 2014 09:50:26 GMT

Mistri, I am so very sorry. However, telling you that your father isn't the only person to be diagnosed with cancer is far from telling you to get over it. You say someone had proof that is now poofed. I believe I said your dad isn't the only one with cancer, but I don't believe I ever would tell you to "get over it" based on my situation. If I did, would love to see proof, and must have been out of my mind. Regardless, I no longer want to debate or argue semantics with you. I have true compassion for what you are experiencing. Tomorrow you take your dad to chemo, I take mine for a catheter change and an MRI. You have much on your plate. Like dooBdoo suggested, we should be comrades, not enemies. I hope that whatever has been exchanged in our past can be in our past, and that we can start fresh. I truly do have compassion and care for you and your family. I understand what you are facing, although not identical, the result is the same. I hope you get some rest, and I will say prayers for you tonight, hoping that you find strength to get through your day tomorrow. Your dad needs your strength and love. I wish I had something comforting to say, but I just don't...

Re: Mistri...

mistriTsquirrel — Tue, 14 Jan 2014 09:54:33 GMT

Thank you, dooBdoo.

I think of you often, and my heart aches for you. I hope that you are doing a little bit better each day, though I'll bet you have some pretty bad days sometimes. Please know that there are people here on the boards who are thinking about you and wishing you the best.

You are a kind and caring person, and you deserve the best life has to offer; I wish your hurts could be fixed with kind words...but I also know that none of us are/will be the same after our losses...and I believe that we can find some sort of purpose in what seems so senseless.

I am admittedly not as kind-hearted as you are--as my words on this board have shown--but I'm hoping that I can use what I know now and turn it into something good. I hope all 3 of us can do that when we are able.

Re: Mistri...

mistriTsquirrel — Tue, 14 Jan 2014 11:32:55 GMT

On 1/14/2014 Jules5280 said:
Mistri, I am so very sorry. However, telling you that your father isn't the only person to be diagnosed with cancer is far from telling you to get over it. You say someone had proof that is now poofed. I believe I said your dad isn't the only one with cancer, but I don't believe I ever would tell you to "get over it" based on my situation. If I did, would love to see proof, and must have been out of my mind. Regardless, I no longer want to debate or argue semantics with you. I have true compassion for what you are experiencing. Tomorrow you take your dad to chemo, I take mine for a catheter change and an MRI. You have much on your plate. Like dooBdoo suggested, we should be comrades, not enemies. I hope that whatever has been exchanged in our past can be in our past, and that we can start fresh. I truly do have compassion and care for you and your family. I understand what you are facing, although not identical, the result is the same. I hope you get some rest, and I will say prayers for you tonight, hoping that you find strength to get through your day tomorrow. Your dad needs your strength and love. I wish I had something comforting to say, but I just don't...

Alright. All I can say is that I saw the thing posted tonight. The person who posted it scolded me for my interactions with you, and I said, "hey, wait a minute." She said she knew what I was talking about because she had saved it before the whole "Bed Jackets" thread went poof. However, even though she had that saved quote, she still felt like I was "getting what I deserve," because I kept fighting with you, and she pretty much said she was done sticking up for me.

For the most part, I'm keen on fighting when I'm worn out from trying not to. I've posted to you in ways that I thought would be seen as supportive, and they were not seen that way. I've also posted things I thought were innocuous, only to find out that I was thought to be deliberately provoking an argument. I just gave up.

I don't see a point in being enemies...but my olive branch has taken a beating.

Re: Mistri...

croemer — Tue, 14 Jan 2014 17:32:47 GMT

Jules your dad's case sounds very much like my father's case. No one told us the shot would affect his bladder. This must have been what was going on with my father as well and not one of his doctor's mentioned it. It may have been because he lived away from us and when he became quite ill he came and stayed with us and the doctor's may have assumed we had this information from his previous doctor. My father really did not participate and listen to doctor's so he MAY have been given this information and either forgot it or never passed it down to us.

When he passed he had a tumor on his bladder the size of a football.

God Bless you and Mistri, it is so hard to deal with our parents failing health and each day dealing with it also is a reminder how little time we all have on earth.

Re: Mistri...

JustJules — Tue, 14 Jan 2014 17:45:47 GMT

On 1/14/2014 croemer said:
Jules your dad's case sounds very much like my father's case. No one told us the shot would affect his bladder. This must have been what was going on with my father as well and not one of his doctor's mentioned.

When he passed he had a tumor on his bladder the size of a football.

God Bless you and Mistri, it is so hard to deal with our parents failing health and each day dealing with it also is a reminder how little time we all have on earth.

Hi croemer, thanks. I didn't know your dad went through that. Like you, they never told us that might be a side effect. They tried several times to take him off the catheter, they did the bladder scans, etc. Think we've had every test they do. When he was off it, while his bladder functioned, they said it was "lazy" and wouldn't perform when he wanted it to, meaning he could not control when he wanted to go, and it would never empty completely which would lead to infections. Also in his case, it became so full that he was in pain, so living with a catheter is a much better option for him. He doesn't mind so much, it's one of those routine chores emptying it. He does make me laugh sometimes when I try to make sure he has enough water during the day, and he tells me if he drinks all that it will make him run to the bathroom. When I remind him that it will just go into the bag he says "oh yeah" and laughs. Gotta find the humor in that type of stuff. My dad only had two injections of that Lupron, which worked on shrinking his prostate and getting rid of that cancer. His cancer had spread to his spine before they ever gave him those shots, and they have delayed dealing with that because they wanted to get the other under control first. I hope there are no bad side effects from the Lupron like any tumors, he's been dealing with enough stuff. I am sort of crossing my fingers about the MRI today, because I know what to expect, I just hope nothing else shows up that wasn't there 6 months ago.

ETA: I really hope that all women on this forum will encourage the men in their lives to get prostate exams. When detected early, it is a very treatable form of cancer, and doesn't necessarily require any surgery. Men often put off going to their doctors, but postponing those type of checkups can cause more problems. My dad chose to put off his treatment to care for my mom, and his own reasons, and now he has to deal with the consequences of that decision. Like all cancer, if left unattended it will spread and grow. As women, we have all those not so fun checkups and screenings, so please get your man or men (husbands, boyfriends, brothers, sons, uncles) to stay on top of their health. A simple little exam could save their life.

Re: Mistri...

AnikaBrodie — Tue, 14 Jan 2014 19:41:17 GMT

I feel compelled to join this conversation for the benefit of both Mistri and Jules. As a two time cancer victim/survivor (now in remission from both cancers) I feel that you are both in the "right place at the right time" to support and encourage each other. It doesn't matter that your fathers are facing a different type of cancer or perhaps a different stage of this horrible disease. What matters is that you are there for each other to lend support when the road gets rough. As their cancers progress (it appears they already have) you may both find yourselves in need of someone to talk to. Past posts or misinterpretations should not matter. (This is a public BB and no matter how carefully we state our posts, we're sometimes misinterpreted in what we say and/or how we say it. I know I have been in that spot.) Let the past be just that, the past. You can't change the past but you can move forward, and I hope you decide to do that for each other.

My thoughts and prayers are with you and both of your fathers. May God shed his blessings on all of you. ((((((Hugs))))))

Re: Mistri...

croemer — Tue, 14 Jan 2014 19:49:45 GMT

Nicely said Anika...and continued wishes that you continue to do so well.

Hi Jules, guess we were not the only ones to not be informed of that problem resulting from those shots. I do not know how many my father had...I do know they worked for awhile and then became very expensive. My Dad was one man who did not have his prostate checked until it was a problem and he had cancer.

Good luck to all who have been fighting the good fight.

Re: Mistri...

JustJules — Tue, 14 Jan 2014 20:32:01 GMT

On 1/14/2014 croemer said:
Nicely said Anika...and continued wishes that you continue to do so well.

Hi Jules, guess we were not the only ones to not be informed of that problem resulting from those shots. I do not know how many my father had...I do know they worked for awhile and then became very expensive. My Dad was one man who did not have his prostate checked until it was a problem and he had cancer.

Good luck to all who have been fighting the good fight.

No Croemer, it doesn't seem like you were alone in that. It is frustrating when you put your faith and trust in doctors, and the ones that are supposed to be specialists in specific treatments. Of course I had the option to read all the pamphlets about Lupron, but when I am sitting in his examination room, told that my dad has prostate cancer and that surgery and chemo/radiation is no option, and basically this is the only treatment that will help him, I trust the doctor. I suppose they consider my dad's age as a factor, that an old guy won't care so much... hate to be so pessimistic but I do think that the elderly get treated a bit differently concerning "quality of life". Again, my dad is living the rest of his life with a catheter, and is okay with it. He was miserable the other way, but it still would have been nice to have that information. I also agree with you about the expense. Looking at my dad's medical billing, each shot was approx $5K and thankfully his insurance covered most of it, or we could never have afforded that treatment. There was still a substantial amount on the back end not covered, and we continue to make payments on it.

Anika, thank you for your post and kind thoughts. You are always so gracious and lovely, and you have good insight. I cannot dwell in the past because it is nothing I can change. As you said, we can only move forward. I pray that you remain cancer free, you're a strong, and beautiful survivor.

Re: Mistri...

mistriTsquirrel — Wed, 15 Jan 2014 09:56:14 GMT

Thanks, Jules, Croemer and Anika, for your input. and for the time you've taken to type out your replies and post them.

My good news today is that my dad did not have any sort of allergic reaction to his new course of chemo, and he seems to be weathering it well, so far. I warned him about a couple of weird things that could happen that his doctors didn't mention, that I learned from people who have had his course of chemo. One of those things is trouble with your balance, which I'm kind of annoyed that they didn't mention...as it's prominently displayed on the American Cancer Society website as an uncommon--but not rare--side effect, and one I would think would be important for a patient to know. Anyway, he is doing okay today; he has a pump for 2 days, so I guess we'll see what his blood counts are like on Thursday when he goes back. I have so many fears related to the chemo...but I can only do what I can do. I've learned some things about nausea medications, side-effects of the chemo regimen he's on and all that; I just keep looking for information so that someone in the family is aware of what to expect and what should set off an alarm (the doctors sometimes forget to tell you things, I've found). It's much easier to go online and ask people who have had the treatments what their experiences have been, or to go on a drug manufacturer's site and learn things, instead of having to drive up to the university and spend hours combing through medical journals. I'm so glad this resource is available to me, and I don't feel the need to do that. Today, at my own doctor's appointment, I dealt with a number of incompetent people, and I am suspicious if something doesn't sound right...so I check. Then I don't have to lie awake at night and stress out about how something doesn't make sense or sit right. I suppose stuff happens anyway, as no one can predict all of what's going to happen--and there's really no way to know all the information--but it makes me feel better to minimize any blind spots. I've had pretty inadequate medical care at times in my life, and it helps put my racing mind at ease when I have information to quiet it. Then the only chore left is to deal with the rest of the stress.

I've found that my mom has taken on a new level of controlling behavior in order to deal with her feelings. (I'm sure the lack of control over this situation is just killing her, because she's used to dictating what goes on in their home.) Anyway, the worst part is that she keeps yelling at my dad about stupid stuff. I keep trying to remind her that he may have Parkinson's--like his mother--but no one has diagnosed it because his current situation is so bad that worrying about a Parkinson's diagnosis does not seem high on anybody's list of priorities...but it doesn't mean he may not have it. He's also back on chemo now, and I've tried to explain the phrase "chemo brain" to her, but she yells at him anyway because he forgot something or didn't do it right. She says "well, he's always been careless." I guess that's her reasoning for causing a dying man stress day in and day out. I'm really angry about it, which is why I opted to not talk to her about how bad my day went when she came by to give me a spare key after I locked my keys in the car while it was still running. I knew I would wind up saying something that would cause an explosion, so I told her I'm so upset with the way the day has gone that I really shouldn't have any human contact at the moment, so she said okay, and I told her I love her, and she went home. I think I will have to print out information from reputable sites regarding the phenomenon of chemo-brain...and I will also share with her some other information about dying that looks at dying from the point of view of the person who is actually experiencing it. I want her to be able to understand so that she can control how angry she gets, and I want her to try to see things from his perspective. If that doesn't work, I think I will pull her aside after she has yelled at him and ask her what need it fulfills for her to yell at him, and if--a year from know--she will be pleased with the way she handled things over the previous year. I also want to teach my dad how to de-escalate her when she's raging about something...and let him know that if she won't take him to an appointment or pick up his meds for him or food he thinks he can tolerate--because she is mad--that he is welcomed to call me, and I will be glad to help. Her behavior is not acceptable, and I think my dad may actually be glad that she spends most of her time sleeping, because he can relax in peace...I'm pretty sure that's why he won't go wake her up if I call and need to ask her something. I guess I can't blame him. It's not that I can't understand that she still has unresolved anger towards him, but she's not making efforts to resolve it; she never has...and it's too much to ask him to handle her unresolved anger. So I will intercede as much as I can without causing more turmoil.

I am not taking care of one terminally ill parent...I'm taking care of a terminally ill parent, and a severely depressed mentally ill parent...while I am depressed. My brother is far away, and "outsiders" are not invited into their home...even their own siblings. My parents will only allow my brother and I to have any meaningful measure of access to their home and their information; others are sent vague e-mail updates and asked not to call during this stressful time.

But I'm already starting to feel worn out. What can I do to lessen the stress I feel that comes with being the only person in the area who they will allow to come in and care for them? They won't even go for counseling! I have to act as their personal counselor, which is not an appropriate position for any daughter to be in. I encourage them to do things like go for counseling, but they simply will not do it...so I'm stuck.

Re: Mistri...

mistriTsquirrel — Wed, 15 Jan 2014 10:02:57 GMT

Jules-

I know you have to wait for the MRI results, but did things go okay at your dad's appointments otherwise?

--mistri

Re: Mistri...

JustJules — Wed, 15 Jan 2014 21:13:43 GMT

On 1/15/2014 mistriTsquirrel said:
Jules-

I know you have to wait for the MRI results, but did things go okay at your dad's appointments otherwise?

--mistri

Mistri... I just read your post, and wow!!! You are dealing with a lot of different things and no wonder you are so stressed. All I can suggest is take a deep breath and keep plowing forward. First of all, it is wonderful that you are there for your dad, during his chemo treatment, and that you are making yourself informed and aware. I agree, there are things doctors forget to tell us, or neglect to share information, perhaps because some patients are just "sheeple" and follow blindly without wanting to be informed. I have always believed that knowledge is power, and I do question my father's treatment. Even in the case of him him having this MRI, I had to be the one to bring it up to his doctor. Our last visit, he said to me, lets do an MRI in Dec/Jan so we go to see him on Monday, and he says nothing. As we are wrapping things up, I had to be the one to ask about the MRI. He has the nerve to say to me "when was the last time we did one?" I seriously wanted to say to him, I dunno doc, you have his f*ing file, look at it. I just told him, I thought it was around June if I recalled correctly, so he said, oh yes we need to follow up. So he scheduled one for the the next day (yesterday). I understand doctors are overloaded, but it would be nice if they took time to review their patients charts and history before seeing them. My dad has been his patient for years... if I was a stupid person and not involved in my dad's healthcare, I would not have mentioned it, and the MRI would not be done. I understand medicine is not a perfect science, but when it is your loved one, it is really important they get the best care.

I am so very sorry about your mom's behavior. While it is counterproductive and frustrating to you, it might just be her way of dealing with facing the loss of her spouse. People react differently when faced with death and loss. Her anger towards him is probably her reaction to being angry about the situation, and she vents it on him. While difficult and miserable for you to watch, it might be her process. Perhaps you could take your mom to lunch and have a discussion, share your feelings about how her actions towards your dad make you feel. Maybe you can make her realize that her time with your father is limited, and her anger is not productive. It is such an emotional thing, and difficult for everyone involved. My heart breaks for you. In my case, it is really just my father and myself, and while I have days that I get fed up with him, he knows I love him and we always go to bed saying we love each other.

You have so much you are trying to carry on your shoulders right now. You're a daughter first and foremost, not their caretakers or therapists, but of course you want the best for them both. I think it's great that you are doing research for your father's condition, and I would be very concerned for your mother. Clearly, based on what you have said about her sleeping so much and the hoarding issues, she is depressed, and your father's illness is only contributing to that. Is she currently under any treatment or seeing anyone for therapy? As your dad's condition worsens, she will probably decline as well. That is a lot of pressure on you, and while unfair, it is just sometimes part of life. It is not your job to be their counselor, you are their daughter and your love and care is enough. Try to rely on your brother for support, obviously this is very painful for him based on what you shared about your holiday experience. You are only one person Mistri, you cannot carry the world on your shoulders or fix everything, even though you want to. You need to make time for yourself, although I can relate to how impossible that can be, take time to relax and regroup. It is wonderful that you are doing research and want to be educated to help your dad and others, but sometimes you need to just take time for you. I'm truly so sorry that you are going through this, sometimes life really loads up our plate to the point when it is just spilling over and we wonder how to cope. You're a strong and very intelligent woman, and just take one day at a time. My only advice right now would be to cherish each moment with your father, that seems to be a priority.

Thanks for asking about my dad, things are fine. We won't have any results from the MRI for a few days. He got his new cath with his favorite male nurse that somehow does it without causing him pain, so we joked that he got his new oil change and is good for another 6 weeks.

I have such compassion for you.... I know how I feel so completely alone some days, really have no family support. So I understand what you are dealing with, not just illness and loss, but a family situation. You're a strong woman, but it's okay to break... you can't carry the burden alone so don't try to. Just keep doing what you are doing and give your dad your love while you can. I keep you all in my prayers.

Re: Mistri...

mistriTsquirrel — Thu, 16 Jan 2014 11:09:34 GMT

Thank you so much, Jules!! I'm glad we are able to communicate on this level. It's much more pleasant.

I definitely agree that we need to be our dads' advocates. I try to view things from this perspective: the doctor or nurse has many patients, but I have one dad. The doctor may not remember whether or not certain things were discussed, or certain information he may ask us about ("how were your blood counts last time?") may be buried under 12 pages of updates from other doctors...so they just figure it's quicker to ask us, since we may remember, and may save them the time of having to fish through all of the information. It's worrisome to think that the doctor may not know what's going on, but I try to look at it as the way things are...that the doctor is human, and I'm going to arm myself with knowledge so that--hopefully--I know enough to know when things are being overlooked.

I've made it a point to look at what I find out about his meds and if something isn't clear, I make a note to ask his doctor. My mom and I got into an argument the other day; I had told her I could pick him up and take him to chemo on Tuesday morning, she told me what time to be there. Before the day arrived, my mom told me not to ask too many questions of the doctor. I asked why she wouldn't want me to ask questions. She said I would take up too much of his/her time. I told her that if something was causing me concern, that I would ask about it. She told me fine, just don't take up too much of their time with it; the doctor can call you back with answers if need be. I reminded her that I don't have legal standing to expect them to call me. She asked why I need to ask all these questions anyway. I told her that I want to make sure my dad gets the best care. I don't want to lie awake at night worrying about that, and I don't want to look back after he is gone and wonder if I did enough. The whole discussion irked her, because she's worried about what the doctors will think...and she didn't like the fact that I told her I was going to do something anyway, without her approval. I don't care what they think about me, and they haven't seemed bothered by my questions so far, so I see it as a non-issue. However, when I arrived to take my dad to chemo, my mother had already left early with him. That was her way of trying to control how many questions I got to ask, by leaving me out. I was angry, but I stopped by the oncology place and asked some questions anyway.

I understand that this controlling beast is coming out because she feels her world spinning out of control...but it isn't fair that the rest of us have to suffer. I've asked her many times over the years to get counseling to help her learn to cope with things a little better. I've asked her to talk to her psychiatrist about her meds and getting them changed. I've asked her to talk to her GP about upping her Synthroid. She doesn't do anything to make her life better, and the ones around her have to suffer for her reluctance to be open to change. I'm going to limit the amount of discussions I have with her regarding his care, I think, and just ask the doctors directly...then I can relay the info to her afterwards. I do intend to intercede on his behalf if I see her bullying him. The challenge for me will be to not let her push my buttons to the point that I lose my temper.

I don't like to have to be a counselor for them, but they don't seem willing to get outside help...and they are both in crisis right now. Oddly enough, my ex-boyfriend has been a listening ear for me, and that has helped me a lot. We also spend a lot of time talking about other things and we laugh a lot, which also helps. I don't know how things will turn out, but I'm thankful to have him in my life right now.

My brother and I have talked about what we think will happen with our mom. We both feel it will be best for her if she moves close to where he lives after our dad dies. Then she can spend time with her grandkids, who seem to be her only real joy in life. She and my dad were planning on moving to be near them anyway after my dad retired, but my dad was retired for less than 2 months when he found out he had cancer, so they never got to build that little log cabin they planned to build on land they planned to buy, close to where the grandkids are. So it will probably just be my mom. I just hope she doesn't abandon the plan to move out there, because I think if she stays around here, it will be her undoing.

Anyway, I'm glad to hear your dad didn't have a bad experience at his appointments. I hope the MRI results turn out okay, and don't present any unpleasant surprises. I wonder what it would be like to be my dad, or your dad, and have to go through all of the tests and all of the physical and emotional pain of the person who is so ill. When I think about how bad I feel, I think about what it must be like for my dad. Being a patient never feels good...being terminally ill with cancer is something I can't adequately imagine. I'm struggling, but my dad is in a much worse position. I hope I'm making things easier for him, and that he can feel some amount of peace before he passes away.

Thank you for keeping me and my family in your prayers. I am sending my best wishes to you and your dad, Jules.

Love,

mistri