The Caregiver & Dysfunctional Families: How are you doing?

Veronica, Allison and CM, thank you for all of the info. With SD's daughter here we have started the discussion on what happens when/if this advances to bed bound. I do not think I would be able to do that. Then compound the problem that if he goes to a facility, he wants mom to go with him which would not be good for her. She would be so disoriented, and he would not be with her in memory care. If we brought in hospice at home, that too, would be very difficult emotionally on Mom. She could not deal with it.

Yesterday, while waiting for the CT, he, daughter and I were kind of discussing facility in the future. Then he, completely out of left field, said maybe Wisconsin?! That is part of the VD that I think is developing. He was raised in Wisconsin and is maybe wanting to go home. Though Wisconsin is not an option, coming from his daughter, he either stays in this area, or goes to Delaware where daughter is moving in the fall. He is old school that husbands take care of their wives, financially and emotionally. But, he is past that, Mom's disease is progressing and each day becomes a new set of challenges.

Ay ay ay!!! - thank you Veronica - Glad, I'm so sorry, I should have scanned back through earlier pages, goodness knows what I've missed. Apologies. Hope they get results and a forward plan to you nice and promptly, big hug.

CM I think Glad's step dad's PSA has become largely irrelevent as there is evidence of spread to lymph nodes and scan shows hot spots in his bones.
The UK fact sheet does explain the purpose and results of PSA testing very well and as such is useful patient information.
Clearly they believed Glad's SD had active disease by the fact that they did a biopsy, CT scan and bone scan and began testosterone supression treatment. (or maybe the VA just needed the practice!!!!!!!) Anyway there are lot of things for Glad to think and worry about.

Hi Glad the psa rise and other test results are very worrying for you and your Step Dad. The cancer is definitely spreading as evidenced by the hot spots in his bones and the lymph glands. But at an advanced age a man with prostate cancer may well die of something else first.
My main concern for you is planning ahead and making what may be some tough decisions well in advance.
Are you prepared for him to stay in your home with you as the primary caregiver. as it advances, assuming it does, it is a nasty very painful disease. can you cope with the nursing care needed for a bed bound terminally ill patient. His dementia may also advance with the disease and there will be personality changes as you well know.
Giving these injections if he can tolerate them will help slow the progress of the disease but there are other things they can do. He is beyond the stage where surgical removal of the prostate would be curative given the spread. Look up Provenge. It is extremly expensive but Medicare does cover it and probably the VA too. It does have some nasty side effects though with flulike symptoms in the begining. It can slow the disease and might keep him without symptoms for the rest of his life.
As a veteran he will be eligeable for placement in a VA home as would your mother. Not that I am suggesting you need to do that but it is an option and you should develope ideas for a couple of plans.
My message to you really is to think calmly about all your options before a crisis occers and you can't think straight and are out of your mind with exhaustion.
Blessings

Alison, as you already said, I wouldn't read too much into a strained expression on a junior doctor's face. It could be ANYTHING..!

PSA seems to rocket around all over the place. It's measured in urine, for one thing, so all kinds of things can affect the level. It's only useful, really, as a flag that says "check this patient out!" - and even then, in a youngish man with one freak result, they'll repeat the test before they get too excited.

Unless I've got this wildly wrong, I'm surprised they were waving the BPA levels in front of you - if you check it out, it's to be to do with a different hormone and quite a controversial new approach to diagnosing men at risk. On the other hand so many doctors are getting fed up with how unreliable the PSA test is (and, no doubt, how much time they have to spend explaining it to worried men!) that I'm not surprised they're looking for other, better methods.

This fact sheet (shamelessly pinched off the Prostate Cancer UK website) seems quite helpful:

PSA test
This is a blood test that measures the total amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells. It is normal for all men to have a small amount of PSA in their blood. A raised PSA level may show that you have a problem with your prostate, but not necessarily prostate cancer.

A raised PSA level can show that there might be a problem with your prostate. To find out what this problem may be, your GP will ask you about any symptoms and can do a number of other tests.

A raised PSA level can be a sign of prostate cancer. But some men with a normal PSA level can also have prostate cancer.

The amount of PSA in your blood is measured in nanograms (a billionth of a gram) per millilitre of blood (ng/ml).


What can affect my PSA level?
Age
Urine infection (Your GP will test for this and treat any infection. They will give you the PSA test after treatment.)
An enlarged prostate
Prostatitis
Prostate cancer
Vigorous exercise (You might be asked to avoid vigorous exercise for 48 hours before the test as it may raise your PSA level.)
Ejaculation (You may be asked to avoid sexual activity for 48 hours before the PSA test.)
Biopsy (Prostate biopsy in the six weeks before a PSA test could affect the result.)
A catheter or investigations or operations on your bladder or prostate (You may need to wait up to six weeks before having a PSA test.)
Medicines (Tell your GP if you are taking any prescription or over-the-counter medicines.)


What do the results mean?
A PSA test alone cannot diagnose prostate cancer. PSA naturally rises as men get older and the prostate gland gets bigger. A high PSA level for your age can be a sign of prostate cancer, but it can be caused by other things. The following figures are a very rough guide to 'normal' PSA levels, depending on your age:

up to 3 ng/ml for men in their 50s
up to 4 ng/ml for men in their 60s
up to 5 ng/ml for men in their 70s and over
A very high PSA level (in the hundreds or thousands) normally means that a man has prostate cancer. If your PSA level is only slightly raised, then your doctor would do other tests to find out if there is a problem.

Your GP will consider your PSA level together with your DRE result, any risk factors or other health problems and any previous biopsy results before discussing the next step with you.

If your test results are within the normal range you may not need any further tests or your GP may advise you to have another PSA test in the near future.

If they think that you may have a prostate problem then they might refer you to the hospital. You can also ask your GP to refer you to a hospital specialist.


What are the advantages and disadvantages of the PSA test?
Advantages
It may help pick up a more aggressive cancer at an early stage when treatment may prevent the cancer from becoming more advanced.
Regular PSA tests could be helpful for men who have a higher risk of developing prostate cancer, but we need more evidence about the best way of doing this.

Disadvantages
Around two thirds of men with a raised PSA do not have prostate cancer.
It will not pick up all prostate cancers. Some men with prostate cancer have a normal PSA level.
It cannot tell you whether a prostate cancer is likely to be fast or slow growing (high or low risk). A slow growing cancer may not cause any symptoms or shorten your life.
If your PSA is raised, you may need a biopsy which some men find uncomfortable and has some risks.
Treatment for prostate cancer may cause significant side effects which can affect your daily life.

Glad, I read your first post and thought... "did I remember what BPA (that's what doc called it) number is correctly?" Maybe BPA is slightly different hormone/indicator/whatever than PSA??? I have no clue. Dad's BPA is 160.

Maybe I'm imagining things but young resident doctor who did biopsy called me back into room after procedure and had ... tightened look on his face. He had told me before they even took my father back for biopsy that that as well as collecting biopsy material (they took 12 total tiny samples from prostate) they would do feel and ultrasound exams. Young doc looked strained. Who knows from what. I don't expect prostate cancer but I have to say, based on all collective feedback and overheard remarks about my father's prostate and bladder conditions, I also wouldn't be surprised. Find out in about 3 weeks. Even if worst case scenario - and it almost never is - its treatable. Just... interesting all around. I'm learning much. Thanks for all of your support. (((hugs)))

Book~The thing is, I don't know if these people get their penisions..their pension are through the union. I do not know if it is denied to them...such a shame if it is after all those years, yet...if you are too complacent in your job after several warnings or write ups...it leaves them little recourse. I have not been written up or given any verbal warnings...I think the company is losing money due to Super Wal-Marts,. Super Targets, Food 4 Less, Winco's and outlet grocery stores. Our produce and meats are top of the pick plus were are union so our prices are higher than these other places. I won't shop at a nonunion store. We are not "AT WILL EMPLOYMENT...they must have just cause to fire us. I watch myself always...I am only human..but I have not been written up or given verbal warnings. I don't feel I am being targeted. Lots of love and hugs...I think I am ok...just not entitled and that is good.

As for being Laid Off, that will be at the terms of your company. Depends on what they want to offer to you. Laid off without benefits. Laid off with limited benefits for about a year, etc... Whatever it is, it definitely won't be the same as the retirement benefits.

Sharyn, I'm like that with the airlines. I have dealt with them for years. Yet, when we meet at the stores - with them outside of their uniform - I don't recognize them. Sooo embarrassing.

No, if you are fired from the company, you get NO benefits - no retirement, no medical insurance, etc.... Nothing. That's why I mentioned to you to be very vigilant in your work and give no reason for them to keep writing you up. When they fire an old timer, then the company doesn't have to pay for their retirement, etc... It Still is cheaper to hire the newbies. Once they learn the ropes, they can start releasing more of the oldtimers. You never noticed how younger and younger the 'managers' are in a lot of companies? I know of several airline employees who saw what was happening. They quickly turned in their Retirement request instead of waiting to be forcibly outed. These are people who have been working over 10 years in the company. Just watch the signs, Sharyn. When your gut tells you that it's time to quit, then turn in that retirement request.

I am beat tonight as the bakery manager at my old store called and woke me up this morning, couldn't go back to sleep. I am a night owl so I didn't go to be until after 1 am this morning. Then he called me back an hour later asking if I would work Friday too.

Joan~You bring up a good point that I have always wondered about regarding them firing personnel who have many years in. Do these people get their pensions from the company? What does the company gain by hiring or bring untrained people in...when it creates a situation of OT for the seasoned workers to help the newbies until they get things organized as a newbie? I do know that the company saves on the newbies insurance because they are under a different contract (with the union) than the rest of us. I have a different contract than those who have 10 years seniority.

Anyway, I have peace in not getting involved in the politics and that is more important to me than getting more hours or fighting to be locally. What happens is what happens.

My son'il will be coming out here tomorrow, his mother is already here. I don't expect to see him and will not ask to see him under the circumstances of his visit. My daughter told me the dr's gave him 3-4 once he is home without a feeding tube and water (fluid from IV's). Very sad for the family and if possible, I will go to the service if they have one that is for the public.

On Saturday when I was off, as I headed out the door to the store, a man was walking his dog past my house. I immediately recognized him as a regular customer at my old store. I yelled out to him, "Dennis!" He turned around and walked up my lawn and started talking (he is a talker). He asked if I knew Roger and Donna (*()#((.I said as a matter of fact I do know them, Roger is my daughter's grandfather-in-law. He said I just stopped by their house, no one was home, I have known Roger for years, he was good friends with my father and I know he is ill, is he still at Standford? I told him I was sorry, but Roger is in kidney failure due to colon cancer, he does not have long to live. He told me he wants to visit Roger, wanted to know if they were bringing him home from the hospital or if he would be staying in the hospital. Of course I told him I did not know that and he may want to send them a card.

I talked with my daughter later, she said that the family is very private and will not visitors at the house other than family. Donna will not be able to handle people outside the family as she is very much an introvert and so is Roger. I assured my daughter that I would not tell this customer that Roger is home, I respect their right to chose who they want to visit and to limit it to family. It turns out that Dennis lives just down the street from me and around a corner. Now he knows where I live... he did not know who I was even though I told him I worked at SM. Then I told him, Dennis, I am Sharyn. LOL!!! He didn't recognized me out of uniform!!!

Alison~Lots of appointments...wow..10lbs of extra cargo just in his pockets!! Your dad sounds like a pack rat within his pants...I carry lots of extra stuff in my purse ...hate to think what it weighs. I need to make a podiatrist appointment for my mom, an appointment to get my mammy's grammed ...TMI, I know, LOL!!!

Glad - I think it's great that his daughter actually is taking interest in him, unlike some. I chuckled as I read how she changed her mind about wanting siblings after hearing your story. It's going to be hard for both of them. I don't know how you guys are going to decide on your stepfather's future care. It's a darn if you and darn if you don't.

Glad~I don't know much about prostrate or the PSA levels. I am glad you have his daughter as an ally in your court (so to speak), It must be frustrating for you taking care of both him and your mother. Big {{{{Hugs}}}} for you, try to keep your stress level down, if possible.

His daughter and I have started the conversation about it's. It is a bit frightening to think about especially when he talks of moving mom if he has to so they can be close together. I know what would happen. Either he would feel obligated to spend days with her in memory care or share a unit. Been there, done that! She is way too much for him to handle.

Thanks for the info on high PSA! WOW, 3656? I feel better now. Maybe.....

Hi glad this is what I found on the internet - "In his recent book on Hormonal Therapy Dr Myers gives a case study of one of his patients of 6 years who had PSA of 3,656 in 2000. "

That's pretty high. You have a heavy load with your mum and her partner. Good that his daughter is such a nice person. I am happy you had a great visit with her. She must be very grateful that you are caring for her dad. With his illness the work may get quite a bit heavier in future. ((((((hugs))))))

Allison, what is your Dad's PSA? Just curious, I have never dealt with this before. But I do know what is considered normal is below 3 or 4? So, 93 in my opinion is off the charts! How high can it go? Anybody know?

Thanks for asking Emjo. Took Mom's hubby to urologist today for CT scan, results of bone scan and naturally visit with the doc on the results.

Allison, we are dealing with prostate cancer here. Had him to then doc a week and a half ago, PSA was 93.68 up from 16 about 9 months ago. In the past 3 years his PSA has fluctuated between 16 and 35. But 93?! The doc was not very clear on the bone scan but sounded like there are some areas to watch. The CT scan showed the cancer had metasized into some lymph nodes in the area. So, they are treating him with injections, the first one was today and will treat him for 30 days. The doc wants to see how he tolerates it, then next one will be a six month treatment. The injections stop the production of testosterone so will stop the cancer. Doc expects his PSA will be dramatically lower next month. But if today is any indicator I am not sure how he will tolerate the injections. He has been dry heaving much of the evening, just does not look himself. One of the side effects of the injections is hot flashes! I say HOORAY! This man is always cold! He was still turning up the heat in the house a couple of weeks ago! He refuses to use then heated throw, I suppose like other men I have known, he is afraid that the family jewels will be harmed in some way. Has anybody else heard this from men about electric blankets? What is there to worry about? Infertility?! REALLY?! Just an absurd thought to me. I have other thoughts related tonrocky mountain oysters, but won't go there! LOL!

His daughter had scheduled a visit this week, so she came with us to the doc. What I would give yo have even one sister as sweet, helpful and interested in what is going on with mom and him! She is an only child, always wanted siblings, but after hearing some of my stories she is glad she is an only. I told her, naturally she could have both of mine.

So all in all he is doing as well as can be expected. I do see his cognition and reasoning skills declining which is more noticeable to his daughter since she does not see him as often as she would like. His biggest concern about this whole thing was the effect it would have on his ability to care for my mom! He is a great help because he will sit with her, hold hands, etc which keeps mom occupied and busy.

Went on longer than I had planned.

Hi kazzaa - G and I are looking for rings. We both said we wanted this to be permanent when we first got together, but we also needed to know what we could work out our conflicts. Tthere always are conflicts. I would rather be alone than in a stressful relationship, In the past 6 months we have been feeling confident, so we are moving ahead. No date yet. Honeymoon in Ireland would be awesome!!! Thanks for asking. :-)

Emjo was just about to switch off and just noticed "wedding" in the feed?? is there something i dont know? are you getting married? i dont come on here much as its too long to go through all the threads! And when i came back you said no news?? why this is huge "honeymoon in ireland".

sharyn I think you are wise to stay out of the politics. It does happen that places lay off the more experienced staff - not sure how much benefit they get from it. No wedding planning for now. G and I are not on the same page re a ring for me. We will work it out, but it will take some time. Too much discomfort with the dental work to do much of anything. The headaches have stopped thankfully. Tomorrow I go for impressions for the two implants already placed.

marg -quite the shopping trip - I bet you don't want to do that again. dry drunk is someone who is not currently drinking (your neighbour is drinking), but hasn't dealt with the emotional issues so is "restless, irritable, and discontented". I think there are reasons why her kids aren't around.

Austin - you have done what you can. I am glad you are at peace with that.

Alison - lots of appointments - no wonder your dad is light weight - carrying all that around. You might have a weight loss method there. Let us know about the biopsy. It does sound like he needs an evaluation.

judda - wonderful - enjoy it while you can. It may be bait but enjoy it for now.

glad - how's your mum's partner?

loo - I saw on another thread that you WILL NOT keep your bro informed and you will not give him money. . Good for you. I stopped communicating with my sis after she accused me of having a vested interest in mother's demise and wanted me to step down as POA. Thinking of you re tomorrow. Deep breaths!

If I have missed anyone -not intentional. I am really tired today -maybe 11 days of pain and discomfort have done that. plus the nonsense with my sis over mother and D giving them the wrong impression.

If I ever doubted that my sis is a narc, I need only remember this. My nephew wrote that he was late in getting his mother a b'day card so now she is sending him sarcastic b'day cards. His b'day is in a couple of days. It is the sort of thing mother would do. Good heavens. A "Happy Birthday" on face book is all I get from my boys and I am quite content with that. Eyes rolling, head shaking...

Have a good evening everyone, and do something good for you!

Victory today! Mom sent me an email about how she appreciated what I did for her!
Of course I still have to be on guard, as this often turns out to be bait for later antics, but I am going to enjoy the niceness for now. I sent her a note back saying I appreciate that she did that.

Hi everybody -

Hope everyone's well, have about 15 comment posts to catch up on.

Today went and got my father's prostate biopsy done. I learned that he does indeed have elevated BPA (bisphenol A) which can be a marker for prostate cancer but isn't necessarily indicative of it at all... can be present in enlarged prostate, too.

Two more days of doc appointments for him this week. Tomorrow is a follow up with new PCP. I need to write a letter detailing WHY my father needs to get neurological/psychological examinations but I'm beat from the long day up at the VA. I mentioned before I was pretty disappointed the new PCP didn't see any reason to do those types of exams, because trying to get those done was one of my biggest motivating factors for getting dad out of VA and into a new geriatrician.

Learned today that dad does indeed carry around 10 pounds of extra stuff on him every time we go out... nurse weighed him in hospital gown and he weighed 117. That's at least 10 lbs less than any previous recorded weight - she looked up his previous weights in the system at VA and gave me that bit of info after I was showing her how much stuff he hauls around. (I had to hang on to some of it while his procedure was done and she was like "oh my goodness, Mr. Jones, that's a lot of stuff.") Again, I was just happy for the opportunity to express to her, in front of my father, that he is excessive in this area. And when we got back to the vehicle to leave VA, he let me keep all of his change money (several pounds right there) in my change holder in the truck. :-) Some small progress was made! But the downside of more than just that he carries around all that stuff - my father is underweight and I didn't realize how much. I picked up two cases of Ensure on the way home. The nurse said for him to drink a couple each day. They didn't have the "weight gainer/extra calories" type at the grocery store, I might have to see if I can't buy it online.

Hugs, everybody. I'll try to catch up with some posts and see how you all are doing.

Austin-I agree, why bring on stress if I can keep that stress out of my life....already enough. LOL!

Shary it is good you are letting things settle as it will where you work for now-in a way it might be better to work at both places and not get too involved with the personalities -sometimes detaching at work works better in the long run.

Ilooloo-I am glad you got the license issue resolved. It is hard to do but their safety and others safety is more important. Taking a break is good for your mental health and will give your mother time to adjust to new situation.

Margeaux-glad your neighbor paid you back. Maybe in the future you try to see that she is more organized before leaving....though I know you don't want to have to be that involved. I cant blame you for that either.

Joan-i understand those feelings. I too felt that way back in 2012 when my mother was so combative and I seriously thought about informing her attorney that I did not want the responsibility. I kept thinking maybe she will die soon...it is normal ..at I think so when dealing with so much stress. I hope you can enjoy the wedding planning and it will get your mind on something more pleasant.

I worked at my old store yesterday...found out they have posted an opening so I told the assistant store manager I wanted to put in a bid for it. Well...he said you cant, you are already a bakery/deli clerk. In other words, they want to hire someone off the street so they can start them at beginning wages. In stead of fighting it, I decided if it was meant for me to work locally, it will happen without me fighting and making noise over it. In the meantime, I am working there Wednesday, Friday, and Sunday plus the 21 hours I am working at the other store with a little OT.

Glad,

Thanks. Yes, when we returned home, I helped her take her groceries into her house. She didn't bring up anything about the cash. I left, because I had perishables to store right away. Fifteen mins., later there was a knock at the door.
It was her, w/the receipt of her purchases, and she gave me the money. She just irritated me, when she did this argumentative behavior about she being able to use my membership card. As per what I wrote about the whole incident, if that had been me, I would have apologized. She just acted as if nothing had happened.
This is typical behavior by her. She is needing help current day, why? Because her own kids don't give a rat's a** about her. But I think she probably had been drinking, not like that morning, but the night before. This lady doesn't know what it is to have a glass of wine, she drinks the whole bottle. I'm sure many times other than lacking in serious social skills, it's also some of the alcohol at play here.

Much Love & Light! Margeaux

Margeaux, how irritating! At least now you'll have the charges broken out separately on your credit card bill. Are you concerned that this neighbor will begin relying on you a bit more? I'd be ok with showing a little more concern, but certainly would not want to be solely responsible.

Emjo thanks for asking-saw friends in church who are friends and neighbors of my brother -they feel so bad for me being treated like my brother did to me-they went to visit him and were appalled he was left alone and can not understand his son and wife not wanting to spend time with him as he is so sick and they will never get this time back and told me I did the right thing calling his son and wife letting them know he should not be left alone-I have not heard anything more so do not know if he had the heart tests or if the wife is still too busy to take him-I am feeling better about the whole thing now and know I did what had to be done -I am no longer a mandated reporter for abuse since I gave up my nursing license when I left work-I was not able to keep up the requirement's -someone else would have to report the abuse and my brother would only tell lies anyway -my brother's MIL was reported for abuse to her late husband and had to pay for an aide to be in the house .

many times posts are not noted on my email-joined a group of friends with fibro and it is unbelievable how many posts are listed on my email hundreds.

Margeaux, I sure hope you get the cash for purchasing items for your neighbor!