The Caregiver & Dysfunctional Families: How are you doing?

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.

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?

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))))))

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.....

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.

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.

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!!!

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!!!

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.

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.

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.

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)))

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.

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

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.

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.

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.

Glad a lot can happen between now and the fall. but you are thinking ahead before the you know what hits the fan

Very rough times for you and the family, Glad, I'm sorry. Check in often!

===GladI'mHere - hugs and serenity vibes from here to you! My goodness.

===I am blessed. I have no siblings to deal with. I hear horror stories from colleagues, friends, and on this site. I've seen the angry disputes with my mom & her sisters. No. Thank. You. Me, Myself, & I are enough on this committee.

Even though mom swears I was a twin and during delivery the other one died and they wouldn't tell her about it in some bizarre delivery room conspiracy. She wasn't even conscious at delivery. I was a c-section with general anesthesia. They had never predicted twins at any of her previous doctor visits due to her size or heartbeats. There was no death record. My dad never mentioned anything like this. I would think that he would have had to sign something - even if it was 1971.

It wouldn't be a story from my mom if it wasn't loony as Lake Superior.
But she is the one who SWEARS that 90% of doctors are fake and unlicensed and all the nurses are being replaced by Nigerians. She's on an anti-Nigerian streak this week.

Sandwich, do you want my siblings? They are on fire sale this week! But SD daughter is wonderful, so appreciative, helpful, supportive!

Our 87 year old's husband died with prostate cancer and RA, the couple kept it together for the whole time until he passed, which made the manifestation of earlier stages of Alz/Dem. diagnosis attributed to stress...

I also worked in a nursing home where couples were not in the same stages of anything but one clearly needed to be there, as long as they were together, they made it through...

This is a tough one, I agree have Plan B and Plan C in place, once talked about can help you work through this tough decision.

Sharynmarie,

First of all I just want to say that I'm no lawyer, so just want to throw out the disclaimer here. Apparently from some research I've done about retirement plans, there's something called the Employment Retirement Security Act of 1974.
(ERISA) Generally speaking a retirement plan is not supposed to be taken away, not even in the case of termination. This is protected under federal law. But of course, it depends what kind of retirement plan one has. Some plans do require an amployee be at the company for a specific amount of time. Then there's something called "vestment." This happens after an employee has been at a company for a specified amount of years. Then the employee can apply for "vestment." This would mean that the retirement fund cannot later be rescinded.
Anyway, specific laws that some people seek out labor law attorneys for expert advice.

Anyone can give subjective opinions about people they know, and what they've experienced, but better to be sure about something like retirement plan rules.

Much Love & Light! Margeaux

My thoughts about my comment regarding young doc "looking a little strained"... After posting I thought about how my father reacts to pain and needles (he's the most extreme fraidy-cat that I, personally, have ever seen, and very jumpy) and this young doc-in-training had to stick a bunch of needles up father's back passage to numb him and take the 12 biopsy samples... it couldn't have been any fun for anyone involved.

I mentioned BPA to PCP doc today during follow up visit. PCP doc was also surprised to hear that terminology instead of the typical PSA. I have no idea why the VA Urology Department would choose to test BPA in my father's case. If PSA levels were tested previously, I have no knowledge about it. Well, results in about 3 weeks...

Would like to give more feedback and go into other things but I'm so tired. So good night to all and be back soon. (((hugs)))

Glad~My heart goes out to you and your step daughter. You both are doing a great job with caregiving. I hope as this progresses with your step father, some positive treatment will be available to help him. You and step daughter can get help and support with in home care. Take care of yourself.

Margeaux~Thank you for the information on retirement. I know that we are vested with the union after 10 years. I need to look into this further just so I know what is what.

Alison~Keep us informed about the results. All I know about prostrate cancer is that it is slow growing (but maybe not always). My bil's ex wife lost her father to prostrate cancer back in the 90's, he had it for many years...what treatments were available then, I don't know...I just know that he was not treated.

Speaking of cancer, my niece will be receiving chemo for 1 year...so many weeks of chemo, then a week or 2 off, then so many more weeks on...for a year.They are taking aggressive action to hopefully make sure the cancer does not return. My nephew got to where he was allergic to the chemo, he would break out with blisters all over his body. My brother said there are like 250 different types of chemo and they tried several different chemo's with Chris but he could no longer tolerate it.Hang in there and take some time for yourself.

My daughter had an OB appt today. The boys are 2lb 10oz. I don't know if this their combined weight or their individual weight. but for twins at 6 months, I think this is good either way. Their heads, however, are the size of babies one week older, LOL!! A couple of egoists on our hands!! I asked my daughter when her next appt is, she said Friday...her bp is up a bit and there is protein in her urine. They will do further tests to rule out preclampsia. This is a complication of multiple births and for women who are obese prior to pregnancy (which my daughter is), women who have a history of high bp prior to pregnancy (which my daughter has had but she has been able to manage it with regular exercise) and it can happen with a first pregnancy. I am not too overly concerned at this point, we will know more on Friday.

I speller that wrong..Irs. preeclampsia.

I guess I better start studying the abbreviations thread as I used SD, which was thinking step dad, funny I am the step daughter. It is hard to use these terms at all. Mom was 80 when they married. It is very hard for me to consider him step dad, much less stepfather. Maybe I will just start using a single letter.

Reminds me of a email MD (most dysfunctional) sis sent to everyone a few years ago that referred to mom and P as "our parents", actually made me sick! MD is so freaking needy, narcissistic, etc. Just cannot stand to be anywhere near her any more.

Alison ref the BPA, maybe they're collecting data for a study and meanwhile using it as a marker. It does sound as if it's of serious interest, don't you think?