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Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/30/2009 12:05 AM (GMT -6)   
I've been quiet since my initial batch of posts a few weeks back. For those of you who didn't read my initial posts, my father has HRPC with bone metastases. He's had radiation, no chemo. He's also had to have a couple of blood transfusions recently and has been having some issues with low platelets and low WBC counts. I have told him about his impending grandfatherhood, and while he seemed pleased and happy for me, he didn't have much of a reaction. Today, he's talking about hoping to make it until Christmas, but wondering if that may be too optimistic.

I had planned to come down yesterday evening, but got a call yesterday morning from my father letting me know he was in the ER and not doing well. So, thanks to the great customer service folks at Southwest, I got an earlier flight and made it down in the early afternoon. He was still in the ER at that point, getting a blood transfusion and some antibiotics. Turns out he's got a cellulitis infection in his feet and lower legs. His WBC count was 1.0, so the infection was a source of significant concern. It appears that the blood transfusion and antibiotics have him on the road to improvement, but he's going to be in the hospital a few more days.

I've spoken at length with a friend of his who's been helping take care of him, and she's got some concerns. On the milder side, he's not showering very often. She also thinks he isn't eating very much, and says that he often has difficulty walking, is using his computer chair to move himself around his condo, and refuses to get a wheelchair. I'm sad about all of that, but wanting to respect his choices and desire for independence as much as possible.

Here's the biggest concern, though: he appears to have developed some pretty severe incontinence over the past few weeks, and is refusing to wear diapers or clean up after himself. For someone who's been having low WBC counts for a couple months, this seems potentially deadly. As I understand it, could have actually caused this cellulitis infection he's now fighting.

So, at what point does one step in? I haven't seen anything in my direct interactions with him to suggest his mental functioning is significantly impaired, but the behavior at home is worrisome. Any input you can provide would be welcomed.

-Steve

Post Edited (Support4myDad) : 8/30/2009 8:36:19 AM (GMT-6)


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 8/30/2009 8:02 AM (GMT -6)   
This sounds like a bad situation, and I am sorry for your troubles. You are right to be gravely concerned. You didn't say when your dad finished his radiation or his age. There can be a significant lag time between radiation treatments and any therapeutic success. The low WBC and platelet counts are my most immediate concern. His mental status in a close second in concern. The two may be separate things or related in some way. In any event, if this man is attempting to live at least semi-independently, he is, IMO, courting trouble of a very serious type. I realize from personal experience that you may have some degree of denial about your parent, but it would seem that it is time to impress upon him that despite his wishes, you are obligated to care for him, much as he once cared for your needs. Infection of any kind can really lay low a man such as this, and combined with blood abnormalities, a possible organic brain syndrome, and loss of sphincter control, more trouble seems just around the corner. I wish you the best and the courage to do what must be done.
70 years old USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and BS
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Potency: beginning tumescence??? at 3 weeks post-op


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/30/2009 9:06 AM (GMT -6)   
Steve, a sad story to read this Sunday morning. My heart goes out for you directily and of course for your dad. Let me ask you an important legal question. Does he have a medical power of attorney agreement in place? If so, are you his designated choice. If no, you should print off info off the computer or most doctor's offices have blank forms, and discuss the subject with him. If so, then you might need to start taking control of his situation on his behalf, for his own good.

Right now, and assuming he has no such document in place, he can do or not do as he pleases (and trust me, I am all about freedom and right of choice, etc). But in his fragile and deteriorating medical conditon, if he's not going to do the right things, or is in capable mentally or emotionally, or even because of clinical depression, then someone needs to be his personal advocate and make sure that he is getting all the care he obviously needs.

You poor father probably is suffering from deep or clinical depression, from the reaction to everyday things like you described. No, not pretending to be a doctor.

I am thankful that he has a son like you that cares enough to reach out for help for him. I know its got to be eating you up to seem him this way and acting in these odd manners.

Please think about what I said, and post back sooner.

David in SC
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, 8/18 - laser scope surgery to clear blockage, now on Cath #7, 8/26 - cath removed
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/30/2009 9:20 AM (GMT -6)   
Brainsurgeon, David thanks for your replies. My dad is 74, and I believe he completed his radiation in June. I have not seen my father since last October, and it was only in mid-July that I developed any awareness his cancer had become hormone-refractory.

One of the challenges for me has been trying to get a clear picture of just where things are with him, and as I've started to get an understanding of how much his cancer has progressed, I've been trying to find the appropriate line between respecting his wishes and choices and taking action for his own safety. My father has always been a very private person, which makes it hard for me to know what's going on with him. The friend who has been looking after him has been wanting to get my phone number from my dad for months, but he refused to give it to her.

I don't know that he has a medical power of attorney document in place, but if so, it would be his friend who has been taking care of him who would be the designated person. I believe that his living will identifies her as the person who gets to make the call if he ends up in a coma or on life support of any kind.

His friend is coming back up to the hospital today and we are hoping to discuss this with him. I'll update to let you know how it goes. Thanks again for your replies and support.

-Steve

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/30/2009 10:01 AM (GMT -6)   
Steve, that already sounds like a positive step in the right direction. Be real open with his friend on the subject, they may not know either of his deterirating situation. Healthcare and homecare workers will tell you that is a sure sympton of this situation, when the person stops taking care of themselves, i.e. showering, shaving, etc.

Hope something good comes out of what seems dark and bad right now.

David in SC
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, 8/18 - laser scope surgery to clear blockage, now on Cath #7, 8/26 - cath removed
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/31/2009 10:19 AM (GMT -6)   
You have my deep sympathy. My father had a stroke, and there were multiple issues of caring for him which had to be dealt with, including an unrealistic desire to remain completely independent.

It sounds like your like your father needs a rather complete medical work-up both to plan follow-up treatments and to evaluate his ability to care for himself. His mental state may be depression, but it may have other causes that are less treatable. Many hospitals now have a Patient Care Coordinator, generally an RN, to help deal with patients who need treatment for multiple ailments. Ask questions at the hospital – you may have to go beyond the first answer that you get.

By the way, almost every hospital will have forms for establishing a medical power of attorney that meet the requirements of state law. A nurse who is caring for him can serve as a witness.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/31/2009 10:31 AM (GMT -6)   
Steve,
You did well in letting your dad know about the baby. I am certain it has a positive effect. Your dad is challenged by everything bad about this disease, but he has you looking in on him and that is a blessing. I don't know that has access to it, but perhaps a daily home nurse stopping in might help. Home hospice of sorts. You can certainly ask him about it. He probably does not want to go to hospice but it some cases it can come to him.

My prayers of love and peace for your family will be said...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/31/2009 3:41 PM (GMT -6)   
I second Tony's point about exploring your dad's options. Since he is probably on Medicare, there is some provision for in-home care after hospitalization (unfortunately for a rather limited time period.) Again, ask around the hospital because they will have people with a full grasp of all of the possibilities.

In fact, think of the hospital as an information resource. If someone gives you helpful information, ask them who else you should talk to.

We hope for the best for your dad and we hope you remember to care for yourself too. You have suddenly had a huge burden dropped on you and you have to cut yourself some slack as you work through this.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/31/2009 4:26 PM (GMT -6)   
Hi everyone -

I spent a lot of time yesterday speaking with the MDs at the hospital, and they've assured me that they'll be doing a close assessment of my father's ability to manage 'activities of daily living' will be completed prior to any discharge. We had a talk with him yesterday about the possibility of having either in-home care or placement in a residential facility, and I don't think he likes either idea, but grudgingly indicated a willingness to consider it.

My father is ex-Navy, and has a close friend in the area who is also ex-military and pretty savvy at navigating the VA system. It sounds like there are definitely some good options available through that route which my dad would be available for, and I believe he would also be eligible for hospice care through Medicare.

Yesterday was a challenging day. He says that he is feeling better, but I noticed yesterday some disorientation with regards to dates/names/etc that was new. Also, the doctors have indicated that my father now has developed heart disease and have put him on a beta-blocker to help manage that. His infection is continuing to improve, but it sounds like Wednesday would be the soonest he'd possibly be discharged. It is sounding like his current condition may take chemo off the table as a treatment option, and his new oncologist had indicated he'd need to start chemo soon if he was going to do it at all, so I don't think that option will be open for him. That said, I think my father has been anti-chemo from the beginning, but just hasn't been willing or able to say that.

I'm heading back down on Thursday and will stay there until Sunday, most likely.

In addition to the challenges of helping my father with his current medical problems and tackling end-of-life concerns, I've also become aware (through friends) of a lot of things that my father has never stated directly to me, and that has been another stressor for me. Mostly at this point I'm trying to support him, help ensure he gets the most appropriate care possible, and to turn to my support systems and lean on them as I go through all of this. Generally I feel like I'm doing ok.

Thanks so much for the input and support. Greatly appreciated!

-Steve

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/31/2009 4:40 PM (GMT -6)   
Good luck, Steve,
You are doing very well supporting him. I anm certain you will do what's best for him. Don't forget to take care of you, too...just a thought...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/31/2009 6:13 PM (GMT -6)   
Steve, I agree with Tony's sentiment. The best way to continue to help your dad, is to make sure you still take care of yourself. You have a lot on your plate, a lot to deal with and to contemplate, my heart goes out still for the both of you. Sounds like you are doing all the right steps and things. It's never easy to go through that kind of situation.

Please keep us posted, and we are here for you too, anytime.

David in SC
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, 8/18 - laser scope surgery to clear blockage, now on Cath #7, 8/26 - cath removed
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 9/1/2009 3:04 AM (GMT -6)   
Sounds pretty clear that the father is not capable of caring for himself, or he's given up on living.  Since he's not letting the son into his life, and we don't know the family interaction history here, the son should contact social service agencies in the community where the father lives so that someone can evaluate his care and determine what's in his best interest.  This sort of conversation shouldn't be taking place on a forum such as this, primarily, but with the father's primary care physician.  Focus should be on the dad, not the son.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/1/2009 8:13 AM (GMT -6)   
Mavica, unless I read a lot of posts wrong, focus is on the father first, but there needs to be focus on the family too, i.e. the son in this case. Most major medical crisises involve a whole team of people, spouse if there is one, sons/daughters, grandchildren if any, all of them are effected by the negative side of soemthing as serious as this case.

David in SC
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, 8/18 - laser scope surgery to clear blockage, now on Cath #7, 8/26 - cath removed
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 9/1/2009 8:23 AM (GMT -6)   
Seems to me the situation is being brought under control, and the father is beginning to receive the care and attention he needs. The son's presence here is in the form of his sharing his feelings, gaining information, and asking questions. I am soon maybe gonna be facing the same situation with my mother-maybe- and will/would welcome any advice I can get from any source, but especially guys and gals here who have walked that path before me. Our discussions here about it with the son takes nothing away from what support his Dad is getting, and may have made a difference in the speed and quality of care that he is getting. Because the Dad isn't here, the focus can be on the son, and causes no damage to either... Just my opinion...

Steve, don't go anywhere until you no longer need us, ok? . smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.05ml 2X week continues
PSA's: .04 each test since surgery


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 9/2/2009 2:53 AM (GMT -6)   
Don't worry, I'm not going anywhere. Mavica, could you help me understand what part of my post you saw as focusing on me and not my dad? I started this thread to get input on what the right thing is to help my dad in this situation, and I'm posting here because it's a place to get feedback from folks who have been there. Yes, it's also a place to share my feelings, but that's to help me maintain the strength to help support my dad. *shrug*

Per the report from my father's friend, they had him sitting up in a chair yesterday at the hopsital, but he was unable to stay there for any length of time. So, while his infection continues to improve, he's still quite weak and unable to function on his own right now. He's also developing what appears to be another lymphedema on his arm, which is a concern.

I received a call from my father's case manager this morning informing me that he has been moved to a SNF. I have phoned my dad directly, but haven't reached him to speak with him. I'll be heading down to see him tomorrow AM.

-Steve

(edited to remove duplicate name, update current info)

Post Edited (Support4myDad) : 9/2/2009 4:21:55 PM (GMT-6)

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