When is it time to step in?

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)

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

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

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

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

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

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

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)