need guidance

[loveskirn]

I am a new BSN grad awaiting my opportunity to the NCLEX, and very excited about starting my second career as a nurse (first degree in business)! But this post is not about my future in nursing, it about my father in law, FIL, and his declining health.

For the past 4 years, since my MIL passed from brain CA, I have been involved in my FILs healthcare. I tell him he is my greatest patient and always will be................

History-HTN, Hyperlipedemia, MI, double Bipass, CHF, AAA repair, CRF, glaucoma,

dx of bladder cancer, transitional cell carcinoma, CIS, in 2006.

Multiple rounds of BCG successful and evetually failed leading to radical cystoprostatectomy in 2011. Path report was lymph node neg, cancer in prostate and bladder indicated high grade CIS non-invasive TCC. Illeal Conduit urostomy successful with clean ureter margins. Once recovered his health was stable until December 2012 when an initial UTI proved to be urosepsis, and bilateral infection of psoas muscules with group beta step, left hydronephosis. The infectious disease doctor could not explain the GBS infection, and was puzzled himself but belieived 6 weeks of IV ATB, rehab, would clear everything up but wanted us to follow up on the hydronephrosis.

Urologist is unconcered about hydronephrosis, states it being due to stents put it.

April 2013- AAA endovascular repair completed successfully

August 2013- Signs of infection appear again- confusion, temp, exhaustion. After admitted for 3 weeks doctors determine that AAA repair shows a leak/infection and they recommend a extra-anatomical bypass to stump the aorta and avoid rupture and inaddition a nephrouretertomy during the same surgery since a brush biopsy found TCC in the ureter (but unstagable). These surgeries carried a 50% mortality risk for my FIL, due to comorbidities and advanced age, 80. He declined the surgery and they explained weeks to months to live, maybe a year but very unlikely anymore. Since GBS infection and E. coli were cultured in abcesses he underwent another PICC and ATB and is not on continuous oral Kefflex. He recovered, had 6 weeks of rehab, but with a permenant nephrostomy tube for the left kidney that had a blockage in the ureter.

The neph tube is changed every 3 months and was internalized in November.

Since January 2014 my FIL started complaining of a gnawing sensation in his low abdomen, that keeps him up at night. It appeared to bother him more each week, causing less sleep and he is too stubborn to ask for or take pain medication!

When his nephrostomy tube was changed at the end of April 2014 he had persistant hematuria (dark red) for about 5 days (interventional radiologist seemed unconcerned and declined my suggestion for bloodwork after day 4) and then presented with fever, confusion, and exhaustion. Back to hospital, to find low H & H, slight leukocytosis, temp 102, and SOB. He stayed in the hospital for about 2 weeks, 4 units of blood, hydronephrosis due to blockage now on right side, and they were not able to completley resolve the hematuria and belive in theory it is due to an occlusion in his left renal vein causes pressure making the kidney bleed. So he left with a perc neph bag on left (still hematuria) now externalized again and now a perc neph bag on the right and a stoma and urostomy that are virtually usesless!

During this last hospital stay, while searching for source of bleeding, they discovered multiple lesions on his liver. He is not a canidate for treatment, and based on history they assume this to be metastasis. He actually took the news well, as did my wonderful husband, but still so sad.

So currently has been in an acute rehab facility for 2 weeks, but so far from his baseline. He walked with a cane before and now is using just a wheelchair, needs assistance with ADLS, and is starting to expereince more discomfort and exhaustion.

I visited his today and he seemed so much more tired than just a couple days ago, and even told me he was "falling asleep during PT." The doctors didn't give an estimated prognosis, but we all know liver mets without treatment is very poor. I just hate to see him so misearable with 3 different tubes, bags, now some pain in the right side of his chest. He has had intermittent fevers of around 101 every 5 days or so, but no other signs of infection until today he seemed exhausted and they said his WBC was 14,000. So, I have a read a little bit about liver necrosis causing leukocytosis, fevers and such.

His liver enzyemes have been normal, no jaudice yet (but I did notice today just a bit of yellow in the inner canthus of his sclera), but does have bilateral ankel and foot edema.

Please tell me your experience with a patient like my \FIL. The plan is for him to come home eventually and he has not accepted hospice yet. Mentally, he is generaly very competent and prides himself in being independent. But, I have noticed more confusion recently, but subtle. I want for my husband and I to be prepared for the near future, since we are his only family, but I don't want to over step my boundaries as his DIL. Please offer comments, thoughts, advice................ Thank you

[ktwlpn, LPN]

>>> Please offer comments, thoughts, advice................ Thank you

I will tell you most rehabs and skilled care units are all about the $$$ They will keep someone on med A until they tank. Some of the staff will tow that party line and others will be more honest.

Everyone travels down a different path, no one can tell you with any certainty how long the road will be. It is time for you to talk to your husband about end of life care. You need to discuss LTC and homecare and decide right now which way your family will need to go . If at home who will be with him when he needs 24 hour care? Can you afford to pay for help? Who will perform that basic care? Can your husband perform incontinence care for his dad? Can you? Are you prepared to take FMLA to do it, especially knowing the FMLA could expire long before his death.

It's a difficult discussion to have but you do need to start it with your husband asap.

[traumaRUs, MSN, APRN]

This is a tough situation. While we can't provide medical advice, we can offer support as you make these difficult decisions. Please remember to take care of yourself also.

[loveskirn]

Thank you for responding and your support. I did discuss with my husband tonight the need for him to have a serious discussion with his Dad, while he is still mentally competent. I actually read him your exact response ktwlpn, and it helped facilitate our conversation. Luckily, I am not working yet, so I can offer him care when needed. My husband is going to ask him on Friday about his wishes and how he wants to proceed when discharged. This is more challenging for him (husband) cause his family never really "talked" openly about things like this. And we are only in our mid-thirties, and have 3 kids under 8! But, as my husband and I agreed, it is better to be prepared and know his wishes rather than guess. He seemed a bit more spacey and confused today, but still answers questions appropriately.

They did a portable Chest Xray yesterday at the rehab facility and it showed lower left lobe infiltrate. He does have some chest pain when sneezing, coughing etc in addition to his other aches and pains now. They are treating the finding as pneumonia (I know lung mets is possible), and treating with yet another ATB. So, now I am wondering if the confusion is related to his advanced liver mets or the infection, or both? Either way, we just don't want to see him undergo anymore agony, and I pray he does not become septic or need admitted to the hospital again. For him, being in the hospital is the horrific.

My husband is going to ask about his current care plan during his meeting and individually to the nurse, case manager, and therapist about the progress or futility of his "rehab." I just home they are honest with us, and don't just follow protocol or their job descriptions........

[ceebeejay]

Went through this with my FIL as well, minus the extensive heart issues. Liver mets, he was treated but it was not successful. I believe it actually increased his decline. He went from cognitively impaired, to completely lucid one day, then he completely got lost in his mind. My husband did not have that talk. Today, we still cannot find important items and documents. There was a language barrier for me; my comprehension was not good enough for a serious talk. Hopefully, they address these issues so they can spend time, however long and hopefully it's longer than anyone thought, just enjoying the sounds, smells, visions of the living person.

[ceebeejay]

BTW, if your FIL agrees, start hospice care. He can even do it at home. For some reason, nobody likes to talk about this with families. Only one primary care DR. who was filling in even mentioned it to us.

[NutmeggeRN, BSN]

ahhh...I think you are already getting prepared.....my hope for you is that someone (not necessarily you) has the conversation with him about his wishes. It is not an easy conversation, but ever so important. I suspect he is aware as well.

((Hugs))

[amoLucia]

Several things came to mind -

First, please take care of yourself. You have the best wishes of many who will read your post.

Secondly, since your husband has siblings, please, PLEASE, get them on board. Even if they may not fully understand or agree, at least there will not be any surprises. Things can get VERY, VERY ugly at the end. I am hoping that your husband (and YOU) have the legal, official documented POA/HCP power. One official person is crucial for definitive (and authorized) decision-making.

Thirdly, I urge you (and your husband) to be realistic. This will become extremely difficult as the time winds down when more & more care becomes necessary. Your FIL will most likely want to be at home; your husband will want to honor that decision also. Likely that will also be the desire of other extended family. At this time, you are willing to be there for him. Will that be his home or yours? This will make a huge difference.

But the likelihood and expectation is that because you are the official family 'healthcare person' you may fall into the trap of being the only person to be there to do it all by yourself. If your FIL remains at home, his care will be extensive. You will need HELP. You cannot be expected to be the sole caregiver 24/7, and that is what freq becomes the expected end result. The unrealistic expectation may become that you will dedicate your life to his care. You CANNOT. You will need your husband's support & understanding so that you can lead some life of your own. Down the road, home care decisions for assist, hospice, NH placement, financial expenditures, etc will be necessary so it is imperative that your husband have the right legal authority to act.

And I reiterate a point from another respondent - make sure you know where are all the documents. Finances, insurances, titles to home & car, prearranged cemetery plot, military, safety deposit, valuable collections like stamps or coins, a will, DNR/POLST (get one now if not already), etc. Any outstanding debts?

To your good luck (LUCK is NOT a good word here, but I can't think of another better word to use, sorry), your FIL has all the right professionals providing his medical care. You, yourself, seem to have the understanding, knowledge and desire to be there for his life's end journey. But the reality is that things may not work out as all wish. Time, family, assistance and money will dictate things that you may already be sensing as possible difficulties down the road.

I speak from experience about long-term caring for ill relatives. Not an easy road to travel and one I wouldn't wish on my worst enemy.

The recent care of your MIL may have already prepared you for some of these activities, so I don't mean to hit you over the head with info you already know or have addressed.

There's a lot of things for you to address quickly. Again, good wishes for you.