My l/o is in the hospital with bacterial pneumonia, day 3. He has run a fever of 103.2, last night 102.4. He doesn't communicate, mostly sleeps, coughs a lot, very congested, taking oxygen, bladder incontinent, and constipated. Doctor is saying his oxygen level, and all vital signs are better. Says he will probably release Thurs or Fri if continues to improve. I can't imagine him getting released. Having trouble swallowing, still on respiratory treatments, and antibotics. He isn't walking at all at the hopsital or even getting out of bed.

Does anyone have any input....What do I need to know in order to make best decisions and ask right questions. I am about to panic. Thank you for any comments or advice.

betbob2,

Sorry to hear about the pneumonia. If someone recovers from one bout of pneumonia, the chances are high that there will be future bouts. Given that, you might consider:

* your LO's written wishes in terms of a feeding tube
* your LO's written wishes in terms of intubation and being attached to a respirator, should that become necessary
* your LO's willingness or your willingness to treat further bouts of pneumonia with hospitalization
* your interest in signing your LO up for hospice (upon discharge from the hospital)
* your interest in placing your LO in a skilled nursing facility (upon discharge from the hospital)
* it's never too early to make funeral arrangements
* your LO's interest or your interest in signing your LO up for brain donation (and making those arrangements)

Do you have support of family and friends at this time? If not, ask for assistance of a social worker at the hospital. The hospital's discharge planner can assist with some of these arrangements above.

Good luck,
Robin

Yes, I am pretty much alone. Our son came in today for a few days. We had discussion about his father's situation. He is supportive of anything that I decide relating to future episodes of pneumonia. He thinks I shoud go ahead and put his father on Hospice care so I will have help to get me through in event of future problems.

Right now, I am only having feeling of guilt that I would be giving up. I have been taking care of him for nearly 12 years. He is 67 years old. I feel like it has been a lifetime.

I have most of his affairs in order but will now go about doing everything that needs to get done. I have one concern: he is not religious but wants a funeral. Our son and I want him to donate his brain to DLB Research. He is past having a discussion with him about it now....any suggestions?

I fully understand your anxiety. There should be a discharge planner at the hospital with whom you can confer. There are two options available: 1. Hospice, as you have suggested, and 2. Home Health, which is also covered by Medicare [I don't know if your LO is on Medicare]. Either will avail you of intermittent visits by an RN and a CNA for bathing and other personal care several times a week. Home Health services can be available for consecutive 6-week periods, with recertification.

What is his physician's opinion regarding your husband's prognosis? There should be some support for you in your decision making. I pray all goes well for you! They do discharge patients very early from the hospital nowadays. Too early, in my opinion. Home health services can make a smoother transition.

betbob2,

Sorry to know that you are pretty much alone. Perhaps that's an additional impetus to place your partner in a care facility once he leaves the hospital so that you'll have some assistance. (If he's on Medicare, Medicare would pick up the tab for some period of time.)

The great thing about hospice is that they provide a social worker to the family so you'd have someone to discuss these issues with. Putting someone on hospice doesn't mean you are giving up. The focus is on quality of life, not quantity of life.

Perhaps you can imagine if the roles were reversed and you had possible LBD and were in the hospital with pneumonia. What would you want your partner to do? What would you say to your partner about "giving up"?

Many non-religious people have funerals or memorial events of some type. I'm sure the hospital has a chaplain that you can discuss this with. Does your partner want a service in a church? Hospice provides a spiritual counselor who can also help address this topic.

About brain donation, it makes no difference if you've discussed this with your partner (or even whether he consents). The only thing that matters is if the spouse (or next-of-kin) and the healthcare POA consent to this. I imagine we could find someone in Iberia Parish or Franklin to handle the tissue procurement. Please contact me directly via email (not the private message system) if you'd like my help in making these arrangements. You might read the post on "Brain donation" in the LBD Research area to learn a bit about costs.

Robin

Hi Betbob2 - I am sorry for what you are going through and have been going through. I think Robin's idea of asking yourself what you'd want if you were in your LOs position. Have you read any of the lit. on Slow Medicine? There's some info. under Treatment Options and probably elsewhere on this site. Since my dad had a very detailed Advanced Directive, I know what he'd want, and it wouldn't be to prolong a ppor quality of life where there is no hope for him getting better. However, I respect that some people's idea that quantity of life is more important no matter whether there is hope for getting better or not. I hope you'll stay in touch with people on the forum and with your own family at this critical time. I found the hosp. social worker to be of immense support last summer when my dad suddently went from independent living to needing TOTAL care in a hospital, where they only kept him for 3 days! Lynn

betbob2.
I am so sorry for what you are going through as a family, Very true once they start with pnumonia it cetainly is likely to happen again , in my husbands last yr we dealt with it 4 times. As to not knowing what he really wants as far as any donation, the way I would look at it he has children and this might be beneficial for future generations.
Hospice can give you some peace of mind they are wonderful to deal with !
I wish you well!

to each of you who have responded to my pleas of support during this time of great need.

Tonight was my first night away from my LO's side since going to the emergency room on Sunday. His fever has broken and all of vitals are good now but he still has a terrible cough and fluid rattles around in his throat. He only responds occasionally but not in any meaningful way. He has problems swallowing and has quit eating and takes very limited fluids. His doctor says he should be showing more signs of recovery. He simply lies in bed peacefully with his eyes closed.

I am meeting with his doctor, social worker at the hospital, and discharge planner tomorrow. We are looking at placing him in a skilled nursing facility with hospice care. I have rejected a feeding tube. I pray I am making the right decision for him as this is what I know in my heart that he would want. Fortunately, we both signed "directives to physician" many years ago that we neither wanted our lives artifically prolonged without hope of recovery. His physician has reached that determination. Even with his intentions clearly stated, it is not easy to move forward. As you can imagine, there are floods of tears washing my face as I write.

I have been married to this wonderful man for 46 years and it is so hard to prepare to say good-bye.

It is hard to let go of those we love, even when we know it's the right thing to do. You have shown extraordinary courage and wisdom in the midst of the many conflicting emotions.

Believe that those of us here on the forum will be with you in spirit during this difficult time and you will be in my prayers. --Pat

You might also ask if there's in-patient hospice at the hospital. Some hospitals have this, not all. Or another in-patient hospice facility. It sounds like your partner may be ready to die.

Best wishes to you during this very sad and stressful time.

I wish you much strenght in the coming days, just know you are doing the very best you can! This indeed is such a sad disease!

We, too, have just been the hospital route for pneumonia and have the same issues. Very little food intake, sometimes a cookie or some chips, no real food. Just locks lips and won't accept anything unless he initiates it. Johnny will drink Ensure and juice, thickened, but not much else. Still he chokes and coughs. We went on hospice a couple of weeks ago and I'm very pleased with the nurse. Mostly to know that someone is available all the time without having to make that trip to the hospital is worth a million dollars. And they can prescribe antibiotics if there is pneumonia again. They're just so knowledgeable and helpful. I'm sure it's the best thing we could do. I was told that if the antibiotics need to be given IV, then we can go to in-patient hospice. What a grace!
Good luck and all God's blessings,
Judy

IV antibiotics are often given at home if a willing and able caregiver is there. A PIC line is inserted at the hospital or outpatient clinic and the first dose is administered there. The drugs and equipment are delivered to the patient's home per Rx and a home health [or hospice] nurse administers the medication and sometimes teaches a family member how to give the IV medication and flush, etc. I've done this dozens of times.

Since I know little to nothing about Hospice, I am curious about their using antibiotics. I thought Hospice wouldn't serve people receiving life prolonging meds. Is this not correct? Thanks, Lynn

Often Antibotics are what they consider comfort meds!