Hospitalization and treatment of every new symptom

I am so sorry.

I'm surprised the hospice didn't accept him and might try another agency given his worsening condition. My friend's husband died from respiratory failure this summer and while she couldn't get hospice, the hospital did transfer his car to their palliative care team which supported them both until he passed a day or so later. This might be an option in a larger hospital.

If respiratory treatment is O2 by canula, that may be to keep him comfortable. My friend's husband was on O2 at the end.

HB

FWIW my DH had aspiration pneumonia in both lungs, six weeks ago. He had hypoxia and was up to 6l of oxygen. The Dr. put him on antibiotics that didn't work so he switched to another. That one worked and cleared up the pneumonia. My DH was so weak he couldn't sit up by himself or feed himself. Once he was stabilized he was sent to subacute rehab on oxygen and nebulizer treatments . He stayed there for 2 weeks and then came home. All is well now.

Edit to add: maybe you can ask the hospitalist to make a referral to hospice.

You have the right to refuse any treatment including antibiotics, oxygen and other respiratory treatments. You also have the right to a palliative care consult. You can ask for comfort measures only. Just because a treatment was started does not mean it cannot be stopped. Ask for a patient representative and demand all treatments (except comfort measures) be stopped. You should not need a lawyer for this.

ThisLife:

I am so glad they finally listened to you! I hope your DH has a quick and painless death. Hospice will give him the care he needs.

@ThisLife I am so happy for you, and also grieving with you. We all are in such a dual reality. But you did it! This is a win. May he and you have all the support, comfort, and caring that hospice has provided for us.

@DTSbuddy Hospice is not just for the very last months, weeks or days when it comes to PWDs. We are among the members who have had hospice support for more than 2 years with a few days break changing from 1 agency to another. DH was kicked off hospice once for not losing weight (he began forgetting when he was full so it was actually progression of his disease, not thriving or getting better, but…Medicare hospice criteria has not caught up to dementia yet.) Anyway, he fainted, fell, (no injuries), got a UTI, and was reassessed by a new agency and qualified for the support and supplies that we definitely need and have used every day since.

I still am barely keeping my head above water, and he has had so much decline and quite a few urgent situations — but all managed at home for the most part, and with least invasive, "keep him on the planet at all costs" approach. Comfort guides the decisions now, no matter what arises. Infections, breathing issues, crumbling teeth, passing out (vasovagal response), and anything new that might come up. Hospice is still encouraging oxygen and also oral antibiotics occasionally, just so he doesn't suffer needlessly say with a UTI turning into sepsis, or possible aspiration does not become pneumonia.

Like you, I am realizing I still need to think ahead to the point I can lead even this great hospice team, to stand down on the oral antibiotics at some point. We are in Stage 7 and just took a nice short walk outside today. Miraculous as 2 weeks ago, I thought it was over. So, I would say his quality of life for most of the day today was good, considering. But in comparison to overall…those times are few and far between. So, as nature is taking its course I am trying to just go with the flow. Hospice is a godsend for having everything we need at home as his life sunsets. I encourage you to have your DH evaluated with any downturn. You can avoid the ER and hospital which are terrible for PWDs and if he gets better temporarily he will graduate from hospice until he needs it/qualifies again with further decline.

@ButterflyWings it is indeed miraculous that you were able to take your husband out for a short walk after what you were going through a couple weeks ago. You are a true inspiration for the care you give him.
I have a couple questions about hospice. You appear to have an excellent, supportive one. I spoke to two in our area when my DH PCP referred them when we needed a hospital bed due to him no longer being able to climb the stairs and needing to sleep with his head raised and just getting him positioned into bed at night. One of the hospices told me he wasn’t ready. (Stage 6, stepping into 7.) The other said they would accept him, but would provide comfort care only for UTI’s which he had been getting at the time. The first hospice would not prescribe antibiotics, only pain meds. The second would prescribe a general broad spectrum one but would not do any testing of a culture. If I were to get a sample and have it tested myself I presume Medicare would not cover the costs of testing since they would already be paying for hospice.

We have a very good neurologist that it took over 8 months to get into. He prescribes Risperidone and another med for sundowning. I understand that hospice would take over all medications. If they dropped him at some point like yours did because of not losing weight, we would not be able to get back into our neurologist because they aren’t accepting new patients anymore. We would also lose the hospital bed which we really need at this point. What happens then? I am renting one on my own at present. Another long story since it was ordered by his doctor but the equipment rental place isn’t sending the doctors orders to Medicare (too long a story, bureaucracy at its worst). I hand feed my husband and do everything I can to keep his weight up. He is too unsteady to stand on a scale.

Maybe we aren’t good candidates for hospice since I want his to live as long as he can he isn’t suffering. Mostly we just need a hospital bed. They are not easy to rent in this area. The rest of the supplies I can continue to buy on my own. We also need an alternative to ER’s and hospitals for things that aren’t life threatening. I need someone to call when something comes up outside of PCP hours that I can’t handle. Your hospice sounds wonderful. How did you find them? We’re in an outlying area.

Thank you everyone who is brave enough to share the really hard stuff at end of life. Those of us whose PWD are not quite there can learn a lot from you. I realize that the tide can turn quickly in some cases, and in others so slowly that we don't recognize it until it's upon us. It's good to be as prepared as we can for the tough decisions.

Thank you all. I just learned that people with the skin disease my DH has live an average of 1 to 5 years after diagnosis, and the disease that lasts for years. He is so uncomfortable. I hate the fact that his last years will be spent trying to keep his body from itching, blistering, and oozing and hurting. D1, you say, you have to stop asking any diagnostic questions. and Sandwichone123 you say you have asked for no antibiotics if you have dementia. I holding on an antibiotic prescription now, trying to decide. Maybe the antibiotics would make his final years more comfortable, maybe not. I can't stop crying when I talk to family about this, or even think about it. The social stigma against letting someone die when you could do something is so strong. We have directives, but the only thing they say about dementia is that he does not want to be spoon fed if he cannot feed himself. Does that mean he does not want to stay alive if his life, with his loss of memory and verbal capacity, is physically very uncomfortable, restrictive, bewildering, and scary,. Would I?

DTS: I think it is helpful to think about what you would want done for you if the roles were reversed. Would you want treatment that may prolong suffering and indignity or would you prefer comfort care only?

ThisLife:

Your husband is very lucky to have you looking after him. I am glad he made it to hospice and is receiving good care.