Hospitalization and treatment of every new symptom

ThisLife

Got DH placement in a new MC after psych stay to adjust meds for behavior. Two weeks ago, he seemed to have a mild cold. Started walking with shoulders hunched over and shuffling step. Then urinary incontinence. Then a wheelchair in his room that was used for off days when he had trouble walking. Speech much word salad. Wednesday I was called that they had called for an ambulance because he couldn't raise his arms and had weakness all down his left side. The ambulance arrived while we were on the phone. I was told what hospital he would be at. The POLST says DNR/intubate. I didn't mark the most severe box of do not transport to hospital.

He has aspiration pneumonia. CT and MRI (to check for stroke) show four masses/sacs of fluid-3 along neck and 1 brain. They couldn't be more definitive as he couldn't follow directions for the MRI and there is so much damage to the brain from Alzheimer's.

I've refused further tests. I unfortunately agreed to antibiotics to help the pneumonia to "make him more comfortable." My request to stop antibiotics was refused as it is a liability issue for staff/hospital. His oxygen levels dropped so they started respiratory treatment. I was told I couldn't refuse that. When I left last night, he had a fever. Hospice evaluated and wouldn't accept him as he is not close enough to dying. so he doesn't qualify for "Hospice House." If they accept him then they are on the hook for the hospital bills/costs of where he might be moved to next.

He has been moved from "observation" to "admitted." Today is day three. I'm told they can't transfer him until he is stabilized. it seems to me that they are treating every little symptom to stabilize him or until he dies of system shut down or sepsis. I want him to have comfort measures which doesn't appear possible since I went down the rabbit hole of accepting antibiotics. We live in FL (where freedom and choice go to die.) I don't know if I need a lawyer, consult another hospice or ???

M1

So sorry, this shouldn't happen. Ask to speak to a hospital spokesperson or chaplain, they can help you know how to proceed.

harshedbuzz

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

MN Chickadee

When assisting my uncle through the end stages of life, the hospital had a hospice/palliative care team made of their own staff - doctor, nurse, social worker, chaplain. We sat down to discuss how to let him go peacefully. The regular hospitalist physician wouldn't discuss this stuff; he was going on about all kinds of interventions and the possibility of discharging to a care setting, and it was obvious this guy wasn't going anywhere but "the other side." He died just 6 hours after meeting with the hospice team when we decided to stop the various interventions. I would find out who you can speak to on staff about hospice care; there has to be a way. Social worker, chaplain etc. Consult more outside hospice agencies to come evaluate him- very surprised the first did not accept him based on what you described. Is it possible he could go back to his MC or a nursing home with hospice on board if the hospital won't cooperate? Is taking him home and letting him pass there a possibility if a hospice agency accepts him and comes to the home? They go anywhere (home, facility etc.)

I'm sorry you are going through this. It doesn't sound like he has long; a PWD doesn't often recover from these things. Could mean anywhere from a day or two to a week or two but I don't think his long term care is going to be of concern. The abx may help the infection but often there is an aspect of "the train has left the station" once aspiration pneumonia comes along, and the fluid sacs sound pretty ominous. I'm sorry you don't have the support you deserve.

easy23

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.

housefinch

I have no advice to add. I’m so incredibly sorry your loved one wasn’t accepted for hospice and puzzled as to why not. I hope it gets sorted out so you and he can be at peace with how things go forward. Hugs, peace, strength, and comfort to you.

midge333

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.

Beachfan

When DH was in MC, he had a perceived medical emergency; by the time MC staff reached me (new phone, technology, aaargh!) they had transported him to the ER. I spoke with the ER doctor, who had checked him over and agreed with me that further testing and/or treatment was unwise (and unkind), given his age and the progression of his Alzheimer’s. She advised returning him to the MCF and ordering hospice (what MN chickadee suggested). He had aspiration pneumonia and passed within 4 days. He took no medication, had no underlying medical conditions; it was his time. I am eternally grateful for his peaceful transition and that he did not linger. I hope you can get a satisfactory resolution for your and DH’s comfort. It should not be this hard.

ThisLife

ThisLife

Update Good News. First, I want to thank everyone here for the support and suggestions. DH will be transported to a hospice house within a couple of hours.

After my previous post, the hospital doctor called me to make another run at more treatment and testing. My son who is on the DPOA had rejected those yesterday. They needed to hear it from me his wife. The "masses" along spine and neck are tumors emanating from the myelin sheath! Really! They wanted to treat those! Unbelievable! I refused. Was quoted the horror possibilities. So, suddenly, DH qualifies for hospice services. I believe I'm on my way to peace and comfort for DH.

I had contacted another hospice I'd consulted with before. The nurse was scheduled to see him tomorrow morning.

midge333

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.

M1

good outcome though I am so sorry. May it be peaceful for you both with time to say goodbye.

ThisLife

Midge333 and M1. Thank you so much. He's transferred and resting comfortably. Mission accomplished!

DTSbuddy

Thank you all for sharing your experiences. We went to the urgent care today getting my DO checked for blood clots, because his feet are swollen and full of blisters. I wanted him treated for the edema and horrible itching from a nasty skin condition. I was not prepared to discuss whether or not they should treat if they found clots. I thought the blood clots were not life threatening, but for the edema, but then I wondered if I should have said no. There were no clots, so I was not faced with the decision. Hearing your stories, I realized I need to think ahead, and be ready to make decisions. I asked my DO if he wanted treatment if they found blood clots, and he said 'no,' quite clearly, twice. He is not always able to answer questions, due to his PPA aphasia. What constitutes acceptable quality of life? When do we say, 'no treatment.?' At what point is it appropriate to ask for comfort care only. We still have fun and laugh together. But he is being brave, and trying to cheer me up, I know. Our favorite activity is walking and we can't do that now. He gets really sick of not being able to communicate.

ButterflyWings

@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.

midge333

DTSbuddy:

It is hard to know exactly when to make the transition from treating things to "comfort measures only". I think it is important to have those discussions with your LO very early in the course of dementia so you know your partner's wishes. These are hard discussions and many people forgo them. Unfortunately, that leaves the caregiver somewhat stranded later on when things get real. My DW's "line in the sand" is when she no longer recognizes me or our sons and daughter. I would guess that many of us continue intervening longer than we should and of course our medical system's default mode is intervention.

ImMaggieMae

@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.

SDianeL

https://alzconnected.org/discussion/comment/205659#Comment_205659

Your post hit home for me. My DH is in a memory care facility. 2 weeks ago he got an infection in his foot. Both feet are very swollen. They had to up his agitation meds and he's now mostly bedridden. I am so worried about the infection since he's diabetic. I need to start thinking of decisions too. If he goes to the hospital, there is nobody to go with him. I am scheduled for double mastectomy 4/25 and my daughter will be caring for me. What if they recommend amputation? Would he want that? He's not able to make that decision. My anxiety is through the roof.

M1

Diane I am so sorry to hear this. I have to say that if it were me, there’s no way I’d put him through amputation surgery. Truly, you have to stop asking any diagnostic questions. True comfort care means that the only relevant question is: is he comfortable? If so, fine. If not, what will increase comfort and decrease pain? Nothing else matters. Prolonging life doesn’t matter. It doesn’t matter if he has an infection, that’s a common final event. It doesn’t have to be tested for or treated in any manner. Death is not the enemy here, prolonging suffering is what we’re trying to avoid.

It’s hard to shift thinking like this. But I personally think it matters a lot.

sandwichone123

It's really hard to shift that thinking. On my Five Wishes form https://www.fivewishes.org/ I wrote in a bunch of stuff, including "If I have dementia I do not consent to any antibiotics." For me it's more about living 'til I die rather than having a prolonged demise. We had a lot of discussions about end of life before my mom died, so I have a good idea of what my dh wants as well.

psg712

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.

JeriLynn66

I feel so fortunate that my dear FIL has already made his wished quite clear with a Living Will and a signed Natural Death Act form. And, in earlier clear moments we have discussed his wishes. He has no family left but me so there is no one to ask or debate. I'm grateful he has given me a clear path to follow.

DTSbuddy

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?

M1

DTS, you don't have to treat the skin disease. I know how powerful the biases are but that's why we have to think outside the box. Yes, he will likely succumb to infection as the consequence. But morphine and Tylenol can help keep him comfortable. Ask for a hospice consult and let them help you. What do your instincts tell you about whether your DH would want, when you think back to the individual he used to be?

midge333

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

My DH and I have some very detailed advance medical directives, and we had some very specific conversations after his DM died of metastatic breast cancer, my DM died of advance lung cancer, and DFIL died of UTI with dementia. Once he got to the hospital and I agreed to the IV antibiotics oh my. They told me I couldn't stop the treatment. The hospice doctor told me in FL three doctors have to sign off on hospice. Two doctors at the hospital and him. Well, one or more of the doctors at the hospital wanted to continue to treat. She badgered me about three times. I refused further treatment and testing so they had no reason to keep him in the hospital that insurance would continue to pay. I'm going to do a POLST for myself with a DNR and do not transport. I'm going to update my Advance Medical directive to include no antibiotics. All of this won't go into effect unless I can't speak for myself. I'm 70, not looking to go out anytime soon, but I have no one I need to stay for care for. Just my two cents.

DH is still here in hospice and being treated very well. The doctor said he is relatively healthy and young for a PWA. So, he's strong. I'm so happy to see him calm and peaceful.

midge333

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.