Covid 19....All of Us Sick

Olly_Bake

I'm trying to decide. I had plans to enter Dad into hospice after he graduated from regular home health. Transition while doing well. We were down to two weeks.

Live-in-sibling contracted Covid 19. Now we are all sick. About seven days for live-in-sibling. Five days later for the rest of us.  

The dilemma is dad was fairing well at home with Covid-19 with the game plan of his MD. However, the live-in-sibling figured he would be better in the hospital after learning the evening aide would have to leave until tested. 

I was able to cancel the ambulance on the first day. Dad was doing well that day and when I left everything was still checking out. So went in the next day and attended to Dad. He was doing well expect when I got ready to leave his BP fell (but this is normal and home health has taught me some things to get his BP rebound). Well live-in-sibling used this as the opening of getting dad sent off. Didn't make an attempt on BP rebound)

Dad got admitted because they wanted to monitor his breathing with the Covid. His BP had already rebound according to MD update at hospital. I promise you dad was doing better at home. He was communicating, comfy, eating, happy, and doing his usual except having flu-like symptoms sneezing and coughing some.

In the hospital, totally, opposite. The first day humming gospel tunes, crying, and asking the man above to help him. Yesterday and today he barely notices I am there.

My concern now is do I bring him home under regular home health upon discharge and then transfer over as originally planned or go with hospice earlier.

The reason I'm considering hospice earlier now is to stop the live-in-sibling from sending Dad to the hospital with every episode of something. Has no intention of notifying me as the main caregiver and court-appointed guardian or respecting the MD plan of action. So I hope they'll respect hospice.

But probably not ...

I want to go hospice again but one company left a bad taste in my mouth and it's hard to go all in. But if I do not, dad will be forever getting sent to hospital. This is not the first time this has happened. Another time, he got sent after starting a new med. It caused him to sleep hard. I was told to let him sleep it off as long as vitals were stable. Again live-in-sibling sent him to the ER due to hard arousal. ER did bunch of test and guess what? Said let him sleep it off. He did in the ER and then was sent home.

Does anyone care to share their thoughts? I'll listen.

Quilting brings calm

Go with hospice and and inform your sibling that hospital visits will not be covered by insurance unless you and hospice authorize them. Sibling will be liable for the payment as you as the guardian will not pay it ( probably won’t hold up legally ).

You really need to move your dad or your sibling. Live in sibling feels they have the final say because they live there.

towhee

So sorry that you guys are sick. It sounds like your sibling thought they could not take care of your dad without the aide. I agree, call in hospice. They should have a chaplain/social worker available who can talk to both you and your sibling and help you agree on your goals or at least provide you some support and information.

I am a little confused, why would you wait to put your dad on hospice, there is no "transition". Hospice is an additional service, providing aides a couple times a week for bathing, a nurse visit, a chaplain/social worker, maybe a volunteer visitor or other special service, but they do not replace your regular home health aides, they work with them.

easy23

From my experience, being on hospice doesn't stop the patient from going to the ER. You call hospice and tell them you are going to the hospital. Once the patient is admitted to the hospital he is off hospice.

MN Chickadee

Hi Olly, I am sorry you and your family are sick. BTDT with covid. I have read many of your posts over the last few months. I don't think hospice or anything is going to fix the dynamic you have going with this sibling. Having the POA person at a distance, meaning the person living with the PWD does not have the legal authority to make decisions, can be very destructive and difficult to manage. Your sibling is living with dad and doing much of the care and as the POA you will always be in this bind as long as your are relying on your sibling like this. An arrangement like this will only work if the two of you agree on a care plan and basic approaches to care and that doesn't seem to be the case. You are relying on a caregiver who doesn't even follow doctor's orders. I assume that if you dig in and really give them your opinion and ultimatums on what they will and will not do they may bail on being a main caregiver or make things even harder for you. Just because you have enrolled dad in hospice does not mean your sibling won't pick up the phone and call an ambulance all the time; it will just mean more headaches for you as dad is kicked off hospice constantly. You can't get your sibling on board with your vision of dad's care or to do what even the doctors say. Honestly perhaps a facility would be better; at least meds would be given as directed and all protocols for his care followed and they would call you with changes and decisions. Right now it seems your father's care and meds change based on who is there that day. Or perhaps it is time for you to ask your sibling to move out of your father's home and hire full time care at home. Your father has significant health issues and is late stage in a terminal disease. I would make sure wherever he goes next is somewhere you can let hospice do their job and keep him comfortable. Think about if that is really at home with your sibling. While there are pros and cons to facilities, the current turmoil and patchy approach to his care can't be good for him either. Why would your sibling suddenly "respect hospice?" They are doing it their way, for better or worse, because they can.

harshedbuzz

@Olly_Bake

I am sorry for the sickness; alas COVID is still a reality. I hope you are all on the mend with no lingering complications soon.

I feel like this is a situation where the POA is going to have to make a stand. If you share that responsibility with your sib, there is likely no fix for this. If you are sole decision-maker, there may be no fix for this that doesn't include you becoming permanently estranged from said sibling.

What is the dynamic here? Why does sibling live with your dad? Would they be unhoused or unable to enjoy a certain standard of living which might lead them to be impacted by dad's death in ways you are not? This could lead to considerable anxiety about not doing all to keep dad alive. I have seen these adult child/parent mutually beneficial/symbiotic relationships go sideways when the parents' care becomes more than the adult child can and will provide. It's not pretty.

Do they not understand or are they in denial that dad's condition is terminal? Might they agree with your approach but struggle with implementing it as they are the one with boots on the ground?

Could they be burned out? Perhaps they're not the right person to reside with dad. If you can't/won't take over for sibling, perhaps a facility would be better.

HB

Olly_Bake

Quilting brings calm. This is what I can't understand. You don't do the heavy lifting, so why do you feel you have the final say.

Thanks, towhee

Easy23, yes you can go to the ER. However, hospice should be called first.

MN Chickadee “Your sibling is living with dad and doing much of the care?

I'm sorry but in this situation, it is not the case.

I’m there six days morning. The aide 5 days evening. All meals I do. Cook before leaving my home. Cook breakfast at his home along with whatever I decide to do for lunch. I give the baths, set up medications and give his medications. I do all the housekeeping (cleaning) and his laundry. Shopping, appointments and outings - me. His companionship - yours truly. Even when he gets sent to the hospital, I am the one with him. If I say, he has a doctor's appointment. You would think sibling would jump in and at least have him bathe or dressed - but no. But that does not bother me. I’d take care of Dad until the day he passes but can’t stand the drama of the siblings. Home repairs hubby helps and all the bills out of dads pocket.

Now on Saturday and Sunday, we do not have an evening aide so I stay a bit later and make sure he only needs changing if he wakes up. Same thing for the aide minimum task (give night meds and change). On my day off the aide does everything except cook and is there all morning and evening. Prepared meals are already there.

Sibling same thing, after the aide leaves, if he is still not asleep by 11, check to see if wet and give melatonin. That's the only thing I've asked of her since bringing him to his home.  

I understand what you are saying. It has crossed my mind. He didn’t fare well previously in facilities. He was in our small home for over a year but his home had more room. My husband said it was time we utilized his home since nursing home facilities did not work as we had hoped.

Olly_Bake

Harshedbuzz my sibling never left home. Does not work and has never worked/held a steady job. Dad and Mom always came to the rescue. So yes an even bigger hit once Dad is gone. Mom is already gone.

Thank you all so much for commenting on going with hospice. We’ve done hospice time and time again. But the last one was so pushy that I'm just having a hard time going back. The one I have in mind this time, we’ve been communicating for over a month and they sound like a great fit but still could not get myself to pull the trigger. But I was pushing myself to do so once the last two weeks were up with regular home health.

But since he was back in the hospital my original thought was regular home health again to make sure he was well enough and then pick up hospice after they discharge.

However, thanks to all of you I've already notified the hospital about hospice whenever they feel he is strong enough for discharge.