Roller Coaster Ride - Update on Dad

Olly_Bake

Since the broken hip, he has taking hit after hit after hit. The cdiff diagnosis in which they admitted him and then turned right around and sent him home three days later swollen like a balloon, breathing was horrible, not really being able to take down liquids or soft foods. Knew he was not ready to be discharged and fought for a longer stay but still they sent him home by ambulance. Didn’t think he would make it through the night as I watched him on camera once at my home.

The next day things were still the same but I waited on the home health nurse for another opinion. The nurse evaluated him really well and agreed 911 should be called. Admitted again but this time with a few more problems pleural effusion, pneumonia, chronic heart failure exacerbation, and now he has moved to puree foods..

At times I consider hospice but worry they will not treat. The hospice that I really like doctor is the same doctor that sent him home way too early. Then the only other hospice we have said if we came back to them and then go off again, they will never take him back. Guess we will not with them.

So right now, we are trying to make it with regular home health and telehealth visits when he does not feel well enough to go for a ten minute drive for in-person visit. Geeze and then we would have to get started all over with equipment and supplies. It was a battle to get those things setup and finally got everything last week but he has not gotten a chance to use yet.

Hoping soon I’ll have time to see what is happening with everyone else.

Olly_Bake

Today he ate his puree foods. However, it is still sticking to his tongue more than I would like. He was able to take the tea and glucerna shake down but the water choked him. So we had to take a long break before trying to finish the meal and I didn't try water again at least for now.

Getting conflicting messages on to use a straw or not to use a straw?

M1

Olly:  to me it really does sound like it's time to consider hospice.  I know it's a wrench to say you're not going to treat everything that comes along:  but he has an incurable, terminal illness.  We can't always cure, but we can always comfort.  I would think hard about putting that in place for him.  I'm very sorry.

Stuck in the middle

I agree with M1.  He's nearly 90, in pain, and can't even drink water comfortably.  If I were in his shoes, I would want palliative care only.

ButterflyWings

Olly - please re-read the gentle but clear encouragement we are giving you, to bring hospice in at this time. There is no way to cure the terminal disease that is taking over your dad's health to the point that he could really, really benefit from the comfort care they provide. 

By comparison, my DH is 'only' 81 and I decided a while ago that in a way, letting him go through the endless tests, blood draws, needles, IVs, confusing and stressful hospital settings etc just to prolong his terrible dementia was almost like "not treating" the things we CAN control, like: limiting his pain, having added support for personal care, bathing or grooming, companion care visits if interested, and definitely limiting invasive things that won't cure or save him anyway. M1 said it better than I did. 

Please consider taking a different approach to what they are currently doing. It is the path off this roller coaster for your dear dad. You can always cancel if you don't like the way hospice is working for you all for some reason. They provide great support and comfort for him given all that he is going through. We are urging you to at least have them evaluate him. They can give you excellent advice for how to help him right now, which seems to be what you are really seeking. 

I hope this is received in the spirit I intend which is with love and compassion and hope that it will help us move toward what will provide the most comfort for the months, weeks, days, hours our LOs have left.  I am sharing the following link for you, and me. I have seen "Being Mortal" recommended many times on these boards for those of us who have end of life situations looming. And they are hard, yes they are. Did not know this was also a documentary film, which is easier for me to do than a book right now. I will be watching it this weekend. If you can, please review and/or read the book and let me know your thoughts. Sending hugs.

Being Mortal (full film) | FRONTLINE

harshedbuzz

Olly_Bake wrote:

Since the broken hip, he has taking hit after hit after hit. The cdiff diagnosis in which they admitted him and then turned right around and sent him home three days later swollen like a balloon, breathing was horrible, not really being able to take down liquids or soft foods. Knew he was not ready to be discharged and fought for a longer stay but still they sent him home by ambulance. Didn’t think he would make it through the night as I watched him on camera once at my home.

The next day things were still the same but I waited on the home health nurse for another opinion. The nurse evaluated him really well and agreed 911 should be called. Admitted again but this time with a few more problems pleural effusion, pneumonia, chronic heart failure exacerbation, and now he has moved to puree foods..

If your dad is on Medicare, you could file a complaint that he was discharged too soon or denied rehab after a qualifying hospitalization. The hospital might get "dinged" but maybe not.

I suspect is the discharge was made to allow an elderly man with at least 2 well-progressed terminal illnesses to die in his own home. 

At times I consider hospice but worry they will not treat.

Define treatment?

IME, hospice does not treat with an approach to cure, but will manage pain and treat things like UTIs and take necessary steps to keep a person breathing comfortably. Aggressive cardiac care would be off the table. You could do a full code vs DNR approach although most here would not recommend it. 

The hospice that I really like doctor is the same doctor that sent him home way too early. Then the only other hospice we have said if we came back to them and then go off again, they will never take him back. Guess we will not with them.

I'm confused. Have you already done hospice with the 2nd company and voluntarily terminated it once already? That's your prerogative, of course, but it sounds like maybe you ruffled some feathers there and would be better served starting over elsewhere. 

So right now, we are trying to make it with regular home health and telehealth visits when he does not feel well enough to go for a ten minute drive for in-person visit. Geeze and then we would have to get started all over with equipment and supplies. It was a battle to get those things setup and finally got everything last week but he has not gotten a chance to use yet.

I am sort of surprised that getting set up was a hassle. Everyone I know who set up hospice at home describes the process as pretty seamless with all manner of DME magically appearing at their home within hours. Perhaps this was impacted by COVID-related labor shortages where you are.

Good luck.

In your shoes I would sign on for at-home hospice with a DNR and aim for a peaceful end of life.

Hoping soon I’ll have time to see what is happening with everyone else.

​fesk

Oily, I am very sorry for your situation. I will not offer advice (you have been given a lot of advice already), but will say a prayer and hope you both will get the support you need through this difficult time and that your father is as comfortable as can be.

dayn2nite2

Please consider the fact that he is suffering through these "treatments" and rides to/from the emergency room, all these environment changes.

If you had cancer and were told there is no treatment that will make it better or cure you and you got pneumonia, would you keep going back and forth to the hospital for your treatments so you could live longer with terminal cancer?

Any sort of dementia is terminal.  It's the same as cancer.  After a certain point, you are putting Band-Aids and duct tape on the body when in fact he has a brain (which is the control center) that is shrinking every day, becoming more damaged every day.  He doesn't understand what's happening and all this commotion at the end of his life - you will not feel good about it later.

Please get hospice involved.

May flowers

Olly, I’m so sorry you and your dad are going through this. To me, it sounds like his body is giving out and the back and forth and hospital stays are harming more than helping.

I’d consider hospice again for him. They will treat, just not the dementia and no extraordinary measures to sustain life. I know your hospice experience was not a good one, but there are others and some will do a better job coming alongside you all with support. 

A story to consider…

My MIL was battling stage 4 cancer a few years back and the cancer was shrinking, some of the areas it was gone completely.  Then, she had an unrelated issue and surgery. She never woke up. They couldn’t extubate her because she kept having seizures. She had one thing fail after another, her kidneys, her liver, a stroke, heart…

We kept fighting to have them treat for each new thing that came up thinking she could get back to where she was before…

BUT there was a point we had to realize… the avalanche of problems meant no more cancer treatment, years of excruciating rehab, tracheotomy, and more. A life of misery, all to die of cancer anyway. My FIL had mild-moderate dementia but he was clear enough to tell us, “She wouldn’t want to live like this”

We chose to keep her comfortable until she passed. We said goodbye, and let her go.

There is a tipping point that you realize, you are fighting and uphill battle that you won’t win. 

My FIL had the same surgery as yours 6 months ago without the complications. He is still declining steadily and would be in this condition, hospice or not. But hospice provided supplies, support, equipment, meds as needed, thickener for his drinks, and treatments for any issue that helps him feel better. Sometimes you have to push a little - and for me the key sentence is “I know he is dying, but I want him to be treated for this for COMFORT” and they agree.

But no more hospital for him. I was frustrated that the hospice nurse sent him to the ER to glue a 1/2” cut. 4 hours of sitting in a waiting room, major agitation, risk of secondary infection, for a 20 second procedure - something I could have done, honestly. Even that “minor” visit set him back. I just want him home and comfortable. 

mommyandme (m&m)

His comfort is most important. I’m on team hospice.  I would err on the side of peace and love at this stage. He may actually rally, feel better due to hospice’s “treatment”. 

I’m so sorry for all the chaos and confusion you and yours are experiencing! 

Olly_Bake

M1 - Dad came out on the other side of hip surgery with the same mental and eating ability he had when he went in (I was so happy to see he was back talking and eating big meals). But then a few days after coming out the hospital, we were like what the heck is this stomach issue. Never heard of C-diff until this forum and sure enough. Now it appears to be wreaking havoc and shutting him down .

HarshedBuzz – [I suspect is the discharge was made to allow an elderly man with at least 2 well-progressed terminal illnesses to die in his own home.] If the hospitalist or physician in this case felt that way (one or two of his terminal issues had made a change for the worse), owed it to the patient or the patient’s guardian to say exactly that. {Just My Opinion}.

HarshedBuzz – We have used two hospice companies. The first one we came off under the suggestion of admitting him to inpatient facility to get dementia symptom under control (at that time lack of sleep). When he came out, we decided to try the other hospice. This one didn't want to test for UTI, didn't want to make med changes when we thought one was not a good fit, keep screwing up medications when it was time to reorder. So when he had an episode of something and he was hard to wake up, we wanted the ambulance and they finally agreed so don't know why the approach now - we never had a hostile attitude toward anyone.

HarshedBuzz – Hospice was always easy when it comes to equipment, etc. Remember, we were going regular home health to continue physical therapy (right then he was doing really well). The hospital passed the buck on getting the hospital bed saying it would be easier through the primary blah blah. So by going through the primary it took a full week of back and forth between supplier and doctor. Then after we finally got it straight, we had to wait until the next week because they only came to that area on a certain day.

ButterflyWings - I can't watch or read anything right now. My heart is heavy and my left eye twitch is about to leave me blind after driving me mad.

May Flowers - Sometimes you have to push a little - and for me the key sentence is “I know he is dying, but I want him to be treated for this for COMFORT” and they agree. Hoping we get a chance.

All – Thanks everyone and for everything!! I hear you.

Olly_Bake

Dad had to be moved to ICU last night and put on bi-pap. They called me late evening saying he managed to do something weird considering he mostly have been motionless. Said he had got undressed (don't know if diaper remained) and had pulled away the linen. The nurse said when questioned dad was lethargic and overly confused unlike how he was the day before. So rapid response was called and they found that his blood pressure had dropped into the double digits and then after dreaded further testing, they found his carbon dioxide and other numbers were through the roof. So they dc'ed the BP medicine that I had concerns about from day 1 of it being added.

This morning I went to check on him and he was smiling, asking question, and responding to questions appropriately to the point you would think he has no dementia and he was moving his body helping them change him. Kind of making me wonder if this would be a good addition to have at home when the oxygen and other breathing treatments are not providing relief.

BTW: I did call the first hospice company and they directed me to the marketing manager (it seems so weird that hospice has marketing persons). They are willing to re-evaluate him and says even if the hospital adds on bipap upon discharge, they can still pick him up for copd or heart failure. The supply company says we would not have to switch.

Now I have seven other people to run this by.