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Dad Update (new update in first post on 12/13) (and 12/30)

DawnM

By DawnM,
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DawnM

DawnM

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12/30- Dad passed away this afternoon at 12:08pm

Original post:

 

Since you all know I have absolutely nothing going on in my life right now......🤪

Dad has fallen twice this week and been taken to the hospital both times.   Today was the 3rd ambulance ride to the hospital.   He was talking out of his head, making no sense, all the things we saw when he was in pain or had a fever, etc.....

They are running more tests but his blood pressure is through the roof, he is in A fib, and now they think they have found cancer in his bone.

I don't know what is going to happen from here.

UPDATE 12/13- He finally got admitted to the hospital side and out of the ER.   It is definitely bone cancer.   The tumor goes from his spine to his femur and is eating away at the bone around his hip replacement prosthetic.   No wonder he can't stand up.   I am surprised he didn't break something in his falls!   But it is bad and terminal.   His blood pressure was 196 over 126.   And he is in A-fib.   

On his chart they put:   Advanced Dementia, chronic kidney disease, pleural effusion, acute kidney injury, persistent A-fib, osteolytic lesion, and recurrent falls.

Isn't he the picture of health?

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DawnM

DawnM

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So, what happens after he is diagnosed and sent home?   The facility said they want me to consider hiring a 24 hour babysitter to make sure he doesn't try to walk on his own.   That could last a long time and we pay close to $8k for the facility, I can't afford an additional $18k for 24 hour care.

I guess we will wait and see what the diagnosis is and what they say.   I mean, if he needs 24 hour personal care from now until he dies, I may just bring him back to his apartment and pay people to come in there.   But if he can be compliant and not get out of his chair without waiting, he should be fine where he is.   But he won't do it, which is why he fell twice this week.

I see that there are several hospice and palliative care facilities in my area.   Are they covered by insurance typically or are they out of pocket?

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TechWife

TechWife

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57 minutes ago, DawnM said:

…

I see that there are several hospice and palliative care facilities in my area.   Are they covered by insurance typically or are they out of pocket?

Hospice is typically covered by insurance, Medicare included. If he chooses not to get treatment, I highly recommend hospice care. 

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TexasProud

TexasProud

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First of all Dawn, so sorry about everything.

Yes, as someone mentioned, hospice is covered...sort of of. What I was told is that for an actual hospice facility, the hospice part was covered by insurance, but the room and board was not. 

Also, recognize that once he is under hospice care, hospice WILL BE his doctor/nurses.  He cannot get treatment by anyone else or he will get released.  ER ok if they don't keep him. But that is one thing I wish I had investigated more. My mom did not want anymore cancer treatments. However, she did want basic care, like giving fluids, which hospice would not do. The hospital did a much better job of keeping her ascites at bay, yet giving her fluid and morphine to keep her comfortable than hospice did. 

In retrospect, for us, I wish I hadn't done hospice but just agreed together on a DNR and not to take anymore cancer drugs. I think her ending would have been much more peaceful. But I also know hospice is not the same everywhere. 

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TexasProud

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Also, so we hired 24/7 care in my mom's home for what turned out to be the last 3 days of her life.  Best money I spent, EVER. My mom, like your dad kept trying to get up and didn't understand that she couldn't anymore. Having someone there with her, enabled us to sleep.  That said, they cannot give medicine so we were giving medicine every hour or two the last couple of days. ( And yes, I thought that is what hospice nurses would do, but no, the family's responsibility.) But caregivers helped tremendously. 

If you choose the hospice facility, I would just double check that they would have somebody that would be there 24/7 to make sure he doesn't get out of bed. Or is the expectation, the patients are too weak and someone just checks occasionally.  

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Scarlett

Scarlett

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@DawnMmy experience with hospice has been wonderful.  My husband’s step father had hospice at home, my best friend’s dad had hospice at the hospital, and my X-MIL died this past Thursday with hospice at home.  

XMIL she also had 24/7 sitters for years (even before she went on hospice) at $10 per hour.  But she had morphine for the pain and she died relatively peacefully.  
 

It is very hard handling end of life caregiving with a full time job and a 5 year old.  Once you have a better idea of time frame you might consider utilizing the FLA.  I suggested my XH do that but he would not for some reason. 

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teachermom2834

teachermom2834

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When my mother was in a hospice facility the hospice care was covered by insurance but the room and board portion was not. So there was an out of pocket portion. It was quite a drama for our family because she really needed to be there but my dad was really not prepared for the expense. However, the time was short and looking back it was not something worth worrying about at all because she just wasn’t there long enough to worry about the cost and she really needed to be there. 
 

 

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Grace Hopper

Grace Hopper

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2 hours ago, DawnM said:

So, what happens after he is diagnosed and sent home?   The facility said they want me to consider hiring a 24 hour babysitter to make sure he doesn't try to walk on his own.   That could last a long time and we pay close to $8k for the facility, I can't afford an additional $18k for 24 hour care.

I guess we will wait and see what the diagnosis is and what they say.   I mean, if he needs 24 hour personal care from now until he dies, I may just bring him back to his apartment and pay people to come in there.   But if he can be compliant and not get out of his chair without waiting, he should be fine where he is.   But he won't do it, which is why he fell twice this week.

I see that there are several hospice and palliative care facilities in my area.   Are they covered by insurance typically or are they out of pocket?

He will have to go through a qualification process and then if approved it is completely covered by Medicare. I highly encourage your to pursue this. It won’t provide for 24/7 care, but what hospice does offer is of great value, not only financially but emotionally. 
 

Some facilities have exclusive arrangements with certain providers, so I’d start by asking the staff there which one they use. If you’re going to bring him home your providers options will be different.  Also, if he doesn’t qualify for full hospice care yet, ask about a level of palliative care. It doesn’t provide as much but is still helpful. 

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Grace Hopper

Grace Hopper

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1 hour ago, TexasProud said:

First of all Dawn, so sorry about everything.

Yes, as someone mentioned, hospice is covered...sort of of. What I was told is that for an actual hospice facility, the hospice part was covered by insurance, but the room and board was not. 

Also, recognize that once he is under hospice care, hospice WILL BE his doctor/nurses.  He cannot get treatment by anyone else or he will get released.  ER ok if they don't keep him. But that is one thing I wish I had investigated more. My mom did not want anymore cancer treatments. However, she did want basic care, like giving fluids, which hospice would not do. The hospital did a much better job of keeping her ascites at bay, yet giving her fluid and morphine to keep her comfortable than hospice did. 

In retrospect, for us, I wish I hadn't done hospice but just agreed together on a DNR and not to take anymore cancer drugs. I think her ending would have been much more peaceful. But I also know hospice is not the same everywhere. 

This was not exactly our experience with our two different elders who received hospice care. Upon choosing hospice, the choice was to not treat the terminal condition. So, nothing for the cancer other than pain management. However, we could stipulate treatment would be provided for things like falls (ie broken bones, stitches for a head laceration), whether antibiotics would be used for an infection unrelated to the cancer, that sort of thing. Regarding fluids, they will explain thoroughly about the dying process and how administering fluids/IV nourishment is not beneficial to  a person in the active stages of dying (close to end of life).

Once enrolled, certain medicines may be discontinued. Strong blood thinners that require lots of monitoring may be dropped. Medicines for things like blood sugar regulation and fluid reduction may be continued. You will have a meeting to thoroughly outline your individual patient’s plan of care. In an emergency, it’s not 911 that you notify, but a hospice  call line.

Specific policies will vary by state. Some hospice organizations have hospice houses, others provide services in homes and SNFs. We can share experiences with you, but you have to investigate the services in your area. 
 

We found hospice to be a wonderful resource. Most people wait til the very end to utilize these services, but they are available and a great help when used as soon as a terminal patient qualifies. Also, people do go on and off hospice care. One of ours was off and on for over two years depending on disease status and progress. 

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Grace Hopper

Grace Hopper

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Not sure if this was clear - ime, if the patient is in a facility, you still pay the regular monthly cost. The additional hospice services are covered by Medicare, but I don’t think 24/7 sitters are included (maybe in the last day or two, depending on the provider).

At home, hospice care is typically covered via Medicare. Again, not 24/7 but quality assistance. 
 

Regarding hospice houses, when palliative care is the specific function of the facility, we were told that’s covered by Medicare but usually only patients in their last few weeks are admitted to the ones here. A person can qualify for hospice with an anticipated life expectancy of 6 months ( a year in some cases) but ime moving into an actual hospice house wasn’t available that full time. But services vary - what’s available in your location may be different. 

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mlktwins

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I think you may have mentioned this before, but does he have Medicare Part A? If not, hospice won't be covered by Medicare. 

DH thought my dad was overpaying for his Medicare for both Part A and Part B. Then when his parents needed hospice, he found out they didn't have Part A so Medicare wouldn't cover it. It ended up ok because their supplemental insurance kicked in for up to $15K for each of them per year (at 80%). Neither lived long enough to make it to $15K, but we would have had to pay out of pocket at that point if they had lived longer.

 

 

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Grace Hopper

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17 minutes ago, mlktwins said:

I think you may have mentioned this before, but does he have Medicare Part A? If not, hospice won't be covered by Medicare. 

DH thought my dad was overpaying for his Medicare for both Part A and Part B. Then when his parents needed hospice, he found out they didn't have Part A so Medicare wouldn't cover it. It ended up ok because their supplemental insurance kicked in for up to $15K for each of them per year (at 80%). Neither lived long enough to make it to $15K, but we would have had to pay out of pocket at that point if they had lived longer.

 

 

Oh right, I guess this is a good starting point. My experience was with someone who had part A and someone who was a long term Medicaid patient (so at that point part A was the only option that person had had for a while). 

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Storygirl

Storygirl

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Mom lived in a nursing home on Medicaid and had hospice during the last week of her life. Evidently, she also was on hospice a couple of other times, but I didn't know (my Dad is a poor communicator). So she was able to receive her regular nursing care from the staff, as well as help from hospice.

Dawn, as for the cost -- I think you said that your dad has some savings. Although paying for 24 hour care will sting, if he needs it, it is an appropriate use of his funds. I know that many people hate to use up their parents' assets for things like this, but end of life care is one thing that people who were able to save intended the money to be used for.

Seeing that balance go down quickly can be scary. But if he lives for a length of time, he's likely to need skilled nursing care. Is he in assisted living currently? If they can't meet his needs, instead of bringing him home, it may be time to look into a skilled nursing facility. In that case, paying down his assets is actually a good thing, even though it feels horrible, because it will eventually allow Medicaid qualification.

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mlktwins

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23 minutes ago, Storygirl said:

Dawn, as for the cost -- I think you said that your dad has some savings. Although paying for 24 hour care will sting, if he needs it, it is an appropriate use of his funds. I know that many people hate to use up their parents' assets for things like this, but end of life care is one thing that people who were able to save intended the money to be used for.

Seeing that balance go down quickly can be scary. But if he lives for a length of time, he's likely to need skilled nursing care. Is he in assisted living currently? If they can't meet his needs, instead of bringing him home, it may be time to look into a skilled nursing facility. In that case, paying down his assets is actually a good thing, even though it feels horrible, because it will eventually allow Medicaid qualification.

Yes, it is scary and it's expensive :-(. I pay my dad's bills and the $8400 every 2 weeks is like 😩. But we are blessed that he has the funds to cover it for a while. I joke that I'm spending the inheritance, but this is what it's there for. 

It is a lot on top of what her dad is paying for the nursing home too though. I've kept my dad home with 24/7 care for that reason.

It's a hard place to be Dawn. So sorry!

 

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TexasProud

TexasProud

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7 hours ago, Grace Hopper said:

 

We found hospice to be a wonderful resource. Most people wait til the very end to utilize these services, but they are available and a great help when used as soon as a terminal patient qualifies. Also, people do go on and off hospice care. One of ours was off and on for over two years depending on disease status and progress. 

This is what I thought as well.  I was SO happy mom chose to do this.  She was feeling fine and getting around pretty well because she had quit taking the cancer meds. I was in complete agreement for her to stop any further treatment since they were not helping and she couldn't tolerate the side effects.  I wanted her to enjoy her last few months....which is what I thought ( and the docs thought) she had. I didn't think we had waited.  When the hospice manager talked to us, she also thought mom would do well for several months. 

Instead, she was dead in a little over a week. And my cousin in Oregon told me she had the exact same experience as far as having to do all the medicine giving, cleaning up poop and all the other hard stuff that hospice didn't do.  She also thought they would be there a lot more.  Another friend also had a similar experience with hospice.

Now, it should be noted that all of these experiences happened after Covid. I think it may have caused a serious staff shortage for hospice. 

I am glad others have had better experiences.  I was seriously disillusioned. 

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Scarlett

Scarlett

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30 minutes ago, TexasProud said:

This is what I thought as well.  I was SO happy mom chose to do this.  She was feeling fine and getting around pretty well because she had quit taking the cancer meds. I was in complete agreement for her to stop any further treatment since they were not helping and she couldn't tolerate the side effects.  I wanted her to enjoy her last few months....which is what I thought ( and the docs thought) she had. I didn't think we had waited.  When the hospice manager talked to us, she also thought mom would do well for several months. 

Instead, she was dead in a little over a week. And my cousin in Oregon told me she had the exact same experience as far as having to do all the medicine giving, cleaning up poop and all the other hard stuff that hospice didn't do.  She also thought they would be there a lot more.  Another friend also had a similar experience with hospice.

Now, it should be noted that all of these experiences happened after Covid. I think it may have caused a serious staff shortage for hospice. 

I am glad others have had better experiences.  I was seriously disillusioned. 

It sounds like your expectations were off.  I don’t think hospice was ever intended to provide 24 hour care.  

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TexasProud

TexasProud

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1 hour ago, Scarlett said:

It sounds like your expectations were off.  I don’t think hospice was ever intended to provide 24 hour care.  

No, I knew that... well, that is I knew they wouldn't provide 24 hour care until they knew death was imminent. But when my mom was no longer conscious with very labored breathing. The nurse checked her for 20 minutes and then left, leaving us to wonder whether we were giving enough morphine or not.  I did think the meds would be monitored.  I did think that a hospice nurse would be there for her last 24 hours. 

But they lead me to believe that they would help her death be comfortable and pain free. She had MUCH less pain before she was with hospice. 

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Scarlett

Scarlett

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6 minutes ago, TexasProud said:

No, I knew that... well, that is I knew they wouldn't provide 24 hour care until they knew death was imminent. But when my mom was no longer conscious with very labored breathing. The nurse checked her for 20 minutes and then left, leaving us to wonder whether we were giving enough morphine or not.  I did think the meds would be monitored.  I did think that a hospice nurse would be there for her last 24 hours. 

But they lead me to believe that they would help her death be comfortable and pain free. She had MUCH less pain before she was with hospice. 

I am not sure why her death was not pain free as I believe that to be the standard.  I am sorry that was your experience.

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Grace Hopper

Grace Hopper

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4 minutes ago, Scarlett said:

I am not sure why her death was not pain free as I believe that to be the standard.  I am sorry that was your experience.

I don’t think pain free is the realistic goal (legally, I mean, for hospice care - euthanasia is a different matter and one I will not discuss). Keeping the patient as comfortable as possible is the goal. Many pass peacefully. Others struggle in the last days, last hours. Death is a laboring process. Even with constant monitoring, and a professional present to do so, there is physical distress. 

It is difficult to sit with a loved one as they pass. I’m sorry it was hard for your mother. I’m sorry it was hard for you. It’s a really hard thing to experience. And grief is hard, too. 

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  • DawnM changed the title to Dad Update (new update in first post on 12/13)
DawnM

DawnM

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On 12/11/2022 at 10:50 AM, mlktwins said:

I think you may have mentioned this before, but does he have Medicare Part A? If not, hospice won't be covered by Medicare. 

DH thought my dad was overpaying for his Medicare for both Part A and Part B. Then when his parents needed hospice, he found out they didn't have Part A so Medicare wouldn't cover it. It ended up ok because their supplemental insurance kicked in for up to $15K for each of them per year (at 80%). Neither lived long enough to make it to $15K, but we would have had to pay out of pocket at that point if they had lived longer.

 

 

He does have Part A.   

On 12/11/2022 at 11:31 AM, Storygirl said:

Mom lived in a nursing home on Medicaid and had hospice during the last week of her life. Evidently, she also was on hospice a couple of other times, but I didn't know (my Dad is a poor communicator). So she was able to receive her regular nursing care from the staff, as well as help from hospice.

Dawn, as for the cost -- I think you said that your dad has some savings. Although paying for 24 hour care will sting, if he needs it, it is an appropriate use of his funds. I know that many people hate to use up their parents' assets for things like this, but end of life care is one thing that people who were able to save intended the money to be used for.

Seeing that balance go down quickly can be scary. But if he lives for a length of time, he's likely to need skilled nursing care. Is he in assisted living currently? If they can't meet his needs, instead of bringing him home, it may be time to look into a skilled nursing facility. In that case, paying down his assets is actually a good thing, even though it feels horrible, because it will eventually allow Medicaid qualification.

He is already in skilled nursing/memory care and we pay $8k per month.   They asked me to tack on an ADDITIONAL $18k per month, making the total $26k per month.

On 12/11/2022 at 12:44 PM, sheryl said:

Dawn, hoping that tests will not reveal that.  Sorry to hear your Dad is not doing well.  That's just hard!

The tests had already revealed a large mass in his bones, honestly, it couldn't have been anything other than cancer.

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DawnM

DawnM

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Updated my first post.   But wanted to add that he is so confused.   He ripped his IV out multiple times and his arms are all blood pooled and bruised.   They have him wrapped up so much now he can't get to the IV anymore.

His blood pressure was 196/126 and when they came in to give him medicine for that, he told them he hoped it wasn't for his blood pressure because he DOES NOT have blood pressure issues!   He has now told everyone who has walked in his room that same thing.   🙄   The nurse looked at me and I said, "give it to him, just ignore him" and she did and dad had no idea.  

He is very dehydrated even with a drip.   And he is very incoherent.   

I am praying he doesn't suffer long.

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