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I thought I had posted before. I know I wrote a long post, but I apparently let it disappear. In short, I’m sorry you’re going through this. When my dad passed, I really thought a long goodbye would’ve been better. Now I’m glad it happened suddenly. I wish I could have said goodbye, but I’m glad it wasn’t long and lingering, and the pain you’re going through. 

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Well, so far, the new dosages and new med is working.  I don't have those dark episodes of depression, like I had a couple weeks ago.  I am starting to feel back to normal, or what should be normal. 

Well, today, my Dad's various issues came to a head and a decision had to be made.  It was either continue with hospice and simply get worse until the end came, OR, to try to continue to fight and go

Keep it up. One of the best things to do to combat depression is to do things that bring you joy, but it’s also one of the hardest things. And it normally isn’t an intentional thought to not do someth

When I found my Dad 2 weeks ago, I was glad I was there to save his life.  But, last night as I was laying sleepless last night worrying about him, I confess I have had thoughts that if I had known he would refuse treatment and go on hospice, I wondered if it would have been better if I was too late. 

I don't want anything bad to happen to my Dad, and I feel like a total asshole for even entertaining the thought, but I wonder if it had been more merciful.  

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I think self-debating this sort of thing is normal. Had you been late you’d be cursing yourself for not being early. This part of grieving, even if the person hasn’t passed.

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On 7/25/2021 at 6:26 PM, Zathras said:

When I found my Dad 2 weeks ago, I was glad I was there to save his life.  But, last night as I was laying sleepless last night worrying about him, I confess I have had thoughts that if I had known he would refuse treatment and go on hospice, I wondered if it would have been better if I was too late. 

I don't want anything bad to happen to my Dad, and I feel like a total asshole for even entertaining the thought, but I wonder if it had been more merciful.  

Situations change. Doctors were super pissed at me for keeping my mom alive after her TBI/massive stroke/whatever the hell happened to her. But I was following her orders as MPOA. But once I saw she no longer remembered who I was or basically anything, I signed DNR orders. These things are often progressive and you have no way of knowing how someone will recover. My mom had been in the same situation at least twice and recovered fully. Her lungs recovered fully but her brain did not. Finding someone collapsed you almost never know how the dice will fall, so you react on instinct. If you had been too late you would've blamed yourself for letting him die and not finding him soon enough. I know it sucks but don't agonize. 

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Yeah, I know I would never forgive myself if I was too late.  I was just saying the thought crossed my mind late at night.  But I love my dad, and even though he is in hospice, I still want him to recover as best he can. 

Changing gears a bit, one thing I think people don't realize is hospice in the home is a lot of work for the family.  A lot of people assume hospice is there all the time and taking care of the needs of the patient.  Not so.  The hospice we have through Banner only has a nurse out 2 days a week, for an hour or so at a time.   On call does exist 8am-5PM, with a 1 800 number to call on off times, but the bulk of the heavy lifting is on the family.  We hired a caregiver through an agency, for 6 hours a day, at about $1000/week, which is cheap for care giving.  My brother covers mornings, the caregiver is there from noon to 6pm, then I get there at 8pm to 6AM, where I have to then get up and go to work.  Today, I was so exhausted, I had to take the day off.  My brother and I aren't nurses and taking care of my dad is really taking a toll on us both. 

My dad is now realizing how bad off he is and is seeing the strain it is putting on my brother and I.  I think he is slowly coming around to agreeing to treatments he declined and wants to go to a rehab facility. The whole hold up was he didn't want a PEG tube to go to rehab, but I think he may be starting to become open to it.  There is no way he is going to get better and out of bed through hospice, but if he were to go to a rehab center, he would have a fighting chance.  

 

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36 minutes ago, Zathras said:

Yeah, I know I would never forgive myself if I was too late.  I was just saying the thought crossed my mind late at night.  But I love my dad, and even though he is in hospice, I still want him to recover as best he can. 

Changing gears a bit, one thing I think people don't realize is hospice in the home is a lot of work for the family.  A lot of people assume hospice is there all the time and taking care of the needs of the patient.  Not so.  The hospice we have through Banner only has a nurse out 2 days a week, for an hour or so at a time.   On call does exist 8am-5PM, with a 1 800 number to call on off times, but the bulk of the heavy lifting is on the family.  We hired a caregiver through an agency, for 6 hours a day, at about $1000/week, which is cheap for care giving.  My brother covers mornings, the caregiver is there from noon to 6pm, then I get there at 8pm to 6AM, where I have to then get up and go to work.  Today, I was so exhausted, I had to take the day off.  My brother and I aren't nurses and taking care of my dad is really taking a toll on us both. 

My dad is now realizing how bad off he is and is seeing the strain it is putting on my brother and I.  I think he is slowly coming around to agreeing to treatments he declined and wants to go to a rehab facility. The whole hold up was he didn't want a PEG tube to go to rehab, but I think he may be starting to become open to it.  There is no way he is going to get better and out of bed through hospice, but if he were to go to a rehab center, he would have a fighting chance.  

 

That’s great. I think that seeing the love and sacrifice of others is one of the best motivators for change.

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6 hours ago, Zathras said:

Yeah, I know I would never forgive myself if I was too late.  I was just saying the thought crossed my mind late at night.  But I love my dad, and even though he is in hospice, I still want him to recover as best he can. 

Changing gears a bit, one thing I think people don't realize is hospice in the home is a lot of work for the family.  A lot of people assume hospice is there all the time and taking care of the needs of the patient.  Not so.  The hospice we have through Banner only has a nurse out 2 days a week, for an hour or so at a time.   On call does exist 8am-5PM, with a 1 800 number to call on off times, but the bulk of the heavy lifting is on the family.  We hired a caregiver through an agency, for 6 hours a day, at about $1000/week, which is cheap for care giving.  My brother covers mornings, the caregiver is there from noon to 6pm, then I get there at 8pm to 6AM, where I have to then get up and go to work.  Today, I was so exhausted, I had to take the day off.  My brother and I aren't nurses and taking care of my dad is really taking a toll on us both. 

My dad is now realizing how bad off he is and is seeing the strain it is putting on my brother and I.  I think he is slowly coming around to agreeing to treatments he declined and wants to go to a rehab facility. The whole hold up was he didn't want a PEG tube to go to rehab, but I think he may be starting to become open to it.  There is no way he is going to get better and out of bed through hospice, but if he were to go to a rehab center, he would have a fighting chance.  

 

That is exactly what happened with my mom.  Hospice only comes out as needed but is actually only scheduled a couple of times a week. My brother was pissed because he had to actually do some work when mom came home. She died the next day. Banner is generally good but after my experiences with my Mom and Nan I definitely think the US has a long way to go to improve medical care. 

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Well, today, my Dad's various issues came to a head and a decision had to be made.  It was either continue with hospice and simply get worse until the end came, OR, to try to continue to fight and go back to the hospital, and later to a rehab center to build his arms and legs up.  This meant accepting the PEG tube he declined (which prevented him from going to the rehab center).  This is a good outcome so far, but by no means is he out of crisis as he has an internal bleeding issue that needs to be resolved, and several wounds that need to heal.  The plus side of the PEG tube is that he will now get nutrients (protein) that he needs to get better.  I am very hopeful that he will recover to his baseline.  It is also a relief as my brother and I are not medical professionals and we had no way of helping him other than maintaining the status quo.   With a lot of luck and prayers, I hope my dad recovers and is able to go home in a month or so.  So overall this is a good thing. 

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1 hour ago, Zathras said:

Well, today, my Dad's various issues came to a head and a decision had to be made.  It was either continue with hospice and simply get worse until the end came, OR, to try to continue to fight and go back to the hospital, and later to a rehab center to build his arms and legs up.  This meant accepting the PEG tube he declined (which prevented him from going to the rehab center).  This is a good outcome so far, but by no means is he out of crisis as he has an internal bleeding issue that needs to be resolved, and several wounds that need to heal.  The plus side of the PEG tube is that he will now get nutrients (protein) that he needs to get better.  I am very hopeful that he will recover to his baseline.  It is also a relief as my brother and I are not medical professionals and we had no way of helping him other than maintaining the status quo.   With a lot of luck and prayers, I hope my dad recovers and is able to go home in a month or so.  So overall this is a good thing. 

Good for your father getting better.  If he does get better, what is his quality of life and how hard will you have to work to keep that quality of life high?  My biggest fear is my boys feeling guilt and taking care of me beyond their capabilities for an extended period of time. 

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Well, the good news is now bad again.  My Dad is in the hospital and they found more issues than we knew about.  He has a bleeding issue that cannot be treated (I'd go into more detail but it is graphic), and his kidneys are completely shut down. This requires dialysis, which my Dad is refusing and the hospital is saying they can't treat him, now.  The challenging thing is we ended hospice and the home care for him, and my dad is saying he now wants to go to a hospice facility.  The problem is hospice facilities are few and far in between in Arizona. There are group homes where hospice can come out to, but my Dad says he doesn't want my brother and I to have to take care of him, making home hospice out of the question. The social worker at the hospital is trying to find a place for my Dad right now.   

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Geez. If nothing else, I really hope this roller coaster slows down for you. I also hope you're taking whatever time you can for yourself. Five minutes here and there can do wonders for your mental state. 

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2 hours ago, Zathras said:

Well, the good news is now bad again.  My Dad is in the hospital and they found more issues than we knew about.  He has a bleeding issue that cannot be treated (I'd go into more detail but it is graphic), and his kidneys are completely shut down. This requires dialysis, which my Dad is refusing and the hospital is saying they can't treat him, now.  The challenging thing is we ended hospice and the home care for him, and my dad is saying he now wants to go to a hospice facility.  The problem is hospice facilities are few and far in between in Arizona. There are group homes where hospice can come out to, but my Dad says he doesn't want my brother and I to have to take care of him, making home hospice out of the question. The social worker at the hospital is trying to find a place for my Dad right now.   

Sending really good juju's and positive vibes and anything else you need. This was where I was last year with my Mom and it made cry so hard that I was so helpless to help. Hopefully the social worker will find placement in a decent place.

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My grandma lived out her last couple months in a group home after a pretty massive stroke. The lady was super nice and took wonderful care of her. It was a new facility and I think my grandma was her first patient. Maybe the social worker will be able to find something, those people are miracle workers.

I hate to say it but worst case your dad will be made comfortable there in the hospital. I've heard of people who could not be placed and have just had to stay. If so, please seek out the pallative care folks and the chaplain. Does your dad have Medicare?

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41 minutes ago, Destiny Skywalker said:

My grandma lived out her last couple months in a group home after a pretty massive stroke. The lady was super nice and took wonderful care of her. It was a new facility and I think my grandma was her first patient. Maybe the social worker will be able to find something, those people are miracle workers.

I hate to say it but worst case your dad will be made comfortable there in the hospital. I've heard of people who could not be placed and have just had to stay. If so, please seek out the pallative care folks and the chaplain. Does your dad have Medicare?

Yeah my Dad has Medicare and insurance (Medicare is primary),  and while he is in the hospital, he is in observation, not admitted as a patient.  That means that each day he is in the hospital, he had to pay out of pocket, and the insurance (including Medicare) does not cover his hospital stay.   They are looking into palliative care, as well as hospice facilities, but the social worker has not yet got back to any of us.  Hopefully we will have an answer soon.  

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1 hour ago, Ms. Spam said:

Sending really good juju's and positive vibes and anything else you need. This was where I was last year with my Mom and it made cry so hard that I was so helpless to help. Hopefully the social worker will find placement in a decent place.

I feel helpless and useless right now.  I feel like there is an answer, but I am failing to see it, which is frustrating as hell. 

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19 hours ago, Hobbes said:

Good for your father getting better.  If he does get better, what is his quality of life and how hard will you have to work to keep that quality of life high?  My biggest fear is my boys feeling guilt and taking care of me beyond their capabilities for an extended period of time. 

If I had advice to give it is this. PLan now how you want things handled and put it in a living will or trust. Plan out your funeral arrangements, plan out what medical treatments you will and will not want, and put it in writing.  When your boys  are old enough, make sure they know exactly what you want and when you want it done.   Save money up if possible as well,  if you ever (God forbid) come down with a chronic condition that will eventually be fatal, so that you can go into a care facility that will take care of you.   

For 20 years, my Dad has time to do all that, and lived in denial all that time.   IT wasn't until 2017 he finally got a living will written out, after I harped on it for years and after a bad hospital stay he had.  Even then, he has never saved money for staying in a care facility, as he is retired and on fixed income. 

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  • 3 weeks later...

I wish I could help you in some small way. It's crazy now the small things that trigger memories or something that just makes you kind a tear up or get sad for no apparent reason after your parents pass. It's also strange the sense of it's over feels. Like a kind of guilt that I could have done more or been a better person but ultimately my Mom chose her passing. It's a kind of poetry or something. Big hugs.

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Something positive I learned from the few therapy sessions that did help is that sometimes it's the deeply rooted things from long ago that often come back to bite you.

In my case, it's been a few things.  Feeling inadequate and always having to keep up in unhealthy ways to feel worthy when I was a kid, and then dealing with loyalty and abandonment issues when my parents split around a decade ago.  Whenever I feel like I'm having to compete for attention or whenever I feel like someone has ditched me, those feelings get dug up from deep inside mental storage.

Being able to recognize that those things have been dug up sometimes helps in kind of classifying them and putting them back into storage.  You'll never really get rid of those things fully, but being able to take a step back objectively and define them helps to keep it from spiraling or soaking into other parts of your life.

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