Spinoff - Hospice care

Sorry to make this "all about jenn day", I'm just stressing out.

Has anyone had to put someone in hospice before?

FIL really wants to go home and MIL wants home hospice. She almost didn't let the socialworker tell us about the inpatient hospice recos they were making, but I told her it doens't hurt to listen.

We kind of TOLD Mom it has to be inpatient for a few reasons. Now I feel bad taking the decision away from her, but I think it's the right one.

Home hospice is 4 hours of help 5x a week, nurse 1x week doctor 1x month. It's really a joke. Mom would have to take FMLA every single day and would still need to hire more help, so she'd lose money not working AND she'd have to pay for another aide or visiting nurse.

Inpatient hospice is 24 hour nursing care.

RIght now he hasn't eaten and can't eat despite being on max doses of nausea meds. He has the morphine clicker, he's got a catheter. He's moaning in pain, or yelling for help a lot. He's afraid to go to sleep. He's going back and forth between lucidity and dementia. Mom is a nervous wreck in general, but especially now. I don't think she can mentally handle giving him 24 hour care. SIL is down for the week (lives upstate), but she is away from her husband and her 2 kids who are very upset about being away from their mom andabout their grandpa dying and she already told Mom she really could not handle staying there and doing the 24 hour care thing. Doug could maybe take off a few days, but he really can't do the FMLA thing because he really needs to getpaid. We're locked into a wedding contract obviously and they're not going to want to hear about his dad when the bill comes.

That having been said he REALLY wants to go home. He's alsoa nasty abusive person who might make MILs an emotional hell in his last days if she ignores his wishes.

Another thing is that the house is horrible. He wouldn't allow MIL to clean, so it hasn't been cleaned in years and he's a heavy smoker. There's stuff EVERYWHERE, and as long as he's in the house or coming back to it, we can't clean or he'll go nuts right then and there.

Ugh, sorry that was longer than I intended. I'm just a liiiiiiiiiiiiiiiittle stressed right now. I've already gotten a lot of good ideas on the other thread, but I think only Jewish girls would come in tot hat one, and I really need advice from anyone who has been through this before.

Please let me know if you have experience and if you think inpatient is the right decision. I also think inpatient will be good because mom will have support there 24/7. At home she'll be all alone atnight and depressed, but inthe hospital she'll have support from the staff there because that's what they do..at least I think it is.

Thank you

Re: Spinoff - Hospice care

It's such a personal decision. My Dad had home hospice at the end but he was able to get up to use the bathroom with help. He had a colostomy bag also. My mom had to have round the clock nursing care to help her. He was pretty lucid up until 2 days before he passed away.

It's a hard choice and I'm sorry that anyone has to make these type of decisions.

Re: Spinoff - Hospice care

Posted by Phyl

My mom had to have round the clock nursing care to help her.

Re: Spinoff - Hospice care

Posted by JenniferEver

Posted by Phyl

My mom had to have round the clock nursing care to help her.

I'm sorry about your dad.

I think this will be the case too, and I just don't know how the family would pay for it. I think people are used to bullying mom around..so I think I really need to try to gt everyone to acknowledge that it is her decision. My SIL has no patience for it and actually walked away from the conversation bc mom was saying she wanted home hospice.

What concerns me is that he's really not eating. I just don't know if we can provide that level of care at home. We'll see what happens. Apparently today was a doozy of a day at the hospital after we left, so my SIL will fill us in tonight. I feel like today has been 12 days long already.

Re: Spinoff - Hospice care

Re: Spinoff - Hospice care

He's afraid to fall asleep because he's afraid he'll die in his sleep, so he isn't getting any sleep either. it's so sad. This is horrible. He's only 60 years old. I know it's difficult to lose a parent at ANY age, but he's very young.

Re: Spinoff - Hospice care

Posted by JenniferEver

He's afraid to fall asleep because he's afraid he'll die in his sleep, so he isn't getting any sleep either. it's so sad. This is horrible. He's only 60 years old. I know it's difficult to lose a parent at ANY age, but he's very young.

Re: Spinoff - Hospice care

Posted by Phyl

Posted by JenniferEver

He's afraid to fall asleep because he's afraid he'll die in his sleep, so he isn't getting any sleep either. it's so sad. This is horrible. He's only 60 years old. I know it's difficult to lose a parent at ANY age, but he's very young.

I kind of felt that's why he was afraid to sleep. He is too young.

Is your MIL and FIL still married? I know he probably just wants to be in a familiar surroundings. It's more comforting for him I'm sure.

Re: Spinoff - Hospice care

Posted by JenniferEver

Posted by Phyl

Posted by JenniferEver

He's afraid to fall asleep because he's afraid he'll die in his sleep, so he isn't getting any sleep either. it's so sad. This is horrible. He's only 60 years old. I know it's difficult to lose a parent at ANY age, but he's very young.

I kind of felt that's why he was afraid to sleep. He is too young.

Is your MIL and FIL still married? I know he probably just wants to be in a familiar surroundings. It's more comforting for him I'm sure.

Yep. They're still married. Like Doug and I, they've been together since they were teenagers.

Yeah. I feel like I have to be the one to keep my head. Mom is really emotional and doesn't make decisions well, and so Doug and SIL are used to kind of telling her what to do (like dad did/does), so I feel like in this case, I need to kind of defend her right to make the decision, although to me inpatient seems like it's better for all involved.

Re: Spinoff - Hospice care

The Dr feels stronlgy about inpatient, but won't push

Re: Spinoff - Hospice care

Re: Spinoff - Hospice care

Posted by JenniferEver

Posted by Phyl

My mom had to have round the clock nursing care to help her.

I'm sorry about your dad.

I think this will be the case too, and I just don't know how the family would pay for it. I think people are used to bullying mom around..so I think I really need to try to gt everyone to acknowledge that it is her decision. My SIL has no patience for it and actually walked away from the conversation bc mom was saying she wanted home hospice.

What concerns me is that he's really not eating. I just don't know if we can provide that level of care at home. We'll see what happens. Apparently today was a doozy of a day at the hospital after we left, so my SIL will fill us in tonight. I feel like today has been 12 days long already.

Re: Spinoff - Hospice care

We tried hospice at home with my mom. We lasted about a week. It was 24 hours a day of care, and me in charge of medications every couple of hours. We were all exhausted and miserable. My mom also wouldn't sleep and would try to escape out of the house at night. We had to have 2 of us (out of 3 siblings) sleep in her bed with her every night to make sure she didn't get out. When we moved her to the inpatient hospice center, it was so much better for ALL OF US, mom included. I think she felt relaxed knowing the nurses were there. The first night there she slept all night! We were allowed to stay there 24/7 so my mom was never alone. I slept there 4-5 days a week and my brother and sister did the other 3/4 nights. We had a great experience and I will recommend her hospice center (Good Shepherd Hospice) to everyone... we all wanted mom to come home but the hospice center became a second home to all of us. I think you are making the right decision.

Re: Spinoff - Hospice care

my grandmother had hospice care, but she was in the nursing home while she had it. The nurse only came to her a couple of hours per day. She was completely dependent at that point and there was no way that my family could've met her needs, even with exhausting themselves trying. I can see wanting the comfort of your own home and all of the reasons that go along with that, but unless you can have an aide around the clock, it's just SO much to put on the family.

I've heard great things from the family members about the palliative care unit at our hospital. I think it takes special people to work there and b/c of that- they really do make it the best experience that they can (given the circumstances).

good luck

Re: Spinoff - Hospice care

Posted by JenniferEver

Posted by Phyl

My mom had to have round the clock nursing care to help her.

I'm sorry about your dad.

I think this will be the case too, and I just don't know how the family would pay for it. I think people are used to bullying mom around..so I think I really need to try to gt everyone to acknowledge that it is her decision. My SIL has no patience for it and actually walked away from the conversation bc mom was saying she wanted home hospice.

What concerns me is that he's really not eating. I just don't know if we can provide that level of care at home. We'll see what happens. Apparently today was a doozy of a day at the hospital after we left, so my SIL will fill us in tonight. I feel like today has been 12 days long already.

Re: Spinoff - Hospice care

Hospice at home is exhausting - I did it with my mom. It took her 17 days to die from the time she took the 'turn for the worse'.
I had to take time off of work. The morphine made her hallucinate, she slept during the day and kept me up all night. My dad was in denial and not good help at all.
I bathed my mom, changed her diapers, dressed her bed sores, administered her meds. The list goes on and on.
It was my mom's wish to be at home and I honored it. Honestly, it took a lot out of me, and took me a long time to recover from her death.

When MIL was dying, she stayed at an inpatient facility. There was no way she could go home for at home hospice (they are hoarders), and we had no room for her to stay with us. DH would not have been able to take care of his mom.

If FIL is not eating anymore, please don't push it. This sounds cruel, but it means that his body is starting to shut down and does not need food anymore. His body will not be able to digest the food.

I am so sorry that you are going thru this.

Re: Spinoff - Hospice care

He was transferred to an inpatient hospice today. The place is a dump, totally depressing and this whole situation is harder than i could have ever imagined.

It's funnf you mentioned hoarding. That's a HUGE reason why home hospice woudn't work. He always had a control issue and wouldn't let anyone clean or throw anything out. then mom is alsoa hoarder. the place hasn't been cleaned in years and you can't even get into most rooms. Doug is going there to tomorrow to take/throw out the rest of his stuff from the apt, and they're actually having a 5 person cleaning crew on Satrday. Apparently they speciialize in hoarders and they come and pack everything up in boxes so the house is livable and they'll be cleaning the walls, etc (dad was a heavy smoker),

He could go any day now. They took him off the nutrition IV. They said the comfort it could provide is really minimal and it may prolong his suffering. He's on a max dose of morphine. I'm so sad. Over the pst few nights he's had moments of lucidity when he was very much himself and joking and telling army stories, but other moments of severe dementia either from pain, or meds or the disease. I think from now on he'll pretty much be knocked out for the duration, which I know is the humane thing to do, but it makes me so sad.

I am looking at pictures from my sister in law's wedding last summer, and he looked very sick then, but it's NOTHING compared to what he looks like now. Looking at the pics at first made me so sad, but then made me so angry. He had good qualities but was always very abusive nd had a lot of issues. i think the house was a way of punishing his family/wfie (for what i don't know), as were allll the financial and legal loose ends he left. It's a freaking mess and it's awful what he's put his family through. Not to mention the anger everyone feels about his having ignored the symptoms of one of the most treateable and non-fatal cancers there is. It also makes me angry at MIL for not having been able to stand up to him, even to save his life.

This is just so difficult. It's hospital in the morning, work, hospuital until late. All i have time to fo at home is shower and sleep a little bit. I've been gong to work with my hair a mess, badly in need of a wax, etc etc and forget my physical therapy...I am supposed to sing at church tomorrow night. Maybe I will take a day off from the hospital and go. I don't want to leave Doug alone, but there's only so much I can sit there and stare at the skeleton that used to be my FIL.

Re: Spinoff - Hospice care

Re: Spinoff - Hospice care

I'm sad that your FIL is slipping away, but happy that he does have inpatient hospice. In his/your situation, this is the best.
Cherish the lucid moments, and when he hallucinates, go with it. Like you said, it's the meds, the disease. My mom would say the craziest things and I'd just go with it.
MIL's cancer spread to her brain, so she just completely went into dementia, she babbled at us when she "spoke" but we went along with it.

Just make sure that FIL is getting adequate pain meds and sedatives if he gets too agitated. Palliative care is the most important now. No need for him and the family to suffer needlessly.

I don't want to come off as preaching, but BTDT twice, if I can make this process easier for anyone else, I'd gladly share my stories.

I wish your FIL an easy and painless passing, and I wish you and your family peace.

Re: Spinoff - Hospice care

This a really hard descion that my family had to make recently also... My MIL was very sick and we had home hospice thenwe had no choice but to put her in a in- hospice place.. I have to tell you for us as a family it was the best thing we could have did for her.. They where the most kind and heartfelt people ever.. My MIL was only there 4 days before she past away, but even when she past they where their for us no matter what and are still there for us 7 months later..
You have to do what you think is best for your sistuation.. many prayers for your family