Somebody tell me we're doing the right thing (FIL related)

[AimeeM]

We're visiting my FIL. 

Summary of backstory: FIL is 85 (in two days), prostate cancer that they believe has spread to his bones. He has refused further diagnostics and any treatment that isn't comfort related (with our blessing; we understand that at his age his quality of life would decrease with treatment, considering how frail he already is).

FIL lives in Pennsylvania and we live in South Carolina.

 

FIL has a hospice nurse who comes in and he does have someone do some moderate cleaning. He is well cared for, food-wise, by the other Italians/others in the area (most of whom, if they aren't related to him, have had their children taking lessons from him for 60 or so years). Nobody can take care of him full time, as most of them are also elderly.

 

Things are bad, bad here this visit. I mean, the house. It's bad. And Dad can't even make it upstairs any more (at all), which is where the only bathroom and all the bedrooms are. So, he's using a CUP to urinate in :( He's losing bowel control (had an accident in the kitchen earlier and wouldn't let me help clean it up). He's sleeping on the couch. He managed to get himself into a position on the couch that he couldn't get out of yesterday - and I needed to physically lift him up and move him... and, what's heartbreakingly sad is that I was very easily able to lift him. He's lost weight. 

 

He has to come home with us. He doesn't want to, but he has to. I'm so afraid that he's going to die from depression for it, though. He's been in this house for over 70 years. His students are here, his family (all as elderly as him), his friends - but he needs around the clock help right now. 

I mean he HAS to come home with us. The alternative of me and the kids coming to stay here for a bit isn't even an option now - the house is that far gone. He has the money to take care of these things, but he just can't handle it. His house taxes are so far past due that when DH opened Dad's piled up mail, he found out the house was going to be auctioned in July if it wasn't paid IMMEDIATELY (being taken care of tomorrow). Dad's heart medication hadn't even been opened - Dad didn't realize he was supposed to take it. 

 

I tried to start cleaning like I do on every trip and there's no freakin' point. The house is that bad. Nothing I can do will touch what needs to be done. 

 

I think his nurse is coming tomorrow. I'm going to ask if she can prescribe him something for the car ride, to make it easier on him. Outside of walking across the street to his music store, he hasn't left the house more than a handful of times in... goodness, I think about 30 years. 

 

We have a tentative plan. We purchased the much larger home this past October. Dad will have his own small suite on the second floor, so he doesn't have to go far for the restroom. We can put in a stair lift (not sure how that will work with The Marvelous Flying Marco). We can have hospice transferred, I'm assuming. The one concern I have is healthcare. FIL is able to access entirely at-home healthcare here - I've never heard of such a thing where we live and he absolutely will NOT go IN for healthcare. Even before hospice, he had a doctor and nurses that still made house calls that came to his place.  (Never mind. Looked it up and he CAN receive in-home care at our place through a homebound service)

 

Tell me we're doing the right thing. I feel so wrong about this. I feel like we're forcing our hand. Well, we really are, but we don't have any other options. We've been putting this off for over a year now because he's so against the idea of leaving his home and we didn't want him to deteriorate mentally because we forced it... but now we just CAN'T any more. He needs to let us help him. 

Edited May 30, 2016 by AimeeM

[SparklyUnicorn]

I think you are doing the best you can.  That's so difficult all around.

 

:grouphug:

[Lawana]

What a heartbreaking situation. I know you have been concerned about him for a very long time. I hope he will accept the inevitable.

 

In the meantime, does he at least have a bedside commode?

[Xahm]

You are doing the right thing. You know it. It's the only thing you can do, and it sounds like you are doing it very well. That doesn't mean it is easy or it will be pleasant, but it's right. The end is coming, sadly, but it will be the cancer that kills him, not anything you do.

I pray for you in this decision and that it will bring unexpected blessings in the midst of pain.

[Melissa in Australia]

:grouphug:  :grouphug: :grouphug:  

 

I think that sometimes old people become so stubborn and think they are coping better than they really are. Sometimes you need to force their hand.

 

we have something along these lines with MIL at the moment. She wants DH to shift to Canada to look after her- not happening. She keeps canceling her in home help. She had a major stroke earlier this year is 94, totally blind and FIL died last month. FIL was more able then her. ATM she is just getting by with relatives dropping in twice a day, but when winter comes she will not be able to stay at home any longer. She just refuses to accept it.

[AimeeM]

What a heartbreaking situation. I know you have been concerned about him for a very long time. I hope he will accept the inevitable.

 

In the meantime, does he at least have a bedside commode?

Somewhere he has one... but I guess using the cup allows him to think that he can, at some point, make it back upstairs. The portable potty seems more permanent to him. He very much thinks that this is just another small hurdle and that he will feel better and be back at work soon. For the love of all things good and holy - the man is still teaching in his living room!

[AimeeM]

:grouphug:  :grouphug: :grouphug:  

 

I think that sometimes old people become so stubborn and think they are coping better than they really are. Sometimes you need to force their hand.

 

we have something along these lines with MIL at the moment. She wants DH to shift to Canada to look after her- not happening. She keeps canceling her in home help. She had a major stroke earlier this year is 94, totally blind and FIL died last month. FIL was more able then her. ATM she is just getting by with relatives dropping in twice a day, but when winter comes she will not be able to stay at home any longer. She just refuses to accept it.

Dad didn't even want us to come stay with him. It was my idea. He doesn't want to be a "burden." What the crap ever. He has never been a burden a day in his life. I swear to God this man was simply born helpful and generous. It's our turn to care for him now and he is just as stubborn as his son.

[Liz CA]

Aimee :grouphug: :grouphug:

 

I am trying to see this through your FIL's eyes. He likely thinks he has not much time. Relocating him from a neighborhood with long-time friends may seem worse to him than what is happening right now.

Is there any chance you and your dh could:

 

1. hire a cleaning service - even just once a week?

2. Contract with a "Stay at Home" service? This is what they are called around here. It does cost money. My aunt was able to live her last months in the house she spent 48 years in because she was able to use the Stay at Home Service where a person came every day for a set amount of hours. The rest of the time, good friends and a neighbor checked in with her and I was there as well on weekends.

 

I hear your heart in this and how you want to provide for him but I wonder if the best gift you could give him would be the chance to be at home.

:grouphug:

[Laura Corin]

Would he prefer to go into a care home within his own community?

[Lawana]

Somewhere he has one... but I guess using the cup allows him to think that he can, at some point, make it back upstairs. The portable potty seems more permanent to him. He very much thinks that this is just another small hurdle and that he will feel better and be back at work soon. For the love of all things good and holy - the man is still teaching in his living room!

I would think you could sell the commode as a temporary thing, couldn't you? How on earth is he taking care of solid waste if he can't go up to his bathroom? How long has it been since he was able to climb the stairs? Is that why he had an accident in the kitchen?

[AimeeM]

He has someone who cleans - but the house, frankly, needs to be bombed and every piece of carpet, etc needs to be torn out and replaced. 

 

He will not allow a stranger to care for him (clean up his accidents, etc) and I'm the only person he will allow to go through his things, trash old food (he has a thing about wasted food - even if it's molded). He would allow me to do these things, but with hte state of the house, there is no way I can stay here with the kids and, beyond the house, the neighborhood is sincerely dangerous now. This is no longer a neighborhood filled with Italian immigrants like him and his family - it's filled to bust with gangs, drugs, shootings, cop/car chases, etc. 

 

Initially, we had wanted to hire someone to come in and care for him. He is as against that as he is moving. We wanted him to be able to stay here, but the state of the house and his refusal to allow all-day in-home care makes that impossible.

Aimee :grouphug: :grouphug:

 

I am trying to see this through your FIL's eyes. He likely thinks he has not much time. Relocating him from a neighborhood with long-time friends may seem worse to him than what is happening right now.

Is there any chance you and your dh could:

 

1. hire a cleaning service - even just once a week?

2. Contract with a "Stay at Home" service? This is what they are called around here. It does cost money. My aunt was able to live her last months in the house she spent 48 years in because she was able to use the Stay at Home Service where a person came every day for a set amount of hours. The rest of the time, good friends and a neighbor checked in with her and I was there as well on weekends.

 

I hear your heart in this and how you want to provide for him but I wonder if the best gift you could give him would be the chance to be at home.

:grouphug:

 

Edited May 30, 2016 by AimeeM

[AimeeM]

I would think you could sell the commode as a temporary thing, couldn't you? How on earth is he taking care of solid waste if he can't go up to his bathroom? How long has it been since he was able to climb the stairs? Is that why he had an accident in the kitchen?

No, the accident was because he couldn't move fast enough (it wouldn't have made a difference where the bathroom was, unless it was within a dozen feet of him or so). 

I have no clue how he's taking care of solid waste. We had no clue things were this bad - and, apparently, the lifelong friends and family checking in on him see no big deal? I'm not being charitable - I know these people love him, but really, they had promised to call if things got bad. One family member did call, but then (the next week) said things seemed much better.

[AimeeM]

Would he prefer to go into a care home within his own community?

No. His attachment is to the house - the community isn't the same by a long shot. Even the old friends and family have long since left the community (they just live within driving distance). He definitely doesn't want to be in a home. 

[AimeeM]

To clarify, if he were happy, we would do absolutely anything to keep him here. He isn't happy.

I asked him if he needed anything earlier and his reply was, "A new life?" followed by one of the most uncharacteristic laughs I've ever heard from the man. He is miserable. He just isn't able to make the plunge. 

[eternalsummer]

No, the accident was because he couldn't move fast enough (it wouldn't have made a difference where the bathroom was, unless it was within a dozen feet of him or so). 

I have no clue how he's taking care of solid waste. We had no clue things were this bad - and, apparently, the lifelong friends and family checking in on him see no big deal? I'm not being charitable - I know these people love him, but really, they had promised to call if things got bad. One family member did call, but then (the next week) said things seemed much better.

 

Probably both he and the friends/family have been boiled slowly like the frog in hot water idiom.

[TammyS]

 I swear to God this man was simply born helpful and generous..

 

Then this is the part you focus on.  What can he help with?  More than you think, maybe.  Is he able to help the kids with music lessons (we don't really care for these purposes if the lessons are productive, it's just to give him something to do)?  Can the kids do a family history project, maybe including a family tree or book or something, and he can spend long hours talking to them about it, telling stories, making contribution to it that only HE can?  Is there some part of his personality that you can harvest for the betterment of your family (does he like chess or cards?  does he tell awesome jokes?)?  I would encourage the kids to ask him for help as often as they can (obviously, help that he is reasonably able to give in his condition).

[Ausmumof3]

We're visiting my FIL.

Summary of backstory: FIL is 85 (in two days), prostate cancer that they believe has spread to his bones. He has refused further diagnostics and any treatment that isn't comfort related (with our blessing; we understand that at his age his quality of life would decrease with treatment, considering how frail he already is).

FIL lives in Pennsylvania and we live in South Carolina.

 

FIL has a hospice nurse who comes in and he does have someone do some moderate cleaning. He is well cared for, food-wise, by the other Italians/others in the area (most of whom, if they aren't related to him, have had their children taking lessons from him for 60 or so years). Nobody can take care of him full time, as most of them are also elderly.

 

Things are bad, bad here this visit. I mean, the house. It's bad. And Dad can't even make it upstairs any more (at all), which is where the only bathroom and all the bedrooms are. So, he's using a CUP to urinate in :( He's losing bowel control (had an accident in the kitchen earlier and wouldn't let me help clean it up). He's sleeping on the couch. He managed to get himself into a position on the couch that he couldn't get out of yesterday - and I needed to physically lift him up and move him... and, what's heartbreakingly sad is that I was very easily able to lift him. He's lost weight.

 

He has to come home with us. He doesn't want to, but he has to. I'm so afraid that he's going to die from depression for it, though. He's been in this house for over 70 years. His students are here, his family (all as elderly as him), his friends - but he needs around the clock help right now.

I mean he HAS to come home with us. The alternative of me and the kids coming to stay here for a bit isn't even an option now - the house is that far gone. He has the money to take care of these things, but he just can't handle it. His house taxes are so far past due that when DH opened Dad's piled up mail, he found out the house was going to be auctioned in July if it wasn't paid IMMEDIATELY (being taken care of tomorrow). Dad's heart medication hadn't even been opened - Dad didn't realize he was supposed to take it.

 

I tried to start cleaning like I do on every trip and there's no freakin' point. The house is that bad. Nothing I can do will touch what needs to be done.

 

I think his nurse is coming tomorrow. I'm going to ask if she can prescribe him something for the car ride, to make it easier on him. Outside of walking across the street to his music store, he hasn't left the house more than a handful of times in... goodness, I think about 30 years.

 

We have a tentative plan. We purchased the much larger home this past October. Dad will have his own small suite on the second floor, so he doesn't have to go far for the restroom. We can put in a stair lift (not sure how that will work with The Marvelous Flying Marco). We can have hospice transferred, I'm assuming. The one concern I have is healthcare. FIL is able to access entirely at-home healthcare here - I've never heard of such a thing where we live and he absolutely will NOT go IN for healthcare. Even before hospice, he had a doctor and nurses that still made house calls that came to his place. (Never mind. Looked it up and he CAN receive in-home care at our place through a homebound service)

 

Tell me we're doing the right thing. I feel so wrong about this. I feel like we're forcing our hand. Well, we really are, but we don't have any other options. We've been putting this off for over a year now because he's so against the idea of leaving his home and we didn't want him to deteriorate mentally because we forced it... but now we just CAN'T any more. He needs to let us help him.

You are doing the right thing and you sound like an amazing daughter in law.

[AimeeM]

Then this is the part you focus on.  What can he help with?  More than you think, maybe.  Is he able to help the kids with music lessons (we don't really care for these purposes if the lessons are productive, it's just to give him something to do)?  Can the kids do a family history project, maybe including a family tree or book or something, and he can spend long hours talking to them about it, telling stories, making contribution to it that only HE can?  Is there some part of his personality that you can harvest for the betterment of your family (does he like chess or cards?  does he tell awesome jokes?)?  I would encourage the kids to ask him for help as often as they can (obviously, help that he is reasonably able to give in his condition).

He can definitely give the children music lessons. In fact, I told him he could give our entire subdivision lessons if he wanted. DH is finishing our basement with a music studio anyway, so...

 

I definitely turned on the tears yesterday and begged him to come stay with us because I didn't feel safe staying at our house without a man when DH is out of the state or country on business. I don't even care at this point that I was lying. He has a soft spot for me (no worries - it's absolutely reciprocated), he is definitely more old fashioned, and frequently warns me (over the phone) to be careful/safe/etc. It wasn't until he wasn't able to anymore that he even let me walk to my car unescorted (by him or DH) when we visited him. I'll milk it if I can.

[hornblower]

You're doing the right thing. He can't stay there. Period, full stop. 

I would give him the option of a local care home in case he's wanting to stay where people can visit him but that would be it. These are the choices, pick one. 

[Innisfree]

BT, DT. It was so, so hard, in every way, for my mother (whom we moved) and for me. Huge sympathy and hugs.

 

When you say he has a hospice nurse... For us, that meant the doctor thought my mother was likely to die within a certain number of months. That was the requirement for prescribing hospice. But the doctor also said that sometimes people improved and went off hospice, then maybe back on later.

 

So, do you have any sort of time frame from the doctor?

 

And what exactly do you mean about the house being so bad?

 

Clearly the layout isn't suitable.

 

Clearly he can't manage financial affairs.

 

Beyond that, is it utterly filthy? Is that the main reason you can't stay there?

 

I'm trying to understand the details so maybe I can offer help.

 

If you move him, what will happen to the house then? At some point it will have to be cleaned out. I'm wondering if there's any way to manage letting him stay, if his time frame is not very long.

 

We ended up needing a potty chair by the bed for my mother, even though she had a bathroom steps away. So the bathroom might not even be an issue if you can make accommodations like that. We also needed a hospital bed, and hospice provided it. That helped with getting-up-and-down issues. You can probably do all this in your home, if you end up needing to move him.

 

You're the only ones who can decide if moving him is necessary, and if you make that choice, it will be because it is really essential. How much you all love him is very clear. I know how hard it is, and I did make that choice and move my mother. She was also very rooted in her community and very unwilling to move. When I moved her, though, her life expectancy was significantly longer. Since he's already on hospice, I wonder if there's any way to manage letting him stay.

 

Is there a local board that handles elders' issues? Or perhaps the hospice people might have some ideas?

 

I've read your threads about Marco, and I have a child with autism who was a toddler when I cleaned out my mother's house. So, I do get it. The whole process was a nightmare. The feeling of responsibility is so hard, and knowing you have to be the ones to make that choice and trying to balance everybody's needs can be overwhelming.

 

We really did have to move my mother, and maybe you do too. She was never reconciled to the move. It did hurt her very much. That just about broke my heart. But she also said that the best result of moving was getting to see her grandchildren so much more. She was an important part of their lives, and they brightened her life. So maybe, if you need to move him, there will be some times you can all treasure because he is living with you. I hope you can find peace and comfort with whatever you need to do.

 

ETA: just skimmed all that was posted while I was writing. Clearly you have to do this. You are doing the right thing.

Edited May 30, 2016 by Innisfree

[katilac]

That's a really rough situation. 

 

I would point blank ask the nurse, do you think we're looking at weeks or months? Because of course they can always be wrong, but they usually have some idea. If it's likely weeks, I'd do everything possible to keep him home. They may be able to advise you on the overall situation as well; if not them, then the council on aging. 

 

I don't see a GOOD solution. You'll have to do the best you can. If you do have to take him with you, I'd definitely ask if driving or flying would be better. Long car rides are getting tough on my parents, and they are still in their 70s and pretty good health. 

 

If he has some money, can you increase the housecleaning? Yes, I get that it's bad, but if he's been living in it so far, that wouldn't be my deal breaker. Can he pay for some flights for you and dh to alternate coming up on some weekends, with the other one at home with the kids? 

 

I'm just tossing out ideas. If I could at all keep him at home, I would - not just for his sake, but for your kids. My sister died of cancer when my kids were young, and it was a hard, hard death even with only palliative care at the end. She was in the hospital on hospice; we could not have taken care of her at home because we could not move her. Even in the hospital, with at least one of us there 24/7 along with the nurses, it was brutally difficult to take care of her, and of course brutally difficult on her.

 

The last week or so was not something I would have wanted a child to see (by then she could not keep track of time so wasn't aware they weren't coming any longer).  We are all haunted by certain things that happened to this day, more than a decade later. The medicines to keep you calm and peaceful don't always work. It was hard. 

 

I'm not trying to make the situation even more difficult for you, I just want to say that it's not always possible to bring someone home with you, and if that's what you decide it's okay. 

 

I hope the best decision becomes clear. 

[AimeeM]

BT, DT. It was so, so hard, in every way, for my mother (whom we moved) and for me. Huge sympathy and hugs.

 

When you say he has a hospice nurse... For us, that meant the doctor thought my mother was likely to die within a certain number of months. That was the requirement for prescribing hospice. But the doctor also said that sometimes people improved and went off hospice, then maybe back on later.

 

So, do you have any sort of time frame from the doctor? No, because he's refused further testing. It could be a month, it could be years still.

 

And what exactly do you mean about the house being so bad? I was trying not to say it because saying it makes it more real. The kind of bad where, when I go to clean up his kitchen, every time I move something cockroaches scatter. The house is so cluttered that there is only a small patch within which we can walk from one room to another. DH purchased a portable AC unit yesterday, but before that apparently Dad was sitting here boiling.

 

Clearly the layout isn't suitable.

 

Clearly he can't manage financial affairs.

 

Beyond that, is it utterly filthy? Is that the main reason you can't stay there? It needs to be bombed. The carpets need to go. The entire place needs to be gone through (and imagine over 70 years of stuff - his, his late wife's, his sons', his parents' stuff, etc) and almost everything needs to be trashed or stored. The neighborhood has also gone bad, bad, bad.

 

I'm trying to understand the details so maybe I can offer help.

 

If you move him, what will happen to the house then? At some point it will have to be cleaned out. I'm wondering if there's any way to manage letting him stay, if his time frame is not very long. We can hire someone to come in, bomb it, rip up the carpet, etc. Honestly, the rest of it (decluttering, going through 3-4 generations worth of stuff) was going to happen after he passed. He (FIL) can't emotionally handle doing it while he's living.

 

We ended up needing a potty chair by the bed for my mother, even though she had a bathroom steps away. So the bathroom might not even be an issue if you can make accommodations like that. We also needed a hospital bed, and hospice provided it. That helped with getting-up-and-down issues. You can probably do all this in your home, if you end up needing to move him.

 

You're the only ones who can decide if moving him is necessary, and if you make that choice, it will be because it is really essential. How much you all love him is very clear. I know how hard it is, and I did make that choice and move my mother. She was also very rooted in her community and very unwilling to move. When I moved her, though, her life expectancy was significantly longer. Since he's already on hospice, I wonder if there's any way to manage letting him stay.

 

Is there a local board that handles elders' issues? Or perhaps the hospice people might have some ideas?

 

I've read your threads about Marco, and I have a child with autism who was a toddler when I cleaned out my mother's house. So, I do get it. The whole process was a nightmare. The feeling of responsibility is so hard, and knowing you have to be the ones to make that choice and trying to balance everybody's needs can be overwhelming.

 

We really did have to move my mother, and maybe you do too. She was never reconciled to the move. It did hurt her very much. That just about broke my heart. But she also said that the best result of moving was getting to see her grandchildren so much more. She was an important part of their lives, and they brightened her life. So maybe, if you need to move him, there will be some times you can all treasure because he is living with you. I hope you can find peace and comfort with whatever you need to do.

 

[AimeeM]

DH travels too much for work for him to be much help rotating weekends. Since we haven't a real timeline on Dad's health, it isn't prudent for DH to ask for a bunch of time off work now - he's going to need it later, when the end becomes very, very clear. KWIM?

 

When I say that a housekeeper won't do much, it's because the house needs to be bombed and flooring ripped out. A housekeeper isn't going to do anything for it. I just had to toss a ton of food because of bugs (he's going to have a fit when he sees the food tossed). 

 

They will not give a timeline. It could be months or years. We aren't sure. 

That's a really rough situation. 

 

I would point blank ask the nurse, do you think we're looking at weeks or months? Because of course they can always be wrong, but they usually have some idea. If it's likely weeks, I'd do everything possible to keep him home. They may be able to advise you on the overall situation as well; if not them, then the council on aging. 

 

I don't see a GOOD solution. You'll have to do the best you can. If you do have to take him with you, I'd definitely ask if driving or flying would be better. Long car rides are getting tough on my parents, and they are still in their 70s and pretty good health. 

 

If he has some money, can you increase the housecleaning? Yes, I get that it's bad, but if he's been living in it so far, that wouldn't be my deal breaker. Can he pay for some flights for you and dh to alternate coming up on some weekends, with the other one at home with the kids? 

 

I'm just tossing out ideas. If I could at all keep him at home, I would - not just for his sake, but for your kids. My sister died of cancer when my kids were young, and it was a hard, hard death even with only palliative care at the end. She was in the hospital on hospice; we could not have taken care of her at home because we could not move her. Even in the hospital, with at least one of us there 24/7 along with the nurses, it was brutally difficult to take care of her, and of course brutally difficult on her.

 

The last week or so was not something I would have wanted a child to see (by then she could not keep track of time so wasn't aware they weren't coming any longer).  We are all haunted by certain things that happened to this day, more than a decade later. The medicines to keep you calm and peaceful don't always work. It was hard. 

 

I'm not trying to make the situation even more difficult for you, I just want to say that it's not always possible to bring someone home with you, and if that's what you decide it's okay. 

 

I hope the best decision becomes clear. 

 

Edited May 30, 2016 by AimeeM

[hornblower]

Actually, let me back up one step. 

& let me preface by saying that our relative who was finally moved out, we had to get the police to attend (along with a doctor and social worker and nurses) - so we've btdt. 

Someone has to put on their big grown up panties & INSIST on a visit with a gerontologist or oncologist or the primary physician so you get accurate state of health. 

You cannot transport him without knowing his health details. 

Similarly, you cannot even begin looking at a placement anywhere else without an accurate health picture. 

I get that it's hard & I get that some people like to be stubborn and make it even more difficult but someone HAS to take charge and and insist certain things get done. 

 

[Liz CA]

He has someone who cleans - but the house, frankly, needs to be bombed and every piece of carpet, etc needs to be torn out and replaced. 

 

He will not allow a stranger to care for him (clean up his accidents, etc) and I'm the only person he will allow to go through his things, trash old food (he has a thing about wasted food - even if it's molded). He would allow me to do these things, but with hte state of the house, there is no way I can stay here with the kids and, beyond the house, the neighborhood is sincerely dangerous now. This is no longer a neighborhood filled with Italian immigrants like him and his family - it's filled to bust with gangs, drugs, shootings, cop/car chases, etc. 

 

Initially, we had wanted to hire someone to come in and care for him. He is as against that as he is moving. We wanted him to be able to stay here, but the state of the house and his refusal to allow all-day in-home care makes that impossible.

 

This is such a difficult thing. Can you present this as his two options (unless there are more).

1. Either you live with us

2. You live in your home but you need to allow care. Don't know what state laws in PA are but in some states if news gets out how he is living, they will come in, appoint a conservator and remove him. Perhaps it's time to scare him...just a little, for his own good?

 

[Forget-Me-Not]

(((Hugs))) what a hard situation. You're doing the right thing.

[prairiewindmomma]

I remember you debating about what to do when he was first diagnosed.

 

It's time. It's beyond time. 

 

You are taking him into your home where he can be watched over and loved and cared for. His medications will be monitored and he can have his care provided for him as things progress. 

 

In case you didn't know, there are full-service clean-up companies that specialize in hazmat (and bodily fluids are considered hazmat) cleanups.  They have special enzymatic cleaners and can do anything and everything that is needed. We used Serv-Pro, and I think they are a nationwide franchise. 

[AimeeM]

He has a primary care who comes to the house. It's because he will not go through with more diagnostics that they can't give a timeline. I know not everyone will agree with us on this, but we support his decision there (with his depressive personality, it will only make things worse) - and even knowing that decision, his hospice workers, nurses, and his physician's assistant have strongly suggested he go with us.

 

We aren't looking for placement elsewhere. He has two choices - he comes with us or we hire someone to live with him. He doesn't like either option, but there they are.

 

ETA: even his doctors are okay with his refusal for more testing (oncology, etc). At his age, with his personality, KNOWING the timeline will make things much, much worse. 

His refusal to do these things isn't stubbornness, and I shouldn't have said he was stubborn. He had a very real mental health switch when his wife died and hasn't been able to leave his home/shop since. He didn't go out much before she died, but after she died, it got much worse.

 

Actually, let me back up one step. 

& let me preface by saying that our relative who was finally moved out, we had to get the police to attend (along with a doctor and social worker and nurses) - so we've btdt. 

Someone has to put on their big grown up panties & INSIST on a visit with a gerontologist or oncologist or the primary physician so you get accurate state of health. 

You cannot transport him without knowing his health details. 

Similarly, you cannot even begin looking at a placement anywhere else without an accurate health picture. 

I get that it's hard & I get that some people like to be stubborn and make it even more difficult but someone HAS to take charge and and insist certain things get done. 

 

 

Edited May 30, 2016 by AimeeM

[AimeeM]

This is such a difficult thing. Can you present this as his two options (unless there are more).

1. Either you live with us

2. You live in your home but you need to allow care. Don't know what state laws in PA are but in some states if news gets out how he is living, they will come in, appoint a conservator and remove him. Perhaps it's time to scare him...just a little, for his own good?

 

My next tactic is to scare him. If the tears don't work. 

[MEmama]

((Hugs)).

 

My grandmother was similar--refused to leave her (pack rat) home until forced...the kids (my dad and aunt) couldn't transport her out of the south ( to California or DC) but finally forced her into a home. The entire extended family went down there to clean out the house... medications from the 1930's, bottles of arsenic under the kitchen sink, my dad's old bottles of mercury he had as a chemistry obsessed teen...

 

Idk...moving her out was the only thing they could do. She was over 90. The time was coming whatever their decision.

 

Your decision is clearly coming from a huge heart and lots of intentional desire for his best well being...I don't think you can do better than that. You are an AMAZING daughter in law and person. Do not second guess yourself.

[monstermama]

DH travels too much for work for him to be much help rotating weekends. Since we haven't a real timeline on Dad's health, it isn't prudent for DH to ask for a bunch of time off work now - he's going to need it later, when the end becomes very, very clear. KWIM?

 

When I say that a housekeeper won't do much, it's because the house needs to be bombed and flooring ripped out. A housekeeper isn't going to do anything for it. I just had to toss a ton of food because of bugs (he's going to have a fit when he sees the food tossed). 

 

They will not give a timeline. It could be months or years. We aren't sure. 

 

BTDT - pre-kids, though.   :grouphug:  :grouphug:  :grouphug:

 

He needs to move in with you.  I know you want to spare him as much anguish as possible, but when you've got bugs in the food and are peeing in a cup, and you still see that as preferable to leaving your house....

 

Can you spin it as him visiting as a sort of temporary vacation, spending time with the grandkids sort of thing?  Is there anyway you could have the house cleaned out and taken care of with the idea being that he could possibly go back there?  

 

FWIW, my gram's doctor, when it came time for us to move her, prescribed her an antidepressant/anti-anxiety medication.  For her, at least, she was much more her old self once on the meds.  Some of the things we'd attributed to the physical illness turned out to actually be mental illness, or at least were things that were treatable with those meds.

[TammyS]

My next tactic is to scare him. If the tears don't work. 

 

Add to the tears how much the kids are looking forward to having him there (assuming it's true).

 

It's really hard to tell how people will react,but once he's home with you and the kids and has more life around him, he may actually perk up a good deal.  His current living situation sounds awful for his mental health, even if his body was completely healthy.

 

If you go "scare tactic" make sure that you don't make yourself into the bad guy.  Emphasize that you want to save him from becoming a ward of the state and that you are on his side.

[AimeeM]

BTDT - pre-kids, though.   :grouphug:  :grouphug:  :grouphug:

 

He needs to move in with you.  I know you want to spare him as much anguish as possible, but when you've got bugs in the food and are peeing in a cup, and you still see that as preferable to leaving your house....

 

Can you spin it as him visiting as a sort of temporary vacation, spending time with the grandkids sort of thing?  Is there anyway you could have the house cleaned out and taken care of with the idea being that he could possibly go back there?  

 

FWIW, my gram's doctor, when it came time for us to move her, prescribed her an antidepressant/anti-anxiety medication.  For her, at least, she was much more her old self once on the meds.  Some of the things we'd attributed to the physical illness turned out to actually be mental illness, or at least were things that were treatable with those meds.

It's funny you said this. I presented it exactly as a vacation yesterday, lol. And one neighbor offered to let the pest/refurb guys in while we're gone. 

 

Unfortunately, he doesn't like vacations (apparently). :P

[AimeeM]

Add to the tears how much the kids are looking forward to having him there (assuming it's true).

 

It's really hard to tell how people will react,but once he's home with you and the kids and has more life around him, he may actually perk up a good deal.  His current living situation sounds awful for his mental health, even if his body was completely healthy.

 

If you go "scare tactic" make sure that you don't make yourself into the bad guy.  Emphasize that you want to save him from becoming a ward of the state and that you are on his side.

The kids would love it! Not only is he a music teacher but he's an artist and our oldest is dying to have him close by to help her with her projects. She (DD14) is looking forward to him being in the room next to hers so that he can "knock on the wall if he needs anything," lol.

 

I really AM afraid he'll become a ward of the state. No lie. He was THIS close to his house being auctioned off just because he hadn't the energy to open his mail! 

[Ethel Mertz]

Oh, Aimee. You are absolutely doing the right thing. He has to live with you. Good idea about getting some meds for the trip (by car, I assume?). And then, of course, you can line up hospice and whatever other helps are needed once you get back home. I am so sorry things have gotten so bad.

[AimeeM]

Oh, Aimee. You are absolutely doing the right thing. He has to live with you. Good idea about getting some meds for the trip (by car, I assume?). And then, of course, you can line up hospice and whatever other helps are needed once you get back home. I am so sorry things have gotten so bad.

Car, yes. I can't even imagine getting him and The Marvelous Flying Marco on a plane, lol. 

 

I think we would just need a hospice nurse like he's been getting here? Apparently they lined up music therapy at home for him, too, but Dad says she's "pretty bad" and that he mostly plays (guitar) for her :D

Edited May 30, 2016 by AimeeM

[TammyS]

The kids would love it! Not only is he a music teacher but he's an artist and our oldest is dying to have him close by to help her with her projects. She (DD14) is looking forward to him being in the room next to hers so that he can "knock on the wall if he needs anything," lol.

 

I really AM afraid he'll become a ward of the state. No lie. He was THIS close to his house being auctioned off just because he hadn't the energy to open his mail! 

 

Yeah.  Honestly, I would stop trying to convince him and just do it.  I think the talking and convincing, etc., may just be making it worse. It makes it appear that something is optional, when it really isn't. In this matter, I would treat him like a little kid who has declared that they are NOT going to the dentist.  Stay calm, don't argue back, and just make it happen.  And make it happen fast.  Don't drag it out and give him hope that it won't come to pass.  Put him in a car with some bags.  Worry about the rest later.

 

Pour on the sugar in all of your interactions and have the kids bring the fun and excitement.  Once you announce to him what's happening and his initial reaction is past, I would get all excited about what's going on.  Have the kids skype with him about fixing up his room, and what they are going to do when he's there, etc. 

 

Also, you may want to prepare yourself for being "the heavy".  Obviously, you can't put it on the kids in any way, but if you can, I would avoid putting it on dh, either.  Let them have the best relationship they can at the end of his life.

[Ethel Mertz]

Car, yes. I can't even imagine getting him and The Marvelous Flying Marco on a plane, lol. 

 

I think we would just need a hospice nurse like he's been getting here? Apparently they lined up music therapy at home for him, too, but Dad says she's "pretty bad" and that he mostly plays (guitar) for her :D

 

RE hospice: I was surprised when I went back to my small home town to sign my mother up for hospice that there was more than one. The one we chose, was the one I remembered from growing up there and it was non-profit. There are now for-profit hospices (surprise, surprise), so you might want to see what your location has and see if you can find reviews. The good news with hospice is that he can get ativan in a patch or gel (for anxiety) as well as roxanol (sub-lingual morphine) when he needs it. What a great idea - music therapy! When I was a teenager, I wanted to be a music therapist

[AimeeM]

Yeah.  Honestly, I would stop trying to convince him and just do it.  I think the talking and convincing, etc., may just be making it worse. It makes it appear that something is optional, when it really isn't. In this matter, I would treat him like a little kid who has declared that they are NOT going to the dentist.  Stay calm, don't argue back, and just make it happen.  And make it happen fast.  Don't drag it out and give him hope that it won't come to pass.  Put him in a car with some bags.  Worry about the rest later.

 

Pour on the sugar in all of your interactions and have the kids bring the fun and excitement.  Once you announce to him what's happening and his initial reaction is past, I would get all excited about what's going on.  Have the kids skype with him about fixing up his room, and what they are going to do when he's there, etc. 

 

Also, you may want to prepare yourself for being "the heavy".  Obviously, you can't put it on the kids in any way, but if you can, I would avoid putting it on dh, either.  Let them have the best relationship they can at the end of his life.

We're here until Sunday and hope to take him back with us. 

 

Can we really take him against his will, though? That's my concern. Technically he is still able to make his own decisions. Almost everything that is going to hell is because he PHYSICALLY isn't capable... but mentally, he's considered competent and DH is worried that, at the end of the day, we won't be able to force him to leave.

[AimeeM]

RE hospice: I was surprised when I went back to my small home town to sign my mother up for hospice that there was more than one. The one we chose, was the one I remembered from growing up there and it was non-profit. There are now for-profit hospices (surprise, surprise), so you might want to see what your location has and see if you can find reviews. The good news with hospice is that he can get ativan in a patch or gel (for anxiety) as well as roxanol (sub-lingual morphine) when he needs it. What a great idea - music therapy! When I was a teenager, I wanted to be a music therapist

Music therapy is a great idea - and, actually, even though he is a professional musician/teacher, it was great for him to have someone to play with. He still has the old crew who come around to play with him, but a younger person doing it was a treat.

 

I'm going to search my area right now for hospice. They have offered him stronger than tylenol and he won't take it, but I'd like all comfort care to be an option for him for when he does need it (we have medical power of attorney, if that matters, but I'm not sure where that applies and to what it applies).

[Valley Girl]

So, so hard. Bless you for wanting to the right thing for him. If you've already explained the options to him--live with you or have a stranger helping him daily--does he fully understand that if he refuses either option, something could happen that would take any choice completely away from him?

 

Suppose he fell and broke a hip because he was alone? Does he realize that if he becomes incapacitated like that he risks being in a nursing home? I don't mean to suggest threatening him. But he's so fortunate to HAVE a choice. Maybe if he realized how hard he was making things for you and your DH he might see reason? In his own space in your home--surrounded by familiar furnishings and mementoes--he has the chance to be surrounded by the people who love him best...who would move heaven and earth to make him happy and comfortable... and to live where he can still contribute and enrich the lives of his beloved grandchildren.

 

Would he come on a "trial" basis? Maybe if he doesn't feel locked in, he'd be more willing to try.

 

You have a good heart and you're a good daughter-in-law.

[Valley Girl]

The kids would love it! Not only is he a music teacher but he's an artist and our oldest is dying to have him close by to help her with her projects. She (DD14) is looking forward to him being in the room next to hers so that he can "knock on the wall if he needs anything," lol.

 

I really AM afraid he'll become a ward of the state. No lie. He was THIS close to his house being auctioned off just because he hadn't the energy to open his mail! 

 

Would his doctor be willing to be the "bad guy" and lay it on the line for him?

[Cinder]

:grouphug: 

[Catalytic]

We're here until Sunday and hope to take him back with us. 

 

Can we really take him against his will, though? That's my concern. Technically he is still able to make his own decisions. Almost everything that is going to hell is because he PHYSICALLY isn't capable... but mentally, he's considered competent and DH is worried that, at the end of the day, we won't be able to force him to leave.

 

That question is best asked of his PCM, because that's who you will likely need help from if you have to get a lawyer and get him declared incompetent.

[TammyS]

We're here until Sunday and hope to take him back with us. 

 

Can we really take him against his will, though? That's my concern. Technically he is still able to make his own decisions. Almost everything that is going to hell is because he PHYSICALLY isn't capable... but mentally, he's considered competent and DH is worried that, at the end of the day, we won't be able to force him to leave.

 

Legally?  No.  But if he isn't likely to put up a fight I would do it anyway.  If he's likely to just accept what is happening (by which I mean, not call the police), that's how I would do it.  Just put him in the car.  Because, yes, you can go to court and ask for guardianship, but that could result in unpredictable consequences such as him becoming a ward of the state,etc. that you are so afraid of, but even if you get it, the process is so damaging to your relationships in a time in life when you just don't want that to happen.

 

So, it's a fine line.  If he's going to be kicking and screaming on the way out of the house, or calling the police or something, then I would tell him he can come willingly or we'll do the court proceeding.  But I would avoid that scene if possible.  I would just put him in the car and if all he does is complain and object and repeatedly say he doesn't want to go, I would be ok with it. 

[AimeeM]

Legally?  No.  But if he isn't likely to put up a fight I would do it anyway.  If he's likely to just accept what is happening (by which I mean, not call the police), that's how I would do it.  Just put him in the car.  Because, yes, you can go to court and ask for guardianship, but that could result in unpredictable consequences such as him becoming a ward of the state,etc. that you are so afraid of, but even if you get it, the process is so damaging to your relationships in a time in life when you just don't want that to happen.

 

So, it's a fine line.  If he's going to be kicking and screaming on the way out of the house, or calling the police or something, then I would tell him he can come willingly or we'll do the court proceeding.  But I would avoid that scene if possible.  I would just put him in the car and if all he does is complain and object and repeatedly say he doesn't want to go, I would be ok with it. 

He wouldn't call the police on us. I have a small concern that one or two of his (similarly aged, similarly stubborn) friends would, if they caught wind that he wasn't on board with going - but that's in contrast to the vast majority of his friends, family, neighbors, and healthcare workers who feel that he DOES need to come with us.

[AimeeM]

Would his doctor be willing to be the "bad guy" and lay it on the line for him?

I'm not sure. We haven't met his PCP - only his PA and nurses. His nurse just quit and is being replaced by another, so we haven't a relationship of any sort with the new nurse.

[LucyStoner]

If he has a hospice worker, a PCP and a house leaner coming into the house why is it so bad? The healthcare providers should have reported the living situation to senior services or someone who could have helped him set up more housekeeping hours for him.

 

After my FIL died we found his home was a disaster. And that he'd been paying a woman to "clean" for him several times a week for months. We saw the house just before she started cleaning and it was not on the brink of disaster. I was livid she was letting him live like that. I didn't like the man but no one should have to live in squalor just because they are aged and infirm.

 

I agree you need a medical evaluation before moving him. You also need to get POA to move him unless he consents.

 

Have you done FT elder care before? A residential hospice or a supported living arrangement may be more practical. I cared for my mom at home until very close to the end and I don't regret it but it is hard, draining work and I relish the last few weeks we had with her when she was in hospice and we could just be with her as her family while she was still lucid instead of being entirely focused on the work parts.

[zoobie]

Leaving him there with the house in that condition and no way to toilet is elder abuse. He can either come home with you or go into a care facility there that is clean and safe. It's tough, but that's what you have to do.

[Lanny]

IMO you are doing everything correctly and he is very lucky to have you taking over for him.  My late mother lived in an apartment, alone, way past the time that she should have been in Assisted Living or some other situation.  The wife of one of my cousins called me and she took over. She moved my mother out of her apartment, to an Assisted Living facility near to where my cousin and his family lived. My mother went down the tubes quickly. I believe she passed away about 4 months after I got the     phone call from my cousins wife.  I had thought of bringing her down here, where I felt that she would get better care, but she didn't speak Spanish and the fact that everyone who would be taking care of her would be speaking Spanish probably would have been a terrible shock for her. Also, her medical coverage would not have covered her here.   She was deteriorating physically and mentally, quickly, at the end.  You will probably need to get some kind of Conservatorship or Guardianship or whatever it is called in SC, from a court, so that you have legal authority to make Legal and Medical decisions for your FIL.  God Bless You and your family for stepping up to the plate and GL to     your FIL and to your family.