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

[Alicia64]

I think you're absolutely doing the right thing. I'm sorry that you have so much heartache about doing what you don't really have much choice about. Feel strong that you're doing what needs to be done.

 

Take good care of yourself,

 

Alley

[AimeeM]

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.

A residential hospice is not in the cards. I'm not willing to do that to him. He would die - and quickly. I'm willing to put in the work and we'll hire help if needed. 

 

He's already had medical evaluations. He just refuses to go to the hospital for more specific diagnostics - and his PCP supports that decision. They've already suggested that he move down south with us, but his nurse is also visiting tomorrow (we're told), so we will definitely ask her if she recommends we have his PA or PCP come in to evaluate him first.

 

We think the bug issues is being made worse by the 3-4 generations worth of STUFF in the house - and it's a row home (circa the 19th century), so if the neighbor has bugs, Dad will, too.

[AimeeM]

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.

That's essentially what we told him earlier. He's coming with us. We know he would be devastated going into a residential home, but coming with us is more, I think, fear of the unknown. I don't think he would be devastated long-term with us... once he gets over the hurdle of GETTING there.

 

ETA: He has a toilet and he has access to one. It appears that he believes urinating in a cup seems less permanent than using a portable potty - which he has around her somewhere. He is absolutely convinced that he will get better and back up - upstairs to his room and the "real" toilet, back to his music shop and lessons, etc. 

 

Also, I'm pretty sure that as with the bed bug incident years ago, the row home next door is significantly contributing to the bug issue. The multiple generations worth of clutter is making it darn near impossible to get rid of any of the issues, though. After he's home with us, we plan to hire someone to come in, de-clutter (if we can find a reputable company to do that?), rip out the carpet, bomb the place... and, if after the summer he really IS feeling better (okay, we know that isn't going to happen, but if...), he can come back - and we'll personally oversee the hiring of more than just "a lady who he pays to clean."

Edited May 31, 2016 by AimeeM

[zoobie]

That's essentially what we told him earlier. He's coming with us. We know he would be devastated going into a residential home, but coming with us is more, I think, fear of the unknown. I don't think he would be devastated long-term with us... once he gets over the hurdle of GETTING there.

If he hasn't left his house in 30 years, he has crippling agoraphobia. It's not a semi-rational hesitancy and worry about the unknown. You need to consult with doctors (physical and psychiatric), but you can't leave him there.

[AimeeM]

If he hasn't left his house in 30 years, he has crippling agoraphobia. It's not a semi-rational hesitancy and worry about the unknown. You need to consult with doctors (physical and psychiatric), but you can't leave him there.

I agree with you - but forcing him to a hospital, to have those evaluations, would cripple him. He has medical doctors who come to him at his house, and are coming this week, so I would assume we could ask him if he could bring in a psychiatrist?

His PCP (home-based) is aware of his problems traveling and has still suggested he come with us - all of his healthcare workers have. 

 

To clarify a bit, I think his fear is more riding in cars than anything. He's definitely a homebody and I was under the impression that he hadn't left his house in recent years, but it's my understanding (now, after talking to DH), that he used to walk to church, the shoe store, the regular store, etc - when this was still Little Italy and everything was within walking distance, before it was gang-bang central. Apparently he also went to his friend's house a few weeks ago (by car - his friend came to get him).

 

I've learned a bit more this evening/today, than I had known before. 

Edited May 31, 2016 by AimeeM

[LucyStoner]

I'm not sure you are quite understanding what I mean by residential hospice. My mom was in an amazing non-profit one, and a family member or two slept there with her every night. I was there all but a few nights (I was nursing a 5 month old at the time). We made some truly precious memories while she was there and she could be far more comfortable. It actually shifted the dynamic and allowed her to regain a bit of her dignity. She was mortified that at home she needed help toileting from her SIL at times, among other things. Needing my help was bad enough for her but my husband helping her, though he didn't mind doing it, was really a sensitive issue for her. Having professionals to help her FT while we focused on taking care of needs beyond the physical was a blessing for us all. The rooms were private and extremely cozy. Like a B&B with room for medical equipment. She could spend time in a garden and there were art and music therapists circulating. At home, she could no longer leave due to the stairs in our townhome.

 

It wasn't "doing" anything to her but allowing her to have time to talk to us rather than us stressing over all the stuff the nursing staff needed to. We'd been planning on doing an video interview for a full year. But years and years of cancer caregiving meant we didn't have the time or energy. As soon we were in hospice with her, we had a fantastic video session with her that will keep her personality, humor and loving nature alive and real for her too young to remember her grandchildren. About a week before she died she asked to watch one of her old favorite TV shows. I got the whole thing on DVD and we watched the whole thing, chatting and laughing all the while.

 

When she died, the staff was beyond amazing and presented us with a homemade quilt to cover her with when we were ready. We sat there for hours before we were ready to transfer her body.

 

Those hospice workers, from the medical staff to the volunteers to the social worker and chaplain, were all amazing and it's a shame that the term hospice is now associated with some dicey for profit end of life care places.

Edited May 31, 2016 by LucyStoner

[AimeeM]

Oh! You're right, I didn't understand. That sounds very nice, actually, being able to stay there with your mom!

 

Unfortunately, I'm not sure how that would work until Dad was sincerely end of life. We are the only family in the state where we would taking him - so it would be entirely on me and DH (and only me, with noone to keep the children, when DH is out of the state/country for work).

 

ETA: I never ever meant to imply that I thought hospice residentials were dicey. I actually don't think that at all. When I said that we couldn't/wouldn't do that to FIL, it was only meant for the individual - him, FIL/Dad. He would decline so rapidly being moved to someplace to be taken care of by non-family members - because that's just him, no matter how lovely the place (and I know many are amazing places).

 

I'm not sure you are quite understanding what I mean by residential hospice. My mom was in an amazing non-profit one, and a family member or two slept there with her every night. I was there all but a few nights (I was nursing a 5 month old at the time). We made some truly precious memories while she was there and she could be far more comfortable. It actually shifted the dynamic and allowed her to regain a bit of her dignity. She was mortified that at home she needed help toileting from her SIL at times, among other things. Needing my help was bad enough for her but my husband helping her, though he didn't mind doing it, was really a sensitive issue for her. Having professionals to help her FT while we focused on taking care of needs beyond the physical was a blessing for us all.

It wasn't "doing" anything to her but allowing her to have time to talk to us rather than us stressing over all the stuff the nursing staff needed to. We'd been planning on doing an video interview for a full year. But years and years of cancer caregiving meant we didn't have the time or energy. As soon we were in hospice with her, we had a fantastic video session with her that will keep her personality, humor and loving nature alive and real for her too young to remember her grandchildren. About a week before she died she asked to watch one of her old favorite TV shows. I got the whole thing on DVD and we watched the whole thing, chatting and laughing all the while.

When she died, the staff was beyond amazing and presented us with a homemade quilt to cover her with when we were ready. We sat there for hours before we were ready to transfer her body.

Those hospice workers, from the medical staff to the volunteers to the social worker and chaplain, we're all amazing and it's a shame that the term hospice is now associated with some dicey for profit end of life care places,

 

Edited May 31, 2016 by AimeeM

[G5052]

I'm sorry that you're going through this. I'm the go-to eldercare person on both sides of the family, and it's utter agony every time.

 

You have to step in here. Period. Human beings need to be well-taken care of in their final years. Their emotions get the best of them, and they don't want to leave the familiar. It was interesting to me that both of my parents pre-wrote their obituary to say that they died at home. And yet neither did.

 

Think though how you'd feel if you found out that he wasn't taken care of in those last days and suffered horribly in ways that could have been prevented. You have to pull out the stops to try to make him comfortable.

 

I lost an uncle last summer that I still regret not keeping better tabs on. He had a bad stroke but recovered. I called him here-and-there, but he seemed OK. Then I was contacted by an unscrupulous lawyer wanting the probate case because my uncle had died two weeks before, alone in the ICU of complications of cancer that had only just been diagnosed. He was in the hospital morgue, and they thought he had no living relatives. I still feel horrible though. I would have gone out there to take care of him in a heartbeat.

 

For both of my parents I had to take very strong stands at the end against other relatives in order to ensure that they were comfortable.

 

Sorry to get on my soapbox, but I think you have to take a stand here.

Edited May 31, 2016 by G5052

[AimeeM]

I'm sorry you had to go through that with your uncle :(

 

This will take a huge weight off DH's shoulders. He's incredibly close to his father. Despite the distance, they speak at least once daily. When we can't get a hold of him, we've been known to call the local PD to an adult check (which they do happily - so kind of them!).

I would think, considering how crazy we get, from so far away, that FIL will eventually be relieved that we are no longer having cops show up at his door just to find out that his phone wasn't cradled correctly :)

I'm sorry that you're going through this. I'm the go-to eldercare person on both sides of the family, and it's utter agony every time.

 

You have to step in here. Period. Human beings need to be well-taken care of in their final years. Their emotions get the best of them, and they don't want to leave the familiar. It was interesting to me that both of my parents pre-wrote their obituary to say that they died at home. And yet neither did.

 

Think though how you'd feel if you found out that he wasn't taken care of in those last days and suffered horribly in ways that could have been prevented. You have to pull out the stops to try to make him comfortable.

 

I lost an uncle last summer that I still regret not keeping better tabs on. He had a bad stroke but recovered. I called him here-and-there, but he seemed OK. Then I was contacted by an unscrupulous lawyer wanting the probate case because my uncle had died two weeks before, alone in the ICU of complications of cancer that had only just been diagnosed. He was in the hospital morgue, and they thought he had no living relatives. I still feel horrible though. I would have gone out there to take care of him in a heartbeat.

 

For both of my parents I had to take very strong stands at the end against other relatives in order to ensure that they were comfortable.

 

Sorry to get on my soapbox, but I think you have to take a stand here.

 

[lauraw4321]

You're doing the right thing. You have to step in. This is the only workable solution, it seems. You should definitely consider hiring help.  :grouphug:

[Tree Frog]

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.

We found with my MIL she was able to hold things together when people visited. It wasn't until we stayed for a longer period of time that we realized how bad things were. They may have been seeing what your FIL wanted them to see.

[lmrich]

Has a social worker been involved in this at all? I do not know if that is even the right person to talk to about it. 

 

It is time to make a change. Either the house needs to be redone and a lift added, or he needs to move - or both. It is possilbe for him to live with your for a few months while his house is readied. But I think it is best for him to move and stay with you. I also think you are amazing.

[brehon]

First, hugs to you. This is never easy. Never. Trying to figure out and do what is best for a person who is legally competent, but realistically just isn't able to live on their own and manage their affairs just isn't for the faint of heart.

 

Second, how in the hell has his living conditions NOT already been reported to his state's version of APS? He's had at least one, if not more, health care workers (aka mandated reporters) in that house. And a maid?! What the hell has this person been doing?

 

Who would be taking on of the bulk of his care at your house? Hospice? Will he let them? You already have an overly full plate right now. FT elder care is beyond difficult. Also, if his neighborhood is as bad as you've said, what are the odds the house will be burgled while he's in SC?

 

It's not that I don't think taking him into your home is a bad idea. On the contrary, it's a wonderful and loving act. I just want you to be as prepared as you can be. Is there any way to start the cleaning process on his house - pest control, carpets, that sort of thing?

[AimeeM]

Has a social worker been involved in this at all? I do not know if that is even the right person to talk to about it. 

 

It is time to make a change. Either the house needs to be redone and a lift added, or he needs to move - or both. It is possilbe for him to live with your for a few months while his house is readied. But I think it is best for him to move and stay with you. I also think you are amazing.

We're phrasing it to him as that he's coming to stay for the summer. And we DO plan to have someone come in to re-lift the house and bomb it (although, if the bugs are a problem in the neighboring row home, it won't do much to just bomb Dad's). If he still wants to move home after summer AND he agrees to around the clock care, we'd be okay with that (and I promised him I would drive him home personally).

[AimeeM]

First, hugs to you. This is never easy. Never. Trying to figure out and do what is best for a person who is legally competent, but realistically just isn't able to live on their own and manage their affairs just isn't for the faint of heart.

 

Second, how in the hell has his living conditions NOT already been reported to his state's version of APS? He's had at least one, if not more, health care workers (aka mandated reporters) in that house. And a maid?! What the hell has this person been doing?

 

Who would be taking on of the bulk of his care at your house? Hospice? Will he let them? You already have an overly full plate right now. FT elder care is beyond difficult. Also, if his neighborhood is as bad as you've said, what are the odds the house will be burgled while he's in SC?

 

It's not that I don't think taking him into your home is a bad idea. On the contrary, it's a wonderful and loving act. I just want you to be as prepared as you can be. Is there any way to start the cleaning process on his house - pest control, carpets, that sort of thing?

I would be taking care of him - WITH significant help. We will definitely hire help. If he doesn't want outsiders helping him, I may just hire an everyday helper for Marco (my aunt has already offered), to free up some time to help Dad. 

 

I just found out tonight that he hasn't had a nurse visit in three freakin' weeks. I have no clue what's going on, but I'm calling hospice tomorrow morning. I know that his regular nurse quit the company, so maybe they didn't have a replacement - but three WEEKS? Nobody has said anything because nobody has been here (well, nobody medical). His old nurse used to keep in touch with DH.

[monstermama]

My gram's PCP was able to prescribe the anxiety/depression meds (this was in PA, not sure if things are different in other states).  Has his current PCP been seeing him for a while?  Gram was able to hold it together for doc appointments and it wasn't until I started talking frankly with her doctor that he realized how bad she'd gotten.  She'd always called herself a worrywart and the life events that led to her moving in with me just made it worse.

 

Can you take certain familiar pieces of furniture with you when you move him (renting a U-Haul trailer, maybe)?  It was a big comfort for my gram to have the same bed, dresser, TV stand, art etc in her new room.  With the condition of the house, currently, though, I'm not sure if that's an option.

[Tree Frog]

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.

 

We had to do something similar for MIL because she wouldn't move near any family. She felt if she moved near one of us, she would be a burden. We explained that it was the other way around; she was a burden because she didn't live near us and we couldn't help her if something happened. She agreed to move when we arrived for a Christmas visit and discovered one of the other residents in the independent living apartments she lived in had passed away several days prior. No one knew until his body began to smell. No one wanted that to happen to her, but it was a real possibility.

 

As far as the bolded, MIL moved into an assisted living facility eventually. She, too, didn't want any pain meds other than Tylenol, though she had significant pain. She didn't want a bedside commode until the distance to the bathroom was too far (and even then, she still didn't want it!) However, she had round the clock care if she needed it. I spent all day with her 7 days a week and was very involved in her care. There was a lot required and honestly, it was helpful to have other people point things out to her that we noticed needed changing. Her hospice nurse, her caregivers, and her med techs all encouraged her to try the pain meds, to try the lift chair, to visit with her. There was a lot of care required, especially towards the end when we made decisions she felt she couldn't make. When you move FIL to your home, be sure to arrange for breaks for you before you arrive home. Don't burn out. I was very close to burning out several times and she didn't live with us. DH and I talked about the difficulty we would have had if MIL had lived with us, which was an option she didn't want. We wouldn't have been able to leave the house, have discussions without her input, would have had to completely change the menu (MIL was gluten free). MIL was very fortunate to die peacefully, but some people have great struggles as they die.

 

Regarding hospice, we were told that every 3 months the hospice company has to reassess the patient's condition. MIL was on hospice for a total of 7 months before passing away. FIL was on hospice for 12 months. So even though someone is on hospice, it doesn't mean they only have a few months to live.

 

AimeeM, good luck moving your FIL. The move will be difficult, but hopefully it will be as rewarding for him and your family as it was for ours.

[Reefgazer]

You're absolutely doing the right thing, and I sympathize with you. If you haven't noticed, I've been off the boards for 2 to 3 weeks. That's because I have had a very, very similar situation to what you are now facing to deal with and it has taken a ton of money and all my effort to do it . You're doing the right thing. Pack him up and move him out get himthe medical care he needs. Expect that he may be very angry with you or depressed for a while, but you do what you have to do.

 

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 31, 2016 by reefgazer

[brehon]

I would be taking care of him - WITH significant help. We will definitely hire help. If he doesn't want outsiders helping him, I may just hire an everyday helper for Marco (my aunt has already offered), to free up some time to help Dad.

 

I just found out tonight that he hasn't had a nurse visit in three freakin' weeks. I have no clue what's going on, but I'm calling hospice tomorrow morning. I know that his regular nurse quit the company, so maybe they didn't have a replacement - but three WEEKS? Nobody has said anything because nobody has been here (well, nobody medical). His old nurse used to keep in touch with DH.

Please don't underestimate how difficult it is to care for an elderly person - physically, emotionally, and every other way. It is incredibly easy for the primary caregiver to have significant burn-out, especially when also parenting young (and in your case) medically challenging children. Again, I don't want to be Ms Debby Downer; I have [ETA: personal and professional] experience with this, though.

 

And WTH?? Three weeks?!? That's absolutely inexcusable. I'm outraged on your family's behalf. I'd plant my steel toed work boots in someone's rear end, if I found out that had happened to one of my family members. Ugh!!

 

You mentioned asking the nurse if she would recommend that your FIL's PCP would come out. Did I understand that correctly? If so, I think I'd just tell her that FIL/you need a consult prior to moving. Is this PCP *fully* apprised of your FIL's resistance to leaving his house? And that he hadn't been taking prescribed heart medication because he didn't understand that he needed to? And his recent living conditions? In other words, how well does the PCP know what's been happening or not with your FIL over the past several weeks to months?

 

Personally, I would request a mild sedative or an anti-anxiety medication for trip home. Erm, for your FIL, not you, LOL.

Edited May 31, 2016 by brehon

[Tree Frog]

I'm not sure you are quite understanding what I mean by residential hospice. My mom was in an amazing non-profit one, and a family member or two slept there with her every night. I was there all but a few nights (I was nursing a 5 month old at the time). We made some truly precious memories while she was there and she could be far more comfortable. It actually shifted the dynamic and allowed her to regain a bit of her dignity. She was mortified that at home she needed help toileting from her SIL at times, among other things. Needing my help was bad enough for her but my husband helping her, though he didn't mind doing it, was really a sensitive issue for her. Having professionals to help her FT while we focused on taking care of needs beyond the physical was a blessing for us all. The rooms were private and extremely cozy. Like a B&B with room for medical equipment. She could spend time in a garden and there were art and music therapists circulating. At home, she could no longer leave due to the stairs in our townhome.

 

It wasn't "doing" anything to her but allowing her to have time to talk to us rather than us stressing over all the stuff the nursing staff needed to. We'd been planning on doing an video interview for a full year. But years and years of cancer caregiving meant we didn't have the time or energy. As soon we were in hospice with her, we had a fantastic video session with her that will keep her personality, humor and loving nature alive and real for her too young to remember her grandchildren. About a week before she died she asked to watch one of her old favorite TV shows. I got the whole thing on DVD and we watched the whole thing, chatting and laughing all the while.

 

When she died, the staff was beyond amazing and presented us with a homemade quilt to cover her with when we were ready. We sat there for hours before we were ready to transfer her body.

 

Those hospice workers, from the medical staff to the volunteers to the social worker and chaplain, were all amazing and it's a shame that the term hospice is now associated with some dicey for profit end of life care places.

 

I completely agree with this, especially the first paragraph. Katie, you very eloquently stated our dynamic here with our MIL. Thank you for putting it into words for me.

[AimeeM]

My gram's PCP was able to prescribe the anxiety/depression meds (this was in PA, not sure if things are different in other states).  Has his current PCP been seeing him for a while?  Gram was able to hold it together for doc appointments and it wasn't until I started talking frankly with her doctor that he realized how bad she'd gotten.  She'd always called herself a worrywart and the life events that led to her moving in with me just made it worse.

 

Can you take certain familiar pieces of furniture with you when you move him (renting a U-Haul trailer, maybe)?  It was a big comfort for my gram to have the same bed, dresser, TV stand, art etc in her new room.  With the condition of the house, currently, though, I'm not sure if that's an option.

I believe he already has a prescription for ativan (sp?) that he doesn't use. It would make the trip easier.

 

I can't take his furniture now. We need to bomb the house first, after he leaves with us, then we can get word to a couple of friends to maybe ship his bedroom furniture.

[AimeeM]

Oh, I know it'll be hard. I anticipate needing help (a lot of help). I plan on getting on that asap (as in, I've already made a list of hospices local to us, one with the local Catholic hospital - which Dad will like) and my aunt has offered to come in and help with The Marvelous Flying Marco. We will hire more if we need it. I'm not afraid to ask for help.

 

I'm outraged. I had no clue that nobody had been out - and he's been feeling "sick" as well (vague "sick" all over, weak, etc).

 

He has a prescription for a sedative, I believe. 

 

The man who found him clutching his chest outside his music shop over a year ago is the same lawyer who drew up Dad's will. His office is across the street. I'm going to venture out tomorrow and make sure that we're okay legally. Technically, we have complete medical power of attorney and since all of his healthcare workers have stated it's best for him to stay with us, I can't imagine having a problem with it.

 

I have no clue what his PCP is or isn't apprised of right now. Heck, we didn't even know he hadn't been seen in weeks, hadn't been taking his medication, and I just - minutes ago - found out that one woman he'd had cleaning for him stole from him (he fired her, but still). I'm just not comfortable with us unable to oversee his care. 

 

I don't think his PCP has any clue what's going immediately, since there has been nobody around in weeks.

Please don't underestimate how difficult it is to care for an elderly person - physically, emotionally, and every other way. It is incredibly easy for the primary caregiver to have significant burn-out, especially when also parenting young (and in your case) medically challenging children. Again, I don't want to be Ms Debby Downer; I have [ETA: personal and professional] experience with this, though.

And WTH?? Three weeks?!? That's absolutely inexcusable. I'm outraged on your family's behalf. I'd plant my steel toed work boots in someone's rear end, if I found out that had happened to one of my family members. Ugh!!

You mentioned asking the nurse if she would recommend that your FIL's PCP would come out. Did I understand that correctly? If so, I think I'd just tell her that FIL/you need a consult prior to moving. Is this PCP *fully* apprised of your FIL's resistance to leaving his house? And that he hadn't been taking prescribed heart medication because he didn't understand that he needed to? And his recent living conditions? In other words, how well does the PCP know what's been happening or not with your FIL over the past several weeks to months?

Personally, I would request a mild sedative or an anti-anxiety medication for trip home. Erm, for your FIL, not you, LOL.

 

[Tsuga]

You are doing the right thing, which is caring, and doing your best. Hugs to you all.

[Laura Corin]

Best wishes to you.  We 'scooped' my mum up from her house (it had become a danger to her 80yo neighbour) and brought her home in January.  It's been hard in all kinds of ways (our house is not easy to divide) but we are getting there.

[SarahB82]

You are doing the right thing.  

I hate his hospice nurse hasn't been out.  The only thing that would make sense is that he has refused her visits. I am a home health nurse and a lot of times families will set up our service and the patient will let us come out and do the admission but when it comes time for the visits the patients tell us they don't want us to come.  If the nurse has just been neglecting to come please follow up on making sure it gets reported to the hospice company, and if you have no satisfaction from them continue to your state/medicare.

[G5052]

You are doing the right thing.  

I hate his hospice nurse hasn't been out.  The only thing that would make sense is that he has refused her visits. I am a home health nurse and a lot of times families will set up our service and the patient will let us come out and do the admission but when it comes time for the visits the patients tell us they don't want us to come.  If the nurse has just been neglecting to come please follow up on making sure it gets reported to the hospice company, and if you have no satisfaction from them continue to your state/medicare.

 

That was my thought. Or there was some issue with payment, or he became so combative during a visit that they refused further visits.

Edited May 31, 2016 by G5052

[TammyS]

I would be taking care of him - WITH significant help. We will definitely hire help. If he doesn't want outsiders helping him, I may just hire an everyday helper for Marco (my aunt has already offered), to free up some time to help Dad. 

 

I just found out tonight that he hasn't had a nurse visit in three freakin' weeks. I have no clue what's going on, but I'm calling hospice tomorrow morning. I know that his regular nurse quit the company, so maybe they didn't have a replacement - but three WEEKS? Nobody has said anything because nobody has been here (well, nobody medical). His old nurse used to keep in touch with DH.

 

Given his living conditions, don't be surprised if you find out that he fired the nurse and refused to allow anyone new to come.  There is a level of shame involved in a house that filthy and elders, sweet as they can be, will LIE to protect what they perceive to be their dignity and safety (from being reported).  Don't be surprised if you find out he's lying to you and don't take it personally.  It's just part of the deal.  You can't rely on them for your information.

[Catherine]

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.

 

If there is going to be a big stumbling block for you, it's this.  I do think that he capability to actually summon the police and stop you might be limited, but if he is mentally competent (to "has capacity" in medical lingo-and it sounds like he is from your description), forcing him to go with you might prove extremely difficult.  So I think using the relationship tools that you have at your disposal is wise, like enlisting his help.  Can you frame it as a temporary visit?  

 

I also think that some deception may be needed, difficult as that is.  He sounds anxious and depressed, and it's quite possible that if he'd agree to any treatment for those issues, he would be more cooperative and sensible, but antidepressants take time to work.  Fortunately, anti-anxiety meds, I'm thinking valium, work immediately, and if he'd be willing, a small dose for a few days might make the transition less upsetting for him.  

 

I would caution you though, that if he's medicated the risks of a fall are much higher-someone would have to very closely supervise him to prevent this.  But it might be preferable to an ugly scene or kidnapping-style move.  It would ease his distress.  

[Valley Girl]

I would be taking care of him - WITH significant help. We will definitely hire help. If he doesn't want outsiders helping him, I may just hire an everyday helper for Marco (my aunt has already offered), to free up some time to help Dad. 

 

I just found out tonight that he hasn't had a nurse visit in three freakin' weeks. I have no clue what's going on, but I'm calling hospice tomorrow morning. I know that his regular nurse quit the company, so maybe they didn't have a replacement - but three WEEKS? Nobody has said anything because nobody has been here (well, nobody medical). His old nurse used to keep in touch with DH.

 

What the heck? How does hospice just not send somebody to a critically ill patient and never tell the family? That's downright negligent on their part and should be reported. If they did that to your FIL, they're doing it to other patients as well. Good grief!

 

[AimeeM]

That was my thought. Or there was some issue with payment, or he became so combative during a visit that they refused further visits.

No, I think perhaps I wasn't clear. His nurse quit the agency in general (family emergency) and they haven't sent another out. They've made appointments, but nobody has shown up in weeks.

[Valley Girl]

You are doing the right thing.  

I hate his hospice nurse hasn't been out.  The only thing that would make sense is that he has refused her visits. I am a home health nurse and a lot of times families will set up our service and the patient will let us come out and do the admission but when it comes time for the visits the patients tell us they don't want us to come.  If the nurse has just been neglecting to come please follow up on making sure it gets reported to the hospice company, and if you have no satisfaction from them continue to your state/medicare.

 

I understand that the nurse couldn't force care. But if the patient is refusing access, the hospice should have reported that immediately to the family. Failing to do that is still negligence on the part of the hospice I would think.

[AimeeM]

Given his living conditions, don't be surprised if you find out that he fired the nurse and refused to allow anyone new to come.  There is a level of shame involved in a house that filthy and elders, sweet as they can be, will LIE to protect what they perceive to be their dignity and safety (from being reported).  Don't be surprised if you find out he's lying to you and don't take it personally.  It's just part of the deal.  You can't rely on them for your information.

His nurse quit the hospice agency entirely. 

[TammyS]

His nurse quit the hospice agency entirely. 

 

I worked for a nursing staffing agency.  That would have nothing to do with him not getting a nurse.  If she quit, someone else would be immediately assigned.

 

There is more going on than you know.

[Joules]

Please don't underestimate how difficult it is to care for an elderly person - physically, emotionally, and every other way. It is incredibly easy for the primary caregiver to have significant burn-out, especially when also parenting young (and in your case) medically challenging children. Again, I don't want to be Ms Debby Downer; I have [ETA: personal and professional] experience with this, though.

 

 

I want to second this strongly.  Yes, you can get someone else to watch after your children, but after a few years you realize how much of your child's life you missed doing elder care.  This is particularly true with older kids.  They learn to be self-sufficient, and the elder needs more and more each day, so the squeaky wheel...  I don't think it's bad for children to see you care for the elderly, but it is so easy to slip into almost nothing but elder care. 

 

Get help from the start that FIL can get used to (maid, mom's helper, etc.) Rather you think it will happen or not, things will get a little harder each day and you will adapt.  It will take a little more time away from the kids, and you will adapt.  It happens gradually, and you think I can handle this one more thing.  You will think that it's not so bad, and you don't need help yet.  One day you wake up and your kid is graduating and somehow you've made sure they've schooled the past four years, but you have missed so much.  

 

So go ahead and hire services for everything you do at home NOW.  If somehow you find yourself bored with too much time on your hands (LOL), you can let them go after a few months.

 

Personally, I would request a mild sedative or an anti-anxiety medication for trip home. Erm, for your FIL, not you, LOL.

 

 

With that kind of anxiety, I would say that it would almost be cruel to have him make that road trip without something like ativan.  His doctor should give you enough to make the trip and then you can see if he still needs something when he sees his new doctor.  If it helps with selling it to FIL, ativan (or its relatives) are great for car sickness.  (ETA: Even something like Benadryl or Dramamine, if the doctor approves, can help with the anxiety in a car ride, if you don't want to go the Rx route.)

 

ETA: Didn't mean to sound so intense in my answer.  You are doing the right thing to find a safe solution for your FIL.  Coming from personal experience, I just wanted to make sure that you care for you and your family in the process.

Edited May 31, 2016 by Joules

[katilac]

OP, thanks for clarifying some things. A bug infestation is different from simple dirt. 

 

I would really urge you to call the local council on aging today (might have a different name). Some of them are excellent, and have much experience navigating these situations. It's always good to get advice from the experts - and of course you don't have to take their advice, but another perspective might be helpful.

 

He should also have a social worker available to him via hospice.  

[Junie]

Lots of great discussion on this thread.

 

It sounds like your FIL is close to a lot of people nearby, both older friends and young students.  If you are planning to take him to S.C. without a plan to come back, I think that he needs a chance to say goodbye.  I don't know "how", but it sounds like it might be important for him.

 

I had a great-aunt live in my home when I was a child.  She couldn't take care of herself and the neighborhood (suburb of D.C.) was getting rough.  After she came to live with us, we went back probably every 6 months/1 year so that she could go to her church and visit with her friends.

 

 

 

ETA: :grouphug:  :grouphug:  :grouphug:

Edited May 31, 2016 by Junie

[AimeeM]

We told him that he could come back after the summer assuming the following is true:

1) The house has been bombed and decluttered

2) He's feeling stable

3) He agrees to in-home care (not just a nurse, either; a nurse, housekeeping, company, etc)

 

We have told everyone he's close to with one exception and I'm calling her tonight. I'm also going to talk to his lawyer (who has an office across the street, so that's easy).

 

Before we leave his state, I want to call the hospice local to us, see what paperwork needs to be done regarding his insurance (no clue there), put a couple calls in to have a stairlift put in, find him some nice soft bedding and try to make his room as much "home" for him as we can. I'll see if he wants any of his favorite instruments to come with him - we have a large Italian population in our subdivision and at least one music teacher, so it's likely he'll find some people to "jam" with (something he's still very fond of). He might even find some other accordion players :)

Lots of great discussion on this thread.

 

It sounds like your FIL is close to a lot of people nearby, both older friends and young students.  If you are planning to take him to S.C. without a plan to come back, I think that he needs a chance to say goodbye.  I don't know "how", but it sounds like it might be important for him.

 

I had a great-aunt live in my home when I was a child.  She couldn't take care of herself and the neighborhood (suburb of D.C.) was getting rough.  After she came to live with us, we went back probably every 6 months/1 year so that she could go to her church and visit with her friends.

 

 

 

ETA: :grouphug:  :grouphug:  :grouphug:

 

Edited May 31, 2016 by AimeeM

[AimeeM]

I worked for a nursing staffing agency.  That would have nothing to do with him not getting a nurse.  If she quit, someone else would be immediately assigned.

 

There is more going on than you know.

I called the hospice. After giving them the necessary information, they told me the nurse assigned to him and stated that yes, it does appear he is still supposed to (according to his files) he should still have someone coming out weekly. I told her nobody has been here in weeks and she said she'd have his caseworker call me.

 

If something had happened, I would have assumed that we would have been called, no? We (both DH and I) have medical power of attorney and have received calls from his nurse before regarding his health. If something had happened, we should have been called. As it is, though, his file says he should still be receiving the weekly visits.

[TammyS]

I called the hospice. After giving them the necessary information, they told me the nurse assigned to him and stated that yes, it does appear he is still supposed to (according to his files) he should still have someone coming out weekly. I told her nobody has been here in weeks and she said she'd have his caseworker call me.

 

If something had happened, I would have assumed that we would have been called, no? We (both DH and I) have medical power of attorney and have received calls from his nurse before regarding his health. If something had happened, we should have been called. As it is, though, his file says he should still be receiving the weekly visits.

 

Either someone at the hospice is incompetent, or some nurse has been lying about her visits (not common, but can happen) and doing something else with the time instead.

 

Ask FIL if he has ever met the nurse assigned to him (his replacement nurse, I'm assuming).  That might tell you something.

[hornblower]

What I don't get is that for a person in his condition a weekly visit seems terribly inadequate.

If for whatever reason you can't take him home this weekend, I'd suggest insisting he has a daily health visitor. 

 

My living at home alone MIL who is still  very with it (able to walk and take a taxi places on her own) has a nurse coming 2 x day (morning and evening) and when she was immediately post surgery she had an additional late afternoon nurse. Each visit is 30 min & they assist with any bathing, dressing, personal care, make sure she's eating & make sure meds are being taken.  

 

[Catherine]

What I don't get is that for a person in his condition a weekly visit seems terribly inadequate.

If for whatever reason you can't take him home this weekend, I'd suggest insisting he has a daily health visitor. 

 

 

My living at home alone MIL who is still  very with it (able to walk and take a taxi places on her own) has a nurse coming 2 x day (morning and evening) and when she was immediately post surgery she had an additional late afternoon nurse. Each visit is 30 min & they assist with any bathing, dressing, personal care, make sure she's eating & make sure meds are being taken.  

 

 

I could always be mistaken, but it's more likely that what your MIL has is a home health aid, not a nurse.  Nurses don't do the kind of work you describe, and insurance companies most certainly don't pay for that.  Even the very best cadillac plans don't.  

 

Thank goodness for the welfare state.  My parents in NY state get a HHA for 4 hours weekly, for EACH of them, paid for by the state.  It's a program to keep the poor elderly out of nursing homes.  This woman walks on water as far as I'm concerned.  

[6packofun]

I have not read the whole thread, but I DO think you're doing the right thing!  I hate to say it but we've seen with family situations ourselves over and over and over again that trying to care for a loved one long-distance with unknown caretakers is nearly impossible.  Family has been taken advantage of in nearly every case.  :(  God bless you for being willing to do this because it may save his life and, less importantly but still important, his finances!!

[hornblower]

I could always be mistaken, but it's more likely that what your MIL has is a home health aid, not a nurse.

 

Oh no, I get the distinction. My mom is a retired nurse & our entire family is full of nurses & doctors. Dd is applying for BSN programs. 

 

There is a variety of visitors depending on the level of care required, all the way from care aides, to RNs and social workers. Most of MILs visitors are LPNs - licenced practical nurses. 

 

 

[eternalsummer]

Oh no, I get the distinction. My mom is a retired nurse & our entire family is full of nurses & doctors. Dd is applying for BSN programs. 

 

There is a variety of visitors depending on the level of care required, all the way from care aides, to RNs and social workers. Most of MILs visitors are LPNs - licenced practical nurses. 

 

 

 

I don't think this is part of hospice care (at least, free hospice care, paid for by Medicaid) in the US, though.

 

When my dad was really dying-dying, like 3 weeks left, they came every day to check on his medical situation, but there was no provision for anything like bathing or etc.  That was left to the family to do themselves or hire out.

 

I think if he had gone to stay in a hospice facility they would have provided it there, though.

[lmrich]

Three weeks without a nurse! That seals the deal there, if the little help he has is not coming, you have no choice. Big hugs for a tough week ahead. 

[Tree Frog]

We told him that he could come back after the summer assuming the following is true:

1) The house has been bombed and decluttered

2) He's feeling stable

3) He agrees to in-home care (not just a nurse, either; a nurse, housekeeping, company, etc)

 

We have told everyone he's close to with one exception and I'm calling her tonight. I'm also going to talk to his lawyer (who has an office across the street, so that's easy).

 

Before we leave his state, I want to call the hospice local to us, see what paperwork needs to be done regarding his insurance (no clue there), put a couple calls in to have a stairlift put in, find him some nice soft bedding and try to make his room as much "home" for him as we can. I'll see if he wants any of his favorite instruments to come with him - we have a large Italian population in our subdivision and at least one music teacher, so it's likely he'll find some people to "jam" with (something he's still very fond of). He might even find some other accordion players :)

 

May I suggest setting up his bedroom before he arrives with items that would be helpful to him but he might refuse, even if temporary? If those items are already in place, they are a part of the new normal. He doesn't have to use them, but if he needs them, they're avaliable. We found a hospital bed very helpful when we needed to change diapers or roll MIL over because it could be raised when she needed care and lowered so she could get up if she needed. I would also have a bedside commode available; it might not be needed right away, but if it's part of the "decor" when he arrives, he will be less likely to refuse to use it. If he doesn't already have one, a walker or rollator might be handy. We also had a raised toilet seat for MIL, but I'm not sure it would help with a man because it made the opening to the toilet seem smaller. Also having a way for FIL to call for help if no one is nearby would also be helpful. MIL liked a kid's bike horn for this. 

[AimeeM]

I have to be quick, as Dad isn't taking the news well at all.

 

His nurse HAS been coming. Talked to her a few hours ago. He forgot. I would think that he was lying - but this, combined with the fact that he had stacks of forgotten very important bills (house taxes, etc), leads me to believe that he's becoming forgetful. I mean, my husband just took care of over 6K in "I forgot to send the check, but I wrote the check" bills this morning alone.

His nurse told me that they all adore FIL and it's hard to leave him every visit. He's been lying to them, as some suggested, and it does fit Dad's "MO" - he likes his independence. The nurse had no clue that he wasn't able to make it upstairs (in fact, she relayed that she'd asked him if he could do just that at every visit), had no clue he was peeing in a cup, and that he had declined any further home-care, although it had all been offered. 

She rearranged her regular visit to be here tomorrow, with Dad's social worker, instead of today (because we had taken the children out for a few hours today), so that she could speak with us. Her and the social worker are going to help make Dad comfortable for the trip and, hopefully, walk me through what needs to be done to set him up with home healthcare at our place. 

I'm not sure why we weren't called when he refused further help. I'm leaning more towards a miscommunication due to the nurse change, tough, and not negligence on their part. She seemed to sincerely enjoy Dad - and agrees that he needs to come with us. She said that she would get him whatever medication was needed for him travel safely with us and to last a bit after we arrive home. 

 

Dad yelled at DH over it all. I thought DH was going to cry. I've not seen DH cry more than once or twice in our entire marriage, but I've seen him completely breakdown and sob twice since we've been here. 

I'm trying to do a couple of things. A) take the blame so that, as some suggested, DH and his father can preserve their relationship, banking on his soft spot for me, and B) acknowledge how hard this is for Dad. When DH told me, in front of Dad, that Dad was "angry" about coming with us, I smiled at Dad and replied that I would be pretty darn angry about it, too, if I were in his shoes. Upthread it was suggested that I treat him a bit like a child - and that's what I would do with my children in a similar situation (having to do something that nobody wants to do, and is hard to do, does suck, and sometimes acknowledging those feelings helps). 

 

 

[AimeeM]

May I suggest setting up his bedroom before he arrives with items that would be helpful to him but he might refuse, even if temporary? If those items are already in place, they are a part of the new normal. He doesn't have to use them, but if he needs them, they're avaliable. We found a hospital bed very helpful when we needed to change diapers or roll MIL over because it could be raised when she needed care and lowered so she could get up if she needed. I would also have a bedside commode available; it might not be needed right away, but if it's part of the "decor" when he arrives, he will be less likely to refuse to use it. If he doesn't already have one, a walker or rollator might be handy. We also had a raised toilet seat for MIL, but I'm not sure it would help with a man because it made the opening to the toilet seem smaller. Also having a way for FIL to call for help if no one is nearby would also be helpful. MIL liked a kid's bike horn for this. 

We can't have anything done before he arrives since he's coming home when we do. It's too long a car ride to go back to our home and then come back here that quickly, and there's no way I can travel by plane by myself, without DH, with The Marvelous Flying Marco.

I don't think Dad and DH riding alone together (if, say, me and the children went down before them, and DH rented a car for him and Dad) is a good idea. Dad is pretty darn angry right now. 

 

I think a commode in the room right away is a good idea. He'll probably be staying downstairs in the living room or in our bedroom (whatever his preference is) until we get the stairlift in, though, so hopefully we CAN have his things set up before he actually uses his upstairs bedroom. 

We have no room in our vehicle for more than luggage, but we'll have a family friend (who offered to help) send his favorite instruments - and I'll pack the family photographs and saint statues that seem dearest to him in his luggage for the trip up. 

[lmrich]

FYI - the chair up the stair thing might require a permit. You might want to call the company to find out. 

Are you and DH comfortable moving upstairs for a while?

[AimeeM]

FYI - the chair up the stair thing might require a permit. You might want to call the company to find out. 

Are you and DH comfortable moving upstairs for a while?

We don't mind moving upstairs, but we are concerned that Dad would prefer a "getaway" - and he won't have that downstairs. I can't allow Marco upstairs in the boys' bedroom unsupervised, so the boys play downstairs almost all day - as does the German Shepherd, the chess club I host, etc. It will get loud and the master bedroom on the main level allows for no noise relief - it is literally right off the living room, entrance, etc. We wanted him to have some privacy and quiet (when he wants it) and there will be no quiet to be had on the main level :( 

Edited June 1, 2016 by AimeeM