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Things are going downhill with FIL. It was a hard day.


AimeeM
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I just need an ear. Any advice is, of course, welcome as well.

 

We are visiting FIL for the holidays (out of state for us). He was discharged from the hospital the Monday before last. It appears that while they admitted him for suspected pneumonia, they kept him for so long because of the prostate cancer suspicions (we've known he likely has prostate cancer for some time now)... and a suspicion of bone cancer. He refused further testing while in the hospital (which the patient advocate and nurses supported him in, given his already frail health and age). Despite the overall support for his decision, the doctors seemed to want to push the testing on him, despite admitted that there is very likely little, if anything, that they can do for the cancer(s) without compromising quality of life (as in, the quality of the rest of his life, as the side effects from the proposed treatments would likely make him very ill, IF he even lived through the treatments).

He has wonderful home health care - a physical therapist visits twice a weekly, his nurse visits several times weekly, and the Physician's Assistant once weekly or so. 

Today was a hard day when the PA visited. She gently reinforced to him that it was time to make some decisions regarding ongoing care; that she supported him if he did decide "no more diagnostics", but that her office needed to know because his decision would affect what type of home care he received going forward - were they going to be supporting him while he undergoes diagnostics and possible treatments, or were they going to be providing "comfort" (hospice) type of care.

 

We live 15+ hours away. There is no way my husband can leave his job - in this economy it would be irresponsible; he has a great job with an amazing benefits package - which I know sounds petty, considering, but that benefits package allows us to obtain the very best in medical care for our medically fragile 5 year old who has a handful of medical specialists of his own. 

 

Tony and I discussed it and I would be more than happy to move the children into FIL's for the duration - everyone involved (including myself) would be more comfortable with me caring for him and the house than a stranger, and I would still have the supportive home health care staff (all of whom are aware that this is a possibility) to help with some things. Primarily, though, it would allow FIL to spend the remainder of his time with his grandchildren and would allow him to still teach when he has the energy to do so, without having to worry about *also* cleaning or *also* cooking. Dad seems thrilled with the idea (his house is a large, very old row home, with only one of the four bedrooms being occupied currently - by him), but doesn't want to "split up the family" (i.e. he doesn't want to feel like we're splitting up our family for him) - we've all told him many times that we would be happy to do this and that Tony would come up to visit at least once a money (just fly in and out for the weekend). 

 

Ideally Dad would just move in with us, into our home, and the timing couldn't be better, frankly - we're getting ready to buy a much larger home and several that we've viewed have main level master suites which would be perfect for Dad. He won't come, though, and I understand why - he's lived in this same neighborhood for 70 of his 83 years; he's taught music in this neighborhood for over 60 years; he's owned that little music shop on the corner for 40-some odd years. Many of his students are the grandchildren of his original students. This past week has been student after beloved student coming in and out of the house, bringing him Christmas gifts and/or food, just checking on him, just visiting, etc. Leaving here would kill him (and I do believe that - literally); he grew up in this house, raised his own children in this house.

 

I'm just rambling. I'm sad. I'm angry. Seeing the realization in Dad's eyes today, that this might really be *it*... that what the PA was essentially asking was "are you ready to die?", was just heartbreaking. Watching my husband lose control was heartbreaking. 

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I like your post because you really aren't complaining. You're a loving woman with a sad situation, fortunate to be able to do what you feel is best for your FIL and willing to do for him what he is the most comfortable with and the rest of the family supports and welcomes your self-sacrificing choice. :grouphug:

God bless you.

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I have some selfish motives for wanting to move in, admittedly. While it *would* help Dad, it would help me, too; the man is so full of wonderful stories and I want the children to know those stories; he has such an amazing, fierce faith in God, and such a devotion to Our Lady that he radiates love, and *I* want to witness that for as long as I possibly can.

 

This morning he told me how him and his late wife (DH's mom; she passed when DH was still a child) met, courted, and married. DH's maternal grandparents had moved their family here from Italy and DH's grandfather, one day, asking someone if they could put a spanish song to Italian words with similar verse; the person told DH's grandfather to go see "Tony" (FIL). When DH's grandfather brought the music to FIL, he started squeezing him for personal information, with the intention of "marrying off" his oldest daughter - not MIL (who was younger). One day DH's grandfather stopped by FIL's with FIL's future wife, to pick something up; the two met, fell in love, courted for 5 years or so - until future wife's parents started "putting it to him" and wondering when they were going to marry, lol.

 

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One thing you might want to consider and plan for it is a break/time for you.  Will you have any other support for you if you move to help?  Will you need to line up any specialist for your child?  It is very good that home health will still be there.  It can be very hard being the caregiver to your health both mental and physical especially when you have a medically fragile child. I don't want you to think I am discouraging you from going but just to throw out some thoughts you may have not thought about yet.  Once you get all the details figured out, then go. 

 

 

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I think it's a good idea but don't forget to factor in regular breaks and self care for you if you do go down this route. It's exhausting being the one caring for everyone else particularly when it's probably going to be a very emotional time too.

 

Yes.  My father's final diagnosis was similar and my stepmother cared for him.  His children came in periodically to give her a break for a weekend; she also arranged for respite care at a residential hospice when other options were not available.

 

Best wishes

 

L

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Hugs, I think it's a great idea for you to move in with him for the duration.  It sounds like it would be temporary, and that your DH would still be able to see you all sometimes.  There never is a perfect solution, but I think it's wonderful that you all care so much about him that you want him to be in his home as long as possible. 

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I think it's a good idea but don't forget to factor in regular breaks and self care for you if you do go down this route. It's exhausting being the one caring for everyone else particularly when it's probably going to be a very emotional time too.

 

This is really important, and I'd also caution that you will need good self-care and care for your kids after he passes. Caregivers, esp. LT ones, sometimes find going back to "normal" life after such an experience to be a difficult thing. I think much of that is because of how we live our modern lives, but it can be hard for some people to step back into their previous lives when caregiving is over. (The length of time involved probably has a lot to do with this as well, and it may not apply in your situation.)

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:grouphug:  :grouphug:  :grouphug:,  Aimee.

 

One thing I would consider carefully is how the presence of your children will affect his home life. Are they generally quiet, calm, and helpful? Are they often noisy and rowdy (this describes my kids)? Since your FIL most likely will need a lot of peace and rest, adding children to the home for a long-term visit may not be as comfortable for him as he now thinks it is. If he is an introvert used to living alone, it will be a big adjustment for him. If he is more extroverted, having additional people around when he is not feeling well might not be as big a deal. But I'd carefully consider these things.  If you decide to do this, I would talk things over fairly bluntly with him at the start and give him an easy way to tell you along that way if it is no longer working for him. What starts out as a good plan might not stay that way. I might also make sure that there was a way to get the kids out of the house for a time each day -- maybe schooling at the library??

 

I don't want to throw any kind of damper on your ideas with my questions. I just think that considering these kind of things ahead of time is important.

 

Otherwise, if everyone is in agreement, I think it is a sweet and loving idea. You'll need to go into it knowing that even with nursing help that it won't be easy on you as a primary caretaker of him as well as your children. I had my mom with Alzheimer's living with me for a time, and there were definite challenges that I did not predict (even though my grandmother with Alzheimer's lived with us when I was a teen and I was one of her main caregivers, so I was somewhat experienced). Do you have a full picture of his medical needs and prognosis? Do you have an idea how long a visit this would be? What kind of impact will it have on your children to watch his health failing? Will you need to register your children as homeschoolers is his state? If so, do you know what the guidelines there are? There is a lot to consider.

 

I'm sure you will make a good choice. And I'm glad you got to see him over the holidays. I remember that you were worried you might not be able to, due to his health.

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what a loving thing to do for your FIL.  Not everyone is able to do such a thing, for one reason or another...what a blessing to your kids and to your FIL this will be. 

 

I'm sure the road ahead will be hard.  As someone said upthread... end of life decisions are gut-wrenching because they're not always so clear-cut.

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He actually loves the idea of me and the kids coming to stay - even after spending almost two weeks with the Flying Marvelous Marco, lol. He hates living alone - until 10 years ago, when his mother died (DH's grandmother), he never had (lived alone); in his 83 years it was him and his parents, then him, his wife, and his parents, then him, his wife and DH, and his parents; when his wife died, it was still him, DH, DH's baby brother, and his parents. His quality of life (or, rather, the state of his living situation) has went downhill pretty drastically - I think he doesn't feel the need to have the house kept up when it's "only him" in the house.

 

He thrives on the noise of children and visitors. Despite his fear of leaving his block (his home, his music shop), he actually NOT an introvert at all - he loves having people around and his students and extended family love to give him that. While we were visiting for the holidays, he had no less than two visitors a day - bringing him gifts, just stopping to chat, bringing him home cooked meals, etc... and that's typical, not just when he's ill. 

 

Right now we're back at our home. DH has medical power of attorney and Dad M's doctor and home care nurses are keeping DH up to date via the phone (and me, since Dad gave them permission to speak to me about his medical/emotional status over the phone). When we left, Dad's ability to get around the house on his own had improved drastically, although his medical state hadn't improved much. Right now he has nurses coming several times a week, the Physician's Assistant once a week, and his physical therapist once a week. If we hear that he's again unable to dress himself or is losing weight, we will decide what to do.

 

Our primary concern about me and the children moving in is that there would HAVE to be some major changes in the house. Like I said - the state of the house has declined drastically since Dad M's mother passed away, and right now it isn't sanitary or safe for the children. For example, he insists on keeping an 8 year old dog with serious medical problems, who has never been housebroken - the dog uses the kitchen as a bathroom! I spent the entire visit shooing the dog back outside into the yard and mopping/sanitizing the kitchen (upwards of 5-6 times a day); when the dog "escapes" the baby gate in the kitchen, he marks the carpet in the living room. The dog would have to go and ALL of the carpet would have to be pulled up. Those are really the only two things, but they are the biggies since Dad is very attached to the dog (and boy, do I feel like a wart when I say the dog would have to go - but the dog growls and tries to bite everyone but dad, and uses the house as a toilet) and he crumbles at the idea of having to move everything to have the carpet pulled up. The other things aren't such a big deal - serious clutter (three generations worth of clothing, toys, papers, mail, etc), but he has no problem letting me help him go through the clutter... it's just too overwhelming for him to do on his own, and he doesn't want the cleaning lady touching it, so that isn't a big deal. 

 

I'm not sure what's going to happen. I'm really not. He has to make some decisions, and we have to (very gently) help him to do so. Right now he just says that he can't handle considering these things (further diagnostics in the medical realm, etc).

:grouphug:  :grouphug:  :grouphug:,  Aimee.

 

One thing I would consider carefully is how the presence of your children will affect his home life. Are they generally quiet, calm, and helpful? Are they often noisy and rowdy (this describes my kids)? Since your FIL most likely will need a lot of peace and rest, adding children to the home for a long-term visit may not be as comfortable for him as he now thinks it is. If he is an introvert used to living alone, it will be a big adjustment for him. If he is more extroverted, having additional people around when he is not feeling well might not be as big a deal. But I'd carefully consider these things.  If you decide to do this, I would talk things over fairly bluntly with him at the start and give him an easy way to tell you along that way if it is no longer working for him. What starts out as a good plan might not stay that way. I might also make sure that there was a way to get the kids out of the house for a time each day -- maybe schooling at the library??

 

I don't want to throw any kind of damper on your ideas with my questions. I just think that considering these kind of things ahead of time is important.

 

Otherwise, if everyone is in agreement, I think it is a sweet and loving idea. You'll need to go into it knowing that even with nursing help that it won't be easy on you as a primary caretaker of him as well as your children. I had my mom with Alzheimer's living with me for a time, and there were definite challenges that I did not predict (even though my grandmother with Alzheimer's lived with us when I was a teen and I was one of her main caregivers, so I was somewhat experienced). Do you have a full picture of his medical needs and prognosis? Do you have an idea how long a visit this would be? What kind of impact will it have on your children to watch his health failing? Will you need to register your children as homeschoolers is his state? If so, do you know what the guidelines there are? There is a lot to consider.

 

I'm sure you will make a good choice. And I'm glad you got to see him over the holidays. I remember that you were worried you might not be able to, due to his health.

 

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Gently . . .

 

You will need to carefully consider that this process really may take much longer to happen than you might think. Months or yes, years, longer than you think.

 

My aunt lived a full seven years longer than any doctor predicted. Each of those seven years, we were told that she had just six months or less to live. She hung on, though, for a full seven years.

 

You might consider allowing him to continue with his current  support services until he really cannot function, and then bring him to your home. Yes, it will be hard on him. It would be terribly hard on you and your children to split up your family, though. And as he declines, some of that outside community support really will fade. It is a sad reality.

 

 

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We're aware that we could be there long term. We do plan on not going, if we go, until he reaches a point where he cannot function on his own (not until then). 

Him moving in with us is out of the question. He will not do (as in, refuses to consider it)... and, honestly, I do sincerely believe that that alone would kill him. It would take away what he loves most (teaching, his students, the house he has lived in for 70 years, etc), and cause a serious amount of anxiety (he hasn't left his neighborhood block in a long, long time (to the tune of years). We will not push for a situation that would make him miserable. If he couldn't handle changing the two things in the house that would be necessary to change for me and the children to be there (the dog being the biggest, considering how attached to the dog he is), we would hire a caregiver if necessary. It isn't ideal, but he would be completely miserable here, 15 hours from the only home he's ever known.

Gently . . .

 

You will need to carefully consider that this process really may take much longer to happen than you might think. Months or yes, years, longer than you think.

 

My aunt lived a full seven years longer than any doctor predicted. Each of those seven years, we were told that she had just six months or less to live. She hung on, though, for a full seven years.

 

You might consider allowing him to continue with his current  support services until he really cannot function, and then bring him to your home. Yes, it will be hard on him. It would be terribly hard on you and your children to split up your family, though. And as he declines, some of that outside community support really will fade. It is a sad reality.

 

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He won't give up the dog.

 

And frankly, I don't blame him. An 8yo dog that isn't housebroken is not going to find another home and I'm sure your FIL knows that. Is there any way the dog could be trained? I know it may be a longshot, but it might be worth a try.

 

Don't get me wrong -- I completely sympathize with you, but I don't think it would be right to make your FIL get rid of the dog he loves unless he had a nice neighbor who would take the dog or something like that.

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Aimee, hugs and support.  I know this is a tough situation.  I think you are right, moving would kill him.  I am not one who thinks longer life trumps quality of life and I lump reason to live into the quality of life category.  He has lived there most of his life.  His support systems and reasons for living are right there.  If there is any way he can continue, then I think it is fantastic that you are understanding and willing to help make that happen.  I applaud you.  And that you want your kids to experience his stories and share in his life is also awesome.  Hugs.  I know this is hard.

 

As for the dog, well, I have to agree with Catwoman.  I sympathize too.  Very much so,  But Catwoman is right.  Hardly anyone is going to want to adopt an 8 year old dog that bites and is not housebroken and your FIL is attached to that dog.  He lives alone.  That dog is his family at this point.  I understand your concerns and they are very valid ones.  But making him give up that dog is going to be a problem.  Maybe, like Catwoman suggested, you can see if there is someone who trains dogs that could help the situation.  That might be a good idea right now anyway since the home is not healthy to live in with it not housebroken.

 

Best wishes and prayers for you and your family, Aimee...

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He won't give up the dog.

 

And frankly, I don't blame him. An 8yo dog that isn't housebroken is not going to find another home and I'm sure your FIL knows that. Is there any way the dog could be trained? I know it may be a longshot, but it might be worth a try.

 

Don't get me wrong -- I completely sympathize with you, but I don't think it would be right to make your FIL get rid of the dog he loves unless he had a nice neighbor who would take the dog or something like that.

The dog's medical issues prevent it from being house trained. The area is too cold for him to live outdoors. I haven't even mentioned to him that the dog would have to leave - because, like you, I don't blame him for loving the dog, and I can't imagine asking him to give him up. DH, however, did bring it up to him, and it didn't go well. It wasn't posed as a "dog would have to go if Aimee and kids move in" - it was simply that "something has to happen with the dog, Dad"... in general. Below.

Truth be told, though - Dad now has mandatory reporters in and out of the house. Even beyond me and the children possibly coming to stay there, and the sanitation issues surrounding the dog for US, it would be devastating if he were reported to adult social services because of the dog's potty issues. Dad can't keep up with the cleaning necessary in the kitchen, since that is the ONLY place the dog uses to potty. I spent almost two weeks there, scrubbing it many times a day and shooing the dog outside, and the place still had a urine smell to it (likely because he marks the living room/dining room carpet as well). The carpet needs to be completely ripped out, and the kitchen bleached out entirely.

Even if we do not move there, I'm afraid the time is going to come where we may have to talk to him about the dog - seriously "talk". What if he slides on the urine in the kitchen? It isn't healthy for him to cook in there! What if someone decides it isn't safe, or sanitary, for him to live there because of it? It would be kinder coming from us than from an outside entity... right? (and I'm sincerely asking, because we have no clue how to gently broach this with him)

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Aimee, hugs and support.  I know this is a tough situation.  I think you are right, moving would kill him.  I am not one who thinks longer life trumps quality of life and I lump reason to live into the quality of life category.  He has lived there most of his life.  His support systems and reasons for living are right there.  If there is any way he can continue, then I think it is fantastic that you are understanding and willing to help make that happen.  I applaud you.  And that you want your kids to experience his stories and share in his life is also awesome.  Hugs.  I know this is hard.

 

As for the dog, well, I have to agree with Catwoman.  I sympathize too.  Very much so,  But Catwoman is right.  Hardly anyone is going to want to adopt an 8 year old dog that bites and is not housebroken and your FIL is attached to that dog.  He lives alone.  That dog is his family at this point.  I understand your concerns and they are very valid ones.  But making him give up that dog is going to be a problem.  Maybe, like Catwoman suggested, you can see if there is someone who trains dogs that could help the situation.  That might be a good idea right now anyway since the home is not healthy to live in with it not housebroken.

 

Best wishes and prayers for you and your family, Aimee...

Oh I so sympathize with him concerning the dog. I do. We adore our pets.

The dog has serious medical issues which contribute to him not being housebroken. He was a rescue. He's in pain constantly. He has advanced, severe, perianal fistula; he's a small dog (about 15 lbs), but his anal area protrudes and is the size of a grapefruit - literally the size of the dog's head; he screams when he tries to poo :(

Dad CAN choose to have him operated on... but I believe he's been told that it's quite possible (if not probable) that the fistula will come back. Dad *can* afford the surgery, and could even afford to repeat the surgery... but it's about 3K per surgery; if this needs to be repeated yearly... well, that's a HUGE cost, on top of the already prescription food and handful of medications the dog is on. 

I personally am concerned that the dog has neurological issues. He is SO edgy. That could be from pain - but he's edgy and aggressive over everything; food, water, asking him (nicely) to go outside, telling him "no" when he marks the sofa - everything is bite or growl worthy for him.

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Oh I so sympathize with him concerning the dog. I do. We adore our pets.

The dog has serious medical issues which contribute to him not being housebroken. He was a rescue. He's in pain constantly. He has advanced, severe, perianal fistula; he's a small dog (about 15 lbs), but his anal area protrudes and is the size of a grapefruit - literally the size of the dog's head; he screams when he tries to poo :(

Dad CAN choose to have him operated on... but I believe he's been told that it's quite possible (if not probable) that the fistula will come back. Dad *can* afford the surgery, and could even afford to repeat the surgery... but it's about 3K per surgery; if this needs to be repeated yearly... well, that's a HUGE cost, on top of the already prescription food and handful of medications the dog is on.

I personally am concerned that the dog has neurological issues. He is SO edgy. That could be from pain - but he's edgy and aggressive over everything; food, water, asking him (nicely) to go outside, telling him "no" when he marks the sofa - everything is bite or growl worthy for him.

Not for anything, but he owes it to that dog to get him the surgery.

 

I would growl and bite, too, if I had a painful condition like that poor dog has!!! :crying:

 

I'll bet you would see a dramatic change in that dog on many levels once he was finally feeling well. I think it's terrible that he is being allowed to suffer like this!

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I cannot imagine leaving this dog in the pain that he's in. Operate on him or put him to sleep. This is absolutely intolerable.

There are rescues which take on dogs like this. (for example here locally we have SAINTS  There *are* organizations like this around the country that will spend considerable funds on dogs. My Bear had >$6,000 in surgery paid for by a rescue) so there *may* be options there but I'm the first to admit they're not terribly likely.

But it cannot be left like this. It just can't.  This is inhumane.

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I cannot imagine leaving this dog in the pain that he's in. Operate on him or put him to sleep. This is absolutely intolerable.

 

There are rescues which take on dogs like this. (for example here locally we have SAINTS There *are* organizations like this around the country that will spend considerable funds on dogs. My Bear had >$6,000 in surgery paid for by a rescue) so there *may* be options there but I'm the first to admit they're not terribly likely.

 

But it cannot be left like this. It just can't. This is inhumane.

I agree completely.

 

How was this poor dog allowed to become so ill??? Can you even imagine the pain and dread he is living with 24/7? He must be terrified when he has to go to the bathroom. He must be in pain all the time -- especially when he walks and when he tries to sleep. How does he even manage to sit down???

 

I feel terrible about this and I don't even know the dog.

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I'm actually surprised the dog hasn't been seized. Here if social workers go in & they observed this, they'd get the SPCA involved & depending on circumstances the animal would either be seized or the owner would be given very short timeline to arrange for medical treatment.   Leaving a dog in conditions like this here is also grounds for criminal prosecution under the prevention of cruelty to animals act.

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Not for anything, but he owes it to that dog to get him the surgery.

 

I would growl and bite, too, if I had a painful condition like that poor dog has!!! :crying:

 

I'll bet you would see a dramatic change in that dog on many levels once he was finally feeling well. I think it's terrible that he is being allowed to suffer like this!

Oh no - please do not think that he's denying the dog the surgery! I should have clarified - he only just switched vets; his previous vet was insisting on treating only with meds (and prescription food), the new vet (who the dog was taken to by a dear friend while FIL was in the hospital) was the first to mention the surgery. Dad plans on getting the surgery - Tony and I are just concerned because it was mentioned to FIL's friend that it's like the fistula will come back, and back... and back, necessitating MANY surgeries.

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Gosh, Aimee. What an ordeal!

 

Your German Shepherd had the same thing, didn't he? I thought it was a perianal fistula. Can you try medication for FIL's dog...wasn't it antibiotics and steroids?

 

I'd feel jinxed if I had 2 dogs that had that painful problem. :-(

Our GSD did have perianal fistula... or, rather, they thought he did. When he declined rapidly while on meds, it was determined that he had advanced stage cancer and he was immediately euthanized (he was vomiting black bile and unable to stand).

FIL's dog IS on medications, as per the previous vet. The previous vet was trying to handle it conservatively, I guess, with just meds and prescription food. The surgery was mentioned, only a couple weeks ago while FIL was hospitalized, and Dad does plan to get the surgery. We (DH and I) are only concerned about him getting the surgery because the vet did say it would likely need to be done again. 

The dog was biting and growling long before the fistula popped up. 

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