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A little background information about my situation…four years ago it became clear that my in-laws could no longer care for themselves. MIL had advanced dementia and FIL was showing signs too. He was also becoming increasingly frail physically and having repeated UTIs. After one particularly nasty one which landed him in hospital for a week, we finally convinced him to move (they were living two hours away at the time). He absolutely refused to consider AL so we found a senior condo complex about 20 minutes away from us. It is a very nice place with a la carte services (nurse on site, etc.), as well as some included, such as light housekeeping. I quit my job and was over there usually 4-5 times per week, helping with cooking, cleaning, appointments (FIL has a LOT of them), laundry…the regular stuff.
After about two years of this, MILs dementia progressed to the point where she was becoming violent when sundowning. We begged FIL to let us place her in memory care but he refused. Finally, staff at the condo intervened and insisted that neither he nor she were safe with her there. They told us that they would have to get social services involved if we did not place her. This was enough to finally get FIL to relent. She went into a nice home but unfortunately fell after a few months there and broke her hip. She passed away about a year ago.
While I was caring for them, I was also taking courses for a career change and working part time. I also burned out. Shortly after MIL passed, my husband quit his job and started his own business. The main reason was so that he could be more available to help with his dad (his previous job required 3 hours of commuting per day, minimum).
My MIL had mental health issues before the dementia, but for the most part we got along. It was not fun taking care of her, but doable. FIL, unfortunately, is a different story. I know the word “narcissist” gets thrown around a lot lately, but I really think that if you look it up in the dictionary, you will find a picture of him. He is horribly racist, sexist, and mean. The last time he was hospitalized for a UTI and my husband went to pick up some things from his condo, they called me asking when he’d be back because of how nasty FIL was being to the nurses. He has been telling my husband that he is worthless for his entire life. If my husband backs away from him, he will sob and say he is sorry, then start the whole cycle again.
At this point, he has become so frail that it is difficult for him to walk. If one of us is over there, he will call within an hour of our leaving to demand that we come back. Sometimes because he is afraid of falling, other times because he wants a glass of water.
He is completely dependent on us. He really can’t do anything for himself any more. His dementia, however, is at a stage where he can usually “showtime” and seem lucid around doctors, etc. Around us, he often seems lucid as well, but other times he says that he’s trapped in a foreign country and can’t find his passport.
Here’s the thing…his doctor states that he has the right to make his own decisions about how to live his life since he is not yet incompetent. I do understand that. However, I don’t understand why he has the right to decide how we live OUR lives. He has completely consumed us and it will only get worse. He does not care what this is doing to us. He states that it is our duty to care for him, even though he never took part in caring for his parents. He will never agree to go into nursing care, which the nurse at his condo agrees is where he should be. Living with us is out of the question, even though that is now what he states that he wants. I do not like this man and if he moves in here, I know he will never leave and he will destroy my marriage. Most importantly, I also have a ten year old son who deserves to have a childhood.
I suppose my question is this: why do the rights of the caregiver matter so little? I believe that elders should be treated with respect, certainly, but not at the expense of others. I think that you get one life: your own. No-one has the right to lay claim on the lives of others, parent or not. Thanks for letting me vent.

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Molly, good vent! FIL, you are right, will only get worse. It will become more difficult as he progresses in his disease. He can still use a phone. So, he is not that far along yet. It is your and hubby responsibility to establish firm boundaries. Stop catering to fil. Do not answer the phone each time he calls. What about getting him a caregiver to spend a few hours with him a few times a week. Would that be possible?

FIL is running your life, correct, but you need to stop letting him.
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Gladimhere, thanks for your response. We have hired caregivers in the past, he either refuses to let them in or berates them until they quit. One refused to come back after spending only two hours with him! Poor girl, I don’t blame her. The issue with backing off is his physical frailty. He falls regularly. He has been sent to the hospital twice this week after falling, they just send him home. He is emptying his catheter bag into pots by his bed or recliner because he feels too weak to go to the bathroom. I have limited my involvement since my husband started caring for him a year ago. It is very difficult for my husband to do so since their relationship is so toxic. Also, he loves his dad despite it all. It’s just a hot mess.
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He runs your life because you let him. And if he is competent he gets to decide how he lives. Next time he needs a trip to the ER you might want to inform the doctors of his living situation and tell them it is unsafe for him to go home and that you are unable to care for him. They will figure out a placement for him.
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"I suppose my question is this: why do the rights of the caregiver matter so little?" I often wonder this, too. And I'd add "and health." 40% of caregivers of elders with dementia die before their charges. Society expects family (usually women) to step up and take care of the elders, even though the elders live longer, sicker lives. We need a "caregiver liberation (lib)" movement!

Lkdrymom has the answer above for you. Who is bringing him home from the hospital? Your husband, right? And he tells the medical professionals that he is the caregiver. This needs to stop, and what is suggested above needs to be done. But will your husband ever get on board with this plan? I see a crisis point coming to your marriage when FIL can no longer live alone, and then your H might agree with FIL that he needs to move in with your family?
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You and your husband are giving FIL the right to control your lives. You've handed it over to him. There are no boundaries. You've given him an inch and he's taking a mile on a regular basis. You can't depend upon his behavior to change so you and your husband have to change your own behavior.
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Lkdrymom, I agree that it is us who let him treat us this way. At this time it’s not really me anymore, since my husband is doing the majority of the work. I think there’s a big difference between knowing what needs to be done and actually doing it, though.
CTTN55, it is my husband who is picking him up from the hospital at this point. I have worried that he was going to move his father in with us in the past. Both in-laws lived with us for a few months in between selling their home and moving into their condo. It was a nightmare. Living with that man is just unbearable. However, my husband is aware that that is not an option. I have told him that if his father moved in, I’m leaving. The more pressing concern now is that my husband will leave our home to move in with his father. He has suggested that he might.
My husband has an appointment with the CCAC today to discuss his father. We live in Canada and that is the organization we deal with here for help with elders. Hopefully, they will be able to tell us what we need to do. Thank you so much for your answers.
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Eyerishlass, I agree with you. I know we have to make the change. It’s just hard. If change was was easy,I’d be 20 pounds lighter! Hahaha.
Hopefully the CCAC will be able to help us. The real issue is getting my husband to step back. I can’t force him. And when you have lived under the thumb of a tyrant for so long, it’s difficult to wriggle your way out. Especially at middle age.
Again, I really appreciate your responses.
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Molly, he sounds ready for long term care. If that is suggested one bit of advice I have for you, the people from your LHIN will try to pressure you to list several choices for nursing homes, but no matter how desperate you feel don't put anything on that list that list that you haven't checked first and feel is a realistic possibility, once you get the call that there is an opening there is not time to hesitate as an answer yes/no is needed within 24 hours. Something else they might not tell you, if you have already filled out the papers requesting long term care you can still change the places you have selected and remove ones that arn't suitable.
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Cwillie, thank you, that is good advice. I have already checked out homes and there are several that are very good. I went through that process for MIL when I was still the primary caregiver for the two of them. Now my husband is in charge and I go over much less frequently, to give my husband a break.
I agree that he is ready for long term care. The issue is his being in this “no man’s land”, where he is unable to care for himself but still considered competent enough to make his own decisions.
Whenever he is released from hospital, they are told that he lives alone. They still let him go. I suppose what we must do is refuse to take him. The h**lfire he will rain upon my husband will be epic. My husband is terrified and filled with guilt.
Hopefully the CCAC will be able to help us. The condo nurses will certainly back us up. I’ve also suggested that my husband and I meet with FILs doctor to explain to her how bad he has become. It’s so difficult. No one wants to be responsible for taking away a persons rights. I read on another thread about a woman who is relocating for her job and a social services has told her that she cannot. It’s just a mess. Thanks for writing.
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Molly, a few of your comments really stand out in terms of the existing situation and possible solutions:

"If my husband backs away from him, he will sob and say he is sorry, then start the whole cycle again." Controller, manipulator, conniver, that FIL is (thinking in Yoda speak this morning).

"The real issue is getting my husband to step back. I can’t force him. And when you have lived under the thumb of a tyrant for so long, it’s difficult to wriggle your way out. Especially at middle age."

'The h**lfire he will rain upon my husband will be epic. My husband is terrified and filled with guilt." Ask yourself and your husband why he will feel guilty; he's gone out of his way and made workstyle changes to help FIL. He's trying to find a safe place for him, and that's the important issue.

He could legitimately feel guilty if he abandoned FIL, but he hasn't. He should feel PROUD that he's been so supportive despite lack of appreciation.

Let's face it - FIL is NOT going to change; only you and your husband can change, to protect yourselves, your marriage and your son.

As you realize, your husband is really the key to the situation, but the long-term domination will be difficult for him to challenge, especially since FIL is now so dependent and in need of help more than ever.

However, as you also realize, you and your husband don't need to be that help; it's available elsewhere.

I think the first steps are those you're already taking, but also think of ways you can support your husband even more so he isn't guilted into continuing the subservient allegiance to his father.

I personally haven't had much respect for the psychological profession, although others in my family have, but perhaps some counseling could help reinforce the fact that your husband has been subordinated by his father, that he needs to recognize his own worth (and that's a major issue), and understand that he has his own life to consider first.

If he has a major stroke or heart attack, he won't be able to care for his father. And if that happens, he also won't be able to care for his family, including your young son. That might be the issue on which I'd focus.

Sometimes these caregiving situations come down to that - between the "devil and the deep blue sea". It's unfortunate, and I think it can destroy a person's self respect, and complicate an already existing low self esteem created by a dominating parent.

As to your initial comment on caregivers' rights, sometimes I see this as kind of the battle the colonists, women and minorities have fought (and unfortunately are still fighting) over the centuries for equal rights.

Unfortunately this generation is I think in the vanguard of addressing and trying to get recognition for caregivers' rights. (Maybe we should start a campaign for a constitutional amendment?) Too often we're just expected to be Supermen and Superwomen, leaping over dementia, frailty and many other obstacles, and still maintain our own lives.

But the first step is to respect ourselves and demand that our own rights be respected, and unfortunately, that's usually with the people with whom we're the closest, and then the overall medical community.


I think you're on the right path though; get as much support from governmental resources as you can (FIL can't manipulate them), help your husband work through his own subordination issues, and as soon as you're both ready, take the plunge and get FIL in a place where he can be controlled.

(It doesn't hurt to take a few "sick days" along this route to help FIL acclimate to the fact that he's not going to be able to dominate your lives forever.)
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I am surprised the Senor facility hadn't spoken up. Yes he is competent but he is a liability to them. Next time he is hospitalized tell them he can't go back to his apt. Its not an AL. That at thid point he can no longer care for himself and you are no longer capable. Also realize that UTIs are very dangerous for men and being catherized doesn't help. UTIs do a job on the mind. Maybe get Office of Aging involved. They have the authority to move him.
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JoAnn, good point about the liability issue.
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GardenArtist, thank you for your post. I have suggested counseling to my husband; unfortunately he has issues surrounding it. I mentioned that MIL had mental health issues. Truthfully, she suffered from depression for the last 25 years of her life. It was severe. She was institutionalized several times when my husband was still a young man. She became less aggressive as time went on but he was left with a deep distrust of the mental health profession. He adored his mom.
Your suggestion to focus on who would take care of his father or of us if something were to happen to my husband is a good one. I will try that. At the end of the day I know it is my husband’s responsibility to make changes. But like a wife who won’t leave an abusive husband, changing a relationship with an abusive parent is hard. My husband is a kind and giving man. I think a lot of people who grow up with domineering parents are. It’s hard to erase a lifetime of grooming.
Thanks again.
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JoAnne, I think the facility speaking up may be coming. That’s what happened with MIL. I hope so, honestly. It will be much easier to deal with if it’s “them” instead of “us”.
We are in Canada so we don’t have an Office of Aging, I don’t think. We are hoping the CCAC (our agency in Ontario) will be able to help us. Thank you.
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Is he capable of showing any type of threatening or violent outbursts because if that is case then a paid caregiver will not stay and if he is not able to walk then it could become an emergency situation of where to put him immediately so maybe this is time to do homework so there is,a plan
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Your husband needs to talk to his father's doctor and get a procedure going to have him sent to the nursing home. It can be done. It's sort of like a commitment. There's nothing to keep you from expressing your concerns to the doctor, even if the doctor can't talk about his father's health care. Met with my mother's doctor before one of her appointments and explained what was going on. The doctor can then discuss issues with your FIL w/o even mentioning you two. Please give it a try...and don't let him push you around and manipulate you. Hugs and prayers....
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FOG=fear, obligation, guilt! Look that up here, it helped me tremendously.

And me saying, "I can't be caregiver anymore", to a sociol worker when my Dad was in hospital with UTI. Kinda same mental ugly games that your husband is in. Finally hit bottom and bowed out.

Keep it here...AC saved me!
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You tell him exactly what was told to you previously.
He can not stay at his current home, he needs more care than they or you can provide.
Ask the Social Worker at the hospital to arrange placement for him, possibly at the same facility where his wife was. When it is time for discharge he can go to "re-hab" there and then remain there.
You could tell him it is until the Doctors feel that he is well enough to return to his previous residence if you wish but he will remain there as his decline will continue.

Next..You and your Husband have to back off. Do not run every time he "needs" something. You both have your own lives to live. The staff where he resides should be caring for his needs as far as the agreement with the residential facility goes. Once he requires more care than they can manage it is time to "move on". A Memory Care facility will be able to handle him as they know how to deal with all types of personalities.
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Have the doctors ever tried giving your FIL a tiny dosage of anti anxiety medication? I have seen very minute amounts...lowest dosage..make an otherwise difficult insecure person..as you described your FIL...calm down and become pleasant..big change in personality...anti anxiety meds can be dangerous to the person however..if wrong dosage..and wrong type...for that individual causing adverse reactions..especially if mixed with pain meds which then become lethal...especially in elder or sick people...but it might be something to explore with his doctor...I am not in the health profession..but have researched a lot of this..and experienced things..observed things..while talking care of a terminally ill sibling...
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Molly; back to your original question "why do the rights of caregivers matter so little?"

Elders are considered a vulnerable population and thus their rights are protected from governmental over-reaching. Caregivers are in theory able-bodied adults with the ability to protect themselves.

YOU have the right to say "no" to FIL, as does your husband. It's on the FOG that is keeping him from doing that.

You have no legal obligation to provide care for him. If any social worker tries to tell you that, gently laugh and tell her to find that in government regs. It's not there.

The obligation exists in our heads, not in law. So, we get to choose how much we do. If what is being asked of you is unreasonable and costs you too much in terms of mental health, family time, work time and money, then you say "no, can't do that dad".

And mean it.
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All right, so the doctor says he can make his own decisions so let him. Just back away and let him do his own thing. Don't answer his every beckoning call and don't come running every time he wants you there. If the doctor said he can make his own decisions, let him do just that and let him live his life the way he chooses. I personally would just quit coming around and just don't get involved no further. I'm not so sure he really has dementia or Alzheimer's if he can control it and appear normal for the doctor, a great part of me thinks he's probably faking it if he's that good at putting on an act. I don't think it's the doctor he's putting on an act for, I think it's you. I think what's really going on from your description is he's just doing this as his way to get you to wait on him hand and foot by faking conditions.

I once knew a narc myself. He went so far as to get rides from a service reserved for critical patients who aren't expected to recover. This is pretty much an ambulance service. Well sure enough, the drivers were coming through our town one time and caught him up walking around town. The supervisor was immediately alerted and future rides were immediately cut off. He didn't realize this until he went to schedule a doctors appointment ride. He probably never needed this particular service only reserved for the most critical. He probably only needed an ambulette for ambulatory people. I didn't know very much about the rules about our critical life transport until the narc said something one day about losing his rides because he was caught up and walking around. However, there came a point where I started wondering if he really ever needed his wheelchair. Though I know some people have different levels of limits and disabilities, I can't help but wonder if he ever needed his prescribed power chair at all. I can only wonder. I know not everyone is fully dependent on them so this one is tricky. I know in the case of me and a friend of mine, we both have low back issues that limit our standing and walking. The only differences he has more health issues than I do, but each of us only depends part time on our chairs. Now in the case of the narc we both knew, this narc could actually walk all the way to the store and back with no problem. He had to be careful not to get caught walking around so he just popped into his chair when he thought someone may actually catch him up and about. I know that he said he had a knee issue, but that knee issue could've easily been solved by a simple knee sleeve if he really needed it. The downfall is though that you don't want to overly depend on bracing in order to keep muscles strong.

Anyway moving on to the next person I knew before he died, he got to where he would not take care of himself. He had asthma and COPD but neglected some of his breathing treatments. When do you got upset, he would just call the squad to take him to the hospital until it got to be pretty excessive. This took away from the squad of someone else who probably needed it more than he did. At some point, someone found out he may have been faking something because he went from coming home in an ambulance and on a stretcher to just coming home in a wheelchair. Yes, someone found him out and he was pretty much demanding just like your FIL. He went from enjoying a stretcher ride to being downsized to a simple fold up wheelchair. I think most of his problems could've been prevented had he only taken better care of himself when he had the chance. He could've kept up on his breathing treatments and he could've likely prevented internal infections and even got his shoulder well again by keeping up with his PT for his shoulder. I don't know why he neglected that unless he was slowly giving up or just putting on a show for attention. I started journaling to God about this person. I then had a dream he was abusing resources. I didn't know what the dream meant until I spoke with a fellow Christian friend of mine who was able to interpret the dream from hearing the description. It was sad how he went out when he finally died. He died shortly after being admitted to a nursing home. What's odd though is when the medical team at our hospital finally found out something was off about why he was frequenting the hospital, now I understand why he suddenly didn't like our hospital. I couldn't put all the pieces together until later when I found out what was really going on that I didn't see. There's what you see and what you don't seem. Just like Dr. Phil says, no matter how flat you make a pancake, it has two sides. That's why every story is like unto a pancake, there's what you see and then what you don't see. I'm kind of glad I didn't have a car when this particular man was living because he probably would've used me for a ride to a far away veterans hospital where the medical team may've been as unsuspecting as I was. Many things he did for attention and he wanted to go somewhere they didn't even know what he was up to. Yes, hindsight is a very good teacher and looking back I can honestly be thankful for not having a car because he would've most likely used me for a ride to Wade Park Hospital. One time he slipped up but I didn't know at that stage what was really going on or why. He slipped up by saying something about someone refusing him a ride, and because of that he said he destroyed one of their headlights on their car. At the time I didn't know what was really going on until pieces started coming together and now I think I know why he was refused a ride and no one would take him anywhere.

Another situation was his house. At some point his house burned down and he lost everything. He blamed his son for our son and even put a restraining order against him. I didn't know at the time this could've been a false accusation until I started finding some things out and realized he really didn't belong in a power chair or on a mobility scooter since he was blind. He totally destroyed his apartment and even caused the landlord to have to remove an electrical socket since the wires were showing. This was a socket that was low to the floor. After seeing the two gaping holes in two separate rooms of his very nice apartment, I realized the very possibility that this person most likely caused that fire and wrongfully blamed his son. The grandson only came around when he wanted money and the son would not have allowed the grandson to come around at all.

In your particular case, I think you're onto something there. Using hindsight from my own observations and encounters makes me realize you have a right to start asking questions and lots of them. There's a strong possibility the narc in your life may actually be putting on the same kind of show the people I used to know also put on. I started realizing there was a possible cause behind the one narcs girlfriends stroke and when he got a power chair, he got her started using one and something just didn't feel right about her getting a power chair but at the time I didn't know why. You may also need to be more observant and start learning like I had to because eventually hindsight will also teach you a few things you don't currently know. Later on you'll be able to put all the pieces together but it all starts with stepping back to see the big picture. Trust me when I say the pieces will come together because they really will. I didn't realize the possibility the elderly friend I would come to know would also have narcissistic traits to some level. It always seems like they always target the unsuspecting and especially those closest to them and you have every right to start asking some very serious questions and lots of them because you should speak up. I wouldn't do this without first having others around who were also victimized by this person you're dealing with. I would just step back and wash my hands of this situation and just quit getting involved. I would just drop this responsibility like a hot potato if I were you because by now you probably had some kind of odd feeling that something just feels a little off about some detail but you couldn't really put your finger on it and you didn't know why you had that feeling. Well, join the club because I've been there along with others who've been there. If something just doesn't feel right, that feeling is probably right. I should've known something wasn't right when one of the narcs I knew got a prescribed power chair only for his girlfriend to go into one immediately after he did. Something about that just didn't feel right but I ignored the feeling because I figured if a doctor prescribed the power chair, then the person must really need it. I didn't know the flipside of the situation at that time but eventually after that narc left she immediately started walking more and more and using that chair less and less.

There's something you described. You describe something about the narc in your life sobbing in crying and trying to apologize. It's nice when someone really means it and takes steps to change but with god's help. It's another thing when they just do this as a way to win you back, only to start the cycle all over again. What you're describing is a thing called "hoovering". Yep, you're being hoovered. He's trying to get you to come back and put up with his BS. If you're dumb enough to go back, you're dumb enough to get what's coming. I must warn you that this is a different type of abuse and it's an endless cycle that will never just go away as much as you may be trying to wish it away. Be not surprised or even shocked, this is not a passing incident, this is a cycle and can be a very dangerous one. If he happens to be violent, you really don't need to be there. Instead of getting any further involved with this particular person, take that time you would otherwise use with this case and invest it in your son since he needs the attention far worse than someone who is mistreating you. Your son has his whole life ahead of him whereas this other person is much older and even old enough to know better. I know this other person is just as precious to God as anyone else but there comes a time when you must step back and let whatever happens happen. Let social services get involved if they will. You can start that ball rolling by secretly recording what's really going on and then what's really going on at the doctors office. Video recording will tell APS everything they need to know to act appropriately. I would only go over there just long enough to get a secret recording and then one more from how he is for the doctor. Take those videos with you and use them as evidence when you speak to someone from APS. After that, cut off contact and just step back and let whatever happens happen. Sometimes there are just those situations where you just have to step back and let the cards fall where they will. If he constantly calls you, I would get a different phone and move all of my most important numbers to a new phone and only save numbers of the people you actually want to talk to. If your phone allows it, you can block the number from your FIL. If not, call your provider and let your provider do that for you. Sometimes you just have to switch phones and have a different number. Sometimes providers can actually change the number of the phone you're actually on. It just sounds to me like something definitely needs done for sure. You must be strong for your son, he needs you more than your FIL does. You're helping to shape the future because children are the future. Your child is still young and developing and you really don't need something like you're going through negatively affecting him at his tender young age when he's most vulnerable to permanent damage. Just think of your son right now, he needs you more than your FIL does. At least your son has a chance since his whole life is ahead of him and you want to see him succeed in life. Those days may very well be done for your FIL, so focus less on him and more on your son who needs you more. If you were FIL won't appreciate you, your son will
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Suiie, he is not violent, just extremely unpleasant. Even if he were violent, he is so weak at this point I doubt a kitten would find him threatening.
Anoni, we have spoken to his doctor. She is adamant that he is still capable of making his own decisions. She usually has some very “helpful” suggestions about what WE can do...essentially adding on more and more appointments with specialists to take him to.
His doctor is actually associated with his he condo where FIL lives. My husband has an appointment with the condo health staff to add some services on for FIL. He isn’t very happy about that, but too bad. We are hoping that the nurses will be able to back us up with his doctor regarding how bad he really is. He doesn’t show it to her. You would think, however, that doctors would know that how patients present themselves at a 15 minute appointment might not be how they are all of the time!
Grandma, I think you may be right about what will happen. Either the condo will call social services or the hospital will say he can’t be alone whenever he goes there next. I’ve told my husband to prepare himself for that. He says he knows but we shall see.
Lokiloki, he actually was on some medication for anxiety a while back. It was lorazepam. He had to be weaned off of it because he was abusing it. He would take double or sometimes triple the dose and would end up falling even more often. He has been off of the lorazepam for about six months now. He’s also on a cocktail of other medications which make antianxiety meds not the best idea.
Thanks for all of your responses!
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Molly I'm curious, what advice did you get from CCAC/LHIN ?
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How did you get to be the only caregiver of your inlaws? Secondly, why don't you have Power of ATTORNEY? As POA you will make those decisions, as to were they will go, when you choose not to care for them anymore. This caregiving is not a job that anybody is going to fight you for, as you must know.You as POA need to do what is best for you an your inlaws! Your inlaws are not competent enough to make this decision, that is why you are involved! Right? You can visit them any time. My mom was very vicious. l have never been treated an talked to as nasty as she has been. Either way it is time for you to do what you know is right. Wish you the best an don't expect your inlaws to be happy, they are sick. 💝
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Molly,
What stood out to me in your situation is that your FIL's doctor did not agree with you about the condition of FIL.

For years I had a similar situation with my Mom's doctor not 'seeing' the mental condition she was in, or the energy and time my husband and I had to give her just to keep up with her care.

I finally got wise and took Mom directly to be evaluated by a doctor specializing in dementia. He found that she was in mid-to-advance stages although she was smart enough to know when to 'showtime' her normal self. This step helped me greatly in moving her to the right memory care unit, bypassing her regular doctor who did not want to take responsibility in making that decision or diagnosis for her.

You and your family have a life to live and although it is hard to make decisions for another human being, there comes a time when your own emotional survival comes into play. All the best!
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Molly 72

When I was a child I had a similar situation with my Mother. She would often lie to my aunts and uncles about how bad I was. So, of course I grew up believing I was stupid and a bad person. I felt everyone felt that way about me. My stepfather was a pedefile (sp?). She would create situations to prove that I was a bad girl. One example was on Christmas Eve. My Aunt and Uncle on my birth fathers' side were coming to visit and we were to exchange gifts. She wanted me to come at a time that my children were involved in a neighborhood activity. I explained that the children would be disappointed if they couldn't attend - they were looking forward to it. When we did arrive at my mothers' home everyone was upset with me because I was so late and they had to wait to eat because of me. My mother never mentioned having dinner to me. She had created another situation where I was the "bad girl" again. This is how I grew up. After I matured and was in therapy (with my husband) to try and save my marriage I continued to see the therapist for myself. It was the best thing I ever did!! She did not suggest what I did but helped me come to terms with my situation. I decided to stop seeing or talking to my mother. There was no argument - I just quit taking her phone calls or visiting her. I discussed it with no one but my therapist. I knew things would never change and I couldn't handle emotionally the dirty tricks she would play on me. So I stopped subjecting myself to it. Of course the family thinks I am the "bad" person. I continued relationship with my grandparents and aunts and uncles. My sister felt sorry for my Mother. It was the only way I could cope with life as it was. I raised three great boys and created the family I wished I had grown up with. I am so proud of them and my grandchildren. They all take good care of me in my old age. So I created the life I wanted to live and am a happy woman. Also when I decided to break off relations with my mother I had more confidence in myself and found other people thought I was a smart person. I began to "start things". I organized an Alumni Club for the graduates of my school. I refused the President job and volunteered to be the Treasurer. When my sons played high school football - I organized a Football Moms club. Again I refused to be President but I was the organizer. My oldest son will be 57 this year and the organization is still active.
After my children graduated from college - I started my own business. I was afraid at first so I took every job that came my way - in fact I was way more successful then I ever imagined. I retired at 65 with enough savings to take care of myself. I am a happy woman!
Get some help for yourself. You cannot change anyone else but you can change how to cope with life's problems.

Hang in There!!
Rose Petal
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Barb, good point about the perception of feeling obligated to care for someone. I've found that to be true as well. and also that the medical profession enforces this, with assumptions that we're literally on standby 24/7 to subordinate our own needs in favor of someone else's.
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Same happened to me but it was just a cousin. She died after more than seven years of my care. Near the end I was doing her billing, shopping, appointment managing, house keeping and house repair issues. She passed writing me out of the will because she was very manipulative and got angry because I had felt my good nature had been abused. No one has a right to force demands onto others because no one else had been willing to show up before.
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A similar story happened to my one of my relatives...
He was on a rant and became paranoid (psych hold, possible harm to self or to others). 911 was called and he was taken to hospital.
We told social worker he was not allowed back to his IL apartment (true--they said he was out of control and couldn't handle him anymore).
The family worked and had no room in the home, he was then homeless. The hospital social worker HAD to help place him elsewhere. They gave us a list. They tried to intimidate us, yet we didn't back down.
We also worked with "A Place for Mom" (to narrow down the list), and drove around for 3-4 days looking at the facilities for the best fit. It was quick and really hard, yet it worked out great in the end.
Stay strong, stand firm, and make a change.
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I'm sure others will have already pointed this out, but I'll add my two cents because it bears repeating over and over. YOU DO HAVE RIGHTS! He is exercising his rights by refusing care that he would have to pay for and abusing your willingness to wait on him at great sacrifice to yourselves. That's the key..."willingness." You say you're not willing to be abused, but you're doing it anyway. This is not a question of rights.
I know this is easier said than done, but push has come to shove, so tell your FIL that your situation has changed and you will now be visiting him once a week and can help him with whatever he needs during your visit. Offer to help him find resources to meet his needs (Uber for doctors, home helpers for shopping, cleaning, etc...). Hopefully, he'll realize he needs AL.
Your situation feels helpless because you're looking at it from the inside. To a dispassionate observer, it's like this: if someone is hitting you over the head with a stick, do you just stand there and get beaten? Of course not, you take their stick or step away from them or call the police...you have lots of options, but first, you have to decide that you are not willing to be hit over the head with a stick.
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