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I met my husband in ‘98 at Law school orientation and at that time, he had just lost his mom and was caring for his depressed dad, a physician, who had relied on her for everything, and was lost. Having lost my dad at 15 to cancer, I took it upon myself to include him on our dates, our events, our whole life. Husband has one sister who has mental issues and can barely care for herself, though that’s another story. Eventually, we got married, moved out on our own and lived with our two girls in a quad level home. Fast forward to 2013 - we would race to his home because he wouldn’t answer his phone to find him disheveled with empty alcohol bottles all over the house. Once, we came home from vacation to find he had fallen down the stairs and broke his back. We decided he needed to move in, and he got his own room, our girls had to share one, and we had the last room. Only two baths. Needless to say, that was a nightmare. He’s deaf in one ear and has always been reclusive to the point he can sit in the same spot on the couch all day long blaring the tv that could be heard outside. His bathroom issues meant we could not use the bathroom until we cleaned it, every time. And he’d have to use all the bathrooms since he couldn’t get into the tub, so he’d use our shower, and use the girls’ bathroom taking his sweet old time while they would have to get ready for school. All hours of the day and night. Just absolute chaos. So we decided to move to a home that accommodated him - a suite with a bedroom, bathroom and sitting room. For the last two years, we’ve been in the new Home (which is so beautiful and used to smell so good), but I am on the verge of exploding. As I write this, it is 39 degrees and I have my windows and doors wide open because he walks around smelling like urine every day. We got him depends that took awhile for him to use, but now he walks around with them in his hand, touching everything in sight to get to the garage to throw it out. I live my life on a daily basis so angry and bitter that these are the years I have with my children I am constantly cleaning after a man who is hostile, unappreciative, needy and thinks we are servants. I know in my mind it’s not his fault, but I can’t take it anymore. He is a dr and hasn’t seen a doctor ever as long as I’ve been around and has never been diagnosed, but it’s obvious he has dementia. We took the keys away a couple years ago and literally do everything for him. My husband and I also run our own law firm and our marriage has been destroyed completely with the dark cloud over our head. If we send him to a home, in almost 20 years of practicing law, we know the horror stories and don’t have time for that. He has no money and we don’t have extra money to pay for private help. I've begged my husband to take him to the dr so we can get options, and he refuses because he believes it will open up a whole can of worms of a life of dr visits which we definitely do not have time for, and there’s nothing they can do. No family, certainly not his self absorbed daughter, has ever lifted a finger. I’m 42, never took a honeymoon, can’t even go on a date because I don’t want my kids to be left with the responsibility of his sickness. I’m just so sick and tired of feeling hatred for this situation and I need help. I need a step by step guide on what the heck do I do to stay sane and practically deal with a destroyed home (I am OCD about cleanliness) and a Dad whose mind works enough to do what he wants, but doesn’t work to be hygienic or take an ounce of responsibility like putting your cup in the dishwasher. So sick of it and I have lost joy in my heart over carrying this load, as I know my husband has. Every single day it’s a fight - Dad, have you showered today? Dad, please put the underwear in a bag before you throw it out. Dad, you need to wash your hands. Dad, please do not put the used underwear in the laundry basket (that sits there and stinks the whole house up repulsively). I can go on forever but it makes me more mad. He will come out of his suite, say while we are all watching tv with the kids and just stands and stares and stares. I ask what are you doing? And he responds with hostility - what does it look like I’m doing? I feel like I fell down a rabbit hole almost every day of my life with the nonsense we live. Please someone help.

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This is a supersized step! Congratulations!

Once you have your new "friends" involved, I'm sure they will include in their records how bad his memory is, especially if you ask them to note it since Doc showtimed at the Dr office. Be sure to present the HC workers as friends not as staff, and act like you've all known them for years. He will likely play along if he does not remember. Compliance is the goal.
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Yesterday we took Doc to the doctor for the first time and I wanted to thank you all for the words of wisdom and abundant advice shared. He is on track now for a variety of physical and cognitive tests, we have a physical therapist coming to the house twice a week to help him get around, and I think we are finally on track to transition him to the next level of care - that is, allowing others to assist. Doc presented extremely well to the doctor, denying he has any memory, incontinence or balance issues - then at the dinner table, he didn’t remember seeing the doctor at all just a couple hours earlier. Whether the physical therapy will actually make a difference matters not to me, rather it is the idea that he must now get used to others - strangers - to help him. The billing lady told me that Medicare part A has a 20% copay, and I have no idea how we will pay 20% of anything (the dr visit yesterday cost us almost $200 bucks - which was the deductible for the year). The home therapy (thank God they come to our home) will be covered by Medicare completely. He was cooperative but in his deteriorating mind, truly believes there is nothing wrong with him and he is in excellent health. Turns out, he is, except for his memory and mobility. I think this will be a very long road and he will live past 100. Thanks again for all the understanding and direction.
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JuliaRose Aug 2018
Hi, someone else recommended I check out your posts! I’m also caring for a doctor. I Think it’s a little different when it’s your husband, but I can relate. I do everything for him because he can’t walk, etc. We are starting to introduce outside help during the day, and it’s not an easy transition. I’m growing a thicker skin, but it hurts to go through this. The next step will be to get him to the neurologist, and I’m not looking forward to that. I’ll read more of your experience, and maybe that will help prepare. Best of luck to you.
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Looks like you have a lot of responses so not reading. When it came to my Mom, I put a med size foot activated trash can in her bathroom. I lined it with a trash bag and used it for diapers. The foot activated ones usually have a lid that fits snuggly. I also put a deoderant thingy inside the lid. Maybe this will help since he seems to like trash cans.

I understand you not wanting to put him into a Nursing Home but...It maybe time. It's not fair for your family to deal with him. You have done your best to accommodate him and it's not working. It's not worth your family.
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Let me be blunt. Do what you have to do to move him to a facility equipped to take care of his needs. Realize that there is no honor in ruining everyone's life just to keep your FIL in your home.
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Your story is a nightmare, yet shockingly, I've read worse here. Please do not let your story become one of those. Your husband needs to know that it can and will become worse if his father continues living in your house. He could live many more years! The "urine smell" could easily become "feces smell." Believe me, there are horror stories here involving dementia patients and feces. Please do whatever is necessary and take back your life! There is nothing shameful in admitting that you can no longer do this!
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It took us about 3 weeks to tour the various facilities in our area. Not because there were so many but because we weren’t sure what kind of care mom needed so we hit AL, memory care and NH. We found out in our area you had to be able to walk on a walker to dining rooms in AL and MC and she couldn’t walk quite that far. So zeroed on on NH. We checked the Medicare Medicaid ratings and visited. Checked for staff ratios and bad smells and watched the interactions between residents and staff. Did they speak to them kindly? We’re there activity calenders? We thought a private room was a priority but found they were very scarce. So we took a room with a roommate and it was perfect. Sometimes it pays to be a little flexible.
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One of the keys to ensuring your loved one is not "neglected" in a facility is to visit frequently and at different times. Believe me, the staff pay attention to the patients who have family members who are involved. They will likely pay even more attention to your FIL if they know you and hubby are lawyers! Doctor, geriatric counseling, SNF - in that order. Don't even bother with a memory care facility. They will call you night and day to come deal with xyz and will charge almost as much as a SNF, plus patients are pretty much left ALONE at night in a memory care facility. If he needed things like IV, dialysis, injections, etc., he can get that at a SNF but cannot at a MCF.

Find a SNF near your home or near your work, put him there and visit multiple times weekly, even if it is only 15-30 minutes.

Good luck and don't look back with regret. You have done plenty. You need to take back your life, your health and especially your marriage. There is nothing wrong with doing that. If you stay on your current path, it will age you and your spouse rapidly and FIL will outlive you both.
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There is not ONE Assisted Living facility, Memory Care or Skilled Nursing facility that paints a PRETTY picture of its residents. They can't. They are filled with old, often physically and/or mentally sick elders that can no longer do for themselves. They are no longer beautiful to look at nor do they feel very darn beautiful with their many aches and pains. Many of them are depressed or infirm.

When you go there, the rooms are decorated by designers with fancy furniture and offer stimulating activities. The menus are gourmet and housekeeping services and other amenities sound great. But they are still filled with old, frail people needing help and care. There is nothing pretty about that.

No matter how nice the facility is, the harsh reality is that the old folks are on their last leg. That's hard to look at. So the facility "appears" bad when, in reality, it's the seniors that look bad. Because you will be seeing elders in various states of disability, you may think the caregivers are to blame. But, having been there, most times they are doing a good job, if not better.

My late ex-FIL wouldn't visit people in nursing homes because he "felt bad for them". (What a stupid reason.) The fact is he was ignoring his relatives because he found the sight of someone who was totally dependent, disgusting. (people who need diapers changed or to be fed, etc.) We don't like to see that but that's real life-baby. It could happen to all of us.

So, tour whichever facilities in your area that would be appropriate for him, get him out of your house, normalize your family, clean your home and get on with life. You can visit "dad" a couple of times a week and finally restore your relationships with your husband and kids.

It's a pile of poo that he'd "just die" in a place like that. If you don't do something it will cost you dearly in the end. Is he worth dissolving your marriage and business and dividing up your kids?
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Ack, I jumped ahead and did not clearly express where I was going with my earlier comment. You are concerned about finding a horror story=worthy facility where something horrible will happen to FIL. I'm attempting to say that the things people call horror stories in NH are generally not so bad if you look at them from a perspective of, if I'm demented I want to die sooner rather than later. The chance of a fatal accident happening is actually very small. I doubt we'd have so many facilities if all were killing off patients on a weekly basis. In my experience, families don't face the reality of their loved ones' mortality soon enough and expect them to live forever, even though the reason they move LOs into facilities is that they are old and frail. I've probably dug myself into a deeper hole, but I hope you can grasp what I'm trying so hard to express.
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I am sorry if you were offended that I said both FIL and children have been neglected. I forgot you were a lawyer and that means more to you. He has been neglected in that he is living in a busy on the go household, how many hours a day is he alone? When was the last time he spent time with his peers? Lack of things that do not hit our radar are neglectful to them. I was harsh in my terms and I apologize for my tone. I do however, stand by what I said, it is not fair to anyone involved, none of you has a happy home, how sad. FIL needs to be with professional caregivers, his peers and his home, not yours.
Imagine being able to plan a family outing and everyone is actually looking forward to seeing grandpa.

I toured about 10 facilities in just under 1 week. There is a question here asking should I or shouldn't I or home care vs. AL (I can't remember and if I go looking I loose what I have written) and another poster gave step by step instructions on how to pick. I will search and come back.
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Yep, there are bad facilities out there. But there are also good ones. And " good enough" ones. You only need one.

Getting FIL to the doctor is step one. Getting a professional needs assessment from the local Area Agency on Aging, or a private geriatric care manager could be step two. Finding a facility is step 3.
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I am so glad that you’ve chosen to get him to his doctor for an evaluation! I can’t imagine a closer version of “hell on earth” as what your family lives. You have now come to recognize it as such which is a major step forward. You may want to talk/email the doctor in advance to let him know your FILs behaviors as you see them. FIL may be able to “showboat” as they call it while with the doctor, but if you can tell the Dr in advance what he’s “really” like it may help guide the conversation and indicate what level of care he really needs. There are many options for his care...assisted living, memory care, or long term care, depending on his needs. And none of them are the horror cases that you dread. But you won’t be able to figure it out properly without an accurate needs assessment. To me, your current life is the horror case and I am heartbroken for you. You have done a yomans job to do your duty as you have seen fit up to now. And now it’s time to do the best thing for your family (and for FIL) which is also your duty. Please let your DH read some do these comments which may help him see how the 2 of you can work this out for the betterment of all your family. Hugs.
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Your father has signs of dementia. It's fruitless to argue with him. It would behoove you to either hire an experienced caregiver 24/7, or place him in assisted living/ memory care home. It's time for you to switch roles with your dad. The advantage of assisted living or memory home is, your dad will be around other persons, who have the same affliction. He will be better suited to identify with the other residents, and not feel like such a burden to you. If your dad has a substantial savings, consider placing him in a safe environment, with experienced caregivers. You won't be throwing him away. You will be saving him and yourself, from unnecessary grief. If he is uncooperative, consider a guardianship or a conservatorship. Your dad has lived his life. Now it's your turn.
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Agree with surprise - what you wrote was a horror story.

I fail to see the connection between him being lucid (which in my mind is questionable) and putting him in a home being a death sentence. He needs a full geriatric psychiatric evaluation. He may have had his hair cut etc., but his mental/brain illness has not been addressed and has been allowed to dominate your home. Before you can look for a facility he needs to be assessed as to what type of care is appropriate. Ask his dr for a full assessment. Professional care and the proper meds can greatly improve his quality of life.

I grew up with a mentally ill mother, so I know first hand the damage that causes.

I am glad you have "seen the light" and that you feel that you and your husband can tackle this problem successfully. You need to educate yourselves about how to get an evaluation, about the diseases of aging, and then proper placement in a facility. There are drugs that help dementias though they do not cure. Things can only get better for all of you, even though he will deteriorate further. There is much information on this site.

Wishing you the best for your family.
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Congratulations! I can hear the relief in your typing!

Let's think about "horror stories." What you wrote is pretty horror-filled. Your FIL suffers dementia, which means it will be a long goodbye, with him getting more and more confused, ending in death in who knows how long.

After reading the book by Atul Gwande, Being Mortal, and looking at the website that goes along with it named something like, the conversation, I decided I don't want to live like that for long. If I'm on meds to control disease when I'm diagnosed with dementia, right now, I don't think I want to continue my meds. I'd rather have something else take me out - heart attack being #1 in my book!

With that in mind, a deadly fall in a nursing home, fatal mis-medication in a nursing home, or anything that goes wrong that causes me to die earlier once I'm in the throes of dementia - those don't look so horrible to me.

It's all a matter of perspective. Living longer with severe dementia is not part of my plan.
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"In my mind, because he still has lucidity and ability to get around, and know how stubborn and defiant he is, I feel like placing him in a home would be a death sentence."

Since when have his life choices been more important than those of you, your husband and children? It sounds like he has ruled the roost the entire time. He will die one day, whether or not his is in a nursing home.

You and your family deserve a life, holidays, clean bathrooms and no nastiness in your home.
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Thank you to everyone above who took the time to respond. I have not ever spoken about this publicly because I feel ashamed and wrong for complaining about what I have undertaken as a duty. Of course our business has suffered and our children have two parents running ragged - one daughter does travel tennis for two years and my husband spends more time driving her around than dealing with the Firm and I am done. It is time. He agrees this cannot go on and today I got him to finally agree to take Dad to the dr and let’s see what our options are. Despite our exhaustion from this situation, we are a formidable team that has overcome a lot - and I believe once we lighten the million pound burden of Dad’s care, the relationship will improve because we will be able to feel at home again without the staring and confusion and neediness. I’m sure there are wonderful places he can live - What do you look for to avoid being another horror story? How much time did it take to do that research and running around? In my mind, because he still has lucidity and ability to get around, and know how stubborn and defiant he is, I feel like placing him in a home would be a death sentence. We have cared for him and included him in everything, taken him for every haircut, the dentist, staying on top of his meds, and anything he needs. I don’t think we’ve been negligent to him at all, but to my kids, yes. I appreciate all the advice and know it all comes from people who’ve lived it and mean well. I wish I knew about this site and the resources sooner, but I acknowledge, not asking for help until now is my fault. Since I can’t change what’s been, I can change now, and better late than never.
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You need to get him in a facility that has trained professionals. You and husband are negligent with him and your children at this point. Is this really the memories of growing up you want your children to have? Are you willing to have a broken home as the legacy? If you and husband divorce because of his dad, what do you honestly believe is going to happen with your FIL?

Save your home and your marriage and put this person in a facility that can meet his needs. NOW!
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“ If we send him to a home, in almost 20 years of practicing law, we know the horror stories and don’t have time for that.”

But you have time to run after and clean and cater to him 24 hours a day? At the risk of your marriage? And your children? And not all Nursing Homes are horror stories. I couldn’t get Mom into my #1 choice because I just couldn’t wait any longer, so I opted for #2 when a bed was available. It’s not perfect but I am very happy with it. #1 choice probably wouldn’t have been perfect either.  And you can always move him if you find it’s truly not up to par. Do your due diligence first. The point is you have choices. Status quo is not one of them. Your FIL will see a doctor, get his meds, and have people to clean up after him, and make sure he is safe and as healthy as possible.  You hear horror stories but I dont think the happy stories get any media attention. But there are far more elders and their families who are happy with the care. Post back on here and you will get lots of advice from people who have gone or are going through what you are. 
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So very sorry you are going through this. You HAVE to put him in a home. You HAVE to find a way and do it! There are actually some decent ones there. Put him in a home and visit frequently, even if it is just for a few minutes. Get him a thorough physical and go from there. Was there no money from the sale of his house?
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I agree that you need marriage counselling as you are not able to intelligently discuss the issue of fil with your spouse. You also have a very biased view of care facilities as many here have their LO in an (at least) acceptable facility. Your life, and probably health, will spiral further downwards as his disease(s) progresses.

You are negligent in not attempting to get fil the medical care he needs. You do not know there is nothing they can do. If fil has no financial resources medicaid can be applied for. He sounds to be past the ALF stage.

My greatest concern is for your children who are being brought up in a very toxic environment, in more than one sense of the word. Your greatest responsibility is to them and providing them with a healthy nurturing home.

I know what I have written is harsh, as is your situation, but you are neglecting the needs of your children and that must be addressed.

Have your husband read these responses, then make an appointment with a marriage counsellor.
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Every day for twenty years.

So...

Why today? What's just happened that made you post today?
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Excellent advice above. You only have one life, one chance to raise your kids, and enjoy a marriage and family, and it’s all being completely hijacked by guilt over a mentally ill man. Please find the courage to change this situation. This man needs far more help than is fair to any of you, including him, to provide. This site has a wealth of information, take some time to reasearch and formulate a plan to change this dysfunctional mess. I wish you the best
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Ahmijoy, incisive yet kind and succinct analysis; well said!
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Even though there are other issues going on here, Dad is in the middle of 90% of them. You have toted, fetched and lived his life for him for a long time. You’ve included him in absolutely every part of your life, including  financial responsibility for him. He has no worries. Why should he? He lives the way he wants...off you. He may have been a doctor at one point, but not now. And, can you and your husband truly dedicate yourselves to your own business with all this baggage? Or your children?

You need to make a decision, now. Will you let things continue on the way they are? You know the consequences of that. You’re 3/4 of the way there now. Or, will you invest in some marriage counseling and try to save your marriage, which will include finding somewhere for Dad? The end result depends on which way you and your husband decide to go. Dementia only gets worse, especially if there were addictions and mental issues in the past. The solution is up to you and how much more you will tolerate before you finally say “enough!”
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