At my wits end with FIL with dementia and need help on what needs to get done. Any advice?

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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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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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Reply to golden23
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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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Reply to Ahmijoy
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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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Reply to CaringForDoc
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Ahmijoy, incisive yet kind and succinct analysis; well said!
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Reply to GardenArtist
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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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Reply to Tothill
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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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Reply to Daughterof1930
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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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Reply to XenaJada
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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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Reply to rocketjcat
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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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Reply to golden23
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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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Reply to BarbBrooklyn
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