What to do when the main caregiver for someone with dementia isn't caring?

It's mind boggling to me how many people choose to remain in denial about a spouse's condition when it comes to dementia. Your FIL can easily wind up allowing your MIL to die, due to his denial and negligence in managing her life and meds now. She would be much better off living in a Memory Care Assisted Living Facility, or just regular Assisted Living, and perhaps your FIL would be happier not having her around to 'inconvenience' him anymore as well. I'm not sure about an AL's willingness to administer insulin, however, you'd have to check into that.

If AL is not an option b/c 'FIL can't bear to live w/o her', then she needs to have in home caregivers coming in to help her every day, at a minimum, in my opinion. Qualified people who can cook, clean, run errands and even drive her where she needs to go. MIL definitely needs to stop driving b/c all it takes is ONE accident to kill herself and/or others. FILs denial and selfishness can easily lead to such a crisis happening. Perhaps HE is also developing dementia himself and that's why he's so closed off to learning about the condition and/or dealing properly with his wife and acting so selfish. Have you seen him exhibiting any signs of dementia?

Common early symptoms of dementia
memory loss.
difficulty concentrating.
finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping.
struggling to follow a conversation or find the right word.
being confused about time and place.
mood changes.

I suggest you & FIL read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. I realize you can't 'force' FIL to read this, however.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Perhaps YOU can glean some useful tips from this book that you can pass along to your FIL.

I don't think you should 'give up' and give FIL a pass to do whatever he wants. I think you should tell him, point blank, if he refuses to be the caregiver for his wife, then she will HAVE to go into Assisted Living, and use up their nest egg as a result, in order to get PROPER care moving forward.

Best of luck getting through to the man, or making him understand perhaps they BOTH need Assisted Living now.

It sounds like your FIL has some cognitive impairment going on. Has that been looked at with a neuropsych exam?

Many folks with the early stages of cognitive impairment lose their folters and don't see the consequences of their actions.

I think MIL would be far better off in a good AL with medication management, rather than you guys taking on her care and resenting them both.

You are so right. FIL is not stepping up.
You can hope that he does but meanwhile MIL is progressing. You and your DH are going to have to make some tough decisions.
If I were you I would find a CELA level elder attorney who is well versed in Medicaid in your state. Try to get a DPOA for MIL if the attorney will agree she is still competent enough to appoint your DH. It seems he is already involved so maybe you have this already. MIL is so young and could live a long time needing 24/7 care. Medicaid will not leave FIL destitute but this has to be managed properly and done now. It has already been a year. She will not get better.
I would also get FIL in for a neuro exam as he sounds very thick, callous and failing himself. I would NOT be doing for him if he doesn’t snap too on the seriousness of the situation. He clearly is exhibiting signs that he thinks it is not his concern. His unwillingness to help indicates he thinks it is someone else’s job.
Managung Diabetes1 is a tough enough job in itself.
You clearly see the writing on the wall but it is so hard not to do for someone who is being neglected. Figure out where you stand or the next 20 years of your life will be sucked up.

You are correct that your FIL's inability and unwillingness to be her caregiver is putting her and other people at risk.
Many men will be in denial when their wives get any kind of illness. This is especially true when it's dementia, but at this point your FIL is choosing to stay in denial because the doctor had the dementia talk with him.
He can get a free pass to the selfish life by staying in denial of his wife's conditions. If he wants that then try to talk him into giving over POA for her to you and her son so the two of you will be legally making decisions for her and not him.
Starting now you and your husband keep her insulin at your house next door and one of you start testing her blood sugar and giving her the insulin. You take the keys to the car because she's not driving anymore. You bring in homecare help in the house. If her husband has a problem with it, here are his choices:

-Take proper care of your diabetic, dementia wife yourself.
OR
-Go pound sand.

I had a client with a husband like your FIL. His wife was out of it with dementia and an invalid. He refused to do anything for her. Of course none of us expected him to get her out of bed into the wheelchair or feed her a meal at the table, but he would do nothing and he was capable. If there was bad weather coming, I made sure there were easy meals for him to simply microwave and heat up for them both. Or pre-made sandwiches in the fridge. I made sure her diapers and wipes and everything else was right there by her bed. I could not have made it easier for him.
Well, yes I could have made it easier for him by staying overnight if there was going to be bad weather. I refused because they refused to pay for the extra hours.
He would not change her. He would not feed her. He would not reposition her. She had a hospital bed in the living room with a hospital tray table for it. He's leave some cookies on it or half a sandwich. She didn't have sense enough to pick it up and eat it though. Food had to be cut into bite-sized pieces for her.
Myself and her other caregivers would make it in after the roads and their driveway was plowed. She's be laying in her own mess with cookies on her table.
I told him that I would have to report on him and that his wife would get put in a nursing home. That put the fire under him. When there was a snowstorm and I'd get back to them, she would not be laying in a mess. He wouldn't put a diaper on her, but at least he'd put a clean bed pad under her. There wouldn't be any stale cookies or sandwiches on her table tray, so I assume he was feeding her something.
Maybe your FIL needs to be threatened with being reported on. That might put the fire under him to get with it.

Dear Helpmil,
The care your MIL needs is way beyond what your FIL can do or give anymore.
Has your FIL ever done housework, cooking, laundry? If he hasn't then don't expect him to suddenly start showing an interest. Hire a cleaning service so you won't be upset with him. (Use his money.) Meal delivery service? Take her keys away or disable her car. Make sure their paperwork is in order. Trusts, wills, POA etc. Start looking at options for both of them. Do something before it all falls apart.
You might have to give up an inheritance to pay for their care. Don't be in such a rush to give up your life.

Thank you for your replies so far! He has always been pretty selfish and self-absorbed but I think we will look into getting him a neuropsych evaluation as well. When "your decisions could cause someone to get hurt or killed" doesn't seem to phase someone maybe we're dealing with more than we realized. Maybe we've been so focused on her that we haven't seen the signs with him...

helpmil, as easy going and good natured as my Dad was, he wouldn't have known the first thing to do to help my Mom if she ever needed home care. Was it his fault, not entirely, my Mom would shoo him [and me] out of the kitchen, away from the washer/dryer, away from the vacuum, and away from the cleaning supplies as it was "her" job to take care of the house.

I remembered when my Mom was placed in a nursing home, that evening I got a call around 8pm, it was Dad saying he was hungry. Now here is a man who was brilliant, an inventor, but he couldn't figure out how to put together a sandwich. The next day Dad agreed to have caregivers come in to help [he was in his 90's and a major fall risk].

Tough situation and I hope you get thing worked out. My late father (he was Hungarian)did everything for my mother.

You are right, and something must be going on mentally with him. He may not be taking care of himself too well either, or won’t be soon. You’ve got a double problem here, so it’s time to check out assisted living for both. So sorry.

Maybe he took out life insurance on her and is just waiting for her to pass; it's happened on a few Dateline episodes.

Yes, take over in a well thought out practical way - FIL is not responsible enough to take care of his wife properly. Get all her finances in order, health care proxy, and durable POA with the help of a qualified elder care attorney. Contact some local senior centers to see what supports are available. Cut down on her driving habits by helping with meals, ordering groceries in, and hiring someone to accompany her to doctor's appointments if you can't do it yourselves. Ideally, hiring someone who would be a good fit in that household for at least 4 hours a day would be a godsend. You want someone who can manage meds & meals and help with light housekeeping. You will meet some resistance with this but in the long run it will prevent a lot of heartache. Try your best to help and manage but not take over the care taking role totally.

It may be difficult for you to take over her care if your husband is not her POA. Typically the spouse is the first POA. Are you and your husband really able to take on her care, making 3 meals a day for her, seeing that she gets her medications, taking her to doctors, maybe helping her bathe and dress, etc. Also, plan for a time when her health and mental ability decline and she needs more care. Will you and your husband be able to handle it? Maybe she'd get better care if she were in assisted living, where they have nurses to see that she's getting her medications on schedule, they prepare her meals, etc. You could still be the one to take her to doctor appointments. Is assisted living a possibility? But you also have to consider how able your FIL is to live alone. It sounds like he doesn't cook, clean, etc. He might also need assisted living, if ony for the meals and housekeeping. Or the other option is in-home caregivers and household help, if you and your husband cannot do it all. Much will depend on their finances. Get connected with a local social worker to discuss their options. They may be eligible for some in-home help. If they do opt for in-home help, lock up the valuables and personal papers, especially financial papers. It's best at this point to go paperless. All the best to you and your family.

Just as MIL is unable to make wise decisions for herself, Dad is unable to care for her and their home. He may have some dementia himself. Please get him evaluated by a neurologist and a psychiatrist - since depression is also a common malady of seniors.

Rather than feel slighted by Dad's callousness, accept that he can not handle the job of caregiving. Talk with your spouse about how to transition this care to yourselves or a facility before addressing it with Dad.

I know how you feel and mean. I went through it with my sister inlaw and I just told her flat out that, they are your parents not mines and you got almost everything you wanted from them. I also told her that because she is a nurse she should know what to do and how to care for them. My sister inlaw would leave everything up to me except taking them to the doctors. She even went far as not telling us about their medical problems and left me and her brother to figure it out and care for them, just because we live with them. She was able to get a place of her own with their help and they never helped us at all. So, I put my foot down and told her your turn to care for them now. My father inlaw passed and because she was left with POA and Trustee she thinks she's all that now and tries to keep everything from us and she still is. Somehow though we find out about things she hides from us. Now that mom inlaw is left and tries to turn on and off her alzheimers with us, I told her time for you to have your daughter to care for you and lets see how she does. So, just tell him like it is and let him worry about them for now..

Yes, please "take over" to make sure mom (MIL) is not neglected or abused. Please make an appointment with a Geriatric Psychiatrist to assist you in getting mom placed in an appropriate setting (Assisted Living or Memory Care). Being an attentive care taker is a calling; too many are ill suited to be left in charge of another person's well-being. If Dad gives you any grief about usurping his authority, then call Adult Protective Services and get them out to the house to evaluate her (and maybe him, too) for appropriate placement.

Not everyone is cut out to be a caregiver, especially men. Time to get someone in who can care for your mom properly, or move her to memory care.

I bet your MIL waited on your FIL hand and foot. As I wrote below, he is a selfish B*****d. Its all about poor him. We had our wedding reception at our new house. I was busy keeping up with everything. My MIL comes up to me and asks if I was going to get a platter for my husband. I told her "he is a big boy, he is perfectly able to get it himself" He was 5'11" and weighed 200#s perfectly able to do for himself. We both worked so he washed his own clothes (will let no one do my laundry), stripped beds, washed towels and can run the vacuum.

Now my Dad, Mom waited on him hand and foot. TG he went first because he would have had the same attitude and expect me to care for Mom. Loved him but he was self-centered.

Yes, to make sure MIL gets her insulin you may have to do it. I would get a pill planner for her meds and instruct him that he is to give them to her. Aides are not allowed to give shots or distribute meds. They are not medically trained unless medtechs.

She has a husband and he is her caretaker. Her doctor needs to sit down with him and tell him she is not capable of doing the things she used to do. Dementia is killing her brain. That if he is not going to step up to the plate that he will need to hire people to care for her and that does not mean his son. If he feels he cannot or will not do this, then he needs to place her. His marriage vows say "for better or worse". This is the worse and he needs to learn how to deal with it. If not, your going to be taking care of her and him.

Same for me/my Stepdad except it was Mom who was the A****. She lives solo now & will continue to until we bring in Caregivers or place her somewhere. She was horrible to him. Terrible comments, & most esp his last year of life. (He passed in Jan). She never cooked for him-cleaned-or organized his meds properly. She would interrupt all the PT & OT that would come in course of the week. She was worthless. We had to pull him out & place him in Board & Care last few mos of his life & get him private 24-7 care... I would think on your Mom... get her out or him.

Dear Helpmil....
This is an unusual suggestion..unorthodox, ok......just because someone has type 1 diabetes, and/or dementia going on, doesn't mean they cannot recover.
Did you know that via Proper Nutrition, zero sugar and meds, that most people can and do recover from diabetes and dementia? The meds would need to be Slowly decreased over time as the need decreases.
Sugar is the main culprit and common denominator of most diseases and ailments today.
BUT, both the afflicted person and their caregivers need to be on the same page! Nothing works if there is disunity, disagreements, etc....all parties must be in total agreement before embarking on a totally healthy, holistic lifestyle/diet, ok.
If there is unity in the camp, and all sides agree, then I strongly recommend my own YT doctor, Dr Eric Berg. Start watching his older and newer videos on how to achieve good health via good nutrition!
There ailments can be and have been reversed in many hundreds, perhaps thousands of people who comment after his videos, and I'm one of them.
Please start watching and changing what you do foodwise, and be on the lookout for absolute miraculous improvements in your loved one's health! It's truly miraculous! Our bodies were fearfully and wonderfully made by our Great Lord and Savior, Creator of all that was made, Christ the Lord! Given proper nutrition, our bodies will respond and improve! We don't need sugar, and/or meds to function well....in fact, we do very well without them!! Please give Dr Eric Berg a try...watch, learn and change the game!! To your Great Health, and, Shalom! 💜🕊💜🎶💃🎶💜🕊💜

It’s very apparent that he either isn’t taking his responsibility seriously or just doesn’t care to do the job. I would take over caring for her needs, even if that entails hiring caregivers to come in to do what her husband should be doing. Her husband is not getting away with anything. His day and his turn will come and they’ll be no one to take care of him. But his selfish ways will come back to bite him.

Call adult protective services.

helpmil: Due to your FIL's unwillingness to care for your MIL, he is putting her life in real jeopardy. She could, quite likely, have a motor vehicle accident, killing or injuring herself and/or others. She should be in a managed care facility where she will be cared for by medical professionals.

I think the husband should put his foot down. It's his mom. I hope he's POA so he can get a handle on things. Maybe get her docs medical paperwork that says she has dementia and get her a driving test. Hide the keys to her car.
He'll have to take over mom's diabetes meds. His mom & dad are both incapable of it. Does he work at home? Can he track it?
I think if he takes the lead it will be better. And that way it's not all dumped on you. I'd be very careful bc it might be. You don't want that. And if you step up, the FIL might start fighting with you. It's got to be the son.
I think it's horrible the husband thinks it's OK for her to drive. She could hit the gas and kill someone by accident!
I had to wait till dad had major diabetic incident, and ended up in the hospital. He passed out and couldnt get up. He was in that bad of shape the hospital refused to send him home ever. I had a talk with nurses not to send him home. I think they threatened mom/sibling with police action. They said he's going to nursing home and staying there. I think they were both too afraid to move or remove him. So he finally got help.

So you might have to wait till she passes out, or gets a uti, and an ambulance is called. But dont be surprised dad tries to bring her home. You have to block that. Your husb needs to get POA.

If she is having bowel and bladder issues, who is taking care of that? She could be getting skin scald an horrible ulcers. Has anyone checked? Has anyone checked the house for urine and feces? Maybe that's a way to get her help. Does anyone know if she's having accidents in the house? It's possible. I don't think you will ever convince the dad. It's to easy to stay in deep deep denial and do nothing. He doesn't want to change.
Good luck. Keep us updated.

You could call adult protective services but I'm not sure that will work. If the dad is a narcissist, he can talk their way out of anything, and turn it around on the son as being vindictive.
Maybe you can get someone in for a few hrs a day? To keep an eye on her and what's going on?
Good luck.
I think the dad is in deep deep denial. I was never able to convince my sibling or mom.

Could be a case of Lead, Follow, Get (out of the way).

The OP & DH are not happy to FOLLOW the current plan of neglect. So the choices left are LEAD or GET.

Who has POA? Is it activated? Is the Dementia dx formalised & noted that the POA is now required for decision making?

Could be quite a hostile takeover due to Dad's denial?
Then again, he may be relieved & actually waiting for someone to fix all this for him.

The GET option may be temporary.. while awaiting a crises to get the opportunity to actually LEAD.

This is similar to the information received I received from a Social Worker. Told me to GET for now, to be 'legal-ed up' if possible, to have made notes, have Doctor contact numbers ready. To be *ready to roll*. And so I wait...