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helpmil Asked September 2022

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

My mother-in-law is 67 years old and in the early/moderate stages of dementia. She lives at home with her husband, and we live next door. She also has type 1 diabetes, which coupled with the dementia means really high and low blood sugars sometimes when she forgets to eat, or forgets she took insulin and doubles doses herself. She has a dexcom which has saved her life multiple times this year by alerting me and my husband when we need to go intervene. Her husband is supposed to be her main caregiver but he just doesn't seem to be getting it as far as what it means to be a caregiver. He doesn't do anything around the house as far as cooking, cleaning, laundry etc. He's supposed to be in charge of when and how much insulin she gets, but it's an inconvenience for him so he doesn't. When we have them over for dinner her husband makes rude comments about how he's "so thankful you cook for me. She doesn't cook for me anymore". She'll ask questions about things that have already been discussed and he'll say things like "don't you remember?!" or argue about things of no consequence because "she's not right. What she's saying doesn't make sense." My husband and I don't think it's safe for her to be driving anymore, but his dad thinks having to drive her 10 minutes to visit her mother, or taking her to doctor's appointments or the grocery store is too inconvenient. So he lets her drive. My husband has had several conversations with his Dad about how needs to drive her and accompany her to appointments because she isn't in a place to be making medical decisions. He assures us he will, but then the next time we talk to them he hasn't done any of the things he said he would. We've sent him links to memory care classes and articles, and at the last memory care appointment my husband accompanied them and he and the doctor had a very serious conversation with his Dad about what it means to be a caregiver. But nothing seems to help at all and nothing has changed. Do we just give up, and take over her care and he gets a free pass to a selfish life of doing whatever he wants? At this point, I feel like his inability or unwillingness to be a caregiver is putting her and other people in potentially dangerous situations.

helpmil Sep 2022
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...

lealonnie1 Sep 2022
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.

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BarbBrooklyn Sep 2022
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.
JoAnn29 Sep 2022
No, he is a selfish B*****d.
BurntCaregiver Sep 2022
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.
PatsyN Sep 2022
Thank you and the caregivers you worked with for caring. ❤
velbowpat Sep 2022
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.

freqflyer Sep 2022
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].

97yroldmom Sep 2022
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.

Taarna Sep 2022
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.

Catskie62 Sep 2022
Tough situation and I hope you get thing worked out. My late father (he was Hungarian)did everything for my mother.

NYCmama Sep 2022
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.

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