How do we handle our Mother in denial about husband's illness? -

How do we handle our Mother in denial about husband's illness?


I am learning that denial can be dangerous. I live with my boyfriend & his elderly parents who I refer to as my in-laws since my boyfriend & I are practically married. My boyfriend & I are 35 and his mother is 74 and his father is 80. His father has had various health issues for years including cardiac issues/strokes. The strokes had never left him w/any visible permanent damage. However, we're now discovering that there may have been more damage than previously thought. I am disabled w/an autoimmune disease & a Parkinson's-like movement disorder. I use a wheelchair and I am home with his parents 24/7 but I'm pretty independent for my condition though I sometimes need assistance for some small things. I clean up after his parents since they will leave things all over the house/dirty dishes all over the kitchen so I make sure that the chores are kept up with. His mother has shown signs of dementia for a while now. She repeats the same sentence give times in a five minute period & will completely forget conversations that we just had. She misplaces objects in weird areas & becomes agitated over the slightest issues. Her way of dealing w/any issue is screaming at us until we stop talking about it. She has various health issues such as diarrhea at least 4 times a day, everyday, and absolutely refuses to go to the doctor. If we even mention her going, she screams at us & used her husband's health issues as an excuse to not have time.
Last winter, her husband gradually stopped eating. He has type II diabetes and has always eaten very unhealthily & we had to try & limit his junk food intake. At first we thought it may be his diabetes medication that was causing a loss in appetite. He then started conplaining about the feeling of food "not wanting to go down." His doctor sent him for an upper GI test along with swallow testing. All came back negative. He became fixated on symptoms and would think that something very bad was happening to him. The next few months went by & it was becoming increasingly difficult to get him to eat and even drink. His weight plummeted from 190 to 145 I'm a three month period. His doctor had more scans of his stomach and other tests. All came back negative. His brain MRI showed his history of strokes but no damage that would suddenly cause this. Then he started falling often also saying stories that he fell when he didn't. His wife began screaming at him on a daily basis all day that he was making up his symptoms & screaming at him to eat. He began to urinate himself & would refuse to shower until we would all but force him. He became so weak from not eating, his wife would be screaming at him and making excuses for all of his behavior. His doctor ordered home health physical therapy and a visiting nurse. Each time PT would come, he would suddenly have symptoms that would prevent him from exercising. He also was lying to them on a regular basis saying "I feel great today! I'm eating lots!" & as soon as they would leave, he would sit in his recliner all day and do nothing and barely eat or drink. His weight dropped to 135. I became frustrated seeing him berated by his wife each day. I kept telling her he's not making it up for attention. I told her in his mind these things are real. He started then with short term memory issues like asking me if he had gone anew here earlier in the day when he hadn't, forgetting to walk back with his cane if he got a cup of coffee. He fell one day & hit his head and his wife refused to call 911 & luckily I was here to stop her from trying to make him crawl to his recliner. His doctor said he thinks he may have vascular dementia. He put him on 5mg of aricept & since she didn't see an immediate change w/the drug, she said again he was making it up & he doesn't have dementia. 3 weeks ago, he developed a bad cough and she finally called an ambulance after he looked like he was dying. His bloodwork amazingly came back ok which was surprising because he basically lives off of Ensure shakes. He was transferred to a therapy rehab hospital. He began hallucinating conversations w/old coworkers & thinking he was at his brother's old house. He was terrified saying he thought she was going to leave him there permanently. She came home that day so upset saying it will kill him being there & she was pulling him out. I & other family told her it was better for him to have round the clock care. The doctor said he thinks he may have Lewy Body Dementia which she refuses to agree with & now plans to take him home tomorrow & insists she can take care of him. She can't. My boyfriend told her last night she cannot verbally berate him & she needs to come to terms that he has dementia & isn't getting better. His weight is now 129 & is still not eating w/an appetite stimulant. His PCP ordered a psych consult & she canceled it probably because she doesn't want to hear dementia diagnosis again. How do we get him the care he needs when she legally is in charge?

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MaryPat, maybe get your boyfriend to join us on here. His dad really is getting abused - I know, I watched my mom do almost that bad to my Dad, and the nursing home she put him in was probably better for him - even though he would often want to go home. The constant yelling had gotten to the point where he threatened to shoot her but I don't think he remembered that. I did not realize she was starting on her own course of vascular dementia at the time, I just thought she was unreasonable and judgmental as she had so often been with me.

And if mom is marginally competent to manage affairs now from a legal standpoint, she likely won't be for long. Boyfriend would do well to get a handle on that before it happens. The cruel reality is that a people with dementia deserve care and respect, but they can't be expected to do a decent job of managing life decisions and medical care and should not be the ones running the show....particularly not if the way the run it is to scream and deflect action successfully, which becomes a very reinforcing behavior if it is allowed to go on succeeding.

This is all incredibly hard to see, much less deal with, when it is your own parent. You may be in a position to help him appreciate what is happening and support him it taking the steps he needs to take, whether it is an elderlaw consultation or just giving the straight scoop to the rehab people and getting some home health involved. Bless you, its a tough spot to be in!
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You will have to sit back and wait. Since she has the power, she can say what care he gets. The old saying holds, "You can lead a horse to water, but cannot make him drink." Live your life and leave them to theirs. You cannot force someone to do something...
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This is a very hard situation! But MaryPat, as some others have pointed out, what does this set YOU up for?
FACT: No Marriage contract, means, you are NOT entitled to any recompense for anything. You are basically getting room and board, and being worked to within an inch of your own life, too.
If things continue much longer as they are, YOU will also end up in a facility, needing 24/7 care. It is not realistic for anyone in your condition, to do all you describe.
On the Plus-side: You cannot be held legally responsible for your boyfriend, nor his parents, debts, since you are not legally married.
That said...
There are Home health people who might be able to assist with tasks at home, a few hours daily, or weekly, depending on how well the Social Worker or Nurse evaluates the situation. It might require being paid for out-of-pocket, Unless the parents are poor enough to qualify for State Aid. But that can open up a few other problems, depending on circumstances.
Imho, those who encourage you to ask your boyfriend to pay for some home helpers, MIGHT be a good 'screening' question, to learn more clearly where you stand in all this.
You've been being a very loyal, supportive, hard-working person in all this...way above and beyond the call of duty for anyone in your conditions.
Only you, can look inside your heart, and recognize what is motivating you to do all this [because it smacks of martyrdom, fear, etc.]. That's kinda of an important, and loaded, question.
Answering that for yourself, could point you in some new directions.
It might be helpful to seek good counseling, to help you sort out your circumstances, and to see if there might be some better coping skills to adopt.
Your boyfriend might just not be aware how much you are doing...or he might.
He might be afraid to have his folks put in a facility for their safety, because if that happened....would he and/or you lose your place to live, too?
There are very important things to get done, fairly quickly...your boyfriend must do them..for that, you can be supportive. You might even know how to help him get some of those legal tasks done.
But, like we're told when we fly, "in the event of emergency, put on your own oxygen mask FIRST!" That is because, if we fail to take care of ourselves first, we cannot be of much help to anyone else.
Have you begun to "put on your own Oxygen mask" yet? How has this whole thing been affecting you?
Please consider. Folks here have shared very good advice.
Please consider it well, including for yourself!
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Let a trained social worker sit down with your mother. You are not equipped to handle this.
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Diabetes will give the same symptoms of a stroke if insulin is needed. Father could be having mini strokes. Not eating is bad for a diabetic. I think the son should ask for an evaluation while father is in rehab to go to nursing care. For no other reason to get the father straightened out. I think 74 is young for how the mother is acting. She needs a good physical.
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This is not your concern, it is your boyfriend's concern. You are being used as a 24/7 caretaker for his parents.

There's not much you're going to do if your boyfriend's mother hears about her husband's diagnosis from a doctor & denies that there is anything wrong.

If your boyfriend's father has vascular dementia/Lewy Body Dementia, there is not much you or anyone else can do about it. Whether he has a psych consult, goes into a nursing home or comes home, he will continue to decompensate & that will be his ultimate demise. You are not going to save him. At this point, a psych consult isn't going to do anything for him.

The ultimate move would be for you and your boyfriend (or just you) to move out & live on your own. That way, you wouldn't be subjected to witnessing the abuse from your husband's mother & your husband's father, who seems to be the victim in this case.
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If I read your post correctly, Mary Pat, you are living in your practically-in-laws' house and caregiving for them both. You yourself have an autoimmune disorder, a movement disorder, and are in a wheelchair but are cleaning up diarrhea four times a day along with messes in the kitchen?

With an autoimmune disorder I would advise you to stay as far away from diarrhea as possible because of the bacteria. You are at increased risk for infections and human adult feces is nothing like baby poop. Human adult feces is a biohazard. You should wash your clothes, towels, and bed sheets separately from anything contaminated by her diarrhea.

I think it would be wise for you to learn how to handle biohazard laundry properly, which means handling it with minimum agitation. You should be wearing disposable gloves when handling anything contaminated by her diarrhea and throw them away after each use. Get a soaking bucket and soak her laundry in bleach or a solution of: 3% hydrogen peroxide, vinegar, and Pine-Sol before putting it in the laundry machine. Dump the dirty water down the toilet. Drying her laundry outside in the sun is another way to make sure that her laundry has been sanitized.

You are 35 years old and while you're practically married you aren't. I'm sorry to be so blunt but you do not have the legal rights of a spouse. Marriage is different. It's a legal contract and you don't have it. You are being more than kind and generous to your boyfriend by taking care of his parents. Ask your boyfriend to get a cleaning service for his parents once a week. If he refuses that's a red flag.

Your boyfriend needs to step up, be a man and figure out what he's going to do about his parents. If you're both living in your practically-in-laws' home then the power dynamic is not in your favor and inserting yourself into their family dynamics is a bad idea because it's not your business. I wish you lots of luck!
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Dear MaryPat77 - another thought - ask yourself what your getting out of relationship with boyfriend other than work and stress? You probably already know the answer. I wish you well. thelmar
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Also...the wife might yell less at him if she were medicated. I don't know whether she would accept this idea, but the yelling is an appropriate problem to target and try to fix somehow. If I were talking to her, I would tell her that her husband's body is failing him, and maybe not so much his brain, because maybe you could get some traction on accepting that idea rather than on getting an elderly woman with some brain problems of her own to accept that idea of dementia in her husband. You have the weight loss, the diabetes, the exhaustion, probably other things too. I might try to let her 'take care of him' to the extent that she can, but would try to reduce the yelling at him. Maybe her doctor could work on this.
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It sounds as if he has had a good medical workup, yet over time shows definite progression of cognitive impairment in many ways that you describe. You might consider letting him finish his life on his own terms. He does have a terminal illness of the brain which cannot get better. Appetite stimulants, forced physical therapy, probably other things which may not be part of comfort care could be withdrawn at this point while giving him the most comfortable daily life he can have. He is in the end stage of his life. You could consider that fighting the process could be replaced with more "accept the things I cannot change".
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