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I am asking for advice on what do. My husband is, seemingly, in denial about the late stage of dementia his Mom is in. She has lived with us for the past 6 years and has deteriorated. Currently she has been stepping over “holes” when she walks and is unsteady - she seems very uncomfortable about what is in front of her and it takes me and husband a long time getting her to go upstairs with us to her bedroom. She is also perfectly happy conversing with people whom are not actually there. When me or my husband tries to communicate with her, she is startled and doesn’t want to be touched. She is able to understand about eating. I have to touch the food to her mouth and then she will open her mouth.
So, my husband treats her like she understands everything and that she knows who he is. When, in fact, she doesn’t. He almost insists that we bathe her regularly; but, my mother in law is scared and doesn’t understand. My husband also has health issues and frequently gets tired being with her. This is scary! He told me that passed out a couple times while trying to get her off the floor. (She was sleepy and didn’t want to get up) I have spoken to my husband and told him that we need to stop... just wash her with wipes. He doesn’t want to listen. He is in denial and part of me understands completely. But, then he tries to find ways of bringing her with us for a vacation! I have said that it is best to have someone else stay with his Mom. We need time alone... at times I feel unimportant compared to his Mom. He seems to always put her first. Anyway.. he frequently says that we will have 15 more years with her. I, sadly, don’t think so. Sometimes it feels as if it will be within the next 2 years - or even less.
Does anyone have suggestions of what I can do? Should I try and keep talking to him? Or just let him figure it out on his own? Thank you for any input.

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Perhaps you can get a video on dementia for families , so he can understand the stages of her dementia , this also help him recognise the signs of the stage she is at now and the level of care she really needs , seeing it in a video may help him to accept this and could be beneficial to his mother as well and take the burden off you, therapy is required to assist dementia patients to avoid deterioration and hopefully he will realise this
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It sounds like your husband for whatever reason is in denial and he is obviously going into dementia. I would stand up to him very, very firmly and tell him like it is and set boundaries with warnings of consequences if he keeps it up. I would also have him checked for possible medications, etc. Do NOT, under any circumstances, give into him because if you do, YOU will be joining them and you do not deserve that. I would look into a caretaker to relive you or better yet, start looking to place BOTH OF THEM so you can live a normal life. I couldn't put up with this and wouldn't.
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I want to apologize for my Latin edit. The original poster may not know what I was referencing and it does not matter anyway. I am truly sorry.
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Imho, the statement "He told me that [sic] passed out a couple times ....." is missing an element. I am unsure if HE passed out or SHE passed out. Irregardless, your husband needs an appointment with his physician. Prayers sent.
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The sentence "He told me he passed out a couple of times while trying to get her off the floor" is deeply concerning.

First, why was you MIL on the floor? Because she was sleepy? It is not normal for a person to sleep on the floor or suddenly have to go to sleep and sink to the floor. Did she fall? Did she sink to the floor because one of the "holes" scared her? (More details on the "holes" later.). Were her legs too weak to carry her? Why she is falling should be discussed with her doctor ASAP. Falls are one of the top causes of death for seniors. They may survive the fall, but many seniors do not make it through recovery.

Second, the "holes" that your MIL sees are part of her disease. Depth perception is affected as Alzheimer's destroys the brain. Bathtubs are a bottomless pit. Area rugs are a bottomless pit. Doormats are notorious bottomless pits. Stepping from a light rug onto a darker floor is stepping off of a cliff. If there is anyway you can remove rugs and mats in your home and contrasting floor colors, it will make your home much safer and make you MIL feel safer.

Third, that your husband has passed out a couple of times caring for her says he is not qualified to be a caregiver as he is unable to provide a safe environment for your MIL He could fall on her and could be unresponsive long enough that she could injure herself or elope (leave the house unattended).

Fourth, that your husband has passed out a couple of times says that he has a medical condition that needs to be investigated promptly. Altered mental status (passing out) has a variety of causes from minor to serious A few examples are electrolyte imbalance, coronary issues, kidney infection, stroke, seizure, environmental and syncope,

You and your husband have been caring for her for a long time and I imagine that you are feeling more and more helpless. This is his Mommy and your husband is seeing his mother gradually lose herself and he knows her death is coming. He feels powerless, so he is doing everything he can to keep her "alive." I put alive in quotes because it is not just the physical act of living, but the memories of who she is. A very loving and empathetic conversation with him solely about the mother he is losing might help.

You are a good wife and DIL and you are right to want time for yourself and your husband. The caregiver has to take care of oneself first (emotionally and physically) in order to give the family member the care they need. A break from the care giving, whether it be a cup of coffee in the park or a vacation, are absolute necessities for your well-being and your husband's well-being.. Take your husband and your MIL to their respective doctors and find out what is causing their problems. See if you can, find a doctor that specializes in dementia as most primary care doctors are not well versed in the subject. (Where I live there is a four-month waiting list to get into the local center on aging and dementia.) When you know your husband's and you MIL's medical conditions, you can plan according to their abilities. Keep an open mind about possible outcomes and remember that you come first. You can't help your loved ones if you don't take care of yourself first. Best wishes.
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He knows...say what you said here.
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He will understand in his own good time. It's different for everyone. It is grief.

I don't know if she is able to get an eye exam, but she could have something going on like macular degeneration that makes her see holes or something strange on the floor.

Find some articles about the water thing for him to read. I've heard others say that people with dementia become afraid of water and then talk to him about it. He certainly wouldn't want him mom to be scared while bathing, so no need to put her through that fear several times a week, or daily.

I don't think he's putting her ahead of you entirely. He is just putting a person who has more needs at the top of the priority list. If you are getting tired of the 24-7 caregiving, have the doctor order in home health. They can do the bathing, change her sheets, clean up her area for her. A nurse can come by at least once a week to check in on her, do blood work when needed, urinary tests to check on UTI, etc. Get some help to give both of you a little rest.
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I am so sorry you are dealing with this.

Were I you, this is the conversation I would have with my husband:

"My love - you seem to be in denial on how bad your mom is doing. And I understand that the thought of our parents becoming sick, declining and dying can be terrifying. I also understand your need to take care of her, and I will *try* to support you to the best of my ability.

BUT - I have noticed some issues with YOUR health that I find very scary, and my first priority is YOU. So this is what I think we need to do:

1st and foremost - we need to get YOU to a doctor for a complete physical. That you have *almost* passed out while trying to pick your mom off the floor really scares me. And it should scare you too - how well do you think mom would fare if you *completely* pass out while trying to pick up mom, and you drop her/fall on top of her? We have to know together, exactly how much care we are PHYSICALLY able to give your mom. If, for instance, you are having heart issues, you might end up being limited by your doctor as to how much you can physically do. We need to know definitively how physically capable we are to take care of mom before we get in any deeper in caregiving.

2nd: While we continue to take care of mom in our home, I need to have some alone time with you. If that makes me seem selfish, then so be it - I am ok being called selfish. But I need to have time with you that is solely our own, just you and me. I need to know that I am your first priority, just as you are mine. And I need to see this by way of your actions, NOT just your words. So while we are taking care of your mom, we will make it a priority to carve out "alone" time - be it vacations, date nights, etc. But for me to stay in this role of caregiver, I need my needs to be met, too.

3rd: and possibly the hardest - I need you to recognize that there will come a time when taking care of mom in our home will simply not be sustainable. I don't know when that will be, but we both need to recognize that fact. I think we BOTH need to start going to her doctor appointments, and start to come up with a plan going forward, so we are not pole-axed when the day comes that she begins to wander out of the house; that she becomes violent with one or both of us; when she begins to refuse to eat/drink/take her meds, etc. or any of the other terrible things that dementia does to people. If we start to plan now, it will be so much easier for everyone - and I include mom in this - once the time comes."

If you feel what I wrote will help, by all means feel free to use it - or change it how you see fit. You can even print it out for him to read - sometimes it's easier for some people to communicate that way.

If your husband remains in denial, and you're not willing/able to leave, then unfortunately it's going to fall onto your shoulders to plan for the future. I suggest you educate yourself as much as you can, so when the time does come you are making your decisions from a place of being informed rather than a place of desperation.

Good luck, I hope your husband will listen and come around to see you want what's best for both him and his mom!
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notgoodenough Jan 2021
And just to clarify my post - I do NOT think you're selfish to want to be number 1 in your husband's life - I hope I didn't come across that way. I included the "I'm ok with being called selfish" to curtail any attempt to change the subject (by your husband or anyone else) by telling you you're selfish, and expecting you to argue that point, thereby delaying the more important conversation.
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I agree with others that say your husband needs to have a full in person work up on his physical health. Then you both need to attend his mother’s doctor appointment so that the doctor can explain to him what is going on with his mother and the best care for her. Caregivers have to be in the best of health and have to understand all the care that is needed or have the person placed where they can get it.
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Sounds like your husband needs his own medical appointment, not just due to the denial, but his own health and capability to sustain this level of caregiving. Please get him seen and go along to discuss the passing out, the heavy lifting from the floor, and the continual stress of caregiving of a person with dementia
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Sadly what happens is all well meaning, you enable this to continue. Your husband has passed out? Well, he may be in need of bypass surgery; he may have health issues of his own. He may well pre deceed his Mom. And then she WILL go into placement. Be certain you have all the paperwork together for when that happens.
I honestly don't know what to tell you. You may not have 15 more years with MIL, but you may have 5, and I think it likely that one or both of you won't survive it at this point.
If it were me, quite honestly I would tell my husband that I believe he is in denial, that I personally cannot go on in this care, and that I refuse to stay and watch him die doing it. I would tell him that sadly I need now to leave him in the care of his Mom, as he insists to do it. That I hope to move to studio or room nearby and will attempt to do some minimal help of shopping, appointments, etc for them, but without placement for Mom being a consideration, that's the best I can do.
I would not kill myself. I would not stay helplessly watching my husband kill himself. If he chose to do it it would be without an audience, and without my help.
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Sounds like HE may have the problem. Advisers always say "talk to their doctor" about it. But how can you do that without them there? We have a system called My Chart online from our doctors and I have been able to e-mail a message to my partner's doctor about her condition and told the doctor it was confidential.
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What sort of medical followup was done for your mid-50s husband after he passed out a couple of times?

Has he seen a cardiologist?

What is your plan if he predeceases his mother?

I think I would insist on HIM getting a complete workup, make sure that you are there (or send the doc a note beforehand) to explain the stress he is under with his mom.

Perhaps the doctor will be a better explainer if why he needs to take care of his own health.
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If your husband wants to put his mom first, that's ok. Let him. Then he does all the work. Stop being the one that is supposed to do it. Its time yor husband takes care of her. Sounds like he is putting it all on you. If he wants to bathe her let him. Id refuse. Elderly dont need frequent showers/baths. It is bad for their paper thin skin. The longer you do all the heavy lifting, the more your going to get tasked with it. Almost passing out isn't passing out. So id leave her on the floor and say your not going to wrench your back trying to pick her up. Let him do it. Sounds like he wants to get out of it. Id say if your having trouble doing it, then I can't either. Is mil falling on the floor, or trying to sleep there? Pick your battles. If its to hard to move her, put a blanket on her. But I wouldn't like someone on the floor, but if she decides to keep doing what are you going to do?
Id say I'm burned out. Its up to you to do it. Or get help but your done. It is a lot to care for someone 24/7. Id make him do it. She is his mom. Id tell him your in denial, so ill let you deal with it.
Id go on vacation with a friend. Leave those 2 behind. I wouldn't do it. You have to make him see that it is too much for you.
Your going to have to make him do it to see how hard it is. Just say your burned out. If he's too tired too bad. So are you. There is nothing wrong with getting help and having a break. You deserve it. Doesnt mean you don't love her, just means your burned out. Good luck
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Your husband probably feels it is his job to care for his mother, and since you are his wife - it is your job too. The stepping around holes on the floor may have more to do with her vision than with her dementia; consider having her vision checked (especially for macular degeneration).

It might be time to streamline some of MIL's care. "Airplane baths" are fine for most days - cleaning under the "wings" and "tail" but a full cleaning can be done with sponge baths in a very warm room. Since you want to travel and have some time alone, please consider allowing other people to help care for your MIL. Ask family members, friends, members of community of faith and even paid help. Consider turning a downstairs room or portion off an area for her bedroom. Consider "lift devices" to help her when she is on the floor.

If your husband almost passes out when helping her off the floor, it might be time to consider that your MIL can not be cared for in your home anymore. Research residential facilities in your area and talk with their administration personnel about visitation policies.
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Nothing wrong and it isn't hurting anyone with her seeing and talking to someone that you don't see as it's just part of the disease.

If there isn't a room downstairs for your mom to turn into a bedroom, then have a Stair Case Chair Lift Installed On Your Staircase where she can just Ride Up.

Let husband start doing more in the care of his mom so he can see 1st hand whst you are trying to tell him.

Also buy books on the subject and have Dr tell your husband how people with alzheimers and dementia do not like change and are happier staying home in a familiar environment.

Also, your mom doesn't need to be cleaned up but a couple times a week.

In fact, old peoples skin are thin and dry and water will just dry it out more.

How dirty can one get staying in the house all day anyway.
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I'm not sure if it's important to know what stage of dementia your MIL is in. Your trying to convince hubby of her worsening condition doesn't seem to help so I wouldn't continue to try. I think at this point it may be more important to address your husband's health issues. It's hard to say how long your MIL has, certainly not as long as he thinks. MIL is on a one way street, a journey there is no escape from. You and DH need to be concerned about your own health.

You may feel snubbed by the care and attention he gives his mom, but I think he realizes there is something wrong with her and he is trying to help. If your and his mom's roles were reversed, his mom may feel snubbed. I know that doesn't help but dementia causes family dynamics to change considerably. He doesn't understand her disease and trying to help him understand isn't working. At some point, he'll accept the reality of her disease. So make an appt with your husband's PCP and address his health issues.

And absolutely, no vacation!!
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It is hard for some to accept the mental decline in their loved one. I think your husband is probably already aware of what is going on with his mom, and instead of accepting it, is choosing to live in denial, as that is easier for him. Perhaps next time she has to go to her Dr. have your husband take her,(and you in the meantime message her Dr. vis the patient portal with everything that is going on, so he/she has a heads up)and then her Dr can address things with your husband, so he better understands. It may also be time to start addressing placing mom in the appropriate facility, as it sounds like your husband won't be much help in the future, with him having his own health issues. If you are going to continue caring for your MIL in your house, for the time being, you really need to hire some outside help(with her money), so you and your husband can get away and have some fun, on a regular basis. And if your husband doesn't want to do anything, you can leave him with his mom and you go out with your friends. You must take care of yourself. Wishing you the best.
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It is very possible that I could become the caregivers of my husband (mid 50s) as well as my mother in law (78). I don’t want to be in that situation and that scares me! Thankfully he is currently healthy.... as good as can be expected; but, stress is not good.
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DILKimba Jan 2021
Do you think it would be possible to get a consult for your MIL with a gerontologist or even a neurologist who works with Alzheimer’s/dementia patients to evaluate your MIL and also tell you both what to expect, what her abilities are, etc. sometimes men have a harder time with that. If a “professional” tells them, then they sometimes accept it better. I also had my husband and his brother read a book called “When Reasoning No Longer Works: A Practical Guide for Caregivers Dealing with Dementia and Alzheimer’s” by Angel Smit. It is not a long book and you can even download it from Amazon. It really helped my husband and BIL a grasp the downward spiral their parents were on.! I wish you the best!
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Sorry to hear that you and your husband aren’t on the same page about his mother’s care.

How old is your husband and how likely is it with his health issues that you might find yourself a solo caregiver to two people? Would that be OK with you?
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