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My husband, 77, is in the mid-stage of his neurologist’s diagnosis. What has become most difficult, as his sole caregiver, is his inability to recognize that anything is wrong. I have to hide the car keys, drive him to every appointment or errand, using all sorts of stories to allow me to take charge.


The few times that I tried to explain his condition, my husband became belligerent and cursed me. I have certainly avoided the attempt to make him believe what’s happening. That cannot be possible.


I am at my wits’ end. My children live far away and offer advice that does not take into account what is happening. My husband is not going to agree to adult day care or bringing aides into the house. The best I’ve been able to do is to have my cleaning woman come twice a week. My husband’s shadowing me and his turning into a Mr Hyde at night are just a couple of my husband’s symptoms. I just cannot leave the house without his wanting to join me. What on earth can I do?

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I am so sorry that you are struggling with this. I do not have much experience with Alzheimers.

Others on this site are very familiar and can help you. Stick around for answers.

I sincerely hope that you get some relief soon. Sending hugs and prayers your way.
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Can you investigate a more supported living situation for the two of you? Having staff available who are trained in how to handle dementia behaviors would be very helpful for you.

We found a senior living facility that had levels of care. The well spouse had much more support- both from the staff and from other residents caring for ill spouses.

A conversation with an Aging Life specialist or Social worker knowledgeable about the facilities in your area would be a good place to start.
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gladimhere Oct 2020
Also called geriatric care managers.
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I’m thinking that your best hope may be with the neurologist. Have you considered asking him about the possibility of prescribing a mild mood stabilizer to help your husband remain more peaceful as your decision making responsibilities increase? Or perhaps recommend a neuropsychiatrist familiar with the needs of someone in the situation you’re dealing with?

Do NOT feel uncomfortable using “all sorts of stories” as long as you can manage his care by doing so. If his circumstances and yours can be peacefully dealt with using this technique, it is both fair and reasonable and kind to do it.

Please remember that YOUR SAFETY AND COMFORT are important to HIS welfare, and also that if he were well, he would appreciate and respect your efforts to do the best possible for him.

Your state or county may have resources for caring for the elderly, and it may be worth it to give that resource a try too.

Hope you continue to visit here......
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You should not leave him alone, sounds like he is past being able to be safe alone. Unfortunately this is part of dementia. He will not recognize there is a problem. And you shouldn't remind him. That will cause agitation.

Is he on any meds to help with his sundowning symptoms and behaviors?
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If he is already seeeing a neurologist, and that doc hasn't got any interventions to try, I would consult with a geriatric psychiatrist.
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His "shadowing" you and "Mr. Hyde" behavior concerns me for YOUR sake; he could actually hurt you. Is it time to have him in a memory care facility for BOTH your sakes?
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It is better for you to have him with you than to be left alone. Are their family or friends that could come over to chat with him to give you a break? My husband also refuses to admit anything is wrong and we dont discuss it. I know and that is what is important. I had to be concerned about him driving and killing someone. So I disengaged the battery on his car and kept telling him I was waiting on AAA to come. After about a month I told him AAA needed to pick it up because they think its something electrical. Because I have Power of Attorney and sold the car. I had to get it out of sight. Its been 2 months and he has not mentioned the car
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Invisible Oct 2020
My father called AAA several times on his own to "fix" the car when actually the battery ran down for lack of use. He kept wanting to replace the battery but fortunately, AAA told him he didn't need to. He eventually gave the car to my sister and then thought someone stole it. When she came to visit, he didn't recognize it was his car. The one he thought was stolen was a previous car from years ago.
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I have the same problem, maybe not as bad. My husband does not recognize his dementia, although he knows the diagnosis and is receiving treatment (aducanumab infusions). In the moment however, he refuses to acknowledge any deficits and gets angry at me if I say anything that suggest he is not fully capable. I do have nearby family but with COVID we are not seeing them. I get out to work, part time and that is a huge help. It is still difficult and I feel I have lost my husband who was my best friend and always my protector and always in charge. Not now.
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1st thing, your husband's Dr should be telling him what is wrong and that he can no longer safely drive.
Hide his Driver's Licence and take him in to get a photo ID to replace his Driver's License.

Let husband shadow you to an Adult Day Care, even if he thinks it's for you and not him. Maybe after making some friends and or playing cards, ect at the Day Care Center, he'll want to go.

Let him shadow you doing things like getting a manicure and Pedicure, shopping for clothes, window shopping. Join a gym and work out, even if you just go for the swimming pool workout classes or the sauna, going on walks, ect.
He's probably just bored, and if you tire him out during the day, he might not be as much of a Mr Hyde at night.

Bup a couple books about it and let him see you read about it even if he thinks you're reading about it for yoursekf not him and leave it lying around, maybe he'll read it himself or adk him questions about if you do this or that but don't tell him he does this or that and he might think on his own that yeah, I do this myself.

Prayers
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choice is the key, I have my own therapist to help me thru this very awkward time with my mother. Your husband is no longer an adult that can make choices for himself. If I may suggest, the choice is yours and it is not easy. Would you give a child the choice to go to day care? Would you give a child a choice to have a babysitter? I know he is not your child, however he is child like. He may not like it but he will get used to it. And you will have some sanity time for yourself, it is important that you stay sane for both of your sakes. It is just loving him and yourself enough to do what works best for both of you. Why do we choose to suffer by trying to make them happy while sacrificing our own happiness. This only leads to resentment and how can we live or want to be around someone we resent. Choose happiness or at least sanity for yourself and end the needless suffering. My heart goes out to you and I wish you a peaceful solution 🧚🏼‍♂️💕
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pronker Oct 2020
Excellent reply to the OP and very compassionate. /happiness or at least sanity/ is certainly a keeper as a wise phrase.
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The sad part about Alzheimer's disease is that the patient does not know he/she has it. Their lack of discernment is usually the first signs family and friends have. Please consider joining a "senior club" (aka adult day program) to get your hubby acclimated to being there regularly. You may have to be with him for the first weeks and then you can leave him to get your nails done, hair done, your lady doctor's appointment.... He'll probably not want to go with you for these. Please have a few more "friends" (aka friends, family, home health care aides...) join you throughout the week. Ask them to play games with both of you, help on days you don't have a housekeeper, have a meal with you... Eventually, you can have some come to visit while you "run a few quick errands."

If he is routinely turning into Mr. Hyde at night, please talk to his doctor. He may be more frustrated and anxious at night as he gets tired. His doctor could prescribe him a mild sedative to help him relax and be more compliant in the evenings. If he gets violent with you, please call EMS; he may need a short stay in a geriatric inpatient psych unit to work on behavior modification.
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Dear Florimond,

I'm so glad you wrote about this. The Anosognosia diagnose means they don't know or believe that they have this. This sounds exactly like what my Mom has, its been a struggle just to get her to the neurologist, then when she got home cancelled all tests and follow up appt's. Ugh!!!

Is there a friend or someone from Church that may come to visit him? If it's able to become a regular visit that may be how you can get out on your own.

I wouldn't try to explain the diagnosis. Clearly its upsetting to him and not enjoyable for you either. Maybe try to talk about when you first met. How things were back then, etc. Something enjoyable. Maybe that will make him more relaxed and not so difficult at night. But if not, I've read on this sight about sundowning, although that might be if they are up all night. But something to talk to the doctor about.

If you have children. They need to plan a trip home, once, twice a year at least but not both kids at the same time. All you and your husband did for them growing up, its the circle of life and will give you sometime to relax to. We are not getting any younger.

Hope this helps you some.
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Invisible Oct 2020
Since the diagnosis is frightening, I wonder if it isn't kinder to them that they don't accept and dwell on it. Yes, agree the kids should find a way to get home at least to visit. One day they will be sorry if they don't.
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I don't exactly know what anosognosia means unless it means "not recognizing", but I think most people diagnosed with dementia or Alzheimer's go thru different stages, ones that don't think things are wrong, sexual stages, mean stages (cursing like never before), etc.  Is there anything the doctor can prescribe that can calm him down a little (nothing majorly heavy sedation).  Maybe you can explain that "the drivers today are so wreckless, that its not safe for him to be driving" and that you can do the task.  (I had to tell my father that so that he wouldn't want to drive, thankfully he didn't put up a fuss). But I would continue to keep the car keys from him and just do all the driving, tell him that you actually like being behind the wheel.  It is hard for others to understand how things are unless they have actually had to deal with it, etc.  And of course it seems that things get a little worse at night.  Maybe you could find some lavender sachets to "hide" around so that come evening it might help to calm him, or use a lavender scented lotion and tell him that you want to keep his skin soft and use it on him.  play some soothing music (or whatever he likes to listen to), to help calm him.  Does he have someone he likes to visit (an old friend, etc) that would be willing to come visit so you can leave for an hour or two?  I wish you luck with this.
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Following Bevthegreat response, about adult day care.
My husband didn't understand his disease or limitations either, but he was a danger to himself and others. I had managed to talk with him about not driving, and the danger he put me in by taking the right of way on a left turn on a 2-way, 6 lane green light, but it was not easy.
About day care. He didn't want to do that either. But one day I took him to sign him up, told him I had business to take care of. He didn't know what the building was. He had to sit in the waiting lounge that was open he could see me, I signed him up, then we left. Later in the week I took him back and took him directly to the room, got him introduced to the "teacher", stayed with him a while, told him I had an errand, and left. He didn't follow, but was not a happy camper after I left , I understand he just sat on the couch, then looked out the window for a long while. I went back 4 hours later to pick him up. Didn't argue, or scold me about leaving him, or anything.
Next luncheon date, I took him again. This went on for another week, then I started taking him 3 days a week, then 4 days a week. He didn't always participate in the activities, sometimes watching out the window for me to return. I started him with 2 hours, then 4 hours, then 5 hours sometimes. It gave me some time to get a haircut, shop, do banking, visit with friends, lunch, etc. Better for both of us. Not always easy, but my husband was not belligerent but still not happy. Didn't want to go again, but did as I brought him, they took him to a table with other persons, and I just left quietly. Didn't say goodbye.
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Don't waste your breath trying to explain the condition. If I don't know I'm sick because my brain is broken, I'm never going to believe you and we'll probably end up in an argument about it. Talk to doctor about night time issues and perhaps there is a med to help calm him.

Increase the hours for cleaning woman since he knows her - ask her if she can assist in the role of aide to do things for him. You say you cannot leave the house without him wanting to go with you. If you were to leave the house without him, who would be at home with him? That person might also be able to come in as a 'cleaning lady', but actually provide aide care for him. On the other hand, he may not even need any kind of aide care if he can still manage himself in the way of bathing, hygiene, making a meal, etc.

Tell the kids it's time for them to come (one at a time) to participate in the 24/7 life that you have right now. When/if they show up, let them be the caregiver and you leave the house. You have to participate to give advice. Should things deteriorate further and you have no choice but to place him in facility, there's a good chance one of the kids will not want you to do it. Don't allow them to criticize or offer advice if they haven't actively participated.
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I agree with my2cents’ reply. Great advice. It’s difficult to transition from a partnership as a married couple regarding decision making, to just you as the decision maker, but it has to be ... because you now have the role as caretaker and you are heavily affected by your husband’s illness.

If “cleaning woman” is the title he accepts, then heck .. all helpers and caregivers whom you may get to assist become “cleaning women.” Whatever title your husband accepts for people to come into the home and give you a break is ok.
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First of all, don’t try to convince him or tell him there is anything wrong, that he forgets, doesn’t understand, etc. Go on as if everything is normal even though you know it isn’t and you will do everything you can to make things safe. I am speaking of one that is going through this for the second time. First I was caregiver for my mother and now my husband.

The best thing for both of you is keep things calm, even if it means less said, don’t react. Many times it’s how we react that can set off upset with one with this disease. No matter how you want him to change, he can’t, so save your time and nerves. Remember he is not acting the way he is because he wants to, it’s because it’s how his brain is or isn’t working. It is very hard to see and experience this happening.

I have not left my husband alone in over 3 years. He has not driven in over 5 years. He now has only 1% memory left. Does he know that, no and I make that ok. Conversation is about the weather, birds, trees, what we are eating, etc.

I learned long ago when caring for Mom, it is me that needs to adapt and that things can change in a second. I never hesitate to tell him how much I love him. As I did on our 60th wedding anniversary 6 days ago.
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ljhansen77 Oct 2020
God bless you!
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Imho, the lack of ability that they have the disease of Alzheimer's is because their brain is broken. If you try to rationalize that, you are not going to be successful. Prayers sent.
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I pray you receive my instructions. You can no longer recognized him as your husband although he is your husband. You have to gain his trust so he will do the things that you possibly need him to do. If you do not get into his world and continue to force him into the present he will become aggressive. The first thing you need to do, get out of your mind the good old days and embrace the new. I took care of my mother-in-law who was diagnosed in 2005 with the same condition has your husband. My husband and I moved into their home to care for his aging parents. His mother only knew his deceased wife, so she would call me her name. Once I built her trust and allowed her to figure things out on her own. I became her and she which was find with me. I know you love your husband and attempting to do everything that you possibly know to do. Your assignment is to study him, observe what he like and dislike during this new season in his life. He do not desire to be treated like an infant. He knows something is wrong but he do not want to let on that something is wrong. He is attempting to figure it out so he can continue to function. I had to pray every morning before I started my journey with my in-laws to help them and not what I desired to do. I had to get into their world so they could be happy and If they were happy my husband and I were happy. If he urinate on himself by accident do not scold him but help him keep his dignity. Put yourself in his place and ask yourself, how would I want to be treated if this was me. For your sanity you have to override him and get a caregiver to come in starting once a week to allow you to leave the house at least for six hours. You might have to go through several caregivers to find the right fit. You need a caregiver that speciality is Alzheimer's Disease. Let your goal be three days a week caregiver M, W, and F or T, Th, and Sat. I know this will work for you. Stop stressing and embrace the moment. Explore your options, and redefine yourself and enjoy the moment.
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