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new, caring for MIL with dementia please read.


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Old 04-24-2012, 07:51 PM   #1
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new, caring for MIL with dementia please read.

I just started caring for my MIL she is 64 and her dementia has worsened in the last 4 months...my question is about correcting when she is either hallucinating or very confused I know that your not supposed to correct but she has thought there were drugs hidden in her room and wanted me to dispose of them before the police come and also she thought there were strange men in the house to rape her....that seems like something you cant just let go with a nod and change the subject...has anyone else experianced problems like this and what advice does anyone have for me??

 
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Old 04-24-2012, 09:15 PM   #2
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Re: new, caring for MIL with dementia please read.

Hey there Cap - First of all, welcome to the board. Sorry for what you're going through, but glad you found us! There are other folks who have had more experience than I have dealing with hallucinations. I can see how it would be difficult to know how to respond. I definitely did alot of agreeing in the 3 years my stepdad suffered from dementia, but he didn't ever hallucinate so it wasn't too difficult to pick up on what he was currently thinking / believing and just go along with it.

As much as possible it is better for them and for you to basically play along with wherever their mind takes them, but I will let others who have had first hand experience with hallucinations offer their sage advice

I'm wishing you and your MIL all the best as you walk the land of dementiaville......

 
Old 04-24-2012, 11:41 PM   #3
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Re: new, caring for MIL with dementia please read.

Welcome Cap... Glad you found us though hate you needed to. Yes, I have been through such with my Dad. Hallucinations and delusions do happen frequently in dementia.

The problems with delusions and hallucinations is that our loved ones believe them to be true. Their reality is as real to them as ours is to us. If we see somebody in the front yard with our own eyes nobody would convince us that this person was not there. That is what you would be doing if you tried to convince your Mom that what she believes to be true is not real. Since they believe in their delusions and hallucinations there is no way to convince them it is not so... so why try?

Distraction works and you can do it repeatedly. They do not remember what you did last time, they only remember the delusion which recurs. Have followed my Dad through his delusions before. I have run off the burglars, I have mustered the troops, and I have even checked on the boys killing hogs. I have thrown out wadded up paper towels that had all kinds of illegal and strange things supposedly in them.

What I started with was validating his emotions. "Dad I know this person is scaring you." or "I know this is upsetting you." Then I would assure him that I would do everything in my power to remedy the situation. Then I would assure him that it would be ok. If necessary I would let him walk outside or check behind the door. Many times I could calm him enough to distract him. And on really bad nights I would just give him a half gallon of butter pecan ice cream and a spoon!

Just remember that their delusions and hallucinations are real to them. To deny their existence is to tell them that they are mistaken (wrong) and have no idea what they are talking about. That will only make them more upset. At that point, not only do they have something that is scaring them, they also have the one person they have faith in denying that it is truly happening.

Do the delusions of the men in the house happen in late afternoon or at night? If so they may be a result of shadows. Turn on more lights to eliminate the shadows and that might help. The other problem might be a TV or radio. They have difficulty in determining what is on TV and what is real. If they see a man on TV that looks suspicious or hears a voice coming from a TV or radio... they might thing he is actually in the house. She might have seen prescription pills and mistaken them for illegal pills since she doesn't remember having to take medication. Try putting her medication out of sight if it is where she can see it. Many times there is a connection between delusions and reality but they mistake what they are seeing for something sinister. Their version of what they see is not the same as ours.

If it occurs more in the late afternoon or evening it could be sundowning. Nobody knows why but many dementia patients are worse in the late afternoon and evening.

If Mom gets too upset about this delusions and hallucinations, talk to her doctor. There are medications that can help

Hope to hear from you again soon... and again welcome to our little corner

Love, deb

 
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Old 04-25-2012, 07:58 AM   #4
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Re: new, caring for MIL with dementia please read.

Thank you guys so much for responding I was hoping I didn't find an old board where I would have to wait a month or never for a response such a relief this morning to see your reply's!! thank you.
The more I educate myself the easier it has been to take care of her, at first I thought it was her tricking me since she has relied on pain pills the last 30 years and will often make up reasons to get more but Im just going to suck it up and treat all ailments and things she says as the dementia and not try to figure out which is true and what is her just saying stuff.
She likes the dark so its going to be hard with the stuff about the shadows but I will make sure to turn lights on and show her the stuff she is seeing is no longer there.
The bad people usually come about 4am to about 6 and she says she needs her percocets to calm her down.
Its a double whammy having her dependent on pain pills and having dementia.

sorry to ramble on just nice to get it out there.

also I have a question about toilet time she sometimes forgets how to use it and thinks its this new high tech toilet its a plain old toilet so I patiently tell her how to use it and show her the toilet paper even sometimes give a demenstration on how to use toilet paper and without fail she wipes with anything but the toilet paper...the shower curtain..towels...her adult diapers..and then she puts them in the toilet.

 
Old 04-25-2012, 08:54 AM   #5
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Re: new, caring for MIL with dementia please read.

This is definitely an active board and has been for many years. I remember the relief I felt the first time I posted and received an answer It is nice to know there is somebody out there that understands.

You Mom's dependency on pain medication does complicate your problem. These medications themselves can cause delusions and hallucinations as a side effect. Being dependent on the medication may explain why her delusions involve drugs. A lifetime of taking pain medication residents in her long term memory. Now she has no short term memory to take that away. It makes you wonder what the drug habit has done to her over the years. It also makes it difficult for you to know what is real and not real when it comes to her pain management.

The time frame of her delusions and hallucinations indicate night terrors may be to blame. Dementia patients are known to have very vivid dreams and difficulty being able to distinguish between dreams and reality. If they dream it then it is real. The lights work for sundowning and night shadows but you would not want all the lights on while they are sleeping.

Toileting becomes more and more of a problem as they forget the appropriate ways to deal with their needs. Remember that Mom does not have the ability to remember. Her ability to retain what you are saying to her is very limited. Mini sessions on how to use toilet paper are gone before you leave the bathroom. I found it useful to eliminate anything in the bathroom that was not absolutely necessary. Any container that can be mistaken for a toilet should be removed including trash cans. Put them under the sink out of sight. Leave towels out of sight and tie back shower curtains. Leave out toilet paper, tissues, and wipes. Hopefully she will chose one of these to use. If she claims that the toilet is a new high tech toilet, just agree! What she is really telling you is that she doesn't understand it. So rather than telling her that it's just a basic toilet that she doesn't know how to use or confusing her further with instructions... just comment that it's nice to have a new toilet and then help her. That helps preserve her dignity when she is truly lost as to what to do. Know this problem is not going to get better. You will need to go with her to make sure that the right items are used and deposited in the right place. Just do it in a way to maintain her dignity as much as possible..

It's a learning curve for sure

Love, deb

 
Old 04-25-2012, 07:39 PM   #6
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Re: new, caring for MIL with dementia please read.

Thanks again, I will clean house on the bathroom tomorrow soon as the kids go off to school!
We are in transition right now she's staying in my room until my husband decides whether he wants to move us to a bigger house or look into a nursing home so I will just get a little plastic tote and take everything out of the bathroom, unfortunatly I can't do the same for the bedroom so sometimes I wake up to the room looking like the canine unit came through there lol when she thinks her wallet is missing.
thanks again

 
Old 04-25-2012, 08:33 PM   #7
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Re: new, caring for MIL with dementia please read.

Kids How many and what ages? Boy you do have your hands full with little ones and MIL.

Hint hint... when hubby makes his decision as to keeping MIL at home or placing her in a care facility, ask him how much he plans to do hands on care for his Mom. You do need a voice in this decision since I suspect that you will be the one doing the one on one care

I had to chuckle at your description of the bedroom. It is amazing how much chaos they can create in such a short time searching for something that is not lost. Dad's wallet was a BIG issue. He could never remember to take it out of his pants pocket and it was washed repeatedly. He would forget to put it in his pocket in the morning. But sometime during the day it was stolen out of his pocket. Quickly we learned to transfer the wallet from today's pants right to tomorrow's pants. There were expired credit cards, laminated copies of ID's, a five dollar bill, some laminated pictures. I actually had two identical wallets. One actually got lost and the second on would appear until the first was found. It might be helpful to put her wallet with an array of important looking cards and a few dollars in it on the night stand. Might be helpful and save you redecorating the bedroom every morning

So are you ready for the 24/7/365 job of care giver? I might make a suggestion. If you do decide to keep MIL at home you might want to find an adult day care that she can attend for a few days a week. Fine a care facility that has respite care so you and hubby can get away for a weekend occasionally. Find a good agency that can send in a care giver if MIL starts keeping everybody up at night or if you need time during the day for you and the kids. Just don't try to do it alone because it can be overwhelming.

Hope your morning finds the clothes still in the closet!

Love, deb

 
Old 04-26-2012, 09:00 AM   #8
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Re: new, caring for MIL with dementia please read.

Great idea about the wallet!! her daughters constantly stole her money so she is always looking for it.
I have 3 kids..a stepson just turned 13 a son 5 and a daughter 3..and Im also a nanny so I have 3 extra tues-fri !
She has medicare and a nurse aide that comes out mon-fri for 4 hours a day..sadly my mother inlaw has started disliking her and refuses to let her bathe her so the nurse aide holds the baby I care for and I bathe her lol.
my husband won't help it will be all me I just wish he would make a decision either way I don't like this inbetween stuff Ive been sleeping in my sons toddler bed and wearing the same 4 outfits so I don't go in my room and disturb her too much, plus there is a lot I want to do to make her day easier I ordered a large clock that has date day and time..that seems to be her big thing is not knowing what month it is or time and she gets really upset so I want to be able to set up her living space specifically for her needs.

she only ransacked her clothes this morning, she thought she dropped medicine in her basket of clothes and hubby was fishing all night and was short with her instead of trying to reassure her, Im hoping its not going to affect her whole day....he looks identical to his father and I think it really messes with her...he left her 25 years ago for another woman and they didn't have a good marriage he was selfish and when hubby isn't patient with her she says it reminds her all over again how awful it was in her marriage (she never moved on from it sadly). I told hubby you better be reallllly nice to her she's either going to think your him and hit you over the head with a lamp or try to crawl in your blankets with you lol.

thanks again for your time.

 
Old 04-26-2012, 09:36 AM   #9
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Re: new, caring for MIL with dementia please read.

Cap, you actually have a rather good grasp on reality! It will serve you well. A word to the wise... TOOOOO MUCH!! You can not take care of your three, three more and MIL! If hubby can not or will not help then MIL needs a good care facility. If he is making the decision without being hands on, he is not going to understand what you are dealing with on a daily basis. It sounds like he is battling between guilt and necessity. Guilt of placing Mom in a care facility and the necessity of doing just that. While he battles with his decision you are the one that is going to have to take up the slack either way. He went fishing all night while you took care of it all and then he was short with MIL which set her off and you get to deal with the fall out... HUMMM! I smell danger here.

It is typical for those with dementia to not like strangers in their home. We don't like strangers in our home on an extended basis. Throw in the fact that they don't know why these strangers are there or what they are doing. Mom hated the angel of a care giver we had with her and Dad the first year. When nothing else worked she actually struck the lady several times and then was proud of herself for doing it and running the witch off. That is what finally landed Mom and Dad in AL. At least for Mom it was easier for her to accept help in the AL setting than it was at home. Yet this same lady made a wonderful connection with Dad and he loved her. He even ask about "that nice lady" several times after the move to AL. So you never know... but if MIL is rebelling it might not go well.

The fact that hubby looks like his father can create a problem. You are right about her smacking him or sacking with him. They do get time lines confused so MIL might know you are his wife but also think she is his wife. He may make her angry just by being present. When MIL is living in her past, hubby's appearance can trigger all sorts of bad memories. She will live in that past.

The clock is a good idea in the short term.... as long as she can decipher what it says or remember to look at it. Problems knowing date and time is typical. If nothing else you can show her what time it is in the moment.. When making the decision concerning her future home... remember that day and night will more than like be confused at least for a while and somebody is going to be staying up nights with her. Add a night walker to what you already have and I don't see you getting much sleep at all

It is possible to successfully keep a loved one at home with this disease but it is not a walk in the park. It takes a village including outside help and inside help. It can't be done alone in addition to all the other responsibilities. I just want you to go into this with your eyes open to the possibilities and pitfalls

Love, deb

 
Old 04-26-2012, 09:50 AM   #10
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Re: new, caring for MIL with dementia please read.

Hey Cap - I second, and third everything Deb said . I can already tell you are one extraordinary person to try to take on caring for your MIL on top of having 3 kids, and 3 other kids you take care of. I have to tell you - I am very concerned for you....also for how this will impact your kids. I'm sorry to say, this disease only gets worse

I know part of me really wanted to move my parents in with me and take care of my stepdad, but not only was that unrealistic for many reasons, but really it would not have been the best solution for him, let alone me and my mom. As Deb said, it is possible to care for them at home, but it really takes its toll on people. You are going to need help if you do care for her at home.

I sincerely hope you and your husband can have a conversation about finding a good placement for her. I'm really worried about what this could do to you......we truly care and look out for eachother on this board, so I say this all with love for you and your situation. Let us know how it's going! I'm thinking of you!!

 
Old 04-26-2012, 10:31 AM   #11
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Re: new, caring for MIL with dementia please read.

And while I was getting read to go see Mom my mind keep wandering around your situation Cap.... so I am back before I run out the door. Yes we do have to care for each other here.

So far the focus has been on what is best for you, hubby, the kids. I want to say a few words about what is best for MIL. I will say up front that any move out of her familiar realm will be difficult. It will take time to adjust and you will see where she is cognitively minus the familiar surrounds. She may seem to take a decline in cognition. But beyond that you have to look at what is available on both sides of the decision. Being at home with you and hubby she will be in more familiar surroundings. But hubby is not hands on and that leave it all to you in addition to the 6 kids and other responsibilities. You are going to be exhausted and less capable of dealing with MIL's antics. You sound like a level headed stable patient person but there are limits! In a care facility fresh faces come in every 8 or 12 hours. They go home and get a good night's sleep before they come back and even have days off. If they need that second person to help with a shower or to settle her down that person is quickly available. Not sure your oldest needs to be there to help! Then you have to entertain her. Boredom leads to mischief. So while you are fixing the last problem she is bored and making a new mess. In a care facility there are usually several personnel that do nothing but entertain the residents. And you have to cook also... where as a facility has a kitchen staff that does this chore. Back to the cleaning... you have this responsibility as well where as the facility has a cleaning crew. And you only have part time to focus on MIL because you have 6 kids. In a facility there are 6 or more people focused on your MIL.

There is still a stigma attached to care facilities and dreaded places where we put somebody. In reality there are great facilities that do a wonderful job of taking care of our loved ones. You just have to find the right facility. Our responsibility is to make sure that our loved ones get the best care possible. It is not our responsibility to do it ourselves. So check out what is available in your area. Find a place that specializes in dementia care. Check it out thoroughly and visit it frequently. I can give you some hints on what to check if you would like. Make sure hubby keeps an open mind and doesn't let guilt or stigmas determine his decision

When I arrived on the board here... 5 years ago.... WOW has it been that long ..... I was in the same situation you are in. Some of the sisters didn't want Mom and Dad in AL. They thought Mom and Dad would be just fine at home. I was the one running in and out putting out the fires and dealing with the chaos. There was a care giver in place that Mom hated. Mom was dead set again being "dumped in one of those places!" A wise sole here commented that Mom and Dad were ready when I was ready. It was me that was hanging back from making the final decision because of all the reasons I have stated. They were right. My only regret now is that I didn't make the decision sooner I did the best I could and have no other regrets but I did discover that I was not super woman. I hung up my red spandex and signed the papers never looking back! It was the best for Mom and Dad. Each of us has to make that decision for ourselves and it depends on our loved one. Those that are easy to manage are more likely to do well at home. Those that tend to create chaos need more than you. Even in a care facility you have enough to do!!

And with that I am off to see what this day holds with Mom

Love, deb

 
Old 04-26-2012, 11:09 AM   #12
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Re: new, caring for MIL with dementia please read.

Cap,

Deb has many good thoughts. I never know anyone with early onset AD (Alzheimer's disease) so I cannot really say much about it. I just know that during the course, the confusion is similar to the one with regular onset AD. My FIL has regular onset AD and he is 91 and in severe stage.

What you mentioned are nothing new in the world of dementia. The toilet thing is interesting. Your Mom-in-law thought it is new, and my FIL thought it overflows (with the old toilet back home) and he has to cover it up with the lid!! Everyone has a different interpretation on this one. For sure they all have trouble in toileting. My FIL has pull-up adult diapers and he thought it is underwear. He never admits it is diapers. We have to live in his world and deal with him. The color of the toilet helps. My FIL's toiet seat is blue in his current NH.

About getting a bigger house or a NH: I know your Mom-in-law just started but early onset is faster (like 5-10 years instead of 10-20 years.) Instead of moving her around many times, you may want to get a final permanent place such as a memory unit. If she goes to an AL, you will need to move her to the memory unit again. If you have home care in a new house, it is a new place for her. You have young kids in the house.
My personal opinion is you need to get her a memory unit in a NH now or get a waiting list for her. A good one has waitling lists. We waited 9 months for the current NH.
My FIL had been home with home care for 6 years. It started with part-time and ended up with 24/7 and the expenses were too much. The house was too old and we needed to fix it and sell it... So we moved him. We fixed the house and sold it! There were no kids involved.

I saw a movie about a woman with AD: At first she stayed with her son and his family with a young kid. One night, the Mom got suspicious and held the grandson and wanted to leave! That scared off the parents. So she was moved to a NH.

Young kids and a patient with Alzheimer's are not a good mixture. Your Mom-in-law will be confused and the kids will be scared. A teenager is Ok, but not the toddlers.
For sure the parents of the other 3 kids need to be aware of your Mom-in-law. It is not a good idea to mix up the nanny business with a Mom-in-law with dementia!! Don't wait until bad things happen to your business.

Your husband looks like his Dad. It would not be his fault if his Mom gets confused over him. Nothing your husband can do to stop it. The only way out is to avoid her. If she is sure this guy is the bad husband, then there is no way you can convince her.
Please understand he cannot do anything to trigger her. His look triggers her already. There is nothing he can do about that.

Hope you will find a good way out for everyone.

Hugs,
Nina

Last edited by ninamarc; 04-26-2012 at 12:23 PM.

 
Old 04-27-2012, 10:21 AM   #13
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Re: new, caring for MIL with dementia please read.

Hey Cap Betcha didn't know you were going to find people who care so much about you and your situation, huh?? Well, we do!! Again, I'm with Deb! I really am very concerned for your situation. I'm concerned for you, even though I already know you are amazing.

I came to this board about 3 years ago. That's when I met Deb, Meg, Martha, Diane, Ken and many others who I knew cared so very much.

I hate to be the bearer of bad news, but this does all just get worse. There are a myriad of situations that could happen that could really scare (or God forbid, harm) your kids and the kids in your care - or YOU!

I also wanted to say - I really struggled with having to "put" my stepdad somewhere. After hospital stays, skilled nursing facilities and trying assisted living (!!), eventually we found a fabulous place for him - an adult family home in fact - and it gave him, my mom and me a very special 1 and 1/2 years to be able to spend time with him. I loved that he was in a home setting, where the smell of dinner was on the stove every night. The care was amazing and it truly was the very best outcome for all concerned.

Initially I was afraid of adult family homes (some bad press locally had just come out about them), but we found an incredible one where they kept him until the very end. We brought hospice in at the tail end for him, and he was able to pass away without another horrible ER visit, hospital stay, etc when really.....it was his time to go.

We all just want the best for you!!! Let us know how it's going!

 
Old 04-27-2012, 10:52 AM   #14
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Re: new, caring for MIL with dementia please read.

Hi guys while I have a minute to sit I figured Id respond..I am currently at a standstill and not happy about it..Husband won't make a choice either way and he also adds to her problems he has always joked with him mom and doesn't seem to get that he can no longer do that for example he told his mom last night while I was visting friends new baby in the hospital that I was staying the night and wouldn't be home to give her medicine...needless to say she was very relieved to see me when I got home!
With him acting that way and not helping it would be best for her to be in a facility, in a perfect world we would have an extra bedroom for her and I would take care of her but we obviously don't live in a perfect world so until hubby decides to look into other options I will be sleeping in kids room on the floor chugging redbulls and trucking along.
sorry to sound so down just having an off day
on the plus side I get to buy new sunblock and shampoo...someone wanted to smell them...I.ll give you a hint sunblock is sprayed all over mirror in bathroom and a certain lady smells like coconuts and a person about 2 feet tall has something about mary hair...Im going to call them double trouble

 
Old 04-27-2012, 11:05 AM   #15
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Re: new, caring for MIL with dementia please read.

Cap, I understand that your husband still wants to be her son. It is good that he still tries to see his Mom. As long as he can make her feel OK. If she starts to think he is the bad guy in the conversation, then the husband can try to back out a little bit.
The important thing is for him to recognize it. When Mom gets upset thinking he is the bad husband, he could leave for a while until she feels better.
I don't think he needs to avoid her at all times. Give a try and see. If she gets upset, leave her so she can relax.

Take care,
Nina

 
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