This week's coping...I find myself being devious in so many ways, and it sticks in my gut.

BBCrawford: "The caregiving card" is genius! Love it!

She1934:
What you (and many of us) have to do is not being "devious." It certainly feels that way, especially for those of us who were always grilled to tell the truth when growing up ourselves. However, as you yourself say, it is a "way to avoid conflicts" and that it is. You cannot cajole, reason with or in any way "manage" dementia and the behaviors it brings out! It is what it is (and can/likely will change over time.) The only way to cope with their "reality" is to find way around the various issues (and these vary from person to person - some we all share, others issues/behaviors are more unique.) Little white lies, therapeutic fibs, the need to hide things, make up excuses or explanations, and moving dangerous items out of sight (and therefore often out of mind!) are among the coping mechanisms many of us have had to use. Personally I also dislike "lying" or being deceptive, but it unfortunately is a necessary evil - both for their safety and YOUR/OUR sanity!

SWOMBO's comment sums it up:
"The necessity for deception is one of the most difficult issues I've experienced in dealing with my husband's dementia, but as time goes on I've come to the realization that it is a very sensible coping mechanism. It protects him from stress and keeps my aggravation and worry at a minimum." They have their "coping" mechanisms, as contorted as they might be, and we need our own! Just beware that while it becomes easier over time to manage the person this way, you don't want to let this ease bleed over into your "normal" dealings!

Looking back, prior to realizing where we were heading, there were instances where mom insisted a guy painting rooms took some small items, and then later after my brother and his family visited she said they must've taken her tweezers. My response initially is why mom, why would they need to take that? It is something readily available and inexpensive, so why? I learned to just change the subject. Fast forward to cleaning out after the move to MC - we found several tweezers in the bathroom, including one I got for her as she insisted she had none (no real surprise at this point), and then - about FIVE pair were found in a dresser drawer!! It is bad enough when they hide/lose items, but she also started digging out old paperwork and going on and on about whatever that paperwork was for (old ancient history stuff!) I took a few items after seeing what it was (surreptitiously), but eventually had to get my brother to take her out for a while and "swept" all the places I knew she had paperwork. She never queried where it went, never missed any of it. It was only a problem when it was there (dug out) and accessible! Anything she did dig out and put on the kitchen table "just came in the mail", although it was all MANY years old. There was no reasoning with her as to why it was old but she just got it - I chalked it up to the mailers being incompetent, and then took it away when she wasn't looking. Only once or twice she recalled having one of these, but didn't know where it went... Change subject!!

Now, since she has drifted back in time a bit, I have to make excuses as to why I cannot take her to her mother's place now (oh, it is a little late now, and not on my way, so maybe tomorrow), or say I do not have a key to her (previous) home with me, I will have to check when I get home... Usually this is met with an "ok." The answer du Jour (or the moment) will change from time to time! You just have to get adept at it - if you had children, you know how this goes... As the kids get older, you have to adjust the answer/reasoning for them. For the elders with dementia, it is a little different, but so similar in many ways! The answers or ways around issues might actually get a little easier as the condition progresses (vs kids get older and wiser and you have to get more devious!)

Following up on ccheno's suggestions - if his cell phone is a "Smart" phone, you can delete or disable most any of the "apps", such as Chrome (internet access). If he can still "dial" numbers, that may necessitate somehow disabling the calling feature, but as for pre-programmed numbers, make them all go to a single number (he selects or enters the various names, but all calls go to your phone, perhaps a landline with remote messaging and you somehow make the landline phone unavailable at night so he doesn't hear it or just have ALL calls go to remote voicemail?) From your post it appears he scrolls and selects the names, so changing the numbers might help! Certainly disabling wi-fi can help, but if you are in an area where there is decent cell service, he could still make calls. This all calls for some creative thinking about how to handle the cell phone (and prepare the "fibs" for why it is not working!) Disable one "app" at a time, so it is not as noticeable. When you "hide" items, pretend that he has misplaced it and feign searching for where he left it...

Others have made suggestions for other distractions (and protections) - I never thought about the subscription cards that are in the magazines! Because she is in MC, I do not have to worry about those anymore, but for those with LO living with them, yes, beware of this! RD likes to mail MORE renewals even after it has been renewed.
I discovered this but until mom renewed and sent me the "Free" subscription, first to my mailbox, then to my PO Box, I was not aware that she had fallen for this! I had to send them NASTY mail to make them stop (they will renew even if you do NOT ask for it!!)

For those elders who can recall their SS#, which enables them to open new credit - I do not know if you can "freeze" their credit online, or use POA to do it by mail. It would resolve this issue if you can do this. Some states require payment ($10 or so per credit bureau), but if you can manage a way to do this, it should prevent ANY new credit and with POA you can (should be able to - some banks are pain in the butts about this) close old credit. I had to freeze my own credit at the bureaus because Atty staff member sent query with my SS# in email :-O!!! Fortunately I most likely will never need to unfreeze it again so mine will be "safe" for a long long time!

FWIW: at some point when you get over feeling bad about needing to make up answers (lie/fib), get better about reacting to issues, hiding items, etc, you might actually find some of these behaviors a little amusing! We chuckle over some things that mom does - not laughing at her per se, just trying to find a way to "cope" by making light of stuff she says or does! Laughter, as they say, is the best medicine!!

I so relate to all that has been said on this thread. We put a gate at the top of our stairs so at night Dad wouldn't stumble and fall down the stairs on the way to the bathroom. He was pissed but I said Dad I am not living with regret saying only if I had done that he would be ok. So I am dropping the Caregiver Card. He dealt with it. Even told his Dr how he appreciates it. Go figure. Also we have to hide the mail or he will leave it all over the place in magazine, piles of his stuff. So we try to get to the mail before he can. It just never ends the things we have to hide or lie about to keep him calm and happy. Everyday is a new thing, yet it also feels like groundhog day too. Love Dad so much yet my husband and I are burning out. So we are hiring peeps to come it to get breaks. Have a most awesome day.

To She1964, you are doing the best you can, just keep doing it. I would get a dummy phone that doesn't work. Or a TV remote with the batteries out. It might be just the number punching is fascinating. See if you can find some respite care for yourself. Our RSVP in town will come and visit in 2 hr or 4 hr blocks, up to 4 hrs a week, so you could get out of the house. We also have an Adult Day Center where we care for people for 4 or 8 hrs a day to give the caregiver a break. You are doing nothing wrong, you also need to care for yourself.

Don't be so hard on yourself. I stopped letting my mother bring in the mail because she wouldn't give me bills until they were past due. She also would donate to every cause on earth and run out of money.

The necessity for deception is one of the most difficult issues I've experienced in dealing with my husband's dementia, but as time goes on I've come to the realization that it is a very sensible coping mechanism. It protects him from stress and keeps my aggravation and worry at a minimum. Been through the mail issues -- so I just get to it first, weed out the junk, and keep it hidden from him. As to ordering online, he's (thankfully) reached the point where he can no longer figure out how to operate the computer; and he's never been a cellphone user, so my only worry now is the landline, at which he's becoming more and more inept. And he hasn't driven -- or wanted to --
for more than 10 years now. It's very therapeutic to know that so many others share these experiences. Bless you all!

I absolutely do not deem this devious activity on your part. You have done a great job of managing these tasks, albeit difficult as they are. Give yourself break.

My 92-year-old mother-in-law has no interest in the phone. She can hear, but can't recognize voices or understand who the callers are. She can't use a cell phone, or any phone.
If your father loves using the cell phone, could you set it up the way it's done for small kids, no WIFI or Internet, so they can't place calls, but can look through photo libraries (add photos of faces, animals, favorite objects, memories he'd enjoy scrolling through), listen to music, use the calculator, and show him how to use a few very simple features.
It would be so cool if there were a way to have a phone contact list so he could tap a name/phone number that went directly to recorded messages: "Hi Dad, I love you very much. I hope to see you soon!" "Hi Grandpa. I want to sing a song for you (read a poem, tell a funny story)."
This would give him things to do if he just enjoys fidgeting with the cell phone.
If he still understands how to make phone calls, this would not be adequate, and as others have suggested, a land line would be necessary.

Yes, try to remember they do not do this on purpose and try to put yourself in their shoes. Sad to say, we cannot predict the future and we may find ourselves like them one day. It is a very self sacrificing thing we can do to take care of an elderly parent with dementia. I know as I have been doing it for years. I do get tired as I don't have much time for myself. And I can relate to another person who wrote about her parent's dentures. Don't know how many pairs my dear mom lost. And it was me who had to take her to the countless trips to the dentist for new dentures, impressions, fittings, etc. and not to mention the money my mom paid for new ones. I'm trying my best for now and taking one day at a time. Life goes by fast. It won't last forever.

My friends were not too bad when I was made POA for their health care and finances. I monitored their spending on-line at first to make sure they weren't getting scammed. When I got them into a memory care apartment, I took the cell phone and cancelled it and their phone in their town home. All their mail was sent to me so I could monitor things. I tore out the subscription renewal cards in the magazine they received so the husband wouldn't think it was time to renew. I had their checkbook to pay their bills, so I didn't need to worry about strange purchases. Getting them into that environment was key to being able to manage their needs without becoming personally exhausted. The care there was better than anything I could have done. As a male friend, I was not about to start cleaning the wife with her incontinence. The trick was convincing the husband they need to leave their townhouse so his wife could get better care. It took a couple of years before her needs were so pronounced that he reluctantly agreed. Once there, he was happy and never asked about going home. There were new people to see and eat with everyday so there was socialization. Staff there made sure each got whatever meds they needed at the right times and kept me informed as to their mental states to help prepare me for the declines that were coming. I could never had done this alone. May you find such a good answer for your father. I had no hearing aid issues to deal with and the constant misplacing of things, so it was easier for me and the staff.

You’re definitely not alone in having to use subterfuge to protect your loved one, nor in feeling guilty about it. It’s one of the hardest things we have to do as caregivers and one that no one seems to be able to anticipate somehow. It’s so difficult to say untrue things to your parent or spouse that you love and respect. And to agree with them when they say things that you know aren’t true, just to spare their feelings. (Like yesterday, my dad told me his dear departed dog, gone 20 years now, is living in his old hometown. “I don’t know how he got there, but he sure is happy!” “Wow, dad, that’s great.”) We have all been there.

My mom was diagnosed 2 years ago with dementia. She is forgetting more and more. We repeat the same thing over and over again. This is exhausting let alone all the other things that are happening. I gave her a calendar that has my everyday schedule. She needs to know where I'm going at all times and when I will be home. Im 52. I live with both of my parents. She's the same way with my dad. She NEVER wants him to go anywhere!. Its so hard on him. She's been through the anger and rage and was hospitalized for a month. She is finally somewhat better with meds. Now though she sleeps so much. Its so sad to experience this disease. So frustrating for her and us. 😖

My dad lost 3 cell phones within 6 weeks. We bought a new one, made sure it was a new number and ONLY put mother, brother and me in the contact listing. We are ok for his calls, but no telling who else he would call at all hours.
He refuses hearing aids, but he loves to read. Every week I take him a stack of books and this occupies him. I also take him snacks he likes and this seems to satisfy him. Has he thrown some books in the trash can? Yes. IF that is the worst, I can deal with it.
Granted he is in NH and is supervised, but he is still able to cause havoc. We control it as best we can. Now he wants to play bingo with other residents, which is great! Good luck with this...

One question: Why are you putting up with this. it will only get worse. You don't deserve to be forced to care for someone like this. You must place this person in a facility where he can be properly cared for by a trained staff. Remove yourself and don't make yourself the object of constant battles and frustration.

Wow!! Does this mean I should count my blessed (??) that she decided not to eat solid stuff and is now too weak and WON'T get out of bed to try to get stronger? I don't have to worry she will wonder or get into stuff. But then she lives in MY home now and I am always here unless a respite Hospice worker is in attendance.

These deceptions are all based on keeping them safe because a conflict could be bad for their B.P. - having them on an even plane with little ups & downs is the best way for them in long run - we all hide things, remove things from use, discontinue services and disable items in an effort to keep things on an even keel for them -

Guilt is a spirit sapping emotion that will keep you tired & cranky - you should only feel guilt for things you do selfishly [like taking money from their wallets to buy booze for yourself] not for doing things like following what the health specialists strongly suggest you do for them or even common sense tells you should be done - it is past time to ditch guilt for necessary actions because those actions are done out of love & compassion

It is so difficult and against the grain so often but as others have said these lies are necessary. You can try and find other ways to deal with the issues so you don't have to lie and for the things you do still need to consider it this way, first would it be easier on your LO if you told them truth, if I don't hide this item you do this without realizing and that creates this problem...will that be received well or will that be too hard on them to hear, in which case the lie is a lie of love and respect, the truth would be the opposite. It isn't your fault and it isn't your LO's fault either it's this disease. Maybe we are simply outsmarting or lying to the disease not the person.
Ideas; If the cell phone is or could be on your plan is there a plan meant for children that limits who they can actually call or what hours they can call from it? I know there are cell phones meant for seniors that hold limited numbers and have very limited functions, maybe that's an option? Seems to me he gets some pleasure out of scrolling though so I would be tempted to try and let him have it for as long as possible, even if it wont call all of those people... When he subscribes to things and orders things, is it by mail? Who mails it for him or provides the stamps? Any way to intercept, even make a deal with the mail carrier if he leaves them in your box or give him 1 cent stamps so they don't get sent... Give him an old checkbook to a closed account and maybe mark that on the back of the checks or something to warn anyone that receives one that doesn't get out. Is there a way to flag his SS# or hold it so anyone wanting to give him credit sees not to? I know there is a way to turn that ability to check your credit on and off so other people cant steal your identity. Again it seems to me that getting and being able to go through the mail, fill out forms and order things is a familiar function to people and makes them feel self sufficient, like they are living in the real world.
Thant said of course, I am not suggesting making it harder on yourself to entertain him, it's a balance and an important one meaning your needs are more important sometimes and his are other times, unfortunately it falls on you to decide which is which. Still your needs are no less important than his and should take precedence a fair amount of the time. Taking care of yourself is the same as taking care of your LO.

NOT devious...smart & safe! So many good answers & advice here.

My Mom is showing signs of ALZ. I am always looking for short cuts & work arounds these days.

Princess....thanks for your honesty.....I could have written your post! I tell Mom "let's not fight about it...it has to be done so let's just get it over with & think how wonderful you feel after the shower." This works more often than not as "just get it over with" was one of her go to expressions when I was growing up. She can relate to it. :)

You are only protecting your LO. Just last week had to take the microwave away because my mom wants to cook when I'm sleeping and that wasn't going well. One week coulndn't find the house phone that was in her room (later found it in one of her tote bags). I'm looking for toothbrush, toothpaste and soap every morning. She moves it out the bathroom every day into the abyss of her bedroom. I cleaned out the bathroom over a month ago to avoid her putting chemicals in her hair or on her face. She now uses toothpaste as face cream (first it was the deodorant) and refuses to take it off. It hardens, it's a mess. You have to do what you can to protect them from themselves as long as you can.

We are all going through similar things. Try and remember he's not doing it on purpose. It's okay to fib to keep yourself sane and it's not hurting your loved one. It's a job that's much tougher than anyone realizes. You need to safe guard him from not only others but himself - some one else mentioned like a child, you have to do what's best not only for him but for you and the rest of the household. It's hard because they are not children, they will not grow and learn, this will not get better only worse. I also try and remember it may be me one day.

I am so sorry for your "guilt" and frustration. It is just like caring for a child. You must give yourself credit for being their for your loved one. You are his angel. I care for my 88 yo mom, who fell two years ago and fractured her neck -- she was in Ohio with my nephew and I live in California. We almost lost her, but because she had a GREAT surgeon, she survived. Since she struck her head so hard, she lost all memory of the past 10 - 15 years. She knew all of her family, but occasionally mixed up grandchildren's names. She was adamant about not leaving Ohio (very attached to her great-grandson, whom she practically raised from 6 months on) and coming to California with me. I had to "fib" and tell her she was just coming for the winter months, as it would be too hard on her. She had episodes of anger, once she realized that she was not going back, but got over it, once her senses somewhat came back to her and she knew there was no one there to care for her. Both of my youngers have passed away (they had a genetic disease - one passed at 30 and the other at 59), so I am the only one who could care for her. She has memory problems daily of recent events, but remembers all of her childhood. I am so fortunate that she is cognizant enough to listen to me and know that I do everything for her best interest. I read these comments daily and I feel so much compassion for those of you having issues with your loved ones. Even though my mom is a "gem" comparatively, I do understand the stress and the burnout that is suffered by us all, just from the daily care. You are all angels and may God bless you all.

I understand. My father would do things that drove me crazy, but I couldn't stop him. I would do things behind your Dads back, like cleaning his shaver. Don't ask him. The worst part is when they realize there are people out there who will talk to them and all they have to do is give them money.This is a great revelation to them. And will be their their new obsession. And once they give one person money, soon many will follow. And soon they are on the sucker list. If it isn't over the phone, it's on the tv, the mail, and people show up on the doorstep. They take advantage of the elderly. Special place in hell for those people.

You could turn the phone service off ( from the supplier, Verizon, AT&T, etc) but keep the phone charged up. He can dial all he wants but if the service has been terminated, nothing will go through. Just tell him the tower must be out again.

RE: "where are the hearing aids" - I've been playing this game for several years. I finally got DH to put them in his shirt pocket. Much easier to find. Yes, I had to rummage through the trash once and even scoured the backyard looking - thankfully I always found them. So far.

We have a metal bar across the door so he knows I am still inside - sort of - but the bar is too heavy for him to lift. He still can't always find me in the house. But the bar across the door helps a lot! It slides through 2 large 'cup hooks' and secures the door.

My husband and I have to hide all of our scissors and sharp knives because my mom cuts up her clothes. She was doing this on occasion before she moved in with us in December. I have caught her a couple of times trying to cut her socks or the sleeves off a shirt.

I admit I lose my patience with her on a daily basis. She fights me about her doing anything she doesn’t want to do - like bathing, washing her hair, doing her walking, her exercises (she was in rehab for a while). Whenever she doesn’t want to do something, she pulls the “I don’t feel good” or “I don’t think I’m going to be able to do xxx today”. I used to give her the benefit of the doubt, but now I’m on to her. Sometimes she has barely opened her eyes in the morning before she says she doesn’t feel like doing anything today.

However, her dementia seems to be getting worse each week. She has gotten to the point where she has to wear a diaper all the time. I placed a diaper pail in her room along with a dirty clothes hamper with bright neon signs taped to the wall above each receptacle so she would get used to putting things where they belong. They still end up on the floor, her bed or a chair. I’ve given up.

Oh my stars...and Mom thinking facebook was stalking her had me going bonkers...and I'm at just the beginning...I'm hoping her computer will crash as she/we won't (wink) be able to afford another one....sigh...

I think that dementia forces us to treat our loved ones with deception in order to avoid painful conflicts. Then we get to feel guilty (shouldn't lie to loved one) (loved one should be worthy of honesty) (it's so difficult to keep thinking of work arounds) (why do I have to do this). I can only imagine why this is such a sticking point with you. But I'm proud of you for avoiding conflict and continuing to manage. When you think of the alternative (yelling, reasoning in vain, fighting) you may feel better that you are only doing what you have to do. Perhaps you can also take comfort that your loved one isn't as upset as if you directly confronted him. Best wishes.

This is such a common issue associated with dementia, but it doesn't make it any less exhausting or aggravating. My (now) 95 year old mother lost....wait for it..... 5 pairs of lower dentures in less than 18 months. The last two sets were $1,000 each, accompanied of course, by the multiple trips to and from the dentist. We had to make the difficult call to not replace them again, and although she can only chew (or, sadly, more appropriately "gum") with her upper dentures very soft food, she seems less stressed knowing she isn't going to lose them again. Had absolutely no idea where they went....sometimes comments like "I put them on the end table....someone else took them", to "I wrapped them in a tissue, and I think they fell into the toilet" - probably true). Someone, anyone, is always taking her coffee, muffins, candy and her blessed coasters (always found stuffed in her underwear draw, or inside some stashed box in one drawer or another). We are warriors, all of us, and today I send hugs to each of you for continued strength and perserverance. xoxoxo

I had to hide the kitchen knives, turn off the landline (we have cell phones), keep garbage pails and cans out of sight and out of reach and eventually had to install a safety gate (for her sake) to keep her completely out of the kitchen which was full of dangerous items as well as the door to outside and the door to the cellar staircase. Do not feel guilty, you need to keep your loved one safe!

My Dad orders from catalogs which only adds to him being on more mailing lists. I sneak some out of the house and go online to get him off the lists...it’s never ending. We can only do so much...

I have been there too. I had to sell the car, hide the cell phone, hide the wine bottles, hide the kitchen knifes, hide the gardening tools, hide the hammer, and so on. I had to replace those "toys" with other things to keep his mind in some other less harmfull things. I bring him a lot of newspapers and magazines every week, he loves to read.