I've been reading the message boards for about a week, trying to get up the courage to post. This may be a little long, because I need to provide a context for my guilt.

Here's my story:
My mom has Stage IV colon cancer & dementia (stage 5, by my assessment). Her prognosis is "around 6 months."

Mom lived in her home by herself since my dad passed in 1995. She finally agreed to a home health aide 40 hrs/week a couple of months ago, but was completely alone the rest of the time. Home is Ft. Worth, Texas, where none of her kids live. Mom's sister and sister-in-law have been primary caregivers, but both are extremely ill and told all of us they can't keep up with Mom's care and also take care of themselves. Collectively, we decided Mom needed to move to an ALF.

I live near Tampa, Florida. Since I am the one most able to coordinate Mom's care & affairs (my siblings have their own serious health problems), we were able to convince Mom to come "for a visit." She agreed to a week or so, then a day or so, then maybe a couple of weeks. She has been here 3 weeks and seems to have settled in to the ALF routine pretty well. When I talk about something happening or someone visiting in the future, she occasionally says "maybe by then I'll be back at home" but hasn't actually told me that her visit is over and to take her home.

Mom has hospice care and home health care in addition to the staff at the ALF. The facility also has a memory unit (which Mom isn't in -- yet), so they know how to deal with alzheimers/dementia/memory issues. I have spoken to hospice and Alzheimers Association counselors, and they were wonderful. I have also received a great deal of comfort from the message boards here.

I warned you that this would be a long post!!

Here's my guilt:
I have a hard-wired inability to deceive or lie to my mom (she raised me right), but I now feel like I have to from time to time. I "snuck" her checkbook out of her purse so I could have it home to pay her bills, and felt so guilty that 10 minutes later I asked her permission to take it, and had to lie as to why. That started a 20 minute conversation that really upset Mom because she couldn't understand why I needed her checkbook. I was kicking myself for getting her upset, but my instinct with her has always been honesty. Plus, since I had to lie to explain the truth, I still wasn't being honest!!

I'll end this mini-novel with the question that brought me here: How do I make it okay in my head to not tell my mom the truth?

Welcome Journeywriter! Thank you for sharing your story. Don't worry, it was not a "mini novel"! Blessings to you for stepping up to this journey with your mom in light of your relatives health issues. It is not an easy one to travel, but you will make it and without regrets for doing so.

Okay, now for your question. We all know that lying is wrong -- it is an ethical issue we all deal with. However, you are doing what you have to do for the good of your mom. You are doing for her what she can no longer do for herself, and because of the AD, she cannot understand why. Just keep reminding yourself of that point. There will most likely be many other instances where you will need to tell "therapeutic" fibs for the good of your mom.

If you dont already have it, you may want to see to it that you have all the appropriate powers of attorney in place so that you can comfortably handle her finances and medical decisions on her behalf.

Good luck to you and keep us posted on how you are doing,

Peace,
Mari

Mari, thanks for the words of comfort & support.

I have a DPOA and will make whatever decisions are necessary for my mom's care. My family is okay with the understanding that we aren't going to do "decision by committee." I will inform them of my decision, not ask for their approval.

Also, my name is on my mom's bank account so I can pay her bills. I know that the question of selling her house will come up, but not yet.

welcome journeywriter...we are close neighbors..I am in St pete! First of all you sound like a wonderful daughter and your mom is blessed to have you...I am sorry to hear that your mom is so ill.

I, too, struggled with the "Therapeutic fibs" in the beginning of my journey with my father..however they have saved our sanity so many times...you just remind yourself that mom's "reasoner" is broken...you are doing it to save much anquish and anxiety on her part and yours...its just another unpleasant part of all of our journey's here. Please don't feel guilty...we all do this...its really okay.

Keep us posted and let us know how your mom is doing! You will get tons of support here and excellent advice.

kim

Hi Journeywriter,

Welcome to this board! You will find many caring people who are great listeners and provide a wealth of information.

I also struggled with this as well. My father was very angry with me because I took his checkbook from him and did not return it. I told him I was taking it because the register had to be rewritten. This was the truth because there were so many scratch-outs I couldn't make any sense out of the entries. The reason I kept his checkbook is that he sent a totally blank check to a charitable organization. Luckily they mailed it back to me.

As Kim said in her post, your LO's "reasoner" is broken. It's best to just go with the flow and not try to explain if at all possible. I told my father that I was keeping the checkbook because he was lucky that an unscrupulous individual and/or organization did not clean out his account, and that we needed to keep excellent records for Medicaid.

Just remember that you are acting as your Mom's advocate and that it is for her safety and well-being. Using a therapeutic fib preserves our LO's dignity. It will get easier with time.

Journeywriter,
It was hard to get used to therapeutic fibs, but they make life easier for our LOs and for us.
I'm so sorry about your Mom. She is so lucky to have you!

Hi Journeywriter,

Always remember you are doing what best for your Mom AND keeping her safe!!

That's the way you can tell yourself that therapeutic fibs are ok. Because they are!!

Good luck. Please, keep us posted.

When I first brought my mom to live in a facility near me and took her in to be evaluated at a Geriatric clinic, a very nice social worker told me that I would need to learn to lie and told me why. I was stunned, but I am so glad she did that because it has made things easier down this road. You must do it out of kindness. The checkbook will just disappear, etc. Your mom will forget about it, and if she doesn't, you say you will get another one for her - whatever eases her mind.
It is hard to do, but you will eventually see that it is necessary.
Otherwise, in my life, I simply cannot lie at all! I can avoid things - the baby which resembles a warthog is "so precious", for example, but otherwise, can't do it. I can do it for my mom tho, if it soothes her.

Theraputic fibs are a kindness to your mom. Say what makes her happy to hear.

I don't feel good lying to my mom either, and I do it as little as possible, but I do choose to give her only the part of the truth that I think she can understand, and I phrase it in a way that I hope addresses her concern. On money stuff, I say "You have been sick so I am taking care of the bills for you." If she wants cash (she doesn't need it at her ALF) I say "You don't need it here, but I'll see what I can do." The one time she asked where her mother was, I said "I don't know where she is right now." And so on. Also if I tell her the truth and she disagrees, I say "Well, that was my understanding, but I could be wrong." (E.g., for a while she thought my dad was having an affair with the home caregiver, and I said he wasn't, and...)

Your primary concern should be your mom's safety, health, and happiness. There will be times when telling her the truth could be harmful to her. Stress can exacerbate her symptoms. Forcing her to focus on her illnesses can cause depression. Denying her reality can create confusion and fear.

So when you're faced with a situation that falls into such a category, use therapeutic fiblets, validation therapy techniques, etc.

And recognize that this is what you are actually doing -- you are making a decision to do what is best for your mom, from a medical standpoint! Studies have found that these types of "treatments" (interventions) are, indeed, the "best medicine" for our ADLOs.

Read "Creating Moments of Joy" by Jolene Brackey. This is the very best caregiver book I've found. It will really open your eyes.

Journeywriter,
Wow, I think that you have really done a lot and are handling it good.
I can relate to the hard-wired honesty. I didn't listen to all the others that said to lie, so I told her that her father was dead (1967) and it led to two days of crying.
I say NOTHING now.....still can't lie. I divert her. If she says that she thought her father was coming....I say, "no, he isn't" and strangely that is enough.

About paying some of her bills....do direct pay, so that no check writing is necessary. Like utilities, etc. Of course it all probably could be set up online, I just don't pay bills that way...but zillions do.
However if you set her bill paying up directly, when she passes or you wish not to do it that way anymore, close the account. They take too long to stop auto collecting and you will have enough to do without getting restitution.

My mother had a trust and the POA was Springing. I waited too long after knowing that my mother could not read or write and could not write her name. I needed to get money out of her accounts and she couldn't sign, so I had to have two doctors evaluate her so that the POA would go into effect.

Wishing you the best.

Journeywriter, first of all - welcome to the boards. You have found a new family here and I hope you continue to check in and post.

You will see over and over again posts about "therapeutic fibs". They are so necessary. We have to remember that this disease does certain things to our loved ones minds, they can't understand things the way they used to. We tell them these therapeutic fibs because we HAVE to, not because we want to. Trust me, the guilt goes away.

Not only have I used the therapeutic fibs, I have some doozies that I keep on the backburner for "just in case". Always have to have a plan!

Thank you, everyone, for helping me to understand the need for "therapeutic fibs." The Alzheimer's Association counselor explained it this way:

"If your Mom was coherent, she would make the same decisions you are making. So you are just making decisions for her because she can't make them herself. You aren't being deceptive; you're being protective."

And by the way, Kim and everybody else, I'm not a wonderful daughter. I'm a wonderful SON.

Yeah Journeywriter Son!!! We need more guy caregivers on this forum!

Thanks for the chuckle Journeywriter, I also assumed you were a daughter. I have no idea why.

Dear Journeywriter,

Welcome to the forum, there are many of us here both daughters and sons who are doing the best we can for our mothers and fathers, and of course other family members and loved ones. I just wanted to join the others in trying to help you lose your feelings of guilt in caring for your mom. I think the explanation is great, that you are doing what she would do if she could. The fact that you feel guilty says a lot for you. My mother lives with me and my husband. I have her powers of attorney and at this point take care of all her business and personal needs. I have 4 siblings and consult them about big decisions, but mostly I just give them financial reports at the end of the year. Mom still owns a house in which she is no longer living, and what to do with it is the main thing we are not yet all in agreement about, but I feel sure that will happen in time.

You have your hands full but I can tell you are doing a good job, and most importantly, how much you love your mother -- I wish you the best. There is LOTS of support here!

my bad.......how funny..why did I assume you were a daughter??? who the hell knows...anyone it is VERY cool to another guy on this forum...sorry about the mix up friend!

kim

Trust me when I say this (after having lost my mom last fall):

"Whatever it takes" is a good rule of thumb to live by. Lighten up on yourself and allow yourself to not be upset by guilt, a messy house, forgetting small details.

Enjoy the time you have left with your mom. If you are not uptight, she'll also be happier.

Peace by with you.

Not to sidetrack the conversation, but so often, unless there is an explicitly "male" or "female" name, I tend to assume that the caregiver is a female. Maybe that's because I'm a girly-person

I promise, cross my heart, to NEVER do that again!

Welcome, journeywriter! Son or daughter, you will find many of us on the same path, just at different places.

journeywriter, sir, we are happy to have you on the forum.. You will find great advice and humor and people that truly understand what you are going through. The lies get easier as you see the results when you tell the truth as opposed to a gentle juggling of the facts. My mother was crying this morning for her daddy and I told her it was ok and he would be waiting for her later. She settled down and was ok. Some times the brief answer is better than trying to reason as She can't. That is the hard thing for me to remember, She Can't.
Now I want to cry! The company here is great and we will all travel this road in good company, welcome.

Hi Journey, every so often I have to relearn that statement about what happens when you assume something. good thing for the distance and you dont get to see the red face.

You can call it lying, fibs, i like to think of it as comforting stories. their purpose is to allow you to keep your mom safe, healthy and as happy as possible, not to keep you from being responsible for your actions. You are taking a great deal of responsibilty making your deception a very different thing than the behavior your parents taught you not to do.

Sorry to hear about your moms cancer in addition to the dementia.serious illness complicates everything. peace.

journeywriter, perhaps you can include your mother in matters that are important to her, especially her financial affairs. Include her in a way that makes her feel still needed. It made a huge difference with my mom.

I think a significant problem with our AZ loved ones in the middle stages is that they deeply feel that they no longer have a role. So, ask your mother if she still needs that subscription to Farm & Ranch magazine while living in the big city. Converse with her about the high cost of utilities. Ask her opinion...and then do what you need to do. If she can still sign her name, have her sign a check that you've made out.

Some of my mom's anger came from not being part of the world, not being included. Maybe you don't need the therapeutic lies yet (you will) and instead just need half-truths.

Guiding principle: What is best for mom?

I can relate to this issue. My life partner can often reason well and solve problems well, which makes it harder. I've been able to be honest with her until yesterday, when I took her handgun to a local gun dealer and sold it (with a POA). The day before, I'd wondered if I should relent and ask her permission. (A few days earlier, I'd finally found the gun where she'd hidden it.) But what would I have done if she'd said "no way, you must not sell my gun!" -- so I just went ahead and did it. Do I feel guilty? Maybe a little bit -- but mostly I think I did the right thing.

journeywriter, welcome to this wonderful board that was created for such a horrible disease!! I know it has to be hard to tell these "theraputic lies" but it does get easier!! My family and friends question what i tell them now, they say im too good of a "liar" to my nanny. When nanny and I are having a conversation and im telling her these fibs, our family, just look at me and shake thier heads, they want to learn to tell "lies" like I do!!

I hope things get easier for you and you are a wonderful SON!!!!!!

Hello, Journeywriter!

And welcome! I think you can see what a caring community we have here.

I agree with all the others. And there are many ways to approach this. I know for me, it was the hardest thing in the world to look into the eyes of the woman who taught me not to lie and not tell the truth. Sometimes there is no other way to keep her content. And her contentment is the main factor in her overall well-being at this stage. So to me, it is very "okay" to lie. I found it helpful to also remember the 5th commandment "Honor thy father and thy mother". I reasoned that it was not honoring her person to say things that hurt her, even though they are true. So I have come up with a good number of "non-lies" that work well most of the time. When she asks to talk to her dead sister I say "I don't have her number in my cell phone"(true). When she asks about her dead brother I say "The last time I saw him he was fine" (also true). You can see how it goes. I made the mistake one time of telling her my father was dead when she asked me point blank. The anquish she suffered the next hour was more than I could stand. I haven't made that mistake again.

Bless you for your loving attention to your mom. My brother is also a loving son. We learn to do what we need to in order to make it "okay". You will, too. Let go of the guilt and honor your mother with the love and compassion she would show you.

Thank you all for your words of encouragement and support. This community has been very important to me in trying to understand what my mom is going through and what I will be going through with her.

I don't want to get "good" at lying, and I don't want the guilt to go away, because that's a very scary place to be. But I have to realize that my whole world-view just got turned on its head, and I have to learn to adapt.

I also want everyone to understand that I'm not at all hung up on the daughter/son thing. I only commented about it to set the record straight, and I understand that because I chose a gender-neutral screen name, some folks might make incorrect assumptions.

Cathy J. M., I think you did a brave and necessary thing. Have you thought about what you will say if your partner asks where her gun is? One thing I worry about is my mom confronting me about a decision I made without telling her.

Aunt Nonnie, I understand that it will be important to my mom to feel she is still a part of her life, but finances are definitely out of the question. My family has told me that when my mom lived at home, she would get a phone call, go get her checkbook, and read the numbers off the bottom of a check! When they asked her who she was talking to, she had no idea. (We suspect that one or more of my nephews figured out a way to remove money from her bank account without her knowledge or permission, and that was probably who had called.) I'll find things that she can still participate in, but my first responsibility is to protect her from her inability to understand much of what goes on in the world.

Journeywriter--- what helps me live with the guilt I face in not telling everything to my mom......
* acknowledging that her 'role' as my CAREGIVER has changed to ME being the caregiver
* knowing the difference between the ROLE OF CAREGIVER and being a mom OR knowing the difference between being someone who provides caregiving and being a son/daughter; there is a HUGE difference..... While mom can not provide care for you/make decisions for you or herself, she can still be your mom by:
a) receiving love and affection through visits/gifts/touch/song/food/time together
b) being spoken to with respect/compassion/empathy for her abilities
c) being treated with dignity that allows her to keep her dignity and sense of security

While you are a caregiver, you can still be your mom's son by doing the above as you do the caregiving you do......

Much as young children can not handle or understand some things, and we don't tell them what is beyond their grasp, the same is now true for your mom. It's a matter of what she can 'handle' given memory problems. Have you read about asonognosia? (unawareness of one's abilities declining) Many, possibly most, of people with dementia are not aware of their decline in abilities due to the brain damage that results from this disease. That means, your mom may be UNABLE to handle the specific details that explain why you made some decisions. In that case, an answer will most likely be unacceptable to her; that's why people find ways to present what they can to their LO to allow them dignity/peace/security. They are not able to understand. Trying to get her understanding/acceptance would be like banging your head repeatedly on a brick wall....

so it is good that you are working at coming to terms with how to accept where she is at and what you need to do to help her; we all are. We're all at various stages of discovering how to live with these massive role changes.

I use comments that empathize with her feelings... for example,
"None of you care about me!" me: "It must be awful to feel that way."

"My homecare worker stole from me (when it's not true!)" me: I'm sorry that you are feeling such fear/loss/frustration. It must be hard."

"You are an awful daughter. You don't know how to honour your mother/father.(when she was upset about a decision I made)" me: "Mom, you are understandably angry. This stress isn't good for you. We can talk when you are more calm." (then I waited out the storm until she settled and I allowed her to 'ream' me out when I was calm & ready; then said, "Okay, Mom. I get it. We'll work at not having that happen again." then change the subject.... My goal when talking is monitoring her stress level(feelings of security; given she does NOT understand rational thinking anymore)

I think the guilt always comes back to a person's knowledge and acceptance of the disease's presence in a Loved One's life. Once I could accept her diagnosis totally, with hope, I dealt better with limiting what information I provided to my mom. I have not had to out and out lie yet (my mom is about stage 5 and has been dx for 2 years), but I have had to significantly limit what I tell her by sticking to empathy for her feelings whenever I can!

Good luck!

I honestly don't think of the therapeutic fibs as lies. To me a lie is malicious deceit. The therapeutic fibs are necessary. These fibs are for protection, protecting our loved ones.

Dear journeywriter: A warm welcome to this marvelous Online Community and the Caregiver's Forum. We are all very glad you have found us.

As you have already experienced, you have received marvelous input from many who have walked a similar path and faced similar questions of honesty and ethics in the face of a dementia diagnosis.

I too felt strongly about being not totally "honest" and up-front. It was through trial and error I found that I was doing my mother no favor by being totally accurate re the way things were.

As others have mentioned, the Therapeutic Fibs are an actual kindness when done with sensitivity and in an ethical manner.

As time went by, it became easier to extend this kindness. It did not compromise me as an honest person, especially when I knew Mom was at peace.

I am truly sorry for what you are facing with your dear mother, and I would be remiss if I did not add that she has been blessed with a wonderful and caring son. You are a terrific advocate in her best interests.

Let us know how things are going, we are thinking of you both.

Johanna C.

quote:

Originally posted by dj okay:
So I have come up with a good number of "non-lies" that work well most of the time. When she asks to talk to her dead sister I say "I don't have her number in my cell phone"(true). When she asks about her dead brother I say "The last time I saw him he was fine" (also true). You can see how it goes. I made the mistake one time of telling her my father was dead when she asked me point blank. The anquish she suffered the next hour was more than I could stand. I haven't made that mistake again.

dj okay,

I want to specifically thank you for the examples of "non-lies." I went to see Mom this afternoon, and at one point she said, "Where's daddy?" (This is what she called my dad when talking to us kids. He passed away in 1995.)

I said, "What?" (I heard her fine, but needed a minute to gather my thoughts.) She repeated, "Where's daddy?"

I immediately thought of your post and said, "I don't know" (which is technically true, without getting into the whole spiritual debate). I then changed to a different topic, and she started thinking about something else.

THANK YOU THANK YOU THANK YOU!!!

You just made my day! I am glad I was helpful.

See, you don't usually have to "lie" to get through those sticky moments without upsetting them. And that is a kindness.

I rethought my comment on the guilt after rereading it. I admire you for not wanting to get callous about the "lies" by giving up the guilt. But I don't think that will happen to you, anymore than it's happened to me or Johanna. We are still honest people in our dealing with others, we just use these kindnesses in dealing with our ADLO's.

You are welcome!

Victory! I know the feeling of relief when a potentially explosive issue is averted smoothly. Good job! It is HARD! It takes time to get used to, and you'll forget sometimes, but it does get easier. Rather than lying, I think of it as diplomacy :-)

I am another who has not applied "therapeutic fibs" to any other part of my life, and I, too, rarely actually lie to my mom - really it is more about avoiding the truth if the truth would upset her.