90-year-old MIL lives in our home. Moderate mixed-dementia diagnosis with significant short term memory and executive function loss.
All the experts and caregivers who've lived through this say to lie about the inconsequential things. I'm really struggling with this. For example, I found MIL had a box of prescription eye drops in her room. She said they were from a former Dr and very expensive. I told her not to use until I've checked with your Dr. OK.
I checked the box and the meds expired September 2021. I told MIL about expiration and that I was going to throw them away. She wanted me to check with Dr. first. I said no. Didn't tell her, but in my head, they're 18 months out of date and I don't have time to play "leave a message" with Dr.
But, I saw her wilt a bit. She has no control anymore and here's one more reminder that she lives in someone else's house, isn't allowed to touch the gas range, can't take her own pills and can't remember the name of her dearest friend who passed away last month.
Why didn't I just lie and tell her the Dr. said not to take expired meds?
How do you know when a lie is best?
The fact that the eye drops are somewhat old does not mean that the doctor would not want her to use prescription eye drops. Check with the doctor. Depending on how far along she is, she may be right about this particular detail. There’s a period at the beginning where the memory is hit or miss. If she really might remember it, then don’t assume she’s wrong. On the other hand, if you’re confident she will completely forget the issue as long as she doesn’t see the eye drops again, that’s when you remove the eye drops and “lie.” Maybe I’m an evil mother, but that’s what I did with my children: redirect or tell them to wait 10 minutes, then see if they remember the issue long enough to bring it up again.
as for temperament, my FIL became easier to manage as he got farther into dementia. My MIL was an angry woman all her life, and she became angrier the farther she got into dementia. I think it’s perfectly reasonable to “lie” to someone who is being abusive of you.
I don’t like the word “lie” because it implies you’re trying to take advantage of her. You’re not. You are meeting her where she is.
It’s hard.
When one is not telling the truth they are lying. I fail to see how not calling something what it is makes it easier to cope with. It doesn't.
There's no real reason to contact someone or wait for call backs. In this situation, she probably hadn't used the med in well over 2 yrs and if she had the same problem would get new Rx anyway.
Hence, they will keep telling the LO's 100% truth and expect the LO's to understand and agree. If there is any little inkling of understanding the actual truth, it satisfies their need to believe everything is not as bad as it seems. That soon dissipates, not my rules, just how it works with dementia.
The idea is to keep them calm whatever it takes.
You are reminding yourself that she lives in someone else's
house and all the other things you stated. She is not reminding herself, you are superimposing your thoughts on her, she is no longer able to recognize any of these things you are outlining.
I would say that this an offshoot of your self-imposed guilt which serves no purpose whatsoever, it just keeps you stuck. Guilt is a powerful emotion that takes help overcoming.
There are many helpful articles on the net regarding guilt and the subconscious mind which is your bodies controller. You might want to read around.
Good Luck!
My Mom has dementia. My problem is that you can't tell if she is going to remember what you said or not. In addition, she wears a hearing aid, so you don't know what she really heard. If you go into detail, she tries to understand every little bit of it (her dementia doesn't allow her to) She also has selective hearing (had it her entire life) and selective memory (also a lifelong habit). And she asks multiple people the same question which increases the chance that any fibs I make, will be exposed later.
I have the gift of minimalist conversation. So when my Mom says "what is this pill for", I say "pain". I don't tell her what kind of pain. When my Mom says "and what is this pill for", I say "pain". She said "you mean I take two pills for pain?" I say, "yes" (she actually takes 4 different pills for pain, but I don't need to expand the conversation). "Do I really have to take all these pills?", "Yes"
In the case of the expired meds, if it was in a pill bottle, I would leave the pill bottle and remove all the pills in it. Then on another day, tell her that you found an empty pill bottle and you are going to toss it, OR when you get the new prescription, you just replace the new bottle with the old one. When she notices it, you say "yup, I replaced the empty pill bottle with new pills". Sometimes, my Mom wants to actually SEE the empty pill bottle so I pull it from the trash and show it to her....and yes, it is empty.
In your case with the expired prescription eye drops, I would not have said anything to her until you got a replacement, then just replaced the eye drops. If there was not going to have replacements, then I would have said "Mom, the doctor told me that you no longer need this, I'm throwing it out."
I am not forced into telling my Mom a lie that could undermine her trust in me. I am just trying to be one step ahead of her questions, all the time.
I don't suggest perfecting this art unless you can control it. I can be a great conversation killer....accidentally...I think....
Your mother has dementia and memory loss so she isn't going to remember what you told her anyway. So just lie if it keeps the peace and stops her from getting all worked up and upset.
How hard would it be to just tell her you talked to the doctor and he told you to throw the eye drops out?
Trust me lying is better. There's no reasoning with dementia.
Fibs rarely work with my FIL yet . We aren’t there yet . Some days wish we were there . I think FIL would be happier.
A grandfather insisted he had 1 million dollars in the bank.
The father tried to tell him that wasn't true, but grandpa would not listen.
The father went to the bank, had them make a dummy bank passbook with exactly
1 million dollars in the account. Gave it to grandpa, who was thrilled to have
his money back and never asked about it again.
It's hard to work with the disease of dementia. It's not the person speaking, acting out of character-it is the disease. So....fabulous fiblets help and keeps dementia more manageble too. When my mother was chatting with her friend in her room, it was a lovely conversation they were having. Of course I wasn't part of it, as the person was invisible to me, but not her. My husband with FTD sometimes sees vapor trails-ok, just chalk it up to dementia.
As a good friend told me-easier to roll with it than having it roll over you.
● If I get dementia, don’t argue with me about what is true for me versus what is true for you.
● If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
● If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
● If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
● If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
● If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, dance, listen to music and visit with friends. Those that know me know what I want to listen to.
● If I get dementia, ask me to tell you a story from my past.
● If I get dementia, and I become agitated, take the time to figure out what is bothering me.
● If I get dementia, treat me the way that you would want to be treated.
● If I get dementia, make sure that there are plenty of snacks for me in the house. Even know if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
● If I get dementia, don’t talk about me as if I’m not in the room.
● If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
● If I get dementia, and I live in a dementia care community, please visit me often.
● If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
● If I get dementia, make sure I always have my favorite music playing within earshot.
● If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
● If I get dementia, don’t exclude me from parties and family gatherings.
● If I get dementia, know that I still like receiving hugs or handshakes.
● If I get dementia, remember that I am still the person you know and love.”
ᴄᴏᴘʏ ᴀɴᴅ ᴘᴀsᴛᴇ in Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.
💜
Remember everyone in this forum.....Dementia is a different world. They are not in your world. Give yourself permission to shade the truth or only tell a bit of it. Caregiving starts with CARING.
Treat them as though the are a child who cannot learn.
It was the same thing to me as lying, which has always been against my grain.
Howevah.....in order to spare her the confusion and frustration and even grief that came with telling her the truth - whether it was that so-and-so is actually dead, or no, your mother isn't coming today, etc - I raised the white flag and began to tell her whatever is agreeable.
Being someone's caregiver is very difficult from beginning to end, and it's easier for me to just go along to get along.
Give the word 'LYING' a new definition - it IS a way to support her.
It isn't LYING to 'ALIGN' to support her cognitive functioning and emotional responses / needs.
As a person's brain (chemistry) changes, so do our responses and behavior / way of supporting the person.
- Logic won't matter much (you are using logic) You are responding to her as if her brain hasn't changed. It has - so how you speak (first think about) to her needs to change, too.
Your supportive objectives are to:
1) keep her as calm + emotionally even as possible.
2) understand her reactions + how to respond to them (which you are asking here... )
How do you respond?
1) You DO NOT argue.
2) You can say once, "xx is outdated, I am going to toss it out." (Logic)
3) She may/may not understand and likely she will pursue the conversation.
4) S-T-O-P-. This is where you change your usual behavior/response:
a) Appease her emotional response: "I know this is hard for you." ... "I know you want to keep xxx." (Then do what you need to do).
b) I hear you saying "xxx" (reflective listening). You do not agree or disagree, you simply reflect her words back to her ... so she knows she is heard (important).
c) You change the subject. Otherwise, you will keep this going (a loop). You don't want to do this.
1) Have different 'subjects' ready to go if they do not come out automatically, i.e., (a) "we're be eating dinner soon. We're having xxx tonight. Yyou like xxx.."
(b) " Refocus her to seeing something out the window - birds, flowers, clouds.
Trust yourself: To tell her it is outdated, which it was is TRUE. Realize there is no need for your to continue w/the conversation. Ask yourself: Why do I feel a need to pursue (or prolong) this further?
Try putting a rubber band on your wrist. Whenever you feel yourself 'slipping' into old responses (that do not work and exhaust you - or will), 'snap' out of it.
This is similar to dog training, which is quite similar to how we, human beings, need to re-train ourselves. Shift out of an automatic response - into the present - to be aware to know that we can and need to make new decisions. We that we (you) are in charge of the inner you.
How to deal with how you feel?
1) Observe your responses / feelings. You do not judge them. As in the model of FOCUSING (inner exploratory work I taught), you are 'with' the feelings, you watch them' - they do shift.
2) First, you allow yourself to STOP and feel them. Expect that you may not feel 'good' as this is new behavior. You are interrupting a pattern of behavior: perhaps an entire life of how you were taught to be / respond ('a good girl').
- whenever we (decide, and it is a decision) to change, it feels uncomfortable. You are creating new neuron (brain) connections / connectors. (See Rick Hansen).
Whenever you see / observe / stop / process how you feel: acknowledge yourself. These internal changes are not easy. They will support you to be your best self. Honoring who you are, as you make changes in your (1st) thinking + then (2nd) behavior.
Once the awareness is there of "Oh, I have a choice in how to respond ..." it opens up a world of adventure as you are allowing yourself to move in directions you've never explored before.
While new behaviors do become old habits, we always need to be aware of slipping back into old patterns. Be gentle with yourself. Acknowledging / being aware is the first step. Without that, we do not change. We want to avoid 'automatic behavior.' That is the key to positive change.
Gena / Touch Matters. P.S. I did this behavior modification over 40 years ago, keeping off 70-75 lbs by changing my thoughts and behavior. It includes lots of self-love, self-acknowledgment. It starts w/awareness and making a decision to 're-wire' our brain responses.
I guess look at it this way…a lie is always best. Well, it’s hard to make a blanket statement like that…it may not be always best, however it’s best a lot of the time.
Part of caregiving is to keep the peace. Keep your loved one as happy and stable as possible. In doing that, it will also make your life a little easier. Less arguments, less wasted time, placating the patient.
In the eye drops example, you could’ve just said I’ll check with the Dr. Then a bit later said you checked and Dr said toss them if they are that old. Obviously if she is having trouble with her eyes, then either get new rx for drops or take her back to eye Dr.
Just take a beat during these instances and determine if it’s worth “getting involved” (in discussion, investigation, whatever) and then if it’s not worth it, fib to get it resolved quickly. It does take practice.
To help make your MIL feel like she’s included, tell you you need her help in (fill in the blank). I’m not sure what she’s capable of. I ask my husband to bring a puzzle book or watch TV in our bedroom while I’m in the shower…I tell him please stay near because I might fall in the shower, so he takes it seriously and waits for me. Now, this will change, because that’s how dementia works, it progresses, but for now it keeps him close to me and yet he feels he’s helping.
Whatever your MIL can do, have her help you, and make sure she knows it’s to help you. Whether it’s setting the table, cleaning easy things, folding laundry, deciding on grocery list items, deciding outfits to wear, picking where to eat lunch etc.
To some extent I've had to switch to the realization that my husband's hallucinations or concerns were false but were real to him, the way "pretend" things can be to children. If a child said to you "Can I bring my best friend to the table -- he's an elephant" you wouldn't start arguing (at least I hope you wouldn't) that he can't have an elephant for a best friend, this elephant doesn't exist, etc; you'd know that for some reason unclear to you, the elephant was important to the child, and you'd say, "Oh, what is his name?" and welcome him to the table. (Of course, if the child lived totally in a pretend world past a certain age, you should get medical help. Otherwise you might end up with a child who is addicted to cosplay and is still living at home at age 30, playing video games all night). But an adult with dementia is not going to grow out of it; so maybe the way to look at it is that you now have a permanent small and very needy child. I like your answer, "I am your memory now -- you are safe" and also the idea of appearing to agree to something that is NOT going to happen -- like saying she could drive and just to let you know -- then for her the stress died down and it never happened. Sometimes their bad memories can be useful.
How about saying something like...." you are absolutely right, I am going to take them and put them near my phone ( desk ....etc etc) to remind myself." then take them and put them wherever you feel best ( garbage etc). If she has dementia then her short term memory will most likely not remember what you said if anything about most things and, hence be prepared in all interactions for her to repeat and ask over and over about whatever ... eye drops, etc etc.
When this occurs , a suggestion is to gently redirect the conversation... if you must give a reply to the direct question , then make it short, very short followed by a redirect in the conversation. If her dementia manifests as her perseverating on a topic ( such as eye drops etc), you can try to be direct with her and say that this has already been taken care of and you are not going to talk about it anymore; then redirect with a kind suggestion about another topic ( weather, look at photos, ask her help folding towels , cloths etc etc). If all else fails, and she is safe, just preserve your sanity by walking away and let her have the conversation with herself.......
God bless you. Practice good self care !!
I spent a lot of time trying to engage my mom in the decision making process when she moved here to my town, but she no longer had the capacity for it. I just didn't see it at first. I didn't know that decision making was becoming a challenge for her, so less decision making = less stress.
Things became a lot easier when I'd just go along and outwardly agree with whatever she wanted to do, and then do what needed to be done. At some point, 'out of sight' truly becomes 'out of mind'. So maybe stealth away the drops, and if they're needed replace them with a new prescription, or if not needed (but missed) replace with saline drops. I'm guessing that without the box there she will forget about them unless she actually uses them in a daily routine.
This helped me tremendously: https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf
It really is as simple as that, so don't over think it and just start lying.
Conversation a friend had with her Dad in his NH:
Dad "J can u take the car to the shop" J "yes Dad"
Next visit "J, did u take the car to the shop" J "Yes Dad I did"
Next visit "J, did u pick up the car from the shop" J "Yes Dad got it yesterday and its in the driveway" Dad "good"
The car never left the yard. But Dad was happy.
I dealt with my mother and her dementia for years and say this from experience and from a common sense perspective both. Keep snacks on hand to distract mil from whatever issue she's dwelling on, and hopefully, by the time the snack is gone, she's off the subject of interest entirely.
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Good luck!
And if you second guess every single thing in this manner you will end up going crazy. Your MIL would do better in care where she understands that her medications will be handled by the medication nurse. She will not like it, but that will be the way it is.
When FAMILY is the one trying to manage meds and explain things they are not trusted to do so; there will be arguments and rage from the person suffering from dementia. They will not let it go and the relationship which is 24/7 familial is altered. It enters into distrust and paranoia quickly.
This is likely to get not better but much worse. MIL is incapable of rational thinking about any of this and there will eventually be NO WAY to handle it either by the "therapeutic lie" or the truth.
I am so sorry. People who suffer dementia are losing control of everything, and it is a constant onslaught. When you are the caregiver you are a part of that onslaught, and identified in some ways as "the enemy", the one causing their suffering. There is really no right answer to change that, whether you make up things or you do not.