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 Didn't tell her, but in my head, they're 18 months out of date and I don't have time to play "leave a message" with Dr.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?
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
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.
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.
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.
● 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.
💜
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!
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.
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.
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.
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