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There's nothing good about dementia. Everybody loses. Mom, you, her sisters, your siblings, everyone. People are afraid of dementia and treat it like a psychiatric disorder. Visitors are afraid mom will say something awful or start foaming at the mouth, I guess. I watched all the visitors dry up and go away when my mother went into Memory Care. A few came at first, but never returned. It's hard. Awkward. Mom's behavior was unreliable. She could be sweet as punch or hurling nasty insults, you never knew. She could be talking gibberish or making up convoluted stories. Who wants to bear witness to that? Even I didn't want to go visit.

People feel GUILTY when they write somebody off. They're trying to explain why they can't or wont visit mom to YOU, so you won't judge them too harshly. That's what I'd say to them....."its not for ME to judge YOU auntie, do what you feel in your heart is best". Leave it at that.

As far as inviting mom to the sisters weekend goes, why would they do that??? Your mother is in no condition to do such a thing anymore, let's face it. The trip would be ruined for everyone bc taking an AD sufferer out of her regular environment is not a good idea.

A far as devoting your life and all your energy to mom, start thinking about making decisions FOR her now. Not expecting her to tell you what she wants or you're agreeing to jump down the rabbit hole WITH her. She can no longer use logic or reason to determine what she wants, so it's your job to provide what she NEEDS. Which may be Memory Care Assisted Living as things progress. Mom is not the only person who matters in this equation. You matter too. Keep that in mind and put out of your mind moms happiness. That ship has sailed. Safety and comfort for ALL is what matters now. You need not worry about the visitors who can't bring themselves to visit anymore. You have enough on your plate as it is.

Best of luck with a difficult situation.
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Southernwaver Jun 11, 2024
Exactly. Never take a woman with Alzheimer’s/dementia out of her environment and routine, overnight. It’s a terrible idea.
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I’m befuddled why you need a polite but firm response?

Do you want to guilt them?
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My mum also used to go on short breaks with her sisters. I recently came across a picture of them in a beautiful seaside town, smiling, enjoying the view, enjoying each others company. I'm glad that she had those lovely experiences before her life became so small.

She was the youngest of 5 sisters and the second youngest of 9 brothers and sisters. So when she had a debilitating stroke that led to dementia, I used to hear, "I hate to see my baby sister this way". At times I would reply, "I hate to see my mum like this, but this is how she is and she's still my mum".

My aunts would still go out on trips together. I understood: although she would have loved the idea of joining them, my mum wouldn't have enjoyed it because she would have got too tired too quickly and she would have been out of her comfort zone. People with dementia need stability and routine, not novelty and adventure.

I may be wrong, but your message and question makes me think that you are struggling with accepting your mum's condition and that's why you are hurt by your aunts' and others' apparent neglect of your mum.
Your profile backstory also makes me feel as if you are putting your mum first, above your own needs and your own wellbeing. You seem more concerned with your mum's happiness, so you're hurt by these perceived snubs.

Things will never be the same. When you truly accept that, you will feel better about how the world (including your aunts) is moving on without your mum.

I've been going through this for thirteen years, so I've become a little hardened, I admit. My aunts have now all died, and I miss them. They were the last link I had to my mum, who has been disappearing bit by bit, until there's barely anything of her left.
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Please read the response from AlvaDeer here in the comments because she is right.

You and your family are allowing your mother with Alzheimer's to be at helm of the ship and that ship is now the Titanic. I too read your profile and I hope for sake of everyone on the road, sidewalks, and in parking lots, that you are not still allowing your mother to drive.

If a person cannot live independently anymore because of dementia they certainly cannot drive or be allowed to go somewhere themselves.

There is no short, polite response you can give to family and friends who don't want to visit her anymore. It's their choice and some people can't deal with the lying (confabulation), the repeating, and the other Alzheimer's behaviors.

It's totally understandable why her sisters are excluding her on the weekend trip. The reasons they gave you are all valid, but often there's another reason in these situations that no one mentions. People are afraid to be responsible or even around a person with Alzheimer's/dementia because they don't know how to interact with them, how to babysit them, or how to provide the care they always need.

I was a homecare caregiver for 25 years and can tell you an Alzheimer's meltdown or an incontinence "accident" is a harrowing experience for a professional to deal with especially in a car or a public place. Also, your mother would ruin the trip for everyone with her behaviors. You can't blame your aunts for not being willing to take her with them. They're right.

I think your mother should have a paid companion to spend time with her and to take her out. There are all kinds of specialized activities for people with dementia they can go to. Visit your town's senior center (if there is one). They will provide you with good resources. Is there adult day care in your area? They provide all kinds of safe activities and outings for people with dementia. It's worth looking into.

Move your mom into that in-law apartment if she't not already living there and hire help (that she pays for). Her Alzheimer's journey may last a very long time. You and your siblings will get burnt out quick going the way you are now.
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AlvaDeer Jun 11, 2024
Thanks, Burnt for taking a stand on the podium of "keeping it real".

The profile of our OP, Karen, says that mom is driving. I, too, hope she is not.

I also agree that the sisters are DEAD ON RIGHT in not wanting her to come to the vacation.
No one (but THEY themselves) is being realistic with her, and they should be the last to have to try to level with her about limitations on a vacation.

I think that a lot of the responses in this thread are missing the same point that the OP and her devoted family are missing.
This isn't about people and their discomfort and what they say and what to say back to them.
This is about a woman in the early to middle stages of dementia who is in complete denial, and whose family seems to be right there with her, unaware that she cannot say no, unaware that she cannot make decisions like buying into something, building an apartment, going on vacation, driving, where she will live, and etc.

I don't blame a soul, but no one is looking at this situation at all realistically and as devoted and loving as they are, I think there is a potential for all this denial to do great harm to all involved, and especially to the mother.

I so often feel like the "mean girl" and I occ. can even embrace it. But here I feel truly sad for our OP. The entire family is so deparate to make everything OK. And it ISN'T OK! And I feel awful to keep shouting "WAIT, this is about more".
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No response is the best response . I tend to avoid negative people and situations . It seems you have feelings Of sadness . I Know with My Mom I was alone In caring for her the last 9 Months of her life . Her sister came to visit her twice . The other sister did Not . No One really got Involved except for one visit . One brother did pay for her cremation and another to scatter half her ashes in Hawaii . Her Own daughter wouldn't help out either and said " It was too depressing . " I have learned everyone has their Limits . There are times I have Lost faith in Humanity . No One called me after My brother Passed - I got a text from My son and sister " Sorry Billy died . " I had a tenant Kill himself and No one would claim His belongings . People do not want get Involved . That is our society today . Your Mother seems very well taken care of your the One who needs the support or a Big Giant Hug . Take care of yourself and start focusing on you and what makes you Happy . We get lost In other peoples opinions or lack Of communication and empathy .
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BurntCaregiver Jun 11, 2024
@KNance

I'm sorry about your brother. That is very sad you were told in a text message. Some people have no tact.

Personally, I never understood why family and friends can't visit a "loved one" when they are sick or have dementia. No, they should not be expected to be caregivers, but coming by for half an hour is something all adults should be able to handle. To me the excuse of 'not being able to see them like that' is the excuse of cowards who cannot deal with reality.

Life happens to us all and sometimes bad things like dementia happen too. Anyone can pull themselves together to visit a person.

I had a care client years ago whose LBD had reduced her to a bedbound, non-verbal, invalid who couldn't even turn over on her own.

She had been a popular woman with scores of friends for many years. When she started getting sick all her friends scattered to the wind but one. This one lady came every week, brought her a meal (which I'd have to feed to her) and stayed an hour talking to her and showing her pictures of her grandkids and catching her up on things. Who knows if she even understood any of it. She did this until my client died.
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The OP and Mom's (and the siblings) backstory is important to read before responding. Alva summurized it in her very cogent response.
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AlvaDeer Jun 11, 2024
Geaton, thanks for mentioning my original response to KarenD1. While this is a devoted family this has also become all about Mom, and mom is not making good decisions. The family has 1. Bought into an expensive care facility only to have mom walk away with a "no". 2. Built a 40,000 apartment in one sibling's home only to have mom refuse it 3. allowed mom with her increasing dementia to decide where she will live (currently with OP) and allowed her to drive 4. And worries what people will say, or what they should say to people.
In all of this the main point is being missed.

Mom is meanwhile acting as captain on a ship that is sinking while the wrong things are worried about, and my fear with this exceptionally devoted family is that in allowing mom to continue to "take the helm" this is going to end in a disaster.

Again, the wrong things are being worried about, the family is working (and spending) itself crazy and mom is just able to ignore what's happening to her.

It is seeming to me that those who are worried about "grating visiting comments" need now to be worried about the dementia, and mom's "feisty" attitude about it (which I interpret as extreme denial of her condition.

This is a really complicated family situation and reading the long writeup by our OP in the profile (something I so often fail to do) is really helpful in looking below the original question about what to say to those visiting.

In all truth I think those visiting currently are the only ones looking at what is happening to mom realistically.
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My 91yo mom sounds about the same level as yours right now, give or take. I am basically the only one who sees her. My husband has always been supportive and he'll come along for visits also. Other than that, my expectations from immediate family is now a thing of the past. They’ve shown who they are and now that I’ve come to accept it, I feel much more free. It takes practice to be patient with the made up stories, the looping, and lack of lengthy back and forth conversation. People who occasionally visit have not mastered the skill of being with a person like this.

I doubt another trip will be planned including your mom. They've already set precedence on that situation. It feels to me like you're hurting on your mom's behalf over the exclusion of her. It's a tradition and it appears to have just ended. My mom had traditions as well and the first one she missed, it bothered me more than her. It's okay for you to be sad when these things end for her.

In regard to the visits: Just don’t ask people to visit. They know where she is. Don’t put yourself in the position to hear the rejection or the excuses. Maybe the reasons are sincere, who knows. If they call and start up with the “you know, I’d like to visit but I just don’t think…” cut them off and say “you just let me know when you’d like to and I’m sure mom will enjoy it.” Then immediately cut off to another topic. Become a master at changing the subject.
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As a reply.. "Yes, OK".

What more can be said? Are you hoping to shame them into visiting? What for? Who would that benefit?

What is this about, really?

Anger? Anger at these previously close people because they have retreated?

Grief? On behalf of Mom. That Mom is losing contact with her friends & some family members?

Saddness? At Mom having Alzheimer’s Disease? At how this awful condition can shrink people's world.

Dementia happens. Friends & family can no longer relate in the same way. Many/most will step back.

The ones that stay close & the main care staff become the person's social world. A smaller world is what they can COPE with. It keeps changing size.. just as we downsize a home. Maybe to an apartment/condo. Then to a room in group assisted living.

A lady I met (became a favorite) was very happy with just her bed & window that looked out at 'her tree'. It was enough. She no longer remembered names or faces but enjoyed a smile or song & her tree.
☺️🌳❤️
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Beatty Jun 11, 2024
I meant to add, if you DO feel anger, grief, saddness - that is OK!
(((Hugs)))

I certainly feel these bubble up higher from time to time. I don't want these feelings to 'eat' me though so try my best to feel them, sigh, let them go then refocus on what I do, what is in my control.
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BTW,
You and siblings are doing a great job with your Mom!
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AlvaDeer Jun 10, 2024
While I agree this is a very DEVOTED family I think that there is poor limit setting going on here, and very expensive choices. Then Mom is just allowed to say no to everything any time she likes. She has clear memory issues but is driving if you read the profile. The family has spent the siblings money on buy in on a care home that Mom then just said "no" once again to. Then the family built on to one siblings home a private apartment and spent some 40,000 on it and Mom has said "no" once again.
We can say this is doing a "great job with mom" or we can say that mom is running a ship she has no idea any longer HOW to run, and the result is chaos to my mind. I am truly worried for them all as Mom has now decided she wishes to stay with our OP.
Again, Send, I agree this is a loving and devoted family but I think they are ALL going down with this ship with Mom at the helm, and I worry for them.
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I would say that if they won’t visit, perhaps they can send a card.
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That is a tough call Karen. So sorry this is happening to you, your Mom, and family.

Who is bringing up visiting? Overall, it does sound like you had expectations of your Aunts including her?

Truth is, there is no one who wants to sit through the pain and confusion of someone confabulating, repeating the same circle of stories (sometimes with anger or rage.) It is painful for you too.

I was getting physically ill having been forced to hear this or reject a very nice person, not a relative.

No explanations needed at this time.
You can say to people, "Please, don't even mention it".
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Not Mom's fault she got dementia.
Can happen to them anytime, so they will feel the burn themselves.
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I really liked BlueEyedGirls response.

 "I really don't have any expectations of people" This is how I got thru. My brothers just could not see Mom that way. Dementia had made her old and frail. I understood but...I had to deal with it everyday. I had to put a wall up to deal with it. I accepted it was just me. I had the POAs and I made all the decisions, right or wrong.

I agree, there is no reason to bring up the trip with Mom. I also agree that u can say "I understand" but please, I don't want to hear about it.

I agree that it would be nice to all have lunch together. Maybe find a place that has a private area. Mom can sit with her sisters and you and DH off at another table, just in case. I say lunch because dinner maybe sundown time. Look at the menu ahead and pick what you think Mom would like right down to her drink. This way no decisions for her. Ask Aunts not to talk all at once. Not to ask questions Mom has to process. Just talk in general bringing her into the conversation. "Sis, you would not believe what my grandson did yesterday" Mom does not need to answer. Don't make the lunch too long. My Mom was good for maybe an hour.
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fluffy1966 Jun 14, 2024
JoAnn29, what a practical last paragraph you shared, where you outline what a "possible" outing might look like and I would suggest around 2 pm for a Late Lunch. No questions that Mom need answer. Short sharing of stories about friends or grandchildren. Everyone at the table "talk one by one", no chattering amongst the diners. Swoop Mom into the conversation by "telling stories" of children, pets, the new Minister, anything that the speaker has in common with Mom. ASK NO QUESTIONS!!
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No. Not really.
Each situation is different and each demands a different response.
It would take writing a novel to give you the 100s of responses to 100s of comments.

I have read your long, very informative profile about your family, their history, your Mom and the beginnings of her dementia to now final diagnosis. It was accompanied by descriptions of her denials, her refusal of getting a diagnosis, her final diagnosis, family attempts to get her placed in good care, her refusal of same, family BUILDING an apartment in your sibling's home to the tune of 40,000 from each of you (!!!!), and her refusal now to go there, but instead wishing to stay with you.
Let me tell you. THIS IS A LOT. And it is ALL ABOUT HER!

You're looking for a way for this to all magically work; that's magical thinking really at its worst.
You tell us over and again "she doesn't want".., "she won't"...."she isn't happy with", "she doesn't believe......"
Somehow the lives of you, and your siblings as well, has been about a way to make this OK.
You have taken on responsibility, invested money you may need, allowed mother to continue to make bad choices, and now you feel that there must even be a way to make what others SAY or think all right.

Your mother has dementia.
You can either see to it that her POA, along with agreement of other siblings gets her into care and understands that NO, she will not be HAPPY, likely ever again to her dying day
OR
You can go on with this doing her bidding (while she is too ill to make choices), and worrying what everyone else says, thinks or does.

I don't mean to be brutal, but you and your entire family are wearing yourselves ragged trying to FIX something that will NEVER be OK, can NEVER be fixed and will not EVER have a happy outcome.
Your mom has dementia. Happiness is not in the equation.

I would get some FAMILY counseling (Certified Licensed Social Worker with counseling practice might work best) now to come up with what honest limitations and decisions have to be explained to your mother. It will not be a happy time. It will be sad. You all will mourn it. But you must survive it, and at this rate I don't see how you can.
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igloo572 Jun 10, 2024
A big shout out to you for going thru that backstory.
The house part, well my take is the siblings and THEIR SPOUSES are still quite quite salty on all the time $ & energy for that build and all for nought.
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There is no need for you to make any comments.
You can not change them or how they feel, react, what they do or don't do.
If MOM asks about the weekend you can tell her SHE has to ask "Aunt Suzie and Aunt Betty". THEY can come up with some sort of explanation.
You and your mom can plan some special Mom and Daughter outings.
What they do and or don't do is on them.
They are going to have to live with the decisions they have made.

Now to play devils advocate here....
It is difficult traveling with someone that has dementia.
There is always the possibility that the person will not so well with a change in location, different people, different routine,
What happens if 3 hours into the trip she wants to go home? Or goes for a walk and does not know where she is?
It is a LOT of responsibility to be responsible for someone that has dementia.
In another post recently I told someone that was planning a family cruise to leave his wife home in Respite. My comment here is the same, your mom will do better at home with the same surroundings, same routine.
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When my mom had the devastating stroke her friends disappeared like sprayed roaches. They told me the same lines of “hating to see her like that” (which really means, I can’t bear to think of myself in that condition) and “it’s hard to know what to say” (which really means, this is too much effort when I could be doing something more enjoyable) I told many of them mom would be glad if they’d simply come hold her hand. Presence means more than anything you’ll do or say. Didn’t do any good. Giving myself the gift of acceptance was the best thing I did. Wishing you the same and much peace
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Thank you for this. This sisters' weekend thing was a bit if a final straw for me. I need my energy for my mom, my husband and my job and I don't have much left some days for anyone else. The texts and calls of "apology" from the aunts was too much.
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Fawnby Jun 10, 2024
I understand. It's good that you want to save your energy for the important things. I'm a bit further down the dementia caregiving path than you are; my DH is the fourth family member with dementia that I've cared for. My two cents? I've found it easier not to have much family involved. Too many fragile egos, too much advice when they don't know anything about it, and too much additional work when they want to drop in. Family that actually helps with some of the tasks are welcome. The social gabbers and fault-finders? Not so much.
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I think it's hard for your moms friends and relatives to see your mom like that, and it probably gives them anxiety. " Could that be me," kind of thing

When Bruce Willis got sick, I heard, his friends , Arnold S. (Can't spell his last name) And Sly would got to his house and watch movies with him. If there is something like that they could do. It sounds like they want to do something for your mom but just don't know what. So you could try and have a movie night and invite them and hopefully you
Can get a break.

It's one idea, best of luck, you and your family sound like you are doing really good, in this horrible deasses
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ElizabethAR37 Jun 11, 2024
Yes, "That could be me" is a thought process that may indeed pass through the minds of mom's older friends and relatives--at least some of them. Contemplating the possibility of dementia is absolutely terrifying to many old people, so "out of sight, out of mind"! While not politically correct to think along those lines, at 87 I can kind of see how it could occur. Obviously, it can be less than helpful to the patient or caregiver.
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This doesn't answer your question but if you are feeling like they really "should" take a moment to visit your mom it might help to arrange a get together on your schedule and at a place you know your mom is still very capable of navigating - coffee or a picnic in her back yard for example. I also think having a group can be easier as they can visit among themselves and your mom can join in or not as she is able, or she can retreat entirely if she chooses.
People are often just afraid of the unknown, so demonstrating that visits don't have to be fraught with uncomfortable or scary moments may help them feel more inclined to overcome those feeling.
(And it's okay to judge people for not making any effort, especially in the early stages when our loved ones still know and appreciate friendly faces - I know I do)
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KarenD1 Jun 10, 2024
Hi and thank you - I really don't have any expectations of people any longer, though your response will direct me to make sure I'm not projecting any expectations on others.
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"Ok, I understand -- still she'd love to see you.... let's get something on the calendar for you to come and see Mom for a moment. I can plan a casual lunch here (or other activity) and you can pop in and join us for a little while."

If the goal is to entice them to visit, you will need to make it as easy as possible. If they go to where your Mom is, it is better for her, to keep her in her own environment because change in venue and routine is hard on LOs with ALZ. Don't plan things in the afternoon in case she Sundowns. If you host it and have something to do (like prep food together, eat or do an activity) then there's not awckward conversation and your Mom struggling to keep up with remembering people, places and past events. Plus, your guests can choose to leave when it's comfortable for them which will make it more appealing for a visit.

Your family and Mom's friends don't need your permission to decline, they're trying to give you a polite reason. They get to decide if they visit or include her or not, regardless if you agree with it or it makes your Mom sad. Not everyone is as mature and compassionate as you. Maybe they will be in their future.

You will need to stop expecting things of people and situations. Expectations = premeditated disappointments. Also be careful not to "project" your personal concept of daily life onto your Mom. I learned a lot from Teepa Snow videos on YouTube. She's an expert on dementia and caregiving. I got a lot of great insights on why and how dementia causes our loved ones to be how they are and good strategies to engage with them for more peaceful and productive time together.

Bless you for choosing to give hands-on care for her.
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Honestly - there may not be anything more specific you can say for every situation except "I get it, I understand" and leave it at that, if the goal is to preserve the relationship.

In the situation with your aunts - I would specifically ask that they absolutely 100% never bring up the trip in front of your mother ever again - period. She may not remember it - or conversely she may choose THAT to fixate on. If SHE brings it up you can deflect with therapeutic lies, but if they bring it up she may get it stuck in her head that they went without her and you may never hear the end of it.

And in addition - you can tell them that you love them - but for the sake of your relationship with them - if they are not going to include your mother going forward -you would appreciate it if they don't bring it up to you again - you don't want to hear about plans or how the trip went. Because while you know that it is difficult sometimes being with her, and that her unpredictable behavior is hard to manage - she is still your mother and their sister and you have all lost the person you love to this disease and special things like this are just another part of the loss and you would rather not know about them.

For other people when they make comments -I think the generic response is ok - "I understand" - because you do. "I get it" - because you do. "It's ok" - because it IS. It may not feel like it. But you might do the same if she were someone other than you mother. You just might have the presence of mind not to say it the way they do.

People often use decidedly poor word choices in grief when they don't know what else to say. They say inappropriate or somewhat offensive or unintentionally hurtful things when they don't mean to. You can choose to address them in a way that puts them in their place - but I would reserve that for the more egregious or clearly intentional events - and give grace to the ones you know are trying but not necessarily succeeding to explain themselves very well.

Good luck. I wish you the best. It's not an easy walk to walk.
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KarenD1 Jun 10, 2024
Thank you.
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