Greetings all -

My mom has early stage Alzheimer's and is doing well, all things considered. She is still competent, knows most people in context, knows she has memory issues, feisty over the word Alzheimer's and sensitive on some days to directions and help - the usual. She is going downhill pretty fast though, after an excellent period of stability during a drug trial she was in.

Yes, she does have Alzheimer's behaviors - repeats herself, confabulates, and after about 10 minutes cannot carry on a conversation.
I understand for some people this is a drag or makes them uncomfortable. I and my siblings don't push expectations on others to visit with her - but when visitation comes up, the comments are grating. Things like "seeing my sister like that is so sad" or "I don't have the patience for her and I wouldn't want to hurt her feelings" or "we'd invite her to lunch but it is too much, you understand right?" It goes on - like theses folks are asking my permission to not see her. It is tiring - and I need all of my energy to care for mom, not them. In a few more months she may not know anyone.

What brought this to a head is that my aunts and mom for decades have gone on a sisters' weekend trip. This year they told me about if after it was planned (OK), that the place they rented was small so no room for mom (really?), that she wouldn't like the activities planned (not accurate), that she is hard to be around (Yes, her behaviours are annoying) etc. Yet they know mom would be sad at being excluded (though she'd forget about it after a couple of days). I'd prefer they just tell me they are excluding her because it's too much for them and wouldn't be fun. It's true, it would not be fun for them. No hard feelings, really. Some days I don't want to be around her either.

Can anyone offer a short, polite response I can rehearse for these situations?

Find Care & Housing
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
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.
Helpful Answer (19)
Reply to AlvaDeer
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.
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.
Helpful Answer (15)
Reply to lealonnie1
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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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.
Helpful Answer (13)
Reply to BlueEyedGirl94
KarenD1 Jun 10, 2024
Thank you.
See 2 more replies
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)
Helpful Answer (11)
Reply to cwillie
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.
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.
Helpful Answer (11)
Reply to BurntCaregiver
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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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
Helpful Answer (10)
Reply to Daughterof1930

"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.
Helpful Answer (9)
Reply to Geaton777

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.
Helpful Answer (8)
Reply to Grandma1954

This could be a 'good handout' if you want to (try to) educate friends and family although I sense it likely is 'too much' - some people won't understand and some won't care to put the time in to understand what happens to the changing brain/chemistry.

All you can / could do is offer (as below)
Encourage them to consider:
1-a short visit would be appreciated. I KNOW this is hard.
2-Ask them to focus on holding her hand and smiling (not talking or setting up a situation wherein she needs to 'think' of how to answer a question...when she cannot remember or know how.
3-Make simple statements "The weather is lovely today... the flowers are blooming" ... "It is nice to see you today"

Help make communication easier
-The first step is to understand that the disease causes changes in communication skills. The second step is to try some tips that may make communication easier:

-Make eye contact and call the person by name.

-Be aware of your tone, how loud your voice is, how you look at the person, and your body language.

-Encourage a two-way conversation for as long as possible.
-Use other methods besides speaking, such as gentle touching.
-Try distracting the person if communication creates problems.
-To encourage the person to communicate with you:
-Show a warm, loving, matter-of-fact manner.
-Hold the person’s hand while you talk.
-Be open to the person’s concerns, even if he or she is hard to understand.
-Let him or her make some decisions and stay involved.
-Be patient with angry outbursts. Remember, it’s the illness “talking.”
To speak effectively with a person who has Alzheimer’s:

Offer simple, step-by-step instructions.
-Repeat instructions and allow more time for a response. Try not to interrupt.
-Don’t talk about the person as if he or she isn’t there.
-Don’t talk to the person using “baby talk” or a “baby voice.”
-Be direct, specific, and positive

Here are some examples of what you can say:
-“Please do this,” instead of “Don’t do this.”
-“Thanks for helping,” even if the results aren’t perfect. You also can:
Ask questions that require a YES or NO answer. i.e, say: “Are you tired?” instead of “How do you feel?” Limit the number of choices. i.e, “Would you like a hamburger or chicken for dinner?” instead of “What would you like for dinner?”

-Use different words if he or she doesn't understand the first time. For example, if you ask the person whether he or she is hungry and you don’t get a response, you could say, “Dinner is ready now. Let’s eat.”
-Do not say, “Don’t you remember?” or “I told you.”
-If you become frustrated, take a timeout for yourself.
-Communicate clearly and calmly.
-Use short, simple sentences.
-Don't talk to the person as you would to a child – be patient and have respect for them.
-Try to communicate with the person in a conversational way, rather than asking question after question which may feel quite tiring or intimidating.
* I've been working with dementia inflicted individuals for 10-15 years now.
* The key is being able to put myself in their shoes (many people cannot do that).
* Realizing that communicating with a person inflicted with dementia is like learning a new language; most people will not know how nor take the time to learn how.

* I've learned w a client speaking gibberish (2 yrs) visiting / working with her):
1) She always remembered who I am (altho I didn't expect this over 2 yrs)
2) She'd would respond to affection me saying: "I love you M" ...
3) I'd smile-be energized to see her;
4) agreed with her (I couldn't understand);
5) saying "that is a good question, I'll think about it ...
6) watch for her cues.
Important: Know the visit is important; even if not many words spoken.

Give family-friends a book: "How to communicate with a person inflicted with dementia" - they may - or may not - appreciate your efforts although your intentions are heart centered, wanting the best for your mom.

Gena / Touch Matters
Helpful Answer (8)
Reply to TouchMatters
Snowgoose Jun 14, 2024
This was extremely helpful to me. I wish I’d had this information 10+ years ago - my husband is a long-term TBI survivor (2009), and much of this explains his frustration and even anger over the years. His level of mental deficit from the TBI closely parallel early dementia, but has been stable for about 12 years.

He is now, at 72, beginning to progress again (now adding actual dementia, I believe?) to an already damaged mind.

Your information may help me more effectively manage our future conversations. Thank you.
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.
Helpful Answer (7)
Reply to JoAnn29
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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