Can anyone offer a polite, but firm response to family and friends who don't want to see my mom?

Wow, how sad. It seems as if they were there for the good times, but bailed when things got difficult. I'd call them out but don't expect anything from them honestly.

I'm hearing that you want to be respectful to these people, but you would rather they be honest with you than look for your absolution for their behavior.

In that case I think I would acknowledge what they're saying is true, but follow up with a clarifying statement.

I have a similar situation with my sister who has early Alzheimer's and is now end stage. Some close friends and relatives have done this exact thing. I don't need enemies after this, but I'm also not the person to forgive them.

I have said something like, " I realize that it's really difficult but we only have a small window left with her being able to even communicate THIS well, So, while I don't expect you to take her away for a weekend or anything like that, it would be really nice If you could spend some shorter times and come see her. I don't want you to regret it later on when she's not able to communicate or recognize us anymore or when she's gone. But that's totally up to you and what you're comfortable with. But I have to tell you, it's really uncomfortable for me when you say things like 'you understand right?' I do understand, but it's really hard for me too, and asking me THAT makes it harder."

Maybe you could condense it somehow if you think that's helpful. It's pretty longwinded! Sometimes when I'm trying to be tactful I get a little too wordy!

Wash your hands of them. If they can't be bothered now, don't let them be bothered later. They have shown who they are. Let them live with it. When their guilt sets in, and they want to see her, tell them, "Well, she's busy right now and can't be bothered. You know how it is."

Move on from them and focus on Mom. Keep her happy, motivated, and laughing. Take her on outings and into the sunshine. Do things she loves doing. Love and enjoy her. She'll say some pretty funny things. Just enjoy her. My mom said things that had me giggling for days. I still laugh about them.

Blessings to you on this journey.

KarenD1: Perhaps the sisters feel guilty. Maybe they should not have asked your mother on a trip. Your mother cannit do such a thing anymore, sadly.

Acknowledge their discomfort--"It IS very sad to see her declining" or "It is hard to predict her behavior" but without any pressure or expectation that they visit or include her. They might be relieved to hear you say those things yourself

For 12 years with mom, I literally “hated” my sister for not coming to visit, she moved to another state right after mom went in to nursing home. After 8 years she came back n only visited for an hour every 2 weeks. After blaming god for mom’s illness and awful sister…I rediscovered faith when my dad was diagnosed with Alzheimer’s and mom passed away in 2020. God has a plan for all of us. I am now the caregiver for dad and sold my home to take care of him in his home. since 5 years ago. my sister still does the same, every other week. Once I forgave her actions and saw how happy dad would get when he saw her…I had to accept her because that is what god would want. I’m so much happier and thankful I can care for others, even with anklosing spondylitis. Yes, moms friends n dads abandoned them once the memory became worse. It was their loss not mine, my dads or moms. Life is great and we have learned so much…..let it go.

 "we'd invite her to lunch but it is too much, you understand right?"

I understand it is hard, but no, I don't understand why you are choosing to exclude her when her time that she can spend with you is coming to an end. It is your choice, but please understand it is not my responsibility to make you feel better about those choices. I am choosing to spend as much time with Mum as I can and even though it is very hard for me, I won't make excuses . She deserves our love and support. Please stop asking for my approval,

Maybe long winded and not as polite but that is what I would say.

My brother lives across the country and for years he had no patience for my mother’s memory loss when they talked on the phone when she was in her earliest stages. When he was in the area, he didn’t see her much, maybe go for dinner or something while he visited friends or stayed at the family’s summer house. I don’t think that he realized her condition until he stayed at the summer cottage with her a couple of years ago. He realizes now that she isn’t trying to be difficult intentionally. He also knows he can’t keep his instinct to argue or get mad, as he would in the past, under control all the time though he is much more patient. He does include her on his visits here and does have her stay with him at the cottage but only for a night or two at a time and with a caregiver who can manage situations he can’t. He handles her finances and business types of things which is a lot of work for him but doesn’t require him to spend long periods in person. I am glad that he now sees her decline as not her choice and realizes what he can and can not handle. I would rather he not force himself to spend more time with her than he can keep his cool since he starts talking loudly trying to get her to listen, she takes it as that he is mad at her, and the stress builds and affects everyone.

I found myself unable to keep up with her needs and my own life at one point and that is when we hired caregivers. They do a better job at doing things for and with her than I did no matter how hard I tried. At times I do feel inadequate but I remind myself that we each have our skills and weaknesses. They can handle her day to day needs and doing things with her better than I can and I can handle visiting her, managing her schedule, listening to her complaints and fears and such better than my brother. My brother can’t handle as much of the personal interactions as I can so he manages what he is best at. I would rather not have people trying to take on more than they feel comfortable with. Some of my mother’s friends call her once in a while but often I have updated them on how she’s doing beforehand, just as I do when her friends visit. They can choose to go through with it or not. I don’t mention the possibility to her until they feel comfortable with making plans.

As for things that my mother doesn’t want to do but has to, or things she wants to do but can’t, one of her caregivers, who is really good at that, and I work as a team. Just as you can’t expect everyone to be able to handle seeing her “that way” you also can’t let her do whatever she wants. She is basically the child and you are the parent now. I doubt she let you choose where the family lived or other important decisions when you were a kid and you can’t let her dictate your families lives now. None of us can always get what we want! That is life. It may be hard for seniors with cognitive issues to understand just as it is for young children to understand. I don’t know about you but when I was a kid I complained about things but it didn’t mean that I then got my way! My mother doesn’t like things enforced but we have to stand firm. It will be interesting when she needs 24/7 care and that time is approaching. We will give her a choice between more in home caregivers (if that is still reasonable) or moving to a facility. That’s it, one or the other, no choosing door #3! If she got to dictate the options then it would result in serious health issues and accidents.

Good luck, it is hard to see a loved one decline. Not everyone can handle everything and it is probably best that those most uncomfortable and who get most upset not be put in those positions. (I apologize for all the rambling!)

My brother lives across the country and for years he had no patience for my mother’s memory loss when they talked on the phone when she was in her earliest stages. When he was in the area, he didn’t see her much, maybe go for dinner or something while he visited friends or stayed at the family’s summer house. I don’t think that he realized her condition until he stayed at the summer cottage with her a couple of years ago. He realizes now that she isn’t trying to be difficult intentionally. He also knows he can’t keep his instinct to argue or get mad, as he would in the past, under control all the time though he is much more patient. He does include her on his visits here and does have her stay with him at the cottage but only for a night or two at a time and with a caregiver who can manage situations he can’t. He handles her finances and business types of things which is a lot of work for him but doesn’t require him to spend long periods in person. I am glad that he now sees her decline as not her choice and realizes what he can and can not handle. I would rather he not force himself to spend more time with her than he can keep his cool since he starts talking loudly trying to get her to listen, she takes it as that he is mad at her, and the stress builds and affects everyone.

I found myself unable to keep up with her needs and my own life at one point and that is when we hired caregivers. They do a better job at doing things for and with her than I did no matter how hard I tried. At times I do feel inadequate but I remind myself that we each have our skills and weaknesses. They can handle her day to day needs and doing things with her better than I can and I can handle visiting her, managing her schedule, listening to her complaints and fears and such better than my brother. My brother can’t handle as much of the personal interactions as I can so he manages what he is best at. I would rather not have people trying to take on more than they feel comfortable with. Some of my mother’s friends call her once in a while but often I have updated them on how she’s doing beforehand, just as I do when her friends visit. They can choose to go through with it or not. I don’t mention the possibility to her until they feel comfortable with making plans.

As for things that my mother doesn’t want to do but has to, or things she wants to do but can’t, one of her caregivers, who is really good at that, and I work as a team. Just as you can’t expect everyone to be able to handle seeing her “that way” you also can’t let her do whatever she wants. She is basically the child and you are the parent now. I doubt she let you choose where the family lived or other important decisions when you were a kid and you can’t let her dictate your families lives now. None of us can always get what we want! That is life. It may be hard for seniors with cognitive issues to understand just as it is for young children to understand. I don’t know about you but when I was a kid I complained about things but it didn’t mean that I then got my way! My mother doesn’t like things enforced but we have to stand firm. It will be interesting when she needs 24/7 care and that time is approaching. We will give her a choice between more in home caregivers (if that is still reasonable) or moving to a facility. That’s it, one or the other, no choosing door #3! If she got to dictate the options then it would result in serious health issues and accidents.

Good luck, it is hard to see a loved one decline. Not everyone can handle everything and it is probably best that those most uncomfortable and who get most upset not be put in those positions. (I apologize for all the rambling!)

I think people are afraid of what they will encounter and it’s just easier for them to not be around the person with dementia, TBI, or brain cancer, which was the case with my brother. My youngest brother was hesitant (afraid?) to visit so I explained that our brother would get a little confused but his personality was fairly intact. When he’d start to check out (stare out and lose track of the conversation) it was a sign he was getting tired. Nothing scary. I have a sweet photo of them.

As far as travel—that’s a problem. It’s very confusing. My niece and hospice took him to a pizza pub to hear a duo play. As a guitarist he loved it. But when they brought him back to the nursing home he’d insist he didn’t live there. It wasn’t his apartment. My 22 year old niece had to soothe her dad and convince him he was in the right place. I don’t think people realize how disorienting travel can be for people with brain problems.

I think you said it here.
You say you'd prefer they just tell you they are excluding her because she's too much. And that there's no hard feelings. Can you say that directly to them?

Otherwise, you don't owe anyone any lengthy response. Simply reply, "That's fine." and leave it at that.

Maybe if you tell friends and family one time that you are not in charge of your mother's social calendar, and they can contact her directly if they wish.
Hopefully they will get the message that they are selfishly wasting your time and energy on their needs.

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)
or
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

My heart goes out to you and I appreciate your question.
Initially, I sense that you would 'do better' to accept how others respond for your own well being to be as present with your mom as possible. People shunning her or not wanting to see / be around her will likely not change. You have to change how you 'hold' the situation (which is heartbreaking).

I believe:

1) "Most" people either:

(a) do not understand what dementia is nor how to communicate/connect with a person inflicted;

(b) they do not know how to extend their self / project how another person feels (i.e., confused, dealing with a changing brain, fears);

(c) they haven't developed the ability to feel / be compassionate - although they could feel that way and still not know what to do.

(d) "Faulting" a person for their abilities or decisions won't make the situation better nor meet your objective (connection with family/friends for your mom).

Understand, with compassion (it is asking a lot from you, I know):

2) People are uncomfortable with themselves - and based on emotional maturity (not age), they will either make excuses to you (why they won't visit/interact) because they may feel embarrassed and / or simply cannot own up "I am uncomfortable" and/or "I feel anxious / anxiety around her."
People do not like being uncomfortable.

- As you say "feisty' over the word Alzhemzer's' - tells me that you are wanting to / have / trying to explain what is happening to your mom. Explaining to her doesn't help her at all - it will frighten, confuse, and trigger fears.

What I would say: "Everyone's brain changes... we do the best with what we have." And stop.

Using logic and facts will not help her 'feel better'. What you want to focus on is keeping her as calm and emotionally even as possible.

What I would do:

1) Read / google Teepa Snow "how to interact with a person inflicted with dementia" - webinars, You Tubes, books

2) solicit / find volunteers (through local churches, high school / colleges. People that do not have an established relationship with your mom.

See this website: https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/understanding-how-your-relationship

In part, it says:

It is important to remember that different people react to the same situation in different ways. Some people will not be helpful at all and will put distance between them and the family. This is often because they feel that cannot cope with the changes. However, some people who care for a family member with dementia find that their families experience a new kind of closeness, as they work together to deal with stressful situations. Some people even show strengths that they never knew they had.

Everyone has a need for companionship and physical intimacy. People with Alzheimer's disease or other dementia are no different. They may fill this need through family, friends. Changes to the need for closeness and physical intimacy brought on by the disease will affect any relationship.

See the next response I wrote. Gena / Touch Matters

Disregard what people say and watch what they do.

People do what they want to do and they don't do what they don't want to do.

My response would be no response.

I don't think your mother even knows they are not visiting. It is very sad, It would be nice if they could just stop by for a short while every now and then.

They probably have known friends with AD and are scared to see their sister that they love so much with the disease. It can also be a reminder that they too could be next. It could be very difficult for mom not to be in familiar surroundings right now. It could also be very difficult for your mom to have to listen or converse with her loved ones. Maybe you could just say .....I understand, it would be nice if you could drop by just to say hello.

I am not big on taking people with dementia on trips or putting them in party situations. I've yet to see this work for a person with dementia. I would tell them that your mom would appreciate one on one or maybe two people at a time visiting her in her home. I would also not resist shrugging and saying "well, what comes around, goes around, don't expect visits when your life is ending."

Cannot read all submittals but have suggestions. Get another social group not first time in history rogue family from at birth. Get Faith group participation ignore tithing not those groups unless you want to. You can start one help others n yourself.

That's really sad and I feel for you.
Say to them:
These may be the last months you can spend time with her.
You may be in this situation someday.
Wouldn't you want your family to spend time with you if you had dementia?
No need to be so polite.

People have to either have experience with dementia care or have read up on it to be able to deal with it at all, but even with the education it is very difficult to accept the changes in our loved ones. It takes adjustment. You are with her day to day and developed ways to interact. I understand that it almost hurts you more than it hurts your mom to hear the reasons for not visiting. Others have suggested you say you understand. I would say to them that if they were around her more they'd develop a new relationship with her. It doesn't HAVE to be sad, just different. And offer to them insights into some of your coping skills IF you can find the energy. Or ignore them. A simple "okay" might say way more, depending on the attitude you say it with. Their decision does not have to impact you. And you certainly should not be trying to fix them with all you have to do. My mom decided for herself that she should no longer go to family gatherings, weddings, parties, out to dinner, etc, because it all confused her too much and she didn't want to "be a bother".

We enjoyed coloring with both my Parents & In laws

Gives u something to do

writing on a clip board

It opened up their vocabulary

I feel for you. When the words Dementia or Alzheimers comes up, people think it's over. They need to realize how detrimental it is for your mom to not have any visitors from her family. It really sickens me, because it probably will happen to us too. Where is the compassion???

Please understand it is difficult for family and friends to see a person with cognitive challenges deteriorate. Things my siblings said to me were...."I do not know what to say...", "...I am afraid of saying something wrong...", "...I do not know who he is anymore...", "...I am afraid of him...", "... it is hard for me to see him this way...", "...it is exhausting to talk to him..." and the statements goes on and on and on.
You are interacting with your mom on a regular basis, you notice the changes, you know the changes and I am sure you are reading and talking with her Dr's, care givers and other relatives of residents to know what is next, others might not.

Best of luck to you as you will need it.

@BailyP3
@MDJones

Guilt-tripping or attempting to guilt-trip has never helped anything or anyone.

@Deb4Mom

Some people are cowards. They're afraid to be around a sick person or someone with dementia so they come up with all kinds of excuses.
In my line of work I've dealt with many, many people who were afraid to be around a sick LO or one with dementia. They'd call to "check" on them but would not come in person. I'd often ask with total sincerity, the one question no one asks and that they're often afraid to ask themselves.

What are you afraid of?

Most of them couldn't answer this. I'd tell them the best I could that they don't have anything to be afraid of. Granted, visiting a person with dementia can be an awkward experience, but it's not nearly as bad as what people convince themselves it will be.

Hi
my friend took her Alzheimer’s mother on a cruise
her mother complained the whole time
Would not get involved with anything
actually she even had issues with eating any of the food
these holidays and occasions may be nice to include old parents to but they really just are not practical
my friends holiday was more than 100% ruined and a waste of money
its hard as you are caring fur your mother and want her included etc
you can feel her pain more being with her
your relatives/friends see the reality of the situation
your mother is no
longer in a position for these trips
I would have thought a conversation to say mother is still in tact a good amount if the time and aware when she is being left out and you would appreciate their support in a day trip
now and again or a one day get together to include her
and leave it at that.
if they choose not to include her any further in anything small and it upsets you then maybe tell them you think it is a bit selfish and you’d prefer not to hear about it all, but be prepared you may wish later you were included.
your mother requires looking after and events can’t always cater fir tvat point
as per my friend she had no holiday end of and actually came back more stressed when the whole purpose of the trip was to chill out.
Everyone has a point here but everyone can compromise and agree something small
your mother can’t cope with anything more than small anyway
maybe that’s the path to take
you all have valid points

Not everyone can handle the situation. Some people are nervous, feel awkward in talking with them and some just feel saddened to see them in this situation. Caregivers get used to the behavior that comes with dementia, so it’s not a huge deal for us. More importantly, people are afraid of seeing what could happen to them in the future. Although dementia isn’t a contagious disease, people are quite afraid that they may have to encounter this sickness in their own lives.

I don't like dealing with my moms dementia on most days so I definitely don't expect others who are not immediate family to want to. People avoid us because they don't want to do or say the wrong thing. They don't want to be a caregiver. They don't want to try to communicate to someone who is not in their right mind. I get it and I don't need them to say anything, because I don't have the energy to deal with their issues.

Having those weekends with the girls was your moms life before dementia. Im sure many things fall into this category now. I know it is sad, but just let it go. If her sisters need this to be a vacation and not a caregiving weekend....that is their prerogative. Focus on you and your mom.

Hi there,

Frankly it was the biggest challenge I had with end of life care for my Mom and Dad. Though heartbreaking to observe as my dad (who was left alone when Mom passed 18 months earlier) said things like 'they think I'm an old fool' and 'I'm sure they're busy with their own lives', nothing I said or did was going to change my older brothers.
Make no mistake though, when Dad passed I certainly made a point of reminding them their traveling to see him would have been within the same country and 1/2 my travel time but somehow, magically, I found a way to cross a border, self isolate then stay in town for a week to visit (287 days over a 2 year period but who's counting)
People who chose not to visit will have to live with their own consciences and I feel sorry for them. I was there when he took his last breath and wouldn't have missed it for the world.

Maybe remind them that one day the shoe will be on the other foot and their own families and friends may give the same responses about them. People are so selfish, it's amazing...

I remind them that they are the grown adults with all of their faculties so they can handle it. I also reminded them when my mother was in the later stages and didn't remember them that a) they still remember her!, and b) her mind may not recognize you but her heart does.

I also reminded them all that I had to muster the strength every day so they could suck it up for one short visit!

I have no sympathy for the adults who can't bring themselves to visit.