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?
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.
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.
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)
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
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.
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.
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.
"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.
Can happen to them anytime, so they will feel the burn themselves.
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".
You and siblings are doing a great job with your Mom!
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.
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.
☺️🌳❤️
(((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.
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.
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.
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.
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.
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".
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.
Do you want to guilt them?
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.
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.
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.
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.
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
@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.
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.