How do you deal with "concerned" but not "involved" family members?

I also agree with sharing as much as possible about her condition and care needs for any unfortunate thing happening to you. I take care of all the paperwork, financials, doctor and dentist appointments, etc, and have drawn up a document listing all the contacts and relevant information for my brothers, in the event that something happens to me - one is not local and has no DPOA, so it would not be feasible for him to take over, the other is kind of scatterbrained and I could only see him forgetting to handle things! However, as others have said to me, what would I care if I am no longer here? Sure, it would not matter to me anymore, but if it were more along the lines of being laid up/indisposed for a given time, everything I have worked so hard to manage would fall apart and then I would have even more stress after to clean up the mess!

But, a contingency plan should be at least attempted.

onlychild82:

Based on your latest post it seems like you have made some progress! Setting limitations is one way to handle the "popping in." Personally, if I were busy dealing with mom when they showed up, such as feeding or bathing, I would not answer the door. Next time they come at a better time, you can explain that you could not answer the door because you were "taking care of her." Explain or write up mom's schedule and request they call ahead before visiting or set specific times when it would be better for a visit (many with dementia also have good/bad times.)

The questions/comments/suggestions can be handled with that letter SueC1957 suggested, with a write-up on dementia attached. You do not indicate ages for mom or her sisters, but regardless of age many people have not dealt with dementia and really don't understand it or have a clue! Our mother's siblings are all gone now. A Canadian cousin used to visit with mom (and dad when he was alive) both in her last home and in FL, but the last visit (included her daughter and friend) was after mom developed dementia. They were staying at the condo. We were (at least I was, despite sharing what I learned about it, two brothers were and mostly still are clueless) very aware of her condition and were taking steps to manage her living alone (car was already taken away, financials taken over, locked pill dispenser was in use, one hour pill/status checks with aides, cameras installed, neighbors enlisted for help.) However, staying with her for about a week and seeing her behavior the cousin felt the need to tell me that "we don't feel she should be living alone." Mom was only in the early stages, was NOT a wander risk (conversely she was self-isolating), had trouble with short-term memory, repeated herself often, could not manage finances, etc. I explained this to her and although she seemed satisfied, I am sure she still felt mom should not be there. We did have to make the decision to move her to MC after she refused to let the aides in after a few months (and refused to move ANYWHERE, even to move in with one of us!)

Clearly people chiming in are "trying" to help, but that kind of help is NOT what we need! One can thank them for their concern, explain things such as the condition (once, MAYBE twice), and say the medical condition and care is covered, but it *would* be nice to have someone visit/watch over mom for an hour or so to give me respite, allow time to take care of necessities, etc. As for them buying groceries, I would just thank them and move on. It WAS a positive thing - it saves you a little time/money even if the foods are not appropriate for or liked by mom. The roast chicken sounds great - for YOU! They don't need to know you and/or your family ate it. The fact that they bought/paid for something is encouraging...

Someone suggested going out or asking for hands-on help when they just drop in. Obviously one does not need unannounced drop-ins, but if you do this when they show up without warning, it might discourage them! Or it might just work out (as you noted.) Sometimes leaving visitors to deal with the patient alone is enough to discourage them from dropping in!

As another quoted, ”you get more bee’s with honey than with vinegar” - if they are truly concerned and want to help, let them know what help you need and see how it goes from there.

I so love EstherM’a suggestion about “popping out for an hour or so”. Start out slow, even an half hour, (take a walk?) then aim for consistency and extended time. Consider it a training period for them and you. Gives you a way to practice delegating. Please use their expressed concern to your advantage.

I just want to say onlychild82 your question was so needed and GARDEN ARTIST your answer was AWESOME! I received it for myself because my mom is progressing and her siblings were getting on my nerves with questions and no help when asked. Lately, one of mom's sister comes to stay with her so I can go to work when the caregiver is off on consecutive days. However, lately this sister comes disrespecting me talking about my dad saying he is the reason my mom is the way she is. My parents have been divorced for over 20 yrs because my dad cheated. Twenty years they are bitter, along with mom.Two days ago I had to put on my big girl panties and tell my aunt she is not to come in my home bad-talking my father to me. She is there to assist with her sister and if she can not do that with positive vibes then she will not be welcomed back. I have enough negative energy spewing from my mother's disease. You know what, she apologized and the air has been clear.You control your space and time. Let noone make you feel less than. We are all doing the best we can with the knowledge we have while dealing with the mental loss of our LO. We don't need any more negative energy in our space.

Thank you ALL for your comments!

Everyone deals with things in a different way....

I live in a land called Passiveagressiva and I am their Queen

They brought the chicken because they think I am feeding my Mother nothing but soft foods, which is what she has only been able to eat! The real kicker is that she did not like that chicken! When my aunt (visiting from Mexico) she said to ask god for patience, and I said, "God is the only one that helps me, because no one else does!" She just stared. The next day when they came back to she could say good bye I left to the grocery store and it was great! I came back and they left. Moving forward, I will be going for a walk, or going to the store.
I appreciate everyone's input. It makes me happy that I am not alone in this situation.

Sue...GREAT letter suggestion, thanks for that.

Only...please don’t listen to people who tell you not to listen to others on here. This forum is for sharing thoughts, ideas, experiences, etc. The more the better. I assume we are all adults here and as such know each is an individual. In a perfect world it’d be great if life (and relationships) were all hearts & flowers but we all know better. You find whatever way works for your individual situation & use it; guilt-free. As long as it’s legal & not harming someone — if it works, it works. Again, good luck & very best wishes!

Bakingbliss, to which message were you responding in your comment about snarkiness? It's difficult to interpret meaning without knowing the context. thanks....

My family must be from Mars. I tried Garden Artist approach, which is excellent advise if you are dealing with civil and intelligent people. I maintained a closed mouth as to not offend my older family members, to show them the utmost respect, and to maintain calm and love among the family. I eventually had to tell them to " sit on it & spin". It's not the best thing to do, but it worked for me. I sleep better at night and now they know I'm not playing with them.....if they want to help, then step to the plate otherwise SHUT UP ☺️. Consider this your smile for the day. God Bless you!!!

Jellybean, I don't recall your having posted anything offensive. No apologies necessary.

I'm sorry to learn that you've had bad news regarding your father's longevity. If this is his last Father's Day, I hope everyone in your family is able to help make it very special, and as special and painless for everyone as possible.

My thoughts will be with you. Please let us know how today works out for your family.

Only child-
Just a question -to clarify
When they brought the chicken did they say it was because they thought she didn't have enough to eat at your home? Did they say they think she wasn't eating enough?

There are thousands of ways to give people sh%# for not helping
Is that really what you want? Five seconds of gratification -Or -if you could - for your mom
Get them onside
They are not horrible people-or you wouldn't even want their help/understanding
Being snarky is easy and may feel good for a second - but you havent helped your situation

thanks, Sue!

tbrown2 -- that's my world, too. Thanks for sharing.

Teri,
"Since you choose not to help, I'm sorry you don't have a say."

Or just a disinterested "Ugh huh", while looking away, then change the topic.

oh, gardenartist, these are GREAT suggestions. Several other good ones from other people, too! I hope that I can remember the wording that you have all suggested. My problem is a sister who won't help but wants to give input. She will NOT do anything and gets defensive if it is even suggested, so I can't use some of the very nicely worded options that have been offered. Suggestions about how to nicely say "keep your opinions to yourself if you're not going to help"? :)

Garden A - you may be assuming too much - just because others don't agree with you doesn't mean they haven't had similar circumstances
Maybe they just choose to deal with them differently

Onlychild82. I am so sorry! I posted my response to someone who had responded to you. My apologies to you and gardenartist. I just received a timeline on my dad’s life and my mind is a bit scattered. This will be our last father’s day 😢

Silky, I found the "sign up" comment offensive as well. From reading some of the other comments, I get the impression that some folks just have never been in this situation and underrate how frustrating and offensive it can be when a sibling refuses to assist the caregiving sibling.

From one only to another,

Sit down and write a list of everything about your aunts that bothers you. (coming without calling, coming empty-handed, asking tons of questions, etc.).
Things that we can't get out of our mouths face to face, we can write and be able to articulate what we need to say.

Organize it into a letter and send it to each of them. For example;
Dear Aunt _______,
We are so lucky to have you in our lives. Mother really enjoys your visits. Unfortunately, when you come during bath time, we feel bad that we have to rush and keep you waiting. It would help a lot if you'd call first before coming over to make sure we're not doing our morning routine. Then we'd have more time to spend with you. Here's my cell number XXX-XXXX in case I don't answer the house phone. The best time to visit is after 11am.

I know everyone is worried and concerned about her health. How about this; You can assume that mom is fine unless I tell you otherwise. I'll keep everyone updated as she has any new tests or procedures. It's hard answering everyone's questions each time someone asks. It's better for me to let you all know if there's news than me trying to remember to say it to 6 different aunts.

I love my mother dearly and I'm doing my best to care for your sister. But it's tough being a caregiver 24/7. I have a hard time getting out, as you can imagine. You can really help me out and make life easier for your sister. I'd love to step out for a few minutes when you come to visit. There are things I need to do without dragging mom everywhere, it makes her so tired out. I'll really appreciate the time you spend with mom and the break you'll give me.

If anytime you'd want to visit at lunchtime, it would be great for mom and me not to have to eat my cooking for a change. We'd welcome whatever you would like to bring. It's always nice sharing a meal together.

Thanks for understanding how challenging our situation is. We so value our relationship with you.

With Love,
Your niece, onlychild
-----------------------------
Just a suggestion. Good luck.

try to take a proactive approach - if and hopefully - they have email or other easy way to keep updated - inform them of her condition - your efforts (be your own advocate) and send pics-on a weekly or whatever basis- ask for specific things that they can help with -- 

"Bring such and such next time you visit etc." 

"Please let me know when you are visiting so I can put it on Moms calendar "
If they feel acknowledged, they may start learning how to be helpful to you- give some hints - they may not know what to do.....  

After all -  they are people who your mom loved and were very important to her. They may not seem that way to you - but I am sure your Mom knew them well enough to appreciate what you are going through
Please don't listen to people on here saying they are harassing you - they care in their own way - be the adult in the room for your mom
Hpefully they will appreciate being in the loop - unfortunately this may seem like it's adding to your load - but if they are caring they may begin to appreciate what you do and your efforts more!! If not, then it's on them. Good luck 

GardenArtist, Katie & anyone else who made similar posts .... thank you for everything you wrote. I absolutely cringe whenever I read comments that say anything remotely like: you signed up for it so....,

Y’all are more articulate than I could’ve been but I want you to know how much I appreciate your replies to those sorts of comments.

You need help - so ask that they bring a casserole/dinner for your mom & you to have for dinner as that would free up some more of your time to help your mom - ask that they get orginized with each other so that come on different days as too many people at once is not optimum for your mom ... that will spread out the dinners

Then start scheduling them with a max of 2 at a time so one does dinner casserole & the other a pie - give them a set time of 'come between 1:30 and 2 but know you will need to leave by 3:30 so mom has her lie down before dinner' & if they show at 3:00 let them in with ' glad to see you even though it will only be 30 minutes' - THEN STICK TO IT - people with dementia need a schedule not chaos - you can't train your mom with dementia but you can train your aunts to be more thoughtful

It is very difficult and stressful to have the full “weight” of an adult entirely on your shoulders. I would suggest you do what YOU need to do to take care of yourself. If that involves hiring a neighbor or someone to give you a break, just do it. Things will catch up with you eventually.

Forgotten2, good for you! I think I'll say something like that the next time my sibling tries to boss me around. I also am waiting for the opportunity to say that I needed help when my father was alive, and when I was told that the "logistics" weren't right. But suddenly, a few days after death, the logistics magically worked out. Of course, the inheritance was available then.

That seems to make a big difference as to when siblings decide they're "ready" to become involved.

I have two siblings, and I am the child that lives with my 91 year old mother. My brother is always good with saying "thank you." My sister once started to lecture me (I am the baby) about what I should do. My reply was: "While you were going to casinos and taking a cruise, and just enjoying your own life, I was here. I was always here, night and day. You have no right to tell me how to do anything." She actually shut up and has not tried to lecture me again about my caretaking.

Gardenartist, I’ve experienced the same thing but with siblings. I reached the point of telling my brother to get involved or butt out. My sister always has something else to do and only visits when it’s convenent for her. When they ask ridiculous questions I encourage them to talk to hospice and find a better way and do it themselves. I have asked family and friends to let me know when they’re going to visit so I can have a scheduled break. No one listens. Frankly I don’t think anyone cares about the toll this duty has had on me. It’s sad and I certainly know how you feel. Find your voice and use it. It seems the only time people listen is when I’m crying and screaming for help, literally. Just don’t do it in front of your loved one. Hope you have success in getting help. 💕

My SIL did this to me when I was caretaking her mother. My husband (her son) and I lived with the mother and had been "taking care of" her and her older sisters who also lived in the house since the 1980s. . .MIL fortunately was brilliant until the last 5 months of her life. She was totally in charge. However, her daughter, who never showed an interest in her mother's welfare all of a sudden inserted herself into our lives when MIL reached 95 . . ."I keep feeling that you two are keeping me away from Ma . . . I want to see her." So we (with my MIL's permission) asked her to come and help me out every once in a while since my MIL was starting to deteriorate , and was angry as all belief because her daughter suddenly surfaced. Her eyesight was going as well as her hearing (which was selective, believe me, I knew and she knew I knew, and she used it to her advantage.) My SIL squeezed us in between her Yoga and Accupuncture appointments, and other 'commitments', and sometimes just showed up because she had nothing else to do and wanted to sit and chat . . . but it was me who changed the diapers and fed the MIL, made arrangement for in-home nurse visits (often under scrutiny of my SIL), etc., etc . . . life was HELL. Do not let someone get control of your life like this. Right now my SIL is suing my husband and I for mistreating my MIL, cohersing MIL to change her bank accounts to only her sons and other items not worth mentioning. Protect yourself at all causes. My MIL died an honorable death at the age of 96. My SIL turned her wake into a feeding fest for her 11 children, plus husbands and xxx children. I heard someone say they had never had such a great time at a funeral before, and loved the food! No one quite made it to the visitation room. Those that cared sat alone. I will never forgive.

Dear OnlyChild,
I understand how you feel. It is EXTREMELY frustrating! I only have one sister who lives in the same town as my mother (in Kentucky), and has NO contact with our mom whatsoever (neither does her 21 y/o daughter, my mom's granddaughter). But when there's a problem my sister asks ME about it, and I live 900 miles away in another state! I have made a recent decision that since my sister has no contact with our mom, and little-to-no contact with me, that next time she texts me and asks me what's going on I'm going to ignore her and not even respond.
I suggest you, as politely but firmly as possible, tell your aunts that unless they are going to chip in and help with your mom's care, they should NOT give their opinions or tell you what you should and shouldn't do. If they want to PARTICIPATE in her care-giving, then they are certainly welcome to discuss your mom's care plan with you, but until then.....
It will be hard to stand firm with them, but you will feel a million times better afterward.
Good Luck!

Only, this will continue so you need to set some boundaries now. You are not their little niece, you are now an adult taking care of your parent. So respect must go both ways. If they are rude, demeaning, dictatorial, etc., you don't ignore it because it will continue. They need to understand that you expect to be spoken to with the same respect they expect. You can certainly respond to their suggestions with "thanks for the concern, but we've got this" and change the subject.

I don't feel caregivers should have to take the time and effort to make sure everyone is updated. I think non-caregivers have the time to make a call and check in. My experience has been that family liked having the knowledge, but there was never any help given, and they were quick to criticize decisions made by the people who actually had to live with the result of the decision.

To the one that asks about different diseases, Say that she may take her to her next dr appointment & ask doc all these questions....& then ask HER what did doc say?