My Mom has 6 sisters, all younger than her. Every time they come and visit its a million questions and suggestions....why is she like this, what if she has abcd disease? "Take care of her I know this is hard, but she will not be here one day." You don't know its hard because you're not here everyday!
One aunt who was willing to watch her so I could get away, backed out on me that same week.
They always pop up instead of calling so I could at least take a walk.
They are useless and make me feel like I am little kid getting lectured.
I know the answer is to probably just ignore them and try not to engage in conversation, and I will try!
For the sister who asks about a specific disease, tell her you're glad she raised the issue and will look forward to her assistance in identifying any issues that need to be addressed to determine if that disease might be a factor.
Ask, or suggest, or even TELL her to do research on good, reliable websites like Mayo or Cleveland Clinic, identifying symptoms, treatment and prognoses. And bring the information to you so you can discuss it with your mother's doctor(s).
To the sister who advises you to take care of your mother, say you're glad she raised the issue b/c you need help. Add that you're looking forward to a schedule she can provide to let you know when she'll be helping out.
Don't let them "pop up"; tell them you have a schedule to maintain, since you're handling all the caregiving ALONE, and that you need to know when people are coming to avoid disruption in your household.
Add that you'd like them to perform some of the caregiving chores you've been handling, so that they (a) learn how to care for Mom in the event something happens to you (keep a straight face when you say that), and also to provide relief for you so that you don't burn out and one of them has to take your place, full time.
If they find an excuse for whatever you suggest, ask what each CAN and WILL do.
They're getting away with intimidating and harassing you b/c they can. So stop them. I know it's easier said than done, but you're going to have to stand up to them and put an end to the harassment sooner rather than later.
Imagine what it'll be like when your mother is gone and they start meddling in every little aspect of estate management.
You're stronger than you realize; recognize that and use it to your advantage.
Talk about scared, my Mom had one of her sisters passed in her 50's from breast cancer, so for the next 40 years my Mom had yearly mammograms. Nothing like taking a 97 year old who is frail, to have her mammogram. Mom insisted.
There is still that adult/child dynamic. You are still the kid, and what do you know :P Try to let their lectures go in one ear and out the other, only you know what is best for your Mom.
I need to get the strength to say these things to them! For some reason I just can't bring myself to be honest and say what I feel/need. I would rather not talk to them at all!
Ya know, when I know I'm not doing my fair share, I usually over compensate with questions, suggestions, half baked concern and criticism.
Just to look like I'm really into it.
Have you flat out asked for more help from them, hands on? Or even money for respice? I know it's hard when you know their heart isn't really in it.
Sometimes others don't realize even an hour or two can mean a world of difference. If they don't, then tell them.
Big hugs. Sorry I couldn't be more help.
I do try to see their side. They are scared and wish they could do more for their sister. They could, but I think they hide behind their husbands, and grandchildren. I think they talk and talk and talk to hide their shortcomings and sadness.
Thanks for both of your replies Garden and freqflyer.
Perhaps you can start on an easier level - instead of asking them specifics and for help, ask how they would handle the situation, compliment them on their insight and ask if they'd be willing to help you. Start with the easiest sister first.
Or take the easy way and e-mail them.
I am putting this in writing for future reference.
I will tell them I do not want suggestions, I want help! I need help! If they are not willing to help, they have no right to suggest and criticize me!
It's very very emotional/physically draining to do what we're doing. Stand up to those bullies. Lay it out to them. Tell them, THEIR SISTER NEEDS THEIR HELP. Instead of "drop in visits" , they can come separately and spend a few hours with her so YOU CAN REST! Put'em on the spot. Ask them for a commitment. WHAT DAY/HOURS work for each of them. Right it down and hold them to it! Even if they don't always come thru at least YOUR IN CONTROL, NOT THEM. Trust me, it'll only get worse if you don't take control.
My brother and his wife have done this, we're moving my parents to assisted living in a few days. I spend 10 days a month away from my home/family 7 hours away caring for them for the last many months. Mom has dementia, and home health aids are not enough help for 86 yo Dad.... but they visit for 3-4 hours on Sunday and act like they saved the world.
They really exerted pressure that my parents go to a place super close to them (it's nice) and not me. It's 1 hour closer to me, but I give it 30 days max before the complaints begin, and that will be with them in AL!! Reality is about to sink in.
There is nothing we can do but allow reality to show itself to those outside looking in.
Best wishes to all on this journey.
I feel your pain, truly. And, I don’t have anything new to add but just want to encourage you to take Gardens & Frequents advice. They are both brilliant w/the suggestions they post & have helped me more than I can say. Confrontation is absolutely NOT easy for me. But, after reading their posts for a few months I found the courage to stand up for myself when it came to my narcissist sister. We no longer speak but her toxicity is out of my life which, is a shame to admit, was the best thing for me. And, as I’m the one caring for our mother w/out ANY help from her, I have to be concerned w/what’s best for me b/cause it enables me to provide my mom w/the best care I can manage. So yes, it’s hard to confront some folks but what’re they gonna do, shoot you? Na. Maybe they’ll be offended or think you’re mean but, so what! You’re the one that matters here; not them. You matter b/cause you’re the care provider; not them.
Good luck & keep coming back for support. These folks know what they’re talking about!
Quick Background I am 1 of 3 sons. 8 years ago, Mom suffered a major stroke (hemiparesis, aphasia, apraxia, Bed/wheel chair bound , Dad had Parkinson’s and Alzheimer’s (passed 2015) , I took on the role as primary caregiver with promises from 2 brothers, Moms sister , Dads brother and my parents very close neighborhood friends to help.
Note: Help means different things to different people.
What you described above is the same thing that happened to us where everyone promised to help but it never materialized. In the beginning, (approx. 1-2 years) I slowly built up a resentment because I was the only one caring for them and it Appeared to me that everyone else was just “Harassing me” as a few people answered your post. I spent countless hours trying to GET THEM to see what they were doing, or not doing as the case may be. I won’t go into the daily occurrences as yours seemed similar and everyone reading this has their own unique experiences. Suffice it to say that We, The primaries, are always doing so much more than the “well meaning” bystanders.
The point is : WE made the commitment TO OUR PARENT (or loved one) and THEY made the commitment to US, the caregiver. The care for the Parent is Obvious but the care for the caregiver is hidden. Therefore, the Bystanders don’t FEEL THE PAIN.
Fast forward … They were doing the best they could under “their” circumstance = some were married with kids, some were going thru their own crap (nasty divorce), some lived 100’s of miles away, 1 was a sociopath (who will remain nameless) but even he “had” good intentions. I am not making excuses for them. They could have +++ and should have+++, but they didn’t and that’s just the way it is.
I will read a quote from my dad that he tried to ingrain in me when I was younger,” you get more bee’s with honey than with vinegar”
Even though they really didn’t help me that much, just their presence made my parents happy. It didn’t solve any problems, It JUST MADE MY PARENTS HAPPY”! As I wrote above, for the 1st year or 2, I tried to GET THEM to do more. And I tried many of the suggestion above. Guess what, It just drove them to defend their actions more. It created animosity which did more harm to my parents. It didn’t solve anything, albeit made things worse.
Here’s what I learned and did: Maybe it will help you.
1st: I made everyone and anyone who stopped by feel welcomed and appreciated, (never guilty)
2nd: I answered almost every question they had when they inquired about mom or dad.
3rd: If they had a suggestion, I asked them to write it down. This made them feel as though their questions were valued and would be addressed (ironically, a few actually were important)
4th: I created a “Space online *” where I added as much information as I felt comfortable sharing, like Blood work reports, pictures, maybe a little story on something we did. [Replying to your post “What if she has A/B/C disease”] , I even attached articles that I researched even if they weren’t relevant. That stopped my brother dead in his tracks of the A/B/C question.
5th: and possibly the most beneficial: I shared as many pictures and stories as I could that showed the “byStanders” what they were missing. Like a night out at a Pavillion concert of a Neil Diamond (cover) . I said above to not make the bystanders feel guilty, But when they saw their Ill parent, Sibling, or Friend having a good time “without them” , they felt guilty all by themselves without me pushing it on them. subconsciously, they might think, Sis won’t be around forever…………
This OnLine Space allowed friends and family to garner whatever they wanted on Their time schedule freeing me up from taking calls and answering their questions : Ya know. The INTEROGATION.
It also pre-emptively made them “feel” in the loop and important.
What happened was:
It minimized the Interrogation, It FOCUSED their attention (when they did stop by) onto my parents instead of “the discussion”. It simply made the situation better, Not just for me but more importantly for my parents.
Sometimes ya gotta lose the battle in order to WIN THE WAR .
*Initially I emailed everyone with these things but it only served to allow them to email me back with countless questions and suggestions so that backfire. Now they have a place to go whenever they want
* Facebook is a great place to share PUBLIC info like pictures and stories
* I do NOT share Bloodwork or Private info there, I use Dropbox and give access to only those I want to have that info
Here’s hoping this Food For Thought makes yours and your moms life just a little more enjoyable
"Thanks for pointing that out, but I do believe I've already reviewed that and decided it was not adequate or appropriate or correct."
(Person responds that what they are asking you to do and what you did are NOT the same thing, blah, blah, blah and they need you to do something different)
My response to that?? "OK. I hear what you're saying. Please write down EVERYTHING you believe needs to be addressed and provide all phone numbers and names that I will need. After I read what you give me, if I determine I've missed something on caring for Mom, I will have your documentation to use as a checklist while I get started."
I never heard another word about that issue.
I have had help available to me but had no idea it was available. I have trouble even itemizing the things I need help with. I find asking difficult, but just talking the situation over lets others see between the lines and then they can help. Letting others participate in her care when they visit helps them get the picture.
This whole situation is so difficult for everyone, involved or uninvolved.
Jesus, open our eyes and let us see.
I send an email to the siblings occasionally whenever anything changes in Mom's situation just to keep them informed. Sometimes that produces
Warm regards to all.
What it comes down to is "they'll take what they get" in the context of opting out of care.Therefore, as you have been advised, be firm in what you are willing to do and not willing to do. It sounds like you are taking sensible initiatives in going out and letting them care for an hour or so, both so you get a break and they find out how difficult it is to care well. As dementia advances, it is impossible to care for someone living with dementia entirely on your own. You need help, either from professional carers or family members or preferably both. I think you are getting there in terms of setting up a viable situation with which you, your mother and your sisters can cope. Don't let your "universe", your life be restricted to caring for your mother. That won't work and would exhaust you. The appropriate phrase is "power to your elbow"--be encouraged.
The point is : WE made the commitment TO OUR PARENT (or loved one) and THEY made the commitment to US, the caregiver. ]
Excellent insight on your part and good advice in your post, too, about not making others feel GUILTY when they do stop by.
IF an adult child chooses to take on the care of an elderly parent, rather than putting them in a facility, then they should do it with love, not resentment.
My plan (without telling my mom) has always been to split whatever is left at the end with my brother's family. But at the rate my Mom is going, she will probably need it all for whatever living facility is in her future, because at some point, I will not be able to listen to her nastiness any longer.
I'd only like to offer that some of us did try that (I did), but there can be factors in a sibling or family dynamic that just can't provoke siblings to participate.
I also would like to add that I would NEVER share health or family information on a site like Facebook. Never, absolutely NEVER.
I did send out e-mails when events occurred; people began to rely on them and never bothered to call inbetween major events b/c they expected me to provide information. I was the only one in a position to do so, so that's understandable, but I shortened the messages and allowed them to call if they were interested in more detail. Sometimes they did, sometimes they didn't.
As to actual participation though, I tried to think of things that distant parties could do, but despite volunteering to do something, they never followed through. It became apparent that I couldn't rely on them.
Your point on good relations with parents, keeping them happy, etc. are well taken. There definitely is value in that. I tried that as well; the individual refused to come back to visit, even refused to visit during the last stages of life. A few days after death, assets and what this individual would get became the topic of interest.
Some people are responsible, others aren't.
But your "breath of fresh air" post is insightful and shows a different perspective. As I'm now in the estate management stage, I see another dimension of "help". Some offer and want to, but help would be "their way", not what I want or NEED, or in the priority order I've established (not arbitrarily, but consistent with trust and asset disposition needs). And sometimes want they want to do arises from what they want from the estate.
If I asked them to scrub toilets instead of inventorying the most valuable assets, I know what the response would be: Nothing.
"IF an adult child chooses to take on the care of an elderly parent, rather than putting them in a facility, then they should do it with love, not resentment." (my emphasis added on putting)
"The point is : WE made the commitment TO OUR PARENT (or loved one) and THEY made the commitment to US, the caregiver. ]"
Seriously? Have you read the posts from children who were abused, who are dealing with parents who can't even recognize their adult children b/c of dementia, or who were never good parents and aren't even capable of being grateful for care when they need it the most? Spend some time, find TinyBlu's initial post and read how her father treated his family. Yet she's still caring for him, caught up in a trap of obligation and unable to free herself from it.
I think you're "assuming facts not in evidence." I doubt if many parents or caregivers enter into any kind of "implied contract", understanding, or agreement.
Life happens, it gets worse, children step to care for their parents for a variety of reasons, sometimes obligation (read about the FOG syndrome).
I was curious about what I thought was a rather sterile, and clearly "hands-off", inexperienced response in your answers, so I checked some of your other posts, especially those on this thread:
I also checked your profile, which indicates you're caring for a friend in AL, and that "I am a family counselor and a child abuse & neglect attorney, as well as a writer."
Have you EVER cared for a family member? Are your parents alive, and needing care? Are your professional experiences primarily with children?
Have you ever cared for a dying person, stayed with him/her during the decline, painfully witnessed the physical deterioration, the body wasting, inability to eat, then to speak, or to move, the vacant stare, or been with someone at the very end when he/she actually passed? These are equally traumatic events and can and do create the need to reach out for help.
Can you imagine the trauma of this event? And if siblings haven't participated but then appear with hands out, that adds to the frustration of an already overwhelmed caregiver.
And dying is a major part of caregiving.
I don't intend to criticize or initiate a debate with you. I would just like to point out that the experience of "caring" for a friend in AL is vastly different from caring for someone with dementia, with multiple co-morbidities, someone who's incontinent, or suffering from MS, ALS or other neurodegenerative diseases.
Apparently you're still working as an attorney. If you did end up caring for a parent, I assume you would take a leave of absence in order to stay home and provide care?
This is one of the major issues that caregivers face, whether they've consciously made a decision to alter their lives or whether life "just happened."
Of course there is a pattern to those who seek advice here. Some of them are experiencing traumatic situations and are overwhelmed. They're in home, hands-on caregivers, often close to breakdowns, literally "at the end of their ropes." If they weren't in that situation, they wouldn't be desperately reaching out for help.
I see your professional perspective, but life and caregiving isn't that clear cut.
Again, it's not my intent to criticize you or your opinions, but only to suggest that you open your eyes and thoughts to people in dire situations, frustrated by no help from sibling or families, experiencing challenging financial, emotional, professional situations and literally "at the end of their rope."
There are always different "sides" to a situation. Exploring those other aspects can help open a person to seeing others' positions more clearly and with less judgment.
It bothers me .. the attitude of well... you signed on for it.. so don't complain.. do it all out of love. Its like a frog being slowly boiled.. you start in doing a few errands and each year more and more and more and more is required of you with increasingly less and less and less help or support. I love my parents ... but never in a million years would I have thought my life in the last 5 years would go the way it has.
I have been in some very hard and lonely, scary situations.. all alone and got inquiries from uninvolved family members wanting to know the details of their medical care. Not wanting to visit or come sit with me in the hospital or bring me or my parents comfort ... but wanting me to send them details.... so they can be involved... from a safe distance. .. sorry.. not gonna happen.. no more details given out for the uninvolved..
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.