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

Heather 10, you might take some time to read the posts on this thread, started by CarlaB. It addresses some of the underlying issues of caregiver frustration and isolation, and why it's not as simple as some might think, especially in terms of commitments.

https://www.agingcare.com/discussions/Reading-suggestions-nonfiction-438454.htm

Thanks GardenArtist. I support what you've written and I'll add just a little to what you wrote. Caregiving is a situation that also evolves over time. What it starts out to be and how it ends up isn't ever the same. Good, sound caregiving can be a moving target and "goals" can be elusive. My loved one got more and more demanding over time and less and less compliant. Her safety needs changed, her cognitive functioning changed, she had multiple falls. Some of her decline was her own apathy and that was hard to watch. She'd been catered to all her life in one way or another & her recovery was the only time in life that no one could bail her out - SHE had to do the work herself & she didn't or couldn't do so. There's only so much a caregiver can do to pick up the slack. And when we throw in the criticism and game-playing of the non-caregivers.... well, it gets hard to do. What I may have "chosen" to do for Mom at the beginning was a far cry from what I ended up attempting to do for her because the need only INCREASED as time passed. If I had a crystal ball to know how it would end up as compared to how it was supposed to go.... Wow. That might have been good information.

I cant imagine anybody agreeing to provide sole care (with absolutely no help) to an elder (possibly with dementia) for literally years on end.. putting aside their own life and focusing on another. I know I didn't as I gradually became sole caregiver to both parents with dementia... as all family backed away...even from supporting me emotionally.. even from visits ... even from the most minor efforts to provide any help.

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..

The one thing I honed in on was the dropping in unannounced. This would aggrevate me to no end. When Mom was here I had a sort of schedule. Mornings were the worst part of the day for me. Mom usually slept to 8 or 9. I never woke her because she would be confused. Once she was up, it was breakfast and then a sponge bath or shower and getting dressed. So by the time that was done, it was cleanup time and my shower and getting dressed. No way would I have appreciated someone "dropping in". Being your home, I see no problem in asking them to call before coming over. And when they come, disappear. They are there for Mom. Over refreshments and then say " while you are here, I'll go get something done I haven't been able to get to. Or, its a nice day, think I'll go outside for a while. When they start asking questions, nicely tell them, nothing has changed. ALZ is the diagnoses.

Heather10,

You wrote:

"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:

https://www.agingcare.com/questions/why-wont-my-sister-help-more-with-our-dying-mother-439734.htm?orderBy=recent&page=6.

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.

Esther, I like that one.

Uneekguy1, thanks for sharing your "unique" perspective (yes, a play on words, but sincere). You clearly gave a lot of thought to the issue, made mid-course corrections, and have good advice to share. You have a business background, I'm guessing? Are/were you in a management position? Ex-military? Your advice infers that you are, especially your assessments of others' capability and methods of motivation. That to me suggests military experience.

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.

My only sibling passed away a few years ago. That leaves me as the one for my mom (92) with narcissistic behavior. I was/am the golden child. I have always been her confidante... I have listened to her talk about each one of the family, including my children. Of course, along the way, I learned to walk away/not listen. But I bring this up because perhaps the family members who do not want to help did not have a good relationship with that parent/LO. In my situation, when mom lived in her home and if she goes back, she would be fine with SIL coming to visit and take her shopping, etc., but she made sure that I am the only one listed in her will as benefiting from anything she may have left behind when she dies. I told her out flat that I think it is pretty awful that this SIL who was married to my brother for 30 years and who would still help her out, that she wouldn't leave her anything, and still continues to talk about her. When my brother was so ill for so very long and they needed help ( a car), I... underline I, was the one to suggest to her helping them out with a new car so that on the many trips back and forth through rural country to the hospital 2 hours away and frequent hospital stays, they would not have to worry about their old car breaking down in the middle of nowhere. Mom was fine with it at the time, but ever since regrets that she spent that money.
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.

[ Uneekguy1 wrote: The point is : WE made the commitment TO OUR PARENT (or loved one) and THEY made the commitment to US, the caregiver.

The point is : WE made the commitment TO OUR PARENT (or loved one) and THEY made the commitment to US, the caregiver. ]



Uneekguy1:


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.

I am sorry for your having to deal with ALL of this, but you have been given great advice! The first thing to go through my mind was PUT UP OR SHUT UP, and there are so many more. I hate it when people just drop in and disrupt the "routine", at least give me a "heads up, and this applies also to the well meaning pastor. I really, really dislike alzheimers and ANY illness!

You have some very good advice here; and it sounds like the situation is improving.
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.

Open conversation with no accusation is a wonderful thing. Many people have no idea what to do to help and would be glad to help if they knew what to do.
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
dramatic responses.
Warm regards to all.

One thing that worked at times was this: When an uninvolved person made a "suggestion", it was 9 out of 10 times something I'd already looked into. Maybe even 99 times out of 100 it was already something I'd already previously looked into. There's one particular time when I responded this way:

"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 am so sorry you are going thru this. I took care of my mother for almost 9 years, and now my father for 2 years. I am one of 6 siblings all living within close proximity. I have gotten absolutely NO help from any of them. They don't come over or even call to check on him. It's incredibly sad. It was the same with my mom. When something happens, like he had a stroke in May, I contacted all of them to let them know. "oh thanks for telling me, keep me posted" That's what I get from them. It still bothers me of course, but I've learned to roll with it. For YOUR sake, you have to just realize that some people are not meant to be caregivers. God chooses us wisely. Thank you for you do. Your mother definitely appreciates it, and that's all that matters. I'm not sure your mothers condition, but please remember to check into a hospice program near you. I was not educated when I took care of my mom so I was not aware. But, I just recently enrolled my dad. The amount of support you will get is overwhelming. Total strangers that actually care. I wasn't sure about my decision at first, but within 24 hours, I was so grateful. A huge weight lifted off of my shoulder. Good luck to you and God Bless!

I feel your pain ! BUT.. I suggest looking at it from a different perspective.
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.
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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

I completely relate to your situation. My mother lives with me on hospice. I have an older brother and sister who have not offered to take her into their homes. Yet, they question my boundaries about visitors not popping in they talk about me behind my back, suggesting that I’m keeping visitors away from Mom. My mom asks me all the time to tell people to leave. She is withdrawing but doesn’t want to be rude. I feel caught in the middle a lot. My family also assumes things about her care—for example, that hospice is there all day, so why should this be so hard for me? Also, that we can just put her in a “nice nursing home”...well my mom would have to pay $6,000/mo to stay there. No one asks me about all the research I’ve done to exhaust her elder care benefits. They don’t offer to help keep up my home or bring meals over. To me they aren’t behaving like a supportive family. So I don’t owe them any explanations. To friends of mine or my mom’s friends—who ask thoughtful, kind questions, and who offer to help...I tell them all kinds of things and talking to them is actually therapeutic for me. You don’t have to “help” non-supportive people through this situation. They need to learn to put the ill person at the center of the matter and to be of service to that person and to the one caregiving. Period. I have started making lists for visitors: please turn Mom every hour, clean up the kitchen, keep the laundry going, bring soup for Mom, etc

Onlychild...

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!

My thoughts were on the same wavelength as EstherM - to express how happy you are they stopped by to give you a break, or help with whatever you're doing at the time. But especially the break... drop whatever you're doing at the time and bolt out the door. At first for short times with little instructions to them. They will quickly experience your perspective.

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.

The next time they just drop in, you can tell them how happy you are to see them because you need to pop out for an hour or so. Or invite them to help you with whatever you were doing when they popped in and then suggest they call ahead the next time so you'll be ready when they come.

GARDEN ARTIST IS SO"ON POINT". You're an adult caring for your Mom. Lay down the law and take control or this will only get worse FOR YOU! I recently had a challenge with siblings who do minimum ( buy some supplies and visit once or twice a week) and I stopped answering all of their text/email and calls. I'm the one " doing everything " for Mom. If their not going to assume any of the WORK then I'm NOT going to answers their questions of "fill them in!". They have been visiting her A LOT MORE. I've also fought hard to get Mom 24 care. Recently, an aide had to take a few days off. I brought it to my siblings attention. I told them, I wasn't going to cover those days, and I didn't want a new aide who doesn't know Mom to handle her. I told them I was going to pay the other aides to cover her shifts. I told them, I do it all and I shouldn't have to FOOT THE BILL FOR THIS. THEY STEPPED UP AND GAVE ME THE MONEY.
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.

They came back yesterday, and didn't really speak to me. I think they got the picture BUT they brought my Mom groceries! They think I am starving her to death! She has been having trouble swallowing until recently she is getting better, but they brought her a roast chicken! I have food in my house!!!
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!

Onlychild it DOES take a lot of strength and courage to stand up to people. I'm still going through this with meddling neighbors.

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.

Freqflyer
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.

Hi Only child.,

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.

You are SO right Garden!
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!

onlychild, with it comes to elder sisters seeing another elder sister who is ill, there is always a thought in the back of their mind that they could get Alzheimer's/Dementia [as per your profile]. They are scared. That is why they are hoping this is some other illness. Some feel that Alzheimer's/Dementia is inherited, and that isn't always the case.

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.

Oh, and secretly document your requests for help, and their responses. If they start criticizing again later, you can remind them that you asked for help but didn't get it.

They're harassing and intimidating you. Don't let them do it any more. Think it over, work up your courage, and one step at a step, stand up to them.

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.