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You should be absolutely up front with your mom letting her know how you feel and what her options are
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I am my Mother’s 24/7 caregiver and have been for 21 years. I have 5 bio kids. All grown. I devoted my entire life to them. I am doing the same for my Mother. My siblings won’t help. My husband was diagnosed with a genetic terminal illness several years back. I thought the kids would change their lives a tad and be happy to assist where needed. They didn’t. I was mortified and heartbroken. I have always had a close relationship with them and still chat with them several times a week. However, i’d be a liar not admitting that when the shock and disappointment wore off, I found myself having had lost the deep admiration and respect I’d always cherished regarding my kids. Some people are true givers. Self sacrificing. It comes automatic to them to do what they feel morally must be done. What they feel to be a family responsibility. Others are able to justify not taking care of their sick and elderly. We all are aging daily. E will need care one day. It’s not out of the normal thinking range for a parent to assume their kids will want to take care of them. When we have children and we care for them and rear theme honestly think they will forever adore us as we do them. In a parents mind we always remember our children as the tinge babies we bore. We never realize just how easy we one day will be forgotten. It’s traumatizing actually. No parent wants to be with strangers or forced to accept they aren’t that important to the kiddos they raised!! Something to ponder actually.
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Jo123456 Dec 2020
I did not raise my children to care for me.
I raised them to be independent.
I have good kids who are there when I need them ( I am apparently starting to look fragile while caring for my husband and brother at age 76).
I cared for babies/children/young adults—— a bit different from total care of a helpless, “fussy”, perhaps huge, old person with no training.
An incontinent adult can trash a home in no time if they do not comprehend.
I have plastic over my furniture and the invalid bed. Some furniture and the carpet will have to be discarded.
Fortunately I had no really expensive furniture and I moved a lot of furniture upstairs to make room and protect some things.
I could go on. I do NOT want my children to have to live like this.
The 6 loads of wet laundry, the scrubbing, the carpet scrubbing late at night and towels thrown over to prevent a slipping that the carpet was supposed to help with..
The preparing of 6 special meals a day and late nights, the money spent because the person was not lucid to spend their own money..... NOT what I want for my kids.
People who must also work or care for growing children ....I say NO !
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Unfortunately your story is not an uncommon one. The answer however is not easy because it mostly requires a series of difficult conversations. I am going through the same thing but by asking for input on this exact site I have been able to have the difficult conversations with my mother about her own care. In the end the children are not there to be the caregivers to their parents. Discussing with your mom what her future plans are for her care is going to take a lot of willpower and it’s going to take several episodes of denial and most likely blaming you for not loving her enough to invite her into your home and into your life. The first question to ask your mother is what is her financial status and what is her plan on care once she gets to the point where she can no longer care for herself. I had to remind my mother that I work a very demanding full-time job and that I would not be there to care for her the way she needs to be cared for and to be honest I don’t think that it would be good for my own sanity or my marriage to have my mother requiring everyone’s full attention and help (my mother just happens to be a malignant narcissist)
The second question to ask your mother is why does she feel that it is your responsibility to meet her care needs. That is a question that I can guarantee you she will stumble on because my mother certainly did. The best she could come up with is because I gave birth to you and you have to. My mother even brought up the fact that there is an old law on the books that states that the kids have to take care of their parents. She was prepared! This one question is going to open up a lot of conversations and probably a bit of yelling. Just stay calm and continue to ask your mother why she feels that it is your responsibility and duty to care for her as she gets older. Eventually she will start to understand that it is not your role and that she has to take responsibility for her own care. Now this does not mean that you would not be there to help her through the process and to help her when you are available and willing to do so. Keeping that line of communication open but defining what you are willing to do will at least let your mother know you are not abandoning her.
As for your older sibling who lives 15 minutes away, I would suggest having a conversation with that sibling and asking them what has happened that they are not willing to assist. I had the same thing in my family and it turned out that my sister was abused after the older kids had left and she just had no mental or emotional capacity to help. And to be very honest with you, I don’t blame her one bit. This may not be your siblings story but it is certainly worth asking the question so that you don’t lose that relationship. I have actually become closer to my sister than I ever have been and I’ve also learned a lot more about my own parents. Some of it was good and some it was very bad.
I hope you are able to start to resolve this issue, not necessarily for your mother but for yourself. I know how heavy this burden weighs on a person. It affects everything in your life and every moment of your life. It is a shame that some parents put that kind of burden on their children instead of working to have a loving relationship. In closing I can imagine your mother is scared of getting older but she is very lucky to have a child that is willing to assist her through that phase of life. I wish you all the luck and all the strength that you need to get through this.
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ExhaustedPiper Dec 2020
"My mother even brought up the fact that there is an old law on the books that states that the kids have to take care of their parents. She was prepared!"

Wow!!

Glad you stood strong Thomas!
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Every situation is unique but when my mother needed 24/7 and she clearly wanted to stay in her own home and she wanted 24/7 to come from me I told her I understood why she wanted to stay in her own home and I respected that. The reason I understood was because I had a home and I intended to stay in mine for as long as I was able. If she was going to stay home she would have to have help from someone other than me.
Big (HUGE) difference was that I lived about 30 minutes away so I could promise to personally meet and "train" everyone who would work for her. Perhaps that is a role in which her husband's daughter and maybe even your brother can assist.
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Is there any chance that you can say that your house payments have been delinquent and no way to find more paying work that could end your slide into bankruptcy? Believe me, all your relatives & friends stop calling or seeing you if you can be honest enough to share your financial plight be it real or imagined. It’s never a matter of if this will happen, it’s simply the way it is for most of us. Costs of anything “medical” went from 10% of households budgets 20 years ago to 25% today. Your mortgage may be your most expensive portion of your budget but will be replaced within the next 4 years by medical insurance costs alone, never mind what they don’t insure. IE- you can’t handle the added expenses of “taking care” of others when you can not afford to take care of yourself.
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marymary2 Dec 2020
Good other points to consider. One interesting study I just read, Medicare doesn't often cover mental health (seeing a therapist) or if it does the payments are so low that only 30% of mental health practitioners accept patients on Medicare. The study also said there is rampant ageism in that many therapists think old people aren't worth helping. A bit off topic here but I thought it was an interesting side consideration for many of us.
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I am the only daughter. It’s old fashioned thinking. Unfortunately, I grew up with this attitude in my family. At some point we have to break the cycle.

It’s 2020, and we shouldn’t even be having conversations about gender equality in this day and age!

The truth is that none of her children, male or female are obligated to care for her.

Tell her how you feel honestly and there is no need to apologize for your feelings.

Wish your mom well, offer to help her set up caregiving needs from an outside source.

She will survive and you will have your sanity and peace of mind.

Best wishes to you and your family.
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marymary2 Dec 2020
Great reply. I had one additional bit for those who are the scapegoat child of a narcissist parent (though doesn't sound like the original poster here): you will be discarded in a most painful will by your parent when you do not do what they want. Prepare yourself for that inevitable pain.
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I first suggest you pray about it. Second, it’s you mother. Brothers are suppose to help as well but on a different level. I would talk to my mom and let her know what options she has and must chose. Either way a caregiver is needed whether she stays home u visit and ur brothers must participate. If she’s with you and say lives on a lower level u have to have a caregiver/ sitter when u want to go out. You can’t do it all alone. I would not leave her out to dry. God does not like that she birth you snd sometimes we seem to forget snd become selfish. They were not selfish when it came to use. So be gentle and see what options you prefer.
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Beatty Dec 2020
While your approach is very caring & supportive I must put a flag here 🚩. Do you mean females must take on the caring role?

"Brothers are suppose to help as well but on a different level".

I know a few men who have taken this on above their sisters. Caring is not gender specific.
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Your first obligation is to take care of yourself. You do not have to make the same mistakes your mother made
nor do you have to meet your mother’s expectations. My mother admitted to me she tried to abort me when she was carrying me.
Yet I was the only one she came to for help because her son was God.
But I knew she would never be allowed to live with me. Parent’s actions have consequences too!
There was no guilt or remorse when she told me this but it sure explained a lot.
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Read through this thread:

https://www.agingcare.com/questions/elderly-parents-trying-to-force-themselves-into-your-home-do-i-start-calling-senior-living-places-no-459759.htm?orderby=recent&page=2

Especially Kimber's amazing post.

The fact that you're already living so far away helps. Don't fly back up there just for a general hospitalization anymore.
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CTTN55 Dec 2020
I just read Kimber's (yes -- amazing!) post. She handled her mother masterfully!
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MaryKathleen is right - sometimes you have to hurt other's feelings - just the way life is. Understandably you do not want to give up your life and significant other. What your mom and grandmother did was their choice - it does not bind you at all. And there is no earthly reason why anyone would demand that daughters must make the sacrifice to do hands on care. Subcontracting so to speak is perfectly acceptable and may well be the wisest choice on many cases. Caregiving decisions have to work for all doing the work. Only fair. I would lose no time in making it very clear to your mom that you are not going to do what she did in regard to her mother. Times have changed, and you are making a different decision. With that in mind, you are willing to help her make other plans. Being blunt is often being kind and if you waffle around this issue, you will only create confusion and turmoil.
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You may have to hurt her feelings. She isn't thinking about your feelings is she? Just say "I am sorry, I can't do that". Don't argue, or feel guilty, just keep repeating that sentence over and over. Why are we so afraid of hurting someone's feelings when they want us to uproot our lives for their comfort?
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Hey Treecrout. There isn't a way for you to make it known that you will not be her full-time caregiver without your mom feeling hurt or resentful. She will get over it. The same way she got over it when your brother told her to call 911 because he wouldn't take her to the hospital. I feel sorry for your mother in that she let her own martyrdom ruin her life. That's the thing about martyrs. Not only do they ruin their life, but the ruin everyone else's along with it. Her mother did the same thing to your mom and it ruined all her relationships and her life. Now she's of the mindset that if she had to suffer like that by moving in her mother and being the caregiver, then you deserve to as well because you're her daughter. It's a cycle of abuse. Make it known to her now that there will be no living with you and that you will not be her caregiver. Then start making plans with her now about what the other options might be. Like bringing in some homecare workers to help out for her and her husband. Like many, she's refusing outside help. She will accept outside help when she can no longer manage her situation rather than be put into a nursing home. I worked for many elderly clients who refused to allow outside help come in. My answer to them was always the same. 'Either we work together and you get to stay in your house, or your family is putting you in a nursing home'. This is not an expected response from a hired caregiver but it works. I think it will work for your situation too. Good luck.
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Treecrout, your mother has given you some good psychological ammunition--you are aware that she was miserable while trying to care for her own mother. You could remind her of this, and if she had actually made the comment that she was miserable, you could remind her of her own words. You can even tell her (very tactfully, of course) that you are thankful she has enabled you to learn from her mistakes!
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Treecrout
Im glad to hear your mom is getting care. Thank you for the update.
You sound so much better. You are doing a great job gathering the siblings around the issues.

Here are a couple of ideas. Contact the Area Agency on Aging for your moms county to see what services are available. Here is the link for Illinois. You can ask for an in person evaluation to determine what services your mom and step dad are eligible for.
I used them in my moms very rural area to install hand rails where needed in her home and a wheelchair ramp. They did not offer Meals on Wheels in her area which would have really helped her.

My DH aunt, who lives in a different county from my mom, has had MOW three times a week. I wanted them for a wellness check. My theory is the more eyes on the situation the better.

So check out your moms county to see what is available.

https://www2.illinois.gov/aging/pages/default.aspx

Home Health Services paid for by Medicare are limited but I found them very helpful for my mom and also now for my DH aunt. You can go about starting the services a couple of ways.

1) Call her primary doctor (or endocrinologist if that’s who manages the diabetes) and ask them to order HH. If they push back, just ask for an evaluation.

2) Call a HH agency and ask them to evaluate your mom for services and they will contact the doctor with the request for the doctors order. Just have your moms doctors information to give them. Doctors phone and fax number. Some doctors are more familiar with the services than others.
The HH rep can quickly access whether Medicare will reimburse for their services.

You can find the HH Agencies on line. Your step siblings or brothers may know of someone who uses home health and has a personal reference to one.
medicare.gov has a page that will compare the ones in her zip code.

How old are your mom and step dad?

HH will do a weekly nurse visit to check on vitals. More often visits when there is an issue that needs to be followed. The diabetes being out of control might be enough to get them onboard. If help is needed for hygiene, they will send out an aide to help with baths. Occupational, physical and speech therapy can be arranged through HH. The experience I have with them has been through traditional Medicare. If a UTI is suspected, they can handle the testing. If a blood draw is needed, they can do that. I can only imagine how difficult it is for your mom to go for routine checks with needing to arrange care for her husband or take him along.

Now until December 7 is when changes can be made on insurance. You haven’t mentioned if your mom is having trouble with managing the household finances. There are usually signs if there is a problem. But it can be difficult to catch on if you aren’t in the home to see how the mail is handled or if collection calls are on the phone.
If she hasn’t already done so, putting her regular bills on auto pay is a good idea.

Your mom really has her hands full running her home, caring for her husband, managing their diets. I hope you are able to find her help and that she is receptive. It always appeared to me that even the smallest layer of help makes a difference.

Try to impress upon your Mom that the more wiling she is to utilize the help that is available, the longer she will be able to live independently.
It is a lot for you to absorb. So no doubt your mom has been struggling with it for awhile and hoping you were the answer to all her problems.
It is a bigger job than one person can handle and come out on the other side sane.

She may need a little time or even an antidepressant to absorb that while you aren’t willing to be her own personal assisted living that you also aren’t abandoning her. It actually sounds like she has a lot of help from her husbands family. Many on this site have no help from others.
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tjdietrich62 Dec 2020
Thank you... sounds like sage advice...
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You Can't help how you feel.
It is very hard to take on the responsibility of being the sole Caregiver and moving someone into your home.
You have two choices, let her know now your feelings on the subject and what her options will be.
Or
Wait until the time comes, after her husband has to be put in a Nursing Home or has passed.

If your other two brothers aren't going to help out or visit much then you might think about finding her a Nursing Home in Florida closer to you so at least you'll be able to visit and check on her without having to fly to visit.

I guess a 3rd option would be if she has the funds is to let her pay for a Caregiver to help or if she needs constant round the clock care then she could hire a Live In and be able to stay in her own home but the cost isn't cheap but she'll be happier staying in her own home.

This is what I did for my 96 yr old dad that did not want to go to a Nursing Home.
I installed Nest Cameras in the main rooms of tge home that he goes in and hired 24 7 Care.

Of course ut's being paid by my Dad so their won't be any inheritance money but him being able to live out his life in his own home is more important.

You can check around and find individual care from $10 an hr up as ling as you don't go thru an Agency as they charge $20 and up but only give the Caregiver minimum wage.

If I were you, I would have Camera put in their homes now then you're able to tune in and see and hear what's going on 24 7 by using your cell phone or laptop computer.
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"The attending physician does not feel she is a candidate for prescribed home care based on this incident. However, since nothing of this type was prescribed after her ankle surgery, our next attempt will be to talk to her ortho and see if he will prescribe some sort of home care.

a lot will depend on how she feels today, but none of us can stay with her right now, nor can we afford to pay for a caregiver out of pocket for any length of time. I have no idea how this works, but really hoping that there is a Medicare funded solution."

Here's what happened to my 92 y/o next door neighbor. She had a (partial?) hip replacement. Her 3 kids are all out of state. They had planned for her to go to rehab, but her dr. said no because of covid-19. So they had no plan. What happened? The one daughter ended up staying with Mama for a month, and now I've noticed that she's apparently taken Mama to her out of state home. Don't let this become you as the only daughter!

P.S. The woman next door lives in a large 2-story house. Her kids have tried to get her to move, but she refused. It will be interesting to see when she's brought back here to live on her own again.
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Update: We were able to get her admitted to the hospital yesterday to get her acute kidney infection treated, and today we are working to talk to a social worker at the hospital to find some options upon her release. The attending physician does not feel she is a candidate for prescribed home care based on this incident. However, since nothing of this type was prescribed after her ankle surgery, our next attempt will be to talk to her ortho and see if he will prescribe some sort of home care.

a lot will depend on how she feels today, but none of us can stay with her right now, nor can we afford to pay for a caregiver out of pocket for any length of time. I have no idea how this works, but really hoping that there is a Medicare funded solution.

we are encouraging her husband’s family to get the ball rolling with some sort of care for him, even if it is in home visits. He has VA benefits, and any help for him would really help my mom since she is doing a lot of this neglect of self since she is caring for him.

greatly appreciate everyone’s advice. I really hope we can get them some help without further stress and drama. Would love to just have a day without crisis. It’s been a while since we have had a break from emergency mode.
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disgustedtoo Dec 2020
"...nor can we afford to pay for a caregiver out of pocket for any length of time."

None of you should be paying for a caregiver out of pocket for ANY time, not just for emergency or whatever. That should be paid from their income/assets, NOT anyone else in the family!

That said, sometimes there are limited funds, both income and assets. You stated he can get VA benefits - someone (could be his daughter, mom or combination of helping them get these!) should start working on that. Mom could have gotten VA aid and attendance, but long story short, the place "helping" me messed up and I gave up. Don't! He (and possibly she) can get some in-home assistance. He might qualify for VA placement.

Medicare does *sometimes* provide very limited assistance in the home and possibly a one week respite care for the primary care-giver (mom.) It does require, at a minimum, being home-bound AND accepting some personal care, such as help with bathing.

If their income and assets are limited enough, Medicaid might also provide in-home (limited) care or placement care for the husband (I don't believe you can get both VA benefits and Medicaid - go with the one the provides the most.)

You are understanding what others have gone through, which supports YOUR decision that you will not be the care-giver. We CAN support our LOs WITHOUT being the person providing the hands-on care. It is how my mother is being cared for. There is no way I could do it, my bros might as well not be part of the family (some limited help dealing with her condo and initial prep/move to MC, but basically more or less AWOL since!) I have been managing her care and finances for over 4-6 years now. One bro isn't local, done with him. The other just complained for the few things asked of him. Now that she's on hospice, I'm pretty much done with him too!

It is good to hear that both of your brothers are at the least willing to work on a plan (one that doesn't include taking care of them in home, either home!) Hopefully you can all present a united front to mom and make some progress!!!
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Start by talking with your life partner about what ways you are both comfortable in caring for your mother. Talk about time and costs involved in the ways you are OK with caring for her. Also, discuss your concerns and her needs that you can not cover.

After you have outlined what you are willing to do, you will need to have that talk with your mother. Let her know that you care about her. let her know the kinds of care you are wiling to provide. let her know the types of care that are beyond your abilities. Then, you can ask her to brainstorm with you about ways she can have the rest of her needs met.
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Can you sit down with her and make a list of what her expectation of you are? Go prepared with a list of all the things you might be expected to do and go through them one by one: Ordering medicines, dr visits, housekeeping, grocery shopping, IT help, yard work, home maintenance, cleaning, laundry, haircuts, clothes shopping, errands, cooking, etc.

Ask her how much she would be willing to pay someone to do each of those items. Don’t comment, just let her tell you what she expects of each item and write her answers down by each item. Tell her you will review them and get back to her.

Go away and review the list, then decide which ones you are willing to take on from a distance. Sit down with Mom again and tell her what you are willing to do and what items she will have to find someone else to do, and pay, to do.

If you don’t want to take on the role of chief caregiver to your mom NOW is the time to take a stance and say no. Even if you move her near you many of these tasks can become very time consuming.

Will her husband come too? Multiple the tasks X2 then. I was taking Mom, a fairly healthy 92 yer-old, to 2-3 medical appointments a month, each of which could consume about 3 hours for a 10 minute visit.

Please, don’t act in haste. Spend some time on this forum before you make any decisions.
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What you need to avoid is tip-toeing around the issue hoping not to anger your mom. We needed to have the "no, we are not going to move to take care of you. No, we are not going to take care of you in our home" with both my mom and my inlaws. There was just the assumption that we would do so.

We were politely direct - they did not like it. They were angry. There was yelling - attempts at guilt tripping etc. We held firm. Politely - over and over "we'll not abandon you - but you are in charge of your aging - and it is not in our home". So be ready for that.

Good luck.
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Beatty Nov 2020
Excellent advice & reply.

Honesty is the best policy so both sides can plan properly.
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Much more important to you are “what are your reasonable expectations and plans” ! Decide how much help you may be able and willing to give to her. Be realistic. It’s very hard to be a full time caregiver, and this site is full of people who’ll tell you this is true. Then tell her what, or how much you are willing to take on. Be firm. Set limits to protect your own life and your most significant relationships.
It is completely unreasonable* for an adult to expect their child to put their parent’s wants and needs ahead of their own. Though some do, none the less. Resentment is almost guaranteed eventually.
This is a well meaning warning to start early. I didn’t do this enough with my own elderly mom, as she got older, and regret that a lot. You may need professional help (a counselor) with learning how to set firm and completely reasonable limits. I did. Avoid the guilt trip.
Best of luck. Please keep us up to date. You’ll find lots of support here.
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Treecrout Nov 2020
Thanks so much for your advice. I have been talking to both brothers today and we are on the same page. In home help is needed. None of us are going to be 24/7 caregivers, but we all will be involved with her care. We are trying to connect w a social worker at the hospital she is currently in to get some guidance. In a way dealing with this may help her realize that we are here to help, but she has to take some responsibility.
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Don't refer to living with you as an option. Start talking about moving her closer to you - find an assisted living facility or little apartment for her and talk about that. Also, if she has the finances, talk about the little apartment AND some in home help to assist her with things she needs.

Have a sit down chat with her about the in home help and seeing drs while she's at her current residence. You live too far away to give her 24/7 help and you need to know she's safe. The one sibling that is nearest her is not an option as already demonstrated. The other sibling is not that handy for emergencies. Tell her in order to stay in that house she has to agree to some help. Otherwise, she and hubby may need assisted living now to keep hubby by his daughter. If something happens to him, she could consider a move closer to you. You might throw in a comment about adult protective getting involved if others think she/hubby not able to live alone anymore.
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Treecrout Nov 2020
Thanks so much for your advice!
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"basically, she expects me to be her 24/7 caregiver at some point, because that is what she did, and I am the girl."

Oh dear. I have to hope not. Because your poor mother is going to be savagely disappointed if it's so!

But don't be scared because disappointment of that sort will do her no harm, whereas you have her own example with your grandmother's care to show what will happen to your loving relationship if you try to follow in her footsteps.

Besides, it is now 2020, and you live an awful long way from your mother, and you are altogether a different sort of person.

Really you are going to have to take a leaf out of your brother's excellent book of Common Sense Told Like It Is. No, not taking you. Call 911. And meekly, like a lamb, your mother did. See the result of that? Did it mean she thinks your brother doesn't love her? No, of course not. It just meant she got treated!

And again besides, what about your stepfather? She can't suppose you're going to take him in and provide 24/7 dementia care too?
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Treecrout Nov 2020
Great point. At a minimum there needs to be help for her husband. I believe one of the reasons she neglects her own health is because she is so focused on making sure he is ok. Help for him is at least respite care for her and it is a great place to start.
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I’ve also been very clear that I will not be the caregiver, I had to do it for a time a couple of years ago and my mother was so nasty and abusive. She would cuss at me while I was emptying her commode. For. No. Reason. She doesn’t have dementia, she would later claim she never did that and she’s not a “morning person.” I told her I will take care of legal and financial matters but someone else will take on physical caregiving. If you’re afraid of hurting her feelings, think about the F word being flung at you mercilessly while you’re cleaning a commode and all you said was good morning. (I hope this hasn’t happened to you of course) but a situation like that will instantly turn your feelings into a priority, which they should be. I think my mom thought it was a done deal with me too, and when I told her it would not happen she accepted it. She would rather have a relationship as a daughter and not a caregiver, than none at all.
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Treecrout Nov 2020
Thanks so much. I think you hit it on the head. I want to be her daughter, not her nurse. Right now we are dealing with a crisis because she refused to call her doc when she started feeling badly (over a week ago). She has also blocked any attempts for her husband’s kids to set up in home care for him, and he has VA benefits that likely would cover it.

for the third time in a month we are all scrambling to get her care because she refuses to take care of herself and refuses help. Then it becomes a disaster and we are all picking up the pieces. My brothers and I all agree that this is not sustainable.
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I have been very clear with my parents that I will not provide care, Period.

You just tell Mum that expecting you to provide care is not an option and she had better make other plans.

It does not matter what she chose to do with her own mother, you and an autonomous adult and make your own decisions.
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Treecrout Nov 2020
Thanks so much. Really appreciate your advice and perspective.
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Thanks, all. Greatly appreciate your advice and it give me more resolve. We are dealing with another emergency today since my mom refused to call her doctor about a week ago when she started feeling awful. Went to the ER on Thanksgiving and was sent home with antibiotics.

my younger brother and I called the med facility that treated her via conf call and were directed to get her to the ER as soon as possible. She has diabetes that is barely controlled (refuses to eat healthy, etc. keeping with the theme of not taking care of herself).

older bro who previously refused to deal with her agreed to go over and facilitate getting her into an ambulance vs driving her there (I agree with this decision—she’ll likely be admitted more quickly).

younger bro is renting a car and driving to them until things get settled. I am paying for his rental since I am out of state and it’s the least I can do.

older bro is very angry at this point, but I understand his position better now.

this all has me very upset because I feel guilty for being so far away, but angry with my mom because this likely could have been avoided if she would just take responsibility for her health and accept the help that a Medicare likely would pay for.

greatly appreciate the help and support of this forum. I feel like the weak link in the chain, but trying to support my brothers as best I can from here and prepare for the difficult conversations ahead.
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AlvaDeer Nov 2020
I am so very sorry to hear this. You were already feeling hopeless, helpless and afraid; now THIS. I do think, however, at some point this will come to the place where one or the other is hospitalized; may be time then to approach Social Services which can help so much more easily--it's what they DO-- in perhaps even troubleshooting getting the parents into a care setting together. Talk with your brothers. I am glad you could help with some of the financial side for your bro, and truth is that is about what you can do now. You are far away. If you all were far away you would all be fielding this by phone. Wishing you luck and hoping you will keep us posted.
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I think it is IMPORTANT to have this conversation, gently but firmly. There has been a huge shift in the norms of social expectations in the last several generations. Think of how new Medicare itself is? I still remember when it came in. Think of how many of us saw grandparents in our own home, there until their deaths (which in my case all came in their 60s; we can now add three decades to that).
In some cases these changes are recognized. My eldest daughter is 58. I am 78. It would hurt me to think she would even consider giving up some of the most quality years of her life, free of job and children raised and through college, to sacrifice those years to me. We have been clear with one another that that is NOT happening. I have saved most of my life to be certain it will not. But there is a whole other group my age, who cared for their own parents, who still see that as the norm, and who expect it happen.
Sit with your Mother, tell her of your fears for her in attempting still to care for her husband in the home. Tell her that several things she has said has led you to believe that she thinks that you will be caring for her in future in your own home. That this will not be happening, but that you will never abandon her, and will attempt to help her find the best living circumstances she can for the latter years of her life.
If she asks you why give her the real answer. WHATEVER that may be. As gently as you can. For me it would be "I am so sorry, but my human limitations are many; I am not as strong or as good as others, or any way you wish to look on it; I simply am not capable of doing that kind of care. "
Don't expect her not to feel anger, grief. Don't expect yourself not to feel guilt. Are these hard facts not worth the grieving, the sadness, the pain, the confusion?
When my bro became ill, in his last tiny home, with Lewy's Dementia, age 83, there was one brief shining second after flying where he lived, when I said to myself "If you were any kind of human being you would give up your partner, your comfortable life in a place you love, and you would move here and take care of this man who was the best and most decent man you will ever know for the rest of his life". As I said. ONE MOMENT. After that, he and I were honest with one another, supported one another, did the best we could the next two years, until his death. Tears? Fears? Anxiety? Dread? Oh, my yes. Part of the price of love and our own human limitations. Be honest. Relieve yourself of this by honesty so that you don't face every single conversation with your Mom with dread.
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Nancymc Nov 2020
So well said. And yes, customs and expectations have changed ALOT over time. Thanks for sharing your heartfelt experience, AlvaDeer.
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I am the oldest if 4 and a girl. I also stayed in the same town my parents lived in. My sister passed, one brother lives 8 hrs away and YB is doing his own thing. So Moms care came to me. When she moved in with me it was not going to be permanent. She had some money and I was trying to sell the house. When in 2 years the house didn't sell, I placed her in an AL hoping it would sell. She had enough money for a year in the AL.

So my suggestion for you is stay in Fla and she stay in Illinois. Research resources in her area. One of your brothers should be her POA. Not you, you r too far away. I may ask the older brother why he is so adamant about not helping your parents at all. Is it a boundary thing? He doesn't know how to set them so better to just say no? He doesn't get along with Mom or Dad? Or he is just a selfish person?

There are those on site that don't agree but you don't have to physically take care of your parents. Two women cannot live together. With you, its been 30 yrs since you have been near Mom other than a visit. IMO, living together would not work. And I hate the word "owe". Our parents chose to have kids, they chose to sacrifice for them. But as children we do need to make sure they are safe, fed and cared for but we don't need to be the ones to do it. Your brothers need to be made to realize that you are not going to be moving back to IL and you will not be moving Mom to Fla at this point in her life. So, Mom has to plan now what is she going to do when Dad gets worse or passes. You all can be supportive but SHE needs to plan her future. That she can't expect her children to be there for her 24/7. You all have your own lives and responsibilities.

You need to nip her expectations of you in the bud, meaning now. Don't wait till something happens. When you heard that conversation, that was a good time for you to sit her down and look her in the eye and say "Mom, please do not expect me to be your Caregiver because I am the girl. That has nothing to do with being qualified to care for you. You have two sons that live nearby. You need to rely on them more or find resources. I cannot be relied on living _____ miles away. And sorry, me moving back or you moving to Fla is not an option. I really don't think that will work for either of us. There are resources available you need to take Advantage of. If you need help in accessing them, I can do that"

I never had this conversation with my Mom. She was still independent till her mid 80s. Nephew lived with her and was a big help. I took her in when her care became too much for my disabled nephew. But we never had the conversation that she expected me to care for her or Dad. I really don't think she felt she would live till 89 and have Dementia. My MIL was independent till she was 91. TG she stayed in FL after FIL died. She would have relied more on my DH if she moved back.

Soooo, have that chat with Mom.
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Treecrout Nov 2020
Thanks so much. I have been talking to both brothers quite a bit over the past days, and I think we are on the same page. My older bro actually has been pitching in with the current emergency, and he has made me understand that his stance is to offer help, but not be run around and dropping everything when something goes wrong due to a lack of planning or refusal to accept help from an outside caregiver. I think he is right. He is a lot stronger than I am with boundaries. I think now that I know he is not abandoning us, I can work with him to determine what we can and cannot do for mom. I am hoping that we siblings can stay united and support each other so no one feels “stuck.”
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Your feelings are shared by many others who are sandwiched between their families and their parents. Manage her expectations by telling her what not to expect. Be direct and factual but don't sound uncaring. Many times it's not what you say but how you say it. You know the facts... you live in FL, you have family there, there are others closer to be with her. You can reassure her of your love for her and that you will always care for her but, if she should mention it, never promise that she'll never be in a care facility. That could very well be a promise you can't keep. Don't volunteer to be her POA. It would be impractical to perform those duties from FL. Understand her concerns but stick to your guns.
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Treecrout,

Guess what, you are ahead of the game, because you found this forum BEFORE you made the horrible mistake of taking on being your mother's caregiver out of FOG (fear obligation guilt).

Read for awhile, you will see MANY, many stories from people like me who found this forum way too late, in my case I had already made decisions about caring for my mom that I regret 100%. I moved her next to me when she decided it was time to get rolling with her elder care plan, which was me.

What I should have done when she started in with the manipulation was to stand firm and clearly tell her that I was willing to help her find senior housing, close to me, on her dime. And that's it.

Now she is right next to me, and everything is falling on me.

Do NOT be me.

Your mom is caring for a person with dementia. She FULL WELL knows the toll of this, and when you have the talk with her, mention senior living with a continuum of care "in case" she ever needs dementia care. If she gets angry, push back and say -- "Why would you want that for me?? I want to be your visiting daughter who watches out for you while you get quality professional care".

The sooner you make things clear to her the better.

One more thing- that local brother who seems to irritate you with his seeming indifference, is possibly the one you should talk to, because he seems to have successfully established some boundaries for himself. Being local he probably has seen more than you know and has wisely distanced himself from the BS.

Good luck, and remember you are ahead of the game! Need some incentive? Check out this recent thread (and there are many, many more just like it)

https://www.agingcare.com/discussions/this-is-getting-hard-463168.htm?orderby=oldest
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