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Hi,
I totally understand and relate. My sister and I had similar issues. However, I took charge a bit and let her know when and for how long I needed her to relieve me. I needed to do so as calmly as possible. It may be very helpful for you to see a counselor to help you shift your inner distress into self care actions. Radical self care, because you need it to survive this challenge and protect your own physical, emotional and spiritual health. Does mom have assets or might she qualify for Medicaid long term care?
That would cover home care aides, assisted living, senior daycare programs, nursing homes. You too deserve a life worth living, dear fellow caregiver. I used this prayer daily: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.” Caregiving is a great challenge. It makes us wiser if it doesn’t kill us! Please learn to change what you can, do what is healthiest for you and if you have faith, pray for the right guidance to a safe life for mom and a happier healthy life for you. You deserve it. I kept my dad at home in his apt. with help 13 hours a day via Medicaid. He got pneumonia and went to hospital and rehab last August. In November he was assessed as done with rehab goals and I had a painful decision to make bring him home without 24 hour care or transfer him to nursing home unit in rehab facility. I knew he was safe but lonely. I visited h as much as I could, and paid two aides he had before to spend 3 hours a day with him. He died January 20 at age 100 years plus 5 months. I did the best I could. That is all we can do. I dream of a day when all seniors have compassionate excellent care in nursing homes they are fully staffed and well trained to give patients the best interventions for dementia. Our families deserve this help and Medicare should cover it. Hopefully it will happen soon if we vote for it. Wishing you the best.
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NeedHelpWithMom Mar 2019
It’s true, Pbc

We need better care for seniors in this world. Flip side too, caregivers need more support.
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I completely agree. You don't have to make her available for your sister who does nothing.
Btw get a poa and health proxy in place if your sister is more of a problem.
The other issues, it's time to have get in pull ups and you need to toilet her. Jmo. I'm a sole caregiver with a brother who does nothing and never calls or comes by so I understand. Try to get more help through the government.
I see a lot of "take advantage""let it go" and I disagree.
You have a right to be pissed and it sounds like mom doesn't even know she's there really. It's a gift to your sister. Are you wanting to "gift" her?
Btw yes do ask her in writing for some financial support for your mother, since she can't spend quality time with her. Jmo
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NeedHelpWithMom Mar 2019
Clssyeyes,

Yes, as I tell my brothers. My mom is OUR mom. She shouldn’t be only MY responsibility. Nothing I say makes a difference to though. So sad.
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I know the feeling oh-too well! I do everything, and I mean everything! My sister visits when she feels like it...

I had to let go. I hope you can, too.

Let your sister visit. That's her relationship with her mother.
It has nothing to do with you. Leave the house and get out for a walk or run some errands or go for a massage...

I would write a letter to your sister revealing your thoughts and feelings. Since she works, perhaps ask that she can offer a bit of money towards you and your mom since you are doing the "heavy lifting" of 24/7 care. No blaming or shaming her, yet just revealing your experience and how you feel about everything. Usually knowing that I've been clear to my sister, and heard, without getting into a fight, helps me deal with challenging feelings, no matter what she does with it.

And remember to do some self-care. Hire a caregiver, even just for a couple hours and get out and go for a walk...

You're doing a great job! I really appreciate it! Knowing one of our elders is in good care warms my heart! All the best to you!
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Use your sister’s sporadic visits to your advantage. Focus on that. Take the resentment and channel it into a plan to get some scheduled time away.
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Letting your sister visit your mother or not letting her visit isn’t your real problem. You will still be the caregiver. You’re dealing with an unbelievably difficult situations but as has already been pointed out, you do have choices. You need to change your circumstances so that your resentment toward your mother doesn’t continue to grow. A facility where she’ll be well cared for will give you the opportunity to resume your own life and let her live hers with peace and compassion. You can visit her and be the caring daughter that you are.
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NeedHelpWithMom Mar 2019
Susan,

Assisted living costs lots of money. NH isn’t desirable because Karin worked in a skilled nursing area and saw less than quality care.
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Karin
Why is your mom living with you instead of Assisted Living or a Skilled Nursing Facility? Not casting stones, just asking.
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debbye Mar 2019
Assisted living or skilled nursing is not the answer for everyone. My mother wakes up two or three times a night crying for water. Who is going to get that for her in a facility? She would never be able to learn to use the call button. She would be alone all day, most likely parked in a wheelchair in the hall or a common room. She can't operate the TV. She doesn't like to be around other people. She would likely fall the first day she was there. Those are a few of my reasons. For others, cost is a huge issue. Decent facilities cost thousands of dollars a month. Not everyone has that kind of money, nor can they qualify for Medicaid.
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The fact is some people care more than others. I understand how you feel but instead of being resentful when your sister comes to visit your mother take the opportunity to plan some “me” time. Let your sister know that you appreciate her coming to spend time with mom while you take some “me” time. Take the time for a movie or dinner with someone. If she makes excuses then simply tell her you would not be available and she can call and speak with mom.
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What would your Mum like? With only a few visits a year to see her child are you going to stop a visit! We have to look from the outside and although I can see and hear your desperation and frustration, which I have had with my brother, you have to let her see her Mum whatever you may think. She will have her reasons why she isn't helping out or visiting just as my husband wouldn't visit his Dad who had MS until the very last moment. He said he couldn't bare seeing him an invalid. Let her go, take some photos, be with your sister, make your Mum happy seeing you both together. Give your sis a big hug and say you love her, more will return to you than you think.
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Karinslife Mar 2019
The visits stopped when the dementia started. The handouts also stopped when the dementia started. When the visits stopped paying off. The visits stopped altogether.
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Karin
you have every right who you allow into your home. I have a sneaking feeling you haven’t ever come clean and confronted your sister with your feelings and yes anger. Have you? If not you need to. An undercurrent of unspoken resentment and bitterness isn’t hurting her...it’s damaging you.
Here are two things you stated: "My sister isn’t doing it for my mother, she’s doing it for herself. She can pick my mom up and take her somewhere for lunch. I don’t want her around me." Fine..that's the so,Union then. And then later you went on to say you’d take your sister into your home if she became ill. And you asked WTF is wrong with you (quote)? deep inside you know this isn’t rational.
Tell her how you feel and get it out there. If you can’t do it alone..get an objective third party involved. You might be surprised how much better you will feel.
I have two sisters who live far away and travel here is expensive. Unrealistic, but at times I resented them for it. Realistically I knew it wasn’t something they could help. I think part of it is we think we should be like the Waltons. Everyone being a together family pitching in. Not reality is it? So I look at what am I gaining from this that they aren’t?
Another issue to help you with the resentment is to find ways for a life of your own...it can be done. Find a caregiver that can come in a few times a week so you can feel that you aren’t attached to mom as another appendage.
Please let us know if you have an honest talk with sis.
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PLEASE READ —-i understand your heartbreak first hand. I cared for Dad after his massive stroke, and Mom for the years that she lived without him after he died. It was heart-wrenching and back-breaking. Nevertheless, i would give everything just for ten minutes with either or both of them. Now they are both gone. I miss them immensely. Even in their end-of-life, struggling moments.

My siblings did not help or care. They could not “emotionally handle “ seeing Mom and Dad in a sickened state. They rarely visited. My parents knew they wouldn’t. My parents knew them well.

My parents had, unbeknownst to me, written several of my siblings out of their wills. (There were still plenty of people left in).

i have been sued by the ones who were written out. They alleged that I “isolated” my parents and refused visitors— in attempt to gain control over my parents. Fortunately, I never did that. Fortunately I have photos of visitors, family events that I took my parents to, etc. even when I brought my parents To Them!

You may say, “but my parents don’t have anything to leave, but my siblings wouldn’t do this, but I’m best friends with that sister,” etc. you may say all the things I would have said.

Take care. You are not alone. Love every moment with your Mom. They are fleeting.

I don’t blame my parents. What they did was awesome! It has, however been very disappointing to endure.
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gdaughter Mar 2019
I have seen my sister crying on the way back to the airport. What's wrong? Mom. The contrast of seeing her from one infrequent visit to the next. Mom could be much worse than she is. But the feelings are more self-centered and less about who holds the bag the other 360+ days a year.
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I felt a similar way when I was caring for my Mom. Then my brother died. Just so you can look yourself in the mirror, for Mom's sake, I'd grin and bear it. But I would seriously find a way to see my grandchildren! They are your future!
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anonymous763470 Mar 2019
If we all just continue to “grin and bear it“, we will never ever break this cycle. We need to hold people accountable. We need to be upfront and forthcoming with them. Make your voice heard!
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Can you take her to your sisters to visit instead of your sister coming to you? Let her know it's gonna be an overnight or weekend visit. Then DON'T answer your phone. If necessary, don't even call first (for a day visit), just show up and then find an excuse to run to the store while she takes care of mom. And get that blue light that shows you where the pee is. I'm pretty sure Amazon has them.
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gdaughter Mar 2019
The sister is "afraid" she will "destroy" things.
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I suggest telling your sister she can visit with her mother to give you respite but they will not be supervised visits in your home. Her visits need to give you a break.
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Judysai422 Mar 2019
Perfect.
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Karin, hugs to you. I honestly have been here and I can't overstate how strongly I sympathise with your feelings.

I have no contact with my three siblings at all now - I mean, I will not willingly ever find myself in the same location as any of them again - so I can't exactly cite myself as a "good" example; just one who has been through this to the end.

I haven't asked before and should have because it matters: what, if anything, does your mother say about her other two children?
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Karinslife Mar 2019
Nothing unless it’s brought up. Then she says it’s ok. It’s not ok for me. I’m doing all the work which mom thinks is a privilege for me. The really weird thing is that if my horrible sister ever got sick I know that I would be there for her even taking her in to my home if necessary. WTF is wrong with me.
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Karin, white vinegar straight on the carpet will kill the enzymes that cause the smell, i have used it on my carpet for years, not too many times, but no ill effects and once the vinegar dries, no odor.

This is entirely possible that she has peed where the urge struck, she may have also hid soiled clothing. Gives PD a new meaning, instead of private detective, pee detective.

I want to say, it is okay to put a load down that has become to heavy.
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Karinslife Mar 2019
I’ll try that since burning down the house is not an option. Thanks
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Welcome to the "I have a do nothing sibling" club. If you tell her she can't visit, what will be the fallout for you and for your mom? It's hard to decide whether you both will be better off with refusing a visit. Someone suggested you leave during the visit. Maybe a neighbor will let you stay at their house while she visits or you sit in the car down the road. This way you don't have to be there, but you can see if she takes off leaving mom alone. See if your health insurance will make seeing a psychologist possible. I suggest it as a help for dealing with the anger/frustration before it harms you. Been there, done that. I sure hope the dog doesn't think he get a free pass to poop anywhere now that a human is doing it.
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Karinslife Mar 2019
i am ok with my mom but the sister doing nothing to help hurts. I also have a brother but he doesn’t even speak to his only child, and hasn’t had a relationship with mom for many years. I am looking forward to being able to tell them when they come for their inheritance (mom has no will) that they both should be ashamed of themselves. I will have every visit and phone call documented. The dog keeps me sane. She did pee a couple of times when my mom was peeing in her shoes but that was back when mom first got here. I’m sitting in my living room right now thinking my house smells like a nursing home. I think I need to roll back the rug and see if mom is peeing on the carpet somewhere. Who would ever think they’d need to check for that? This is crazy. I’m laughing so hard thinking I need to check for secret pee...is my mom marking her territory??
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Our lawyer told me I could meet at a restaurant for her awful children to visit but I found a facility that does respite and day care. I put my mother there when the others came to visit. I had been too traumatized by them and didn't want to see them and don't have to. Easy fix and it spends their inheritance.
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NeedHelpWithMom Mar 2019
If that works, not a bad idea!
Mom still gets to see her children and since your relationship with your siblings isn’t harmonious then why should you have to spend time with them.

We don’t get to pick our family like we can our friends. Some who have family members that aren’t the nicest people choose to spend time with close friends. I don’t blame them.
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As soon as your sister arrives, grab your purse and car keys and head out. You might want to check in every little bit, just to make sure sister has not left your mom alone. Sister will either figure out she needs to help or will never visit again. Either way, you win. Also, check with you county/state Commission on Aging for help - respite help is available, please take advantage of it.
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NeedHelpWithMom Mar 2019
Sounds good in theory but they leave. My brothers left mom alone.
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Karin,

I feel for you. I have been caring for my mom since 2005. My brothers don’t help, never have. I hosted large holiday meals for many years. Last year I said to my mother that I was stopping the big holiday meal thing and I felt so liberated! My mom got upset for a short time but amazingly said that she understood how I felt. That was a nice surprise and a relief. I still cooked, but just for my kids, husband, mom and me.

What hurts is that everything is expected from the full time caregiver. Also the criticism from them can really get under my skin. Having said that, truly futile to try and resolve any issues with them, so I stopped trying for my own sanity. I used to think I had to say something just to get it off of my chest, only to feel miserable afterwards by their selfishness and stupidity.

Now, I pretend that I am an only child. My mom has multiple children but I look at myself as an only child, get it?

My siblings don’t visit on a regular basis either, just for a short while once in a blue moon. They have always been off doing their own thing, living their own lives and not having time for family. They aren’t even close to their own kids. I got tired of trying to figure it out or fix it. I like the expression, “Can’t fix stupid!”

I wish you well. You are welcome to pm me if you need to vent. I know how hard you work caring for mom. I am in the same boat. I am not made of money either so I get that it isn’t practical to spend a ton of money. So hard. It’s all so hard. They say every cloud has a silver lining. Sometimes I think that is true. Other times, I say it’s hogwash!
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PandabearAUS Mar 2019
I don’t think you were selfish or stupid to feel they way you did
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The mother has a right to contact with her children. The OP does not like her sister, resents her selfishness, does not want her in her house - all of which I can fully sympathise with. But these two points need to be reconciled somehow; and refusing to allow the sister to visit the mother won't cut it; and sabotaging the visit is counterproductive at best.

The OP isn't busy on Mother's Day, she hasn't made alternative arrangements, she just doesn't want to see her sister's smug fat face on that day or any other - Mother's Day isn't the point. It's how to enable visits to the mother without the OP wanting to smash her sister's head in, that's the issue.

And ideally, make it work *well* so that the mother has a nice time and the sister is encouraged to do more, more often.
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Karinslife Mar 2019
Sure my mom has a right to contact with her children. So where has my brother been for 20 years. Oh right, he hasn’t spoken to his only child for 5 years so why would I think he’d help out now. Where was my sister last Christmas? I know where she was for the 20+ Christmas holidays before that. Here at my house for a free meal. She will call the day before mother’s day and I’m supposed to accommodate her? For my mother? My sister isn’t doing it for my mother, she’s doing it for herself. She can pick my mom up and take her somewhere for lunch. I don’t want her around me.
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Re going out while your sister visits
NO ADVANCED NOTICE
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gdaughter Mar 2019
and for gods sake, make sure your car is in a place that she can't block you in LOL!
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Karin, that's great you have found an aid. Here's to a happier future for you.

You can't change people that have entitlement issues but you can minimize contact.

I think when people don't help they don't get a say, so if you have plans for a lovely mother's day for you and mom, go enjoy and let sister plan a different day. You have all the power and don't need to let your none to bright sister wreak havoc on your peace.
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PandabearAUS Mar 2019
I Agree. If you don’t contribute in any way you don’t get to say how it goes. I respectfully disagree with opinion that you should not get between your mother and sister You are doing all the work so it should be the way you want. Be assertive but not aggressive. Go something like, I am sorry but Mother’s Day is not going to work for me. However, Then present her with some alternative dates
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Karin,
I have 4 living siblings who have chose not to be a part of my parents life, since I moved them with me. I have a brother who has told my Mom he will be stopping by to see her on his way traveling through. I feel all kinds of ugly things about this, which I would never say to my Mom. She loves her children whether they love her back or not. So, she is excited about his visit. I am sick about it because now I just hope he actually shows up, its been years since she has seen him(his choice). I would like to say all kind of things to him, my human does not want him in my home. But, I would never not allow anyone to see my Mom, if she wants to see them. If we hold on to these resentful feelings it just promotes illness in us. While as a previous poster said, they do not feel guilty. So, allow your Mom her visit with her daughter. Unless your Mom doesn't want to see her. But either disappear for a while, or stay and be civil. But do not let resentment fester into bitterness and hatred. It is so not worth it.
May God bless. Hope you find peace.
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PandabearAUS Mar 2019
Oh. Please let us know if he turns up. Stomach churning
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I'd like to point out that we all have choices. Your sister chooses to visit mom 3-4 times a year. You chose not to visit your grandchildren as much as you like. Whoa, that's not a choice, you say. Your alternatives for seeing the grands (or not) are staying with mom, hiring help in your home while you go, or hiring help at a facility who can handle her while you go. Those are choices even if you don't like the options.

The private caregivers do not work for out-of-town; I get that. But you chose to not try the facility for whatever reason. It's not killing people or there would not be any living there. It's just not optimal. But it's also not optimal for two people (you & mom) to cease to live full lives instead of just one...just your mom. I really encourage you to try respite service for two weeks and visit the grandkids. Mom will get over it and probably forget you left. Those days with grandbabies are short and will last the children 70 years. Blessings.
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Karinslife Mar 2019
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How long will she be "visiting"
Can you quickly leave and say you have an appointment as she is walking in so the day of care-giving will be all her? Even better if the visit is "extended" due to a car breakdown..or the train was delayed...or some other reason that you are going to be LATE..
Alternate to this would be have sis take her on an outing and when they get back you are gone and door is locked so she has to keep mom occupied a bit longer.
Does your Mother have any income that can be used to pay for ..pick 1..or more
Longer hours of caregiver
Adult Day Care
Memory Care facility
a week or two of Respite?

I should also ask how well does Mom do with the visits? Does she get agitated after, is she more confused? If so it might not be a good idea for sis to visit if you are not there to control the situation and keep the visit short. Like no more than 30 minutes. It is possible that if sis knows visit will be max of 30 minutes she may not even bother to visit.

It might be time to discuss placing Mom in a Memory Care facility so that will take burden from you so you can enjoy the visit with Mom and not have to worry about her peeing in a shoe, pooping in a garbage can. (gotta say that is better than many other places she could have gone) And if that means application for Medicaid then that is what has to be done. But you need a life as well and your children and grand children are priority.
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NeedHelpWithMom Mar 2019
Grandma1954,

Can I just say thanks for saying we, in my case, as full time long time caregiver deserves a life of our own!

I get so so tired of being expected to do this. The truth is that none of us really have to do this. We care for our parents because we choose to but really getting sick of being treated like it’s our duty! While our siblings do nothing to chip in. Don’t even want to hear about them not being able to. Then they should at least pay for respite care! Anyone else feel this way?
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Karin,

Just curious, does your sister know how you feel? Have you told her you miss your grandchildren and need support? If so, how does she respond?

I didn't go into this resenting my siblings. Before any of us knew there was a dementia issue they knew full well that our mother is a huge challenge to be around. They both made it clear they "couldn't do it" and since I was early retired (from nursing too) it just kind of fell on my lap. I really hated that the retirement we worked hard for got hijacked but I didn't blame them.

Then my mom got here, the dementia became obvious and that is when they really backed away. They know our mother is struggling, they know I am struggling. But I haven't heard from either one in four months.

Now I am resentful. Hurt mostly. I too miss my adult son who I have not been able to visit. Meanwhile their lives go on as normal. I wish I had sage advice here but I don't. I do have plenty of empathy.

Maybe tell your sister the truth? You are burned out. You need to see your kids and grandchildren. If she offers nothing then imo you are justified in not being around her if it's going to cause you ANY stress whatsoever. Don't be there when she visits your mom. Inform her you will have other plans.

I'm sorry you are going through this. I do get it. If you ever want to talk or vent feel free to message me.
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NeedHelpWithMom Mar 2019
Piper, It’s so hard, Isn’t it? My brothers are useless! I do it all. Gets old!
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I tend to agree with cwillie. I understand your resentment but would your mom enjoy a visit from her other daughter? Don't punish your mom for how you feel about your sister. Encouraging your sister to visit on Mother's Day is not a favor to your sister, it's for your mom.
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Outside your home, where you have settled your mother for her safety and wellbeing, and at any time other than this particular day, you can say and do whatever you like about your sister whether in person or in effigy. That's between you and your sister.

But this here particular decision - should you let your sister visit your mother where your mother lives on Mother's Day - is ONLY about what's good for your mother. Will your mother enjoy seeing her other daughter, even if a only little bit, even if only in the moment? Unless it's a definite negative, for reasons which you haven't yet mentioned, then you must allow your sister to visit and if possible make her tolerably welcome. Or at least not put laxatives in her tea.
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NeedHelpWithMom Mar 2019
Countrymouse,

I used to bring leftovers for lunch. Laxatives in her tea! Hahaha. Memories! I worked with a guy who always stole my lunch from the office lounge area in the fridge. I put my name in large bold print and he still stole it, so I put ex lax chocolate candy in it as a special treat for him! He NEVER, EVER stole my lunch again.
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You know siblings like this don't ever feel guilty about not being there for Mom. They do not experience regrets. And she probably figures with sister being a Nurse she can handle it. Lot different working a 8-12 hour shift and coming home and relaxing than 24/7 care. Unlike children who grow up, Dementia patients go backwards in time and end up being a big baby.

Karen, if her care is getting to you after 7 months, it may not improve. Mom seems to be at a bad point now, its only going to get worse. I would start looking for a nice LTC facility. If Mom has no money, then apply to Medicaid. My Mom had about 20k. I placed her in a nice LTC facility and she private paid for 2 months, Medicaid took over the 3rd month. Mom was pretty "out of it" but she adjusted very well. The staff loved her. I allowed them to take over her laundry because residents always seemed clean and oder free. She was provided Depends and her toiletries. All I did was visit.

If this is not the way you want to go, then check with ALs in the area and LTC facilities about respite care. It will cost but you can then get away to see grands knowing Mom is cared for. Or tell sister, I need to get away can you take time off and come here and care for Mom.

I like the idea of getting away while sister visits. No ask just say, while your here I am going to visit my grands or whatever.
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NeedHelpWithMom Mar 2019
JoAnn,

I completely agree.
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Your sister may be fearful of caring for an elderly person and so she "avoids" her. If she works part time, then she has a day off or a few hours ? Sit her down and ask about the next steps for your mother, possible nursing home ( even if it is not in the budget) just to get the conversation started. Then discuss her views ( fear) of caring for an elderly person. See if she would shadow you a few times to learn. Then plan a weekend away so you can see the grandkids.
She may have the personality of avoiding hard things, only you know that. If so- take care of you and look into adult daycare or visiting nurse for a few hours out.
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NeedHelpWithMom Mar 2019
DJ9876543,

True, she may not be cut out for caregiving but she could contribute in some other way, cooking once a week, something!
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