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I go back and forth between being fed up and "knowing" I'm not the crazy one and feeling guilty that maybe I should be doing more to help. I just don't know what to do anymore.


Some background information: my sister and I have been caregiving for my Dad for at least 8 years. He had a stroke many years ago (which started the caregiving) and now has cancer that has impeded his eating and swallowing, but he can still eat soft foods and soups. The doctors told him last year that he probably had less than a year to live. One of my boundaries from the beginning was I won't do any bathing/changing clothes etc. I don't want to see my Dad naked. Dad now had incontinence issues and has a catheter which has increased his needs in that area. So far I have held firm with my boundary - I do not doing any changing, cleaning privates etc.


Dad's health has now steadily declined. He is more confused, but does not have dementia. IMO though, he should NOT be living alone, but Dad won't move and my sister seems to be doing everything in her power to keep him home.


I have suggested hospice which I think would be a huge help to Dad (and us), but I get screamed at that Dad doesn't need hospice and WE should be taking care of him and I'm a horrible person for not doing certain things (changing clothes etc). Dad has fallen twice in the last couple of weeks and each time I keep thinking this will be our chance to get him help, but no - my sister goes and picks him up. She won't call 911 because she knows they will take him in and tell him he cannot live alone. She is an RN so she at least does assess him to make sure there are no injuries.


I just don't know what to do anymore. Do I just sit back wait for another serious crises and let my sister handle all the small ones that keep happening? If something serious happens that Dad has to get admitted to the hospital then the doctors there can be the bad guys and tell Dad he cannot live alone. If I contact hospice and open that can of worms I would be creating a HUGE family problem because they don't want any outsiders in the house and Dad doesn't want to move.


It feels like it's 2 against 1 and I'm just tired of feeling helpless, tired of being yelled at when I cannot do what my sister thinks needs done. We both work full time, but I also have children to take care of. I've tried to do as much as I can, but I'm burned out. I just don't know how to find the balance between MY life and happiness and helping Dad.


Sorry this was so long. I suppose this was kind of a rant and venting as well as asking for advice, support and encouragement. Thank you for reading.

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I would ask to sit with Sister and all caregivers and again make clear where you stand. Something like this:
"I need to make my position clear. I will talk for no more than 3 minutes. Then I will listen to you and respond to you. I believe that Dad now needs hospice care, or in any case more care than we can provide for him. If I am outvoted on that, and the rest of the family refuses to seek this care, then THIS is what I am willing to do:
1. Cook the things that Dad can eat.
2. Clean the house and do the laundry.
3. Be here on (list days) for (list the number of) hours.
These are the things I will not do:
1. personal care involving Dad.
2. Whatever else you will not do.
(End with) Now, I understand that I have limitations and inadequacies; I am not a saint and I am not perfect. You are free to judge me as you please and speak with one another about me; I however, after today, do not intend to hear your judgements firsthand. If you insist on giving them, I will withdraw from any care and I will do visits only."
Add whatever you like but this gives you an idea. You are NOT a Saint. If you were we would fill you full of arrows and send you into eternity to answer ALL of our prayers. You have made the decision from your own soul; you have insight into yourself. Yes, they will think you aren't good enough. Fine. I am not good enough either. Most of us aren't good enough; we just can't admit it.
I wish you so much luck going forward. Will it hurt? Yes. Will it be easy? No. And the others are IMO WRONG WRONG WRONG not to get Dad the hospice care he needs and deserves. So they aren't getting my vote for Sainthood either.
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KatD81 Feb 2, 2020
This is a very good plan, with the exception of the threat to withdraw from care work. This may escalate things, as people tend to get their backs up when they sense a threat.

If you do need to give an ultimatum, make sure it's one you will follow through on. Otherwise it just teaches others that they can talk you out of sticking to your word.
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I found that the caregivers we are trying to help from many states away are sometimes like drowning people. They are anxious and angry and desperate. And they lash out with "solutions" that might keep them afloat.

I don't try to justify the number of times we visit or the "choice" to live far away. I'm not convincing them. I'm clear on what we can do to help and what we aren't willing to do. And I will accept that the decisions I make are not the decisions they are making for themselves. I understand it is unfair and it makes them mad.

So..maybe find a time when your sister doesn't feel frightened and overwhelmed, and talk to her about the situation. Actually, listen to what she says and don't talk. Don't defend yourself or argue. If she says "we have to keep dad home" don't argue for assisted living. If she says "If you would just do this or that" you can say "what would we do about this if I wasn't available." Ask are there any circumstances where she might feel your dad would get better care in another living situation.

If she feels heard and can hear herself saying things like "no, we are keeping him home forever" and you don't argue- you just receive it- you may find that she reflects on the conversation and possibly comes to another conclusion.

The next time you have a conversation, start by restating the things she told you in the first conversation with as little judgement as you can. See if any of her ideas have mellowed. At that point, you have to tell her "These are the things I am willing to do (research care homes, organize the house whatever) and these are the things I won't do anymore. " Don't defend your decision. Apologize for disappointing her. Let her yell and get it off her chest. She's scared.

This is hard. You might need to practice with a friend so you can hear hurtful things like "You don't love Dad" and "You're abandoning me." without defending yourself. Just keep saying "I know you are disappointed" and "I'm sorry, but these are the things I am willing to do."

This is hard, hard, hard. Be kind and firm. I do have family members who have cut me dead because of this but I comfort myself that it really isn't about me. It's about their need to control things that frankly, are not under our control. No matter how much care you give your parents, they might decline and they are definitely going to die.
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NeedBoundaries Feb 2, 2020
Thank you for your reply and your suggestions! Palliative care would probably be good for Dad. I'm not sure if she'll agree, because she is distrustful of EVERYONE, but that might be an option. I think she's afraid that anyone that comes in will see how Dad lives and will mandate 24/7 care which she and I cannot do ourselves. But, I might be able to bring up palliative care this week after Dad's next appointment with a specialist. If I can get Dad on board with accepting more help he can tell my sister that is what he wants.

I do think you are right that she is scared and overwhelmed. I think she is denial that Dad is dying and she is doing everything she can to pretend he's not.
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DO NOT do any more than what you are doing! Your sister is the one enabling this foolish notion of staying in his house alone.
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NeedBoundaries Feb 2, 2020
Thank you for your reply! It helps to know from other caregivers that I'm not crazy. My family assures me I'm not, but then I let my sister's rants bounce around in my head and then I second guess myself. I KNOW that's what narcissists do - try and bully others to get their way, but it's so hard to separate myself from it. I know my sister loves my Dad and she means well, but she has absolutely no regard for anyone but herself and my Dad. I think she promised my Dad that she would never put him in a nursing home so I think that is part of her motivation. It's just become so absurd the lengths she has gone to.
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I can’t get my head wrapped around even considering not wanting to see your dad naked as a “boundary”.

All of us have “limits” that exceed our capabilities and comfort levels. You have yours, and you’re entitled to them.

Since your sister, as an RN, has a certain set of sensibilities and tolerances she needs to learn that your “tolerance set” just isn’t the same as hers is.

I think the elephant on the sofa here is that your father really isn’t in a safe place, receiving the care appropriate for his condition. For whatever reason, your sister seems to have taken his “wants” as her crusade.

You may find yourself in the situation where you will not be able to continue working in cooperation with your sister. You need to advocate for your welfare whether she feels as she does or not. She sounds pretty unwilling to let go of control.

Under this kind of stress, you will often encounter issues that simply can't be solved. Don’t hold yourself accountable for being asked to do “your” impossible. She may be making choices for her own contributions that should actually be her impossible too.
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NeedBoundaries Feb 2, 2020
I asked her once "When is enough enough?" and I started to get the lecture again about needing to take care of Dad etc etc. This was the point that Dad was on antibiotics, but was too confused to remember to take them at the designated times. (I had set his dual alarm clock to go off at the times he needed to take the next pills.) Apparently he was confused by that, didn't know why the alarm was going off, what pills he was taking or why. My sister's solution was to call him every 6 hours to remind him to take the pill. Stuff like that she thinks is no big deal, but that is stuff that I find to be beyond what we should be doing while holding down full-time jobs. Maybe I AM the selfish one. It's just that I see Dad's needs increasing and increasing and when is enough enough? If it was a one-time event that we needed to help him through I could see disrupting our lives to help out. But I see this as a downward spiral, never-ending series of events.
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Sounds like a terrible situation your sister has created! Yes keep your boundaries!!!! Like you say, your sister does what she wants about your dad, she may or may not realize she is running herself into the ground, and for what? A selfish father who is content to let his daughters be his slaves?!? Um....nooo!!! The only person we can change is ourselves, no one else. As long as you stated what you will and will not do, then stick to that. And Hospice was a blessing for me... i worked in oncology and lost my husband to pancreatic cancer, and its hard to try to handle everything yourself. You just cant....you are a loving daughter and have no reason to feel guilt for anything....that would imply that youve done something wrong, and you havent. Hang in there and come back to vent anytime!! Liz
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NeedBoundaries Feb 2, 2020
Thank you so much for your reply! Sometimes I do think my Dad is selfish in expecting all of this of his daughters. And then I feel guilty for thinking that because he has been a good Dad and very generous with us throughout our lives.
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Hospice is an excellent suggestion. It seems you are the only one of the three of you who is thinking clearly. I think you need to let go of caring what your sister or any other person thinks of you and hold true to your knowing and your boundaries. Put your own family first. Your sister may have a meltdown soon and that will be of her own design, no?
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You’ve gotten wonderful advice already but I want to add that you are definitely NOT one of THOSE siblings. I would be blessed to have a sister like you, one with compassion and empathy. You’re doing the best you can and I applaud you for setting boundaries. It is something I have needed to do for a very long time but just now attempting it.

I also want to mention hospice. My father is in hospice at home. I still do whatever care is necessary. The nurse visits at least every 14 days, more if we need it. The social worker visits regularly, and they have offered a CNA and chaplain but we have declined at this time. They provide and deliver all his medication and durable medical equipment we need. I guess I’m hoping your sister will consider hospice if it means he can still stay at home. Then if your dad needs to be placed in a hospice house, they can encourage your sister to see the light...then you don’t have to be the bad guy. I hope things get better for you. I think you’re pretty great!
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NeedBoundaries Feb 2, 2020
Thank you! This brought tears to my eyes! I think hospice is wonderful (in general). I'm just afraid they will not let him stay home. Dad can barely transfer from his bed to his wheelchair. (He's fallen twice in the last couple weeks that I know of) I'm also pretty sure he cannot actually get into bed by himself anymore. I've helped him the last couple times I was there even though it was early. He does sleep a lot, but I think he was opting to go to bed because I was there to help him.
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I was glad when Dad went before Mom. He was from that generation that Mom took care of him and the 4 kids. She never worked. She waited on Dad hand and foot. Dad went on disability at 52 so she then had him to care for him. Yes, I think he would have expected me to care for him if Mom died. But I told my brothers I will not care for Dad. I will not care for a man other than my husband.

I am with you. You gave sister boundries stick to it. She is a trained Nurse. She is the one who is not willing to place Dad. You have other responsibilities.
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Your father does not care what he does to her as long as he gets what he wants. Dementia patients lose their ability to have any empathy for anyone else. He may have been a caring dad, but now, he is perfectly happy to let her sacrifice her life. And she is in some spiral where she maybe feels she must do what he wants to be a good daughter. And she is mad at you because you are not doing your duty. It is not your duty to provide his care. When we no longer can take care of ourselves, it is not our kids job. I am 67 and my husband is 69. My FIL is 94. We got him and MIL to move, emptied his house and handled the sale, moved them again from independent living to memory care where MIL died in October. I am a retired nurse. Perhaps family members thought they should live with us. It was never a consideration. If we wanted that, we would have done it but that is not how I am spending my retirement. And we don’t feel guilty. Nor do we expect our own kids to take care of us.
do only what you want to do and don’t feel guilty. If you value your relationship with your sis, try to help her. But you don’t have to martyr yourself on that alter.
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I imagine your dad is of the generation of men who expected women to run the house, raise the kids and take care of HIM when he has any needs, without any thought to whether the women in his life wanted to, or were capable of this.

I know this b/c my DH is the very last living dinosaur of that generation of men! (I know there's more, but I'm making a point)

Your dad is aware enough of the situation to accept outside help or even a move to an ALF or something--but he has sister running herself ragged trying to do it all for him. And to him, that's business as usual.

Your sister has no right to demand you do anything beyond your capabilities to do. You are actually offering to do a LOT.

Having boundaries--yes, I also refused to bathe my dad, I felt he would have been mortified at the thought. My 2 brothers handled that when it became too much for mom.

Sounds like your sister is on the brink of a complete come-apart. Your offers to help are good and kind and if she doesn't see that--that's her problem.

Sadly, your dad sounds like he really needs palliative care--and later, Hospice. Your sis is and RN? Then she certainly has seen dying people.

I have found, when I vent and rant to my older sis, she is simply quiet and listens. Doesn't judge, doesn't try to make it all ok, just listens. Silence is a great 'answer'.

Your boundaries are fine and sis is just trying to manipulate. Hang tough!
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NeedBoundaries Feb 2, 2020
Thank you so very much for this! You are exactly right! That is EXACTLY how my Dad thinks! It annoys me to no end, but I know that I will never change his thinking. I suppose that's why I try so hard to keep my boundaries in place. But inevitably I let my sister bully me and go along with what she wants - to keep the peace in the family. I just wonder if my sister would be one of the people on a forum like this complaining that she is doing everything and that her sister (me) isn't helping enough. Which is why I am trying to find the balance. In my head I know that I'm doing what I can, that my sister (and Dad) are unreasonable in what they are doing. I just worry that I can't empathize enough to understand that Dad wants to stay at home at all costs. I DON'T understand it -I am at the point that I have emphatically told my children (and my husband) that I will never do this to them and they are to put me in a home if my health declines to the point that I cannot take care of myself.
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