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.
"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.
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.
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.
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.
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.
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!
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.
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.
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!