I have been on here reading for a few weeks (and have had comfort in reading some of the solutions and that my situation may not be exactly like most, it is far from unique).
My mom (78) has been my father's (also 78) caregiver since he was diagnosed with dementia. Against the advice of everyone she chose my BIL as the in-home care (4 or 6 hours a day). It was a horrible experience where my mother was calling me (and as I found out many of her friends) complaining about the BIL.
My mother was rushed into the hospital last month, symptoms due to what was found to be a brain tumor. I rushed to the hospital and with her multiple hours until she received a bed in room (she was in ER) and every day from opening to closing of visiting hours. Since I was with my mother all of those hours, I told my Sister to watch my father. The BIL wound up staying there for the four days until I brought my mom home (and stayed with both of them until my mom had recuperated). [Although he did get paid for part of the days, it was IMHO, my sister's responsibility to watch my dad, and her husband did watch my dad for my sister the entire time (as he said, he "did it out of the goodness of his heart").]
The following weekend, he came into my parents' apartment and quit (no notice, he would not show up the next day - which was a holiday Monday). My mom thought, okay, she (at that time) was fairly mobile, and her request was approved to get another aide (from an agency) to replace the BIL. [Myself and everyone that knew thought that it was a blessing in disguise - even my mom was happy about it.]
Two weeks later (which was a week and a half ago), my father knocks on my sister's door. [Did I mention that I live about an hour away (when there is no traffic) and she lives down the hall.] My niece was there, came into their apartment and my mom was on the bed unconscious. She was rushed to the hospital. She had a seizure, which rendered her unconscious and has remained in the hospital since then in mostly a semi-conscious, but unresponsive state.
Although my sister allowed me to go to the ER the first day, and return the next day (after staying with my father) when my mom had a biopsy, she will not watch my father, I have basically been living in my parents' house watching my dad (only able to leave for a few hours on the weekends when the aide is here - I worked from their house during the weekdays - in those six hours I went home one day to get a change of clothing and see my wife and daughter, but rushed to see my mom for a little while, and the other day spent at the hospital). The other night she was going to "allow" me to go to the hospital - but only for a little while, since of her fear of COVID, she could not stay with my dad long (my father is immunized and only goes out to pretty much see doctors). Mom provided slight non-verbal responses yesterday, but will most likely be in the hospital for another week.
Another issue: For some crazy reason my sister is the HIPPA contact (not me), but she goes to the hospital for only a few minutes after work (she works literally three short blocks away), and is not aggressive at getting any information (I do not think she is trying) and when she does, she does not tell me or takes her time to tell me when she does.
I have tried to avoid my sister for decades (sometimes my family would celebrate holidays on two different nights so me and my sister would not be there at the same time).
With the above information, especially those with your own sibling issues:
1) How do I get my sibling to do her fair share?
2) How do I get information from doctors/etc. before my mom gains consciousness (at that time I will have her add my name, and even get a POA - which she said she wanted to do after last month, but we did not get to it, and never thought she would be in this state.
I want to help my parents, I do; I just do not want to be the only one. If she could share half of the burdens, I would be a dream.
We had begun talking again about Assisted Living after mom first went to the hospital a few weeks ago. Before then, she was adamantly against it, since she was doing "okay" taking care of dad herself. My argument was always - what if you are not always okay. Unfortunately I was right.
My dad actually does not need a lot of care. His memory is bad, but he gets up to make his own coffee, make himself food (if there is nothing to cook) - and sometimes he will cook with my/my mom watching him. He will get himself dressed if you give him the clothing, and take a shower (although sometimes he will fight us on this) - as long as you give him a robe to change into and put the water on for him (then have his clothing ready when he gets back to his room). The only time there is any real issue is when his gout flares up - his hand hurt too much to put pressure on them to get himself up (he has a motorized chair in his room that raises, and my mom has thick cushions), and even an elevated toilet - but sometimes he still has trouble.
Praying that my mom snaps out of her seizures and becomes cognizant again - but even if she does, she will not be able to help with most things (for herself or for dad). Not sure what the treatments are, but either chemo or radiation will knock her out. I agree with all - they will need AL or at the very least 24 hour home care.
My problem is that my sister is the health proxy and contact for everything. After going through all my moms papers and finding the information for every person and agency dealing with their health care, I was shot down for getting any info. I do understand HIPPA, and agree with its privacy policy, so I am not mad about it, just frustrated. Yes, my sister knew last week that none of the agencies would talk to me - even the hospital. Now that the 24 hour (or the 18-20 hours) the aide is not there falls upon my sister, she will get the hint and make the calls and arrangements. When it was me taking full-time care of dad, it did not matter to her - so she did not bother doing anything, but now that it does impact upon her directly, I am hoping she will get the ball rolling.
Thank you everyone (and sorry about going a bit into a rant).
Although everyone is telling me I have made the right choice by coming home to take care of myself, I am not sure if it is/was the right choice.
Dad is on Medicaid. Mom is on Medicare - so would need to spend down, etc. for her to go on as well. Even if they go to AL, from what I am reading there is still a cost. I may be able to pay half of the estimated costs (and it would be tight for me), but I am not sure if my sister would contribute a penny).
Update:
Its been a long weekend.
On Friday night, I had a conference call with my family (wife, aunts, uncles) to talk about possible health care solutions. It wound up being an intervention . . . . for ME. They all know that I was already burning out and was getting physically sick. They had suggested I leave when the aide came in the next day and just go home.
I could not sleep most of Friday night, so I wrote (and re-wrote) a long text detailing all that needed to be done with my father (including all of the research I had conducted into long- and short-term care (everyone/agency that I called that would not talk to me - since she is the proxy), all the financial info (bills to be paid), meds, etc.
By Friday night I also knew that I was not just a little sick (so I began wearing a mask in the house when I was near my dad). On Saturday morning I left when the aide came (and paid out-of-pocket for her to stay a few extra hours), got to my car, texted my sister (and a group of relatives and family friends) the long text, and said I was headed to my doctor in New Jersey.
I went to the doctor and have an upper respiratory infection, other issues, and a possible flu. I texted my sister that I was not coming back to Brooklyn. My sister freaked. And on the group text really went off on people, especially a 45+ year friend of my mother that suggested I stay home until I felt better - the things my sister texted back to her were lower than low.
Interesting thing is that before her tirade I was going to go back home the following evening (Sunday), after being on the antibiotics for 24 hours. But her lack of any empathy about my health and that of my fathers (I am obviously contagious) was just too much. In addition she talked to the oncologist the previous day and agreed to a treatment plan for my mom's cancer. She texted me in the afternoon that she spoke to them and would call me later. Late in the afternoon/early evening she texted that she will contact me the next morning. Yes, she unilaterally made the cancer treatment decision without even telling me about it, and was okay to have me wait until the next day to tell me any info.
For 50+ years my sister has always gotten her way, and my mom's crying has always been a factor into me being guilted into kowtowing to my sister (and my manipulative sister always knew this and always counted on me being over-caring when it came to my parents). It is a character fault - and the reason I have tried to keep her out of my life for the past 35 years.
I sent the text about 11 am, and the aide was leaving at 5 pm. She sent a text that basically stated "You won't be back when the aide leaves at 5?" I replied on the group text (which she is included) that I am sick and contagious and will not be returning to my father's house that evening. Which is when she began to freak.
Through the one person that is still in contact with her (no family, just one family friend), she relayed the message that she will not be showing up. I immediately was told (separately) by others not to give into her power play - or I would be stuck 24/7 in the house for the next few weeks (if I was there, she wouldn't spend the time to find alternative care).
After a very, very stressful few hours, her husband did show up. I only know this because I asked my uncle (who has his own health issues) to go over and stay if no one was there, and I would come by the next day (sick and all).
It is now Monday afternoon. No communication with my sister (a few questions relayed by the friend - where is mom's phone), and nothing about my mom, her treatment, or even what day the treatment will begin.
Once I get better, I will be going to the hospital - and hopefully find out something.
I would go back (when I am better) IF my sister (1) apologized to all, and (2) agreed to take over half the burden.
[My BIL is still there - I hope.]
I think its time for both to be in, at least an Assisted living. They can share a room/apt and have their needs met. If Mom is rushed to the hospital, Dad is safe at the AL. The only thing, they have to have the money. I live in NJ. If you pay at least 2 yrs in an AL, you can apply for Medicaid. The problem you may have is the AL may gave met their limit of Medicaid recipients. Find out how NY works?
If no money, then apply for Medicaid and find a nice LTC facility that will allow them to be in the same room. Your parents can no longer be alone. Mom cannot care for Dad. An aide 4 to 6 hours is not enough care.
1. You cannot MAKE another person do anything. While most of us will agree that your sister SHOULD probably step up and help, there is literally NOTHING you can do to make her do what you or anyone else considers her fair share. You will waste your own valuable time and energy trying to make your sister do something she is likely not going to do. You state that the relationship is already not on good terms. Your time/energy is likely better spent on getting help for your parents.
2. You are providing care for TWO individuals with a long list of needs. In our family we are splitting care across FOUR adults for ONE individual with a long list of needs and it is EXHAUSTING ALL OF US! Read that again. There are FOUR of us. Three of us are working. One full time caregiver. Two of them live in his home. We are burning through our vacation time. We are burning family time. We are burning weekends. We are using VA respite care. We are running on FUMES! And it is not going to get better. So we are at the end of the rope - we are waiting for the shoe to drop (because he is mentally competent but physically....NOT) where we inevitably take him to the ER and invoke the "unsafe discharge" and begin the roller coaster of finding him a skilled nursing facility after a rehab facility visit.
3. You and your wife, and your sister if you can all sit down and have a civil conversation, and your parents need to sit down and talk about the future - like yesterday. A real, honest to God, heart to heart about reality. You have working adults trying to provide round the clock with piecemeal interim caregivers filling in the gaps. That is only sustainable in the short term. Your mom was the plan - if I'm understanding correctly - right? It sounds like you have to have a backup plan right away. She can't sustain this. Unless you plan to stop working and move them into your home- which by the way I am NOT suggesting - they have to acknowledge that more help - outside help or some move to a place that is safe, is on the horizon.
4. What is the prognosis for your mom? You indicate that she will be coming out of the hospital and that you should be able to get POA and adding your name to her HIPAA soon, that sounds like she is coming home soon. But will she be able to be back on her feet, able to care for herself? I don't know the answer on how to find out more information while she is in the hospital - with covid restrictions here only one person is allowed in the hospital period so unfortunately you may be dependent on your sister until your mother regains consciousness - I'm sorry about that - I would probably drive my sibling crazy for updates but it doesn't sound like that would work with her. I don't know that there is anything you can do with the hospital to get them to give you information though.
5. How bad is your father's dementia? Is he to the point where he needs memory care? Is caring for him too much for your mom?
6. Do they need to consider an assisted living with step up care for your father- possibly near you so you can keep an eye on things?
There are so many things to consider right now, but I think it may be safe to say that you probably can't count on your sister for a lot of help here. I can say we bend over backwards to help my BIL and SIL as much as we can when we aren't working but we can't be there 24/7 the way they are because we don't live there. I can understand why you would be resentful, I would feel the same way. But you cannot make her do anything and you will waste valuable time and energy trying and just make yourself even more resentful in the end. Your time is better spent on getting your parents the help they need.
First know this. You can’t make another person do anything.
Forget fair. It will only trip you up and slow you down.
I hope your mom is able to reassign the documents.
Im sorry you and your sister can’t overcome your differences to tend to your parents. In my experience it’s a waste of time to think long standing issues will just vanish. It just doesn’t happen that way.
Let us know how things are going and feel free to write as much as you like. You can get very good advise on this forum.
It is obvious that your parents now require full-time care. This should be what you focus on. How to get them the full-time care they require without losing your life to prop them up.
Speak with the social worker at the hospital, 3 midnights admitted to the hospital means your mom can go to rehab. Get her there and they will help you with placement where your parents can be together. I have found that the person present will be the person that the staff speaks with. Don't bring up POA, just be there and ask questions, ask for help and focus on the new requirements for your parents well-being. In the mean time, get the paperwork drawn up, your attorney general website will have these forms, get them ready to be signed when mom has a lucid moment and get dads done now. Make sure that you do Durable POA and Durable Medical POA.
I am so sorry that you are facing all of this and I pray that you receive great help in getting them placed.
I think that I would just let it go with your sister, it is obviously a long standing issue that will not be resolved in the middle of this crisis. Act as an only child and save your sanity.
I would go to the discharge planning office at the hospital and start a conversation about where mom should go for rehab (if that is going to be recommended) or long term care.
If they ask if you have POA (I would not volunteer that you don't, but don't lie if asked) I would inquire if Sissy has shown any interest in mom's discharge plans.
They may recommend that you go to court to get guardianship of your parents.
My dad's aide works longer hours on the weekends, and she has agreed to stay a few extra hours each of the days (I will pay her out of pocket) so I can spend a few hours on both days to be with mom and try to talk to all doctors that may be around.
I do have an aunt and family friend that have been trying to coax my sister, and trying to advise her on the issues (one is a recent cancer survivor) but my sibling needs to be handled with kids gloves. [Although she has not done very much - even if not for me, I wish that she would at least be proactive in the care of her own mother.]
Thanks again
I feel used and taken advantage of by my sibling.
My wife would watch my dad at our house (at least as long as she is allowed to work from home), so I can spend each day at the hospital (I can work from my laptop - ad travel back and forth from NJ to Brooklyn) but we do not want to lose the aide services for my dad.
Sorry, if it sounds selfish, but I want to do do what I can, but I want their daughter to have an equal share. Also very sorry about these long posts - I did not intend to, but as soon as I started writing, I could not stop.
Thank you.