Can I just say no?
Hey all, a few of you may remember my previous posts about my grandmother who broke her arm, and only a week later had a massive stroke.
The past few days have been a nightmare. Though she is doing well, and in physical therapy (much to her complaints) the nurses and social worker are saying they can only treat her for 21 days and then have to send her home, regardless of her condition!!! It is just her and I here with no family support, and I KNOW I am not physically or mentally capable of caring 24/7 for a partially paralyzed dementia patient. The issue is, her daughter (my mother) has POA, and (with the doctors backing her up) has basically told me "oh, you'll do great! You always have. We believe in you" aka "we are going to take away the next 5-10 years of your life and you have no say in the matter."
I have talked to the area on aging, her doctors, and even a couple of elder care attorneys, voicing my concerns only to be told the same thing, without POA, I have no say in her care.
I am sick to my stomach, crying frequently, and scared out of my mind. Can they really dump full responsibility on me with no recourse? Am I able to just refuse and move out to let them figure it out? I know this must sound really selfish but I have been caring for my family since I was 11 years old, even up to when my grandmother has the stroke, and I honestly feel that they are not taking mine, or my grandma's health and safety into consideration.
I'm only 27, and even if it's a late start, I still have some chance of making a future for myself. Right now I feel like I'm standing before judge and jury waiting for a death sentence. I feel horrible for essentially punishing my grandma for something out of her control, and other people's lack of empathy, but I feel like I'm losing my mind, and am afraid for both of us if I get forced into this. And sugestions are welcomed.
Oh honey! (I do not say that in a condescending manner... just in a sympathetic one:) You are NOT stuck, but you are going to have to be very strong and stand up for yourself in a way others may not be used to.
To your mother... “As POA, you are responsible to get proper care arranged for Gma... I am not it, so you should start looking elsewhere.”
Let all flattering language roll off of you and do not argue specifics AT ALL because that turns it into a back and forth. It gives her something to grab hold of and make you feel badly about. You say that sentence over and over again in front of a mirror. Then, you say it to the doctor, the attorney, your mom and anyone else who wants to guilt you into this.
This is not your mess and you have zero responsibility here... even if you have been living with her up until now. This kind of care is above and beyond, and it is up to HER CHILDREN to figure it out, not her granddaughter.
And you need to understand that what they are saying about you having no say in her care is true... BUT that is not something for you to fear because there are two parts to that - of which you are only hearing one. The other piece that no one is mentioning is that you have no responsibility for her care. None.
You may need to start thinking about new living arrangements but you stay calm and be a person of few words in this.
“If you don’t choose to provide Gma with proper care, Mom, that is your choice. I think it would be foolish and unkind and irresponsible, but it is your choice. I can’t make your choices for you. I can only make mine. I will not provide care in this situation... the game has changed. If I need to move out, I will do so in a reasonable timeframe, but from this point forward, I will provide NO care in this matter. I will visit Gma and kiss her forehead and bring her flowers, but I will not be providing any kind of care.”
Do not get dragged into into an argument.
And please do check back on this site regularly as you navigate this... there is much wisdom and kindness here and people will help you firm up your resolve and give you tools to move forward in a healthy manner. It is hard to break free of old patterns, but I can hear that you are at a critical juncture. You can do this. You have much ahead of you... even if you have to get through some weeds first.
Then, get busy... doing anything but engaging with these people. You don’t have to be mean or snotty... just stay very even and do not explain yourself beyond the above. If they ask why you aren’t around and you feel you need to answer, a simple, “I have my own responsibilities and future to work on.”
I know part of it is being a bit...jaded? (Not sure if thats the right term, but its the closest I can think of) It felt odd for them to say "you have no authority decision wise, but if you refuse we will have you arrested" if she was still living here I could understand, because I would be leaving her helpless, but this is a real opportunity to get her more professional help, better than I could ever think of accomplishing.
Moving out is no issue, where I only have a few years of work history due to caregiving, I don't really have any possessions outside of my clothes and a sketchbook/ drawing supplies which all fit into a backpack, and my cat (my tiny soul mate). One of the few friends I have who knows everything that is going on (bless his heart, he deserves a metal) has offered to let me stay with him while I start work, and can either stay permanently after or move into my own place when I feel ready.
Thank you for easing my mind some on the subject, and making me feel less selfish about my own needs.
If you can, leave. Go to a friend. Stay in a women's shelter. But get out.
Do you gave a job? Get one. The only way you will get others to provide care for grandma is if you are not physically there.
They haven't given any soind reasoning outside of "you know this is what she would have wanted, she wants to pass in her own home! How can tou be so selfish and lazy as to turn your back on her when she needs you the most?!?!"
Yes, you do have a say in this case. You are not an indentured servant, you do have rights. Honestly, I can't believe a couple of Elder Law Attorneys would say you do not have rights.
You can try to saying "no" about taking Grandmother back home from Rehab. Just tell the Case Worker you cannot do this anymore, that you are completely burnt out. Then it will be up to the case worker to contact your Mom and see whatever can be done.
Stats show that close to 40% of family caregivers die leaving behind the love one they were carrying. Then what? Tell your Mom that bit of information and see how she reacts. Talk to your primary doctor, explain the situation, get recommendations because you are now on the edge. Hopefully you have health insurance.
She has never offered to pay me, except for paying my car insurance where I wasn't able to work so that I could get to doctors apointments/ grocery shopping. I do get medicaid with a work exemption (caring for a family member fullfills the work requirement because it is documented by her PCP) so I will have that until I start working a "normal" job. Luckily my field is in high demand here, so even with the gap in employment, it shouldn't be difficult to find work.
I have spoken to my doctor about the situation, but as she said "there is no pill to cure stress"
I think part of the mindset of pushing this on me stem from the simple fact of, they always have. And now that I'm getting older and seeing more and learning more about myself, and pushing back, they don't know how to handle it. I've honestly enjoyed the time I've had with all of my family members, and have never minded caring for them, but it is reaching a point that I feel like there is a huge safety concern.
I use to say "no" to prescription drugs, nope, no way, nada. I was so stressed out I would wake up shaking like a leaf. This continued on even after my very elderly parents had passed on. I could kick myself for not accepting a prescription to help calm myself while helping my parents.... this med gave me the "whatever" feeling, so small things now don't bother me :)
Exercise is another good thing to help with stress, the only problem is finding time to do it, and to do it correctly. For me, I just became too lazy to bother. Walking is always good, but you would need to find someone to watch Grandmother.
I love walking, and more so hiking. We live in a large trailer park and up until recently cause use the "I need to walk up to check the mail" and just look the long way around. Most of any respite time I've had (before the dementia got bad, or the rare occasion when another relative was in town to keep her busy) I've spent hiking the nature trails near by.
NO ONE else is going to look out for YOU. Be strong.
Say goodbye to grandma temporarily, telling her you will see her when she is settled in a safe place with caregivers. That you will find her, so do her best to get well in rehab.
You may be dealing with narcissists who want to hurt you and do not care at all about you. Don't know really, but make sure you are very clear that you have quit, said no, and no further discussion. This ends now. Make sure that you are not waffling, unclear, or amenable to manipulation. If your Mom is the problem, cut off communication after saying NO.
You just don't need this anymore in your life, imo.
You have paid any dues already, big time.
Go now, have a better life. The withdrawal pangs will be hard, but you are OKAY!
Medicare pays for 20 days 100%. 21 to 100 days 50%. With a secondary she may have to pay out of pocket. Maybe about $150 a day. If Gma doesn't have money, they can get Medicaid to put her in LTC. 20 days does not sound long enough in rehab for a stroke victim. Does Gma have money that the POA is trying not to spend so its there for when Gma passes?
Its time to speak up. You are not equipped to take care of someone 24/7. You are entitled to have a life. And they are not fair asking you to take on that responsibility. This may cause problems between u and family but you can't do it.
Best of luck!!
Move out now while your grandmother is still an inpatient. Then, stop answering telephone calls from the hospital and your mother and let your mother deal with the hospital social worker.
The hospital will not dump your grandmother at home alone. If your mother abandons your grandmother, the hospital will make arrangements that are safe. You need to remove yourself from the equation because, right now, everybody is taking advantage of you.
I won't give your useless mom your forwarding address, her lifestyle will catch up to her again and she will try to guilt you into taking care of her. Nope! It is time for you.
You are obviously a wise and caring young lady. God bless you for everything that you have provided for your loved ones. That you can see the situation is no longer sustainable puts you ahead of many caregivers twice your age. You will go far in life.
Stay strong, stay determined and stay away from users! Hugs!
You are the patsy
of course medical professionals will tell you to do it. You are saving the tax payer dollar
Tell hospital to send her to your mother and flatly refuse to have her back
She can be made a ward of the state
Do not feel guilty, your grandmother has been lucky for having you
GET ON WITH YOUR LIFE
" The issue is, her daughter (my mother) has POA, and (with the doctors backing her up) has basically told me "oh, you'll do great! You always have."
Your mother says this so she can continue her non-involvement. The doctors backing her up is because it's always easier if the patient goes home -- less work for the facility.
Have you spoken to a social worker? Put your refusal to be the caregiver in writing, as has been suggested below in previous responses.
It might help to realize that trying to guilt people into elder caregiving is very common, and it is done at the hospitals/rehabs all the time. Everyone wants to make YOU feel bad because they don't want to work to find a placement for your grandmother. Because you are young, they think it will be even easier to take advantage of you.
But now you know what to do, thanks to the wonderful help here given by experienced posters. Please keep us updated!
I honestly wish I could thank everyone who responded individually, but I wouldn't know what to say except thank you a million times over. I was crying yesterday reading everyone's replies, and felt a glimmer of freedom for the first time in so many years. Everyone's advice and strength gave me hope.
I called a family friend who is a notery, and explained the situation. With their help I drafted, and had noterized, several dated copies of a letter stating that I was no longer physically or mentally capable of caring for my grandma. That I felt, with the dramatic change in her health, it was a very unsafe situation, and that releasing her back to her home, would be very dangerous as she would be there alone.
Luckily the laws here provide me some protection (because I have lived there for more than 2 years) and I added that I would be moved out within 3 weeks. This allows me to at least have several applications/interviews lined up, if not a job by the time I leave.
I gave one copy to my mother (suprised pikachu face meme), one to the hospital my grandma is currently in, and one to the facility they were originallu going to send her to. I also kept a copy for myself, along with 1 extra copy incase it is needed later for a different facility/ lawyer (yes even after all this the threats of neglect contenue)
The ensuing chaos has admittedly given me some form of grim satisfaction, as the facility they were originally going to send her to was short term only, and cannot accept her without a home care plan. The hospital is now forced to look into other options, and has already contacted my mother about medicaid, assests, ect.
I know one person asked about assests as well, wondering if maybe my mother was after some of her belongings/ money. I can honestly say she has next to nothing. She gets around $1000 a month in social security, no other retirement fund, and a mobile home as old as I am that has fallen into disrepair over the years (nothing unsafe/ unsanitary, just normal old trailer wear/ tear) she does have a life insurance policy, with me as sole beneficiary, but does not come to full term until next year (I have already checked with them and one of the conditions of her policy is that if she is placed in LTC, it is considered paid) and from what I was told, cannot be taken by medicaid because it is not "real or personal property"
I stayed with the friend I will be living with, and had a long discussion with him and his family. We have been close for almost 10 years, and his family is amazing to me. His dad is happy that I will be staying, and joked that I could live there for the rest of my life, in exchange for one homecooked meal a week. (he and his dad both work with heavy machinery/ mobile cranes and work insane hours, mostly living off fast food/ microwavables.) They are setting up two/ three rooms for me, a bedroom, plus a spare room for an office/ art room/ ect of my choosing, connected by a bathroom inbetween them.
I am overwelmed by everyone's kindness and advice. I know I still have a long road ahead, both in looking for a job and moving, as well as re-learning many social skills and reforming a support system. I hope that over time I can move past this, that my grandma will forgive me, and that I can learn to live normally, away from the entitled, hectic world I have known for so long.
Thank you again so much for all of your love and advice, and I will update again when I am able/ if something new happens.
Stay strong and know that you are doing the best thing for grandma and you.
🤗Hugs!🤗
I am soooooo happy that you have been given the gift of a safe home and for home cooked meals. Imagine if you fixed lunches, you would be their goddess!😀
Hopefully the fallout from your Mom can be waved aside by just saying "whatever", and for you to continue to think this is in Grandmother's best interest so she can get the around the clock care from professional caregivers.
I am SO HAPPY for you and frankly, proud of you, girl! Just reading your updates, the wise action you have taken, the people who care about you... just wow. You are going to be just fine:)
Grandma has nothing to forgive you for... thank you maybe, but not forgive. My grandparents were an integral part of raising me too. At the end, after I had cared for her for a year, turned on me, and I had to step back the way you are. I was very young, only 19. I knew nothing about dementia and the weird workings of the broken brain. All I knew is that she had been like a mother to me, my rock, and that relationship flipped quickly and painfully. At the end, I know she felt like I deserted her, even though I would still visit.
I had to come to terms with that and look at it logically, rather than emotionally. I KNEW she loved me... I KNEW she had always wanted a better life for me that she had and always wanted what was best for me. Being her broken brain’s punching bag was not best for me and stood directly in the path of me having any kind of healthy life. I had to look at it from that perspective.
I also had to realize that I couldn’t fix her. After being in this forum for a couple of years, I think that is one of the hardest realizations for a caregiver to come to. Aging is hard. Very, very hard. And we are so used to having control over our lives. But some realities can’t be fixed. They can be mitigated. You can love people through them. But we are not the Master of the universe... sometimes we have to lay it down.
And some people are conditioned to guilt because that is the tool others use to maintain their own control. Your mother’s/family’s need for control is their issue, not yours. Although it will take time to reshape yourself and your life, you can lay that down as well.
You are doing an excellent job of both already. Come back here anytime you feel your resolve crumbling... this bunch is obviously rooting for you:)
Some days will feel like a breeze and others will be remarkably hard... but I have a feeling that you will stay the course. I will check back on this thread to see how things are progressing.
This is a big step for you. Love that you know u need some counseling.
So glad you found a place to go. A place to land at the end of the day.
Your Gma will be fine. There are now people involved. I am so happy for you. Come back with updates.
Just read all this in one quick scan!
GOOD FOR YOU GIRL!!!!!!!!!!!!!
So many people get stuck in the role of 'caregiver' because they simply don't KNOW how to get out. You did!! Hurray for you.
And tell your mother to grow up. I have zero tolerance for parents who don't PARENT and then lay guilt on the kids for not 'doing better' or whatever.
Good luck with the future. You have proven yourself tough and strong.
And BTW, nobody can go after you for abandonment of an elder--they's go after your mother first, and honestly, those cases never really see the light of day. I swear they are just used as threats.
{{Hugs!!!}}
I will disagree STRONGLY with YOUR COMMENT that YOU are being selfISH. You are rather being self aware, self concerned, and self caring.
CONGRATULATIONS ON YOUR AMAZING SELF EMANCIPATION!!!!!
We should have an AC Hall of Fame for those caregiver's needing out who made it in time!
I noticed, on AC, some posters are supported through their caregiving, and others are advised to leave and get a life. It is not random, it is not by accident, it is maybe a miracle of loving others. Plus that, the OP listened and was strong!
Congrats!