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.
You are going to kick it in the job interview.
Your grandmother sounds like a lovely lady. And your mom, well she can be mad, it's not going to change anything for you.
Great big hug!
You have made so much progress in such a short period of time.
Hold on to that conversation with your Grandma. I think you will find it helps as time goes on. When someone dear to you has those moments of lucidity, when they get to express the “real” them and how they feel deep down under the dementia, those moments are a great gift. They give you clarity on your own path... which sounds like it fits with Gma’s impact on your life in the past:)
It will also give you strength as you stay the course.
So many good wishes on the job. Whether it is this opportunity or another, I have a feeling you will be snapped up by an employer looking for a sharp, articulate person who is competent and dedicated.
WOOOOOO-HOOOOOO!
You're an inspiration. So's your Grams.
They also got the medicaid paperwork started, and said it normally takes about 45 days to kick in, but will back pay to the application date. Ive spent the last few days packing/ moving. My mother definately isn't happy about her sudden responsibility, but I honestly feel like the entire world has been lifted off of my back for the first time.
I have an interview for a job this Wednesday, and with a good set of skills and a few years of experience, I should have a pretty good chance. If hired, I would start at 14.50/hr, which around here is one of the higher pay grades for a non-degree job. (For context, average rent in my area is 200-400/mo. )
Thank you all so much again for your love and advice. I don't know if I could have mustered the courage to stand up for myself without it.
So, just say NO to your family and refuse to care for her - for both of your safety! You are correct that is unsafe to be expected to care for a partially paralyzed dementia patient. She needs to be in a nursing home at this point.
It appears that you are a female granddaughter. If the tables were turned and you were a MALE, do you believe that you would be "expected" to take care of your ailing grandmother? I think not.
I have been subject to the same harassment in times past and one person can't take care of a patient 24/7 like they are insinuating.
The only concern I have is in the original post you said "...be told the same thing, without POA, I have no say in her care." I would agree that you have no say in her care, but that is NOT the same as saying you are responsible for or can be appointed to be her caregiver. I don't care if it is your mother (POA manages medical and financial issues, but does NOT have the power to enslave you or even appoint you as the designated care-giver!), the doctors, the hospital staff and/or social worker - NONE of them has any business saying that YOU must care for her.
As for you leaving her home before she returns - how can that be neglect? She isn't even there to be neglected!! It isn't abuse either - you can't abuse or neglect someone who isn't there. Getting out prior to her return was the best plan. Having wonderful friends is better than family!
You also mentioned "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." I would ABSOLUTELY terminate this, effective at least the date you moved out, if not before. You have not been caring for her since she was hospitalized and since you won't be caring for her when they "discharge" her, then you need to terminate any payment. You can't wait until you have a normal job - they can come after you to pay back any payments made after you relinquished care duties.
Good luck in building a new life for yourself! Be sure to at least visit grandma now and then, wherever it is they end up placing her if you can - sounds like no one else will, she needs a familiar friendly face once in a while!
If there is no one at home things will change. If competant, your GM can refuse discharge & appeal to Medicaid Ombudsman that they want to discharge her into an unsafe environment.
I used to bring alcoholics to ER for admission to rehab. If we stayed, as soon as their blood alcohol dropped they would discharge to me..the ride provider...not admit. One time we took...with patients knowledge..their boots and left. Hard to justify discharging a person in mid-winter at 3am with no shoes. She got admitted.
This is an analogy bit it works. I had sudden onset kidney disease, level 3, & they were going to send me home on diuretics. I refused based on it being unsafe. I was so swollen I could barely move, much less rush to the bathroom in the middle of the night....plus my leg was in an orthopedic boot. The head ER doc was greatly relieved as he saw how sick I was. Based on what happened in the following week, I would have died had I gone home.
Our system wants to dump the seriously ill on anyone with a pulse because if they don't, they legally Must keep her until she is safe to go home alone and care for herself.
Follow your dreams, do what brings you joy and care for others only when it is your idea.
Aquacrush
Jul 17, 2019
Not sure how else to update, so I guess this is as good as any.
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.
Helpful Answer (33)
Tell them you are not doing this. You are the boss of your own life not the reverse. Stand firm and strong and do not budge.
Now, on the flip side of things.
IF you do not have a job and you're freeloading off of Grandma living there for free, snarfing her food and doing a bunch of nothing, you either need to get your SH*T together and help or get your SH*T together and leave.
I hope you are the former and not the ladder.
This will only happen if you let it. Now you go girl!
No ifs, ands or buts about it. We have free choice and can always say no.
I immediately contacted the hospital Social Worker and explained that my mom was not well herself, and could in no way care for her sister at the level of care that would be required. They needed to figure something else out if they planned to release her. My aunt never was released to my mom’s care as they had supposedly planned. She was still at the hospital becoming weaker and weaker, and she eventually died there. I don’t know how many days total she was hospitalized, but I do know that a person can say “no” in good conscience when asked to care for a loved one.
You’re the same age as my middle daughter. Never would I want her to care for her frail, dementia, brittle-diabetic grandma (who does deserve great care, better than what I or my daughter could provide)! Of course, I’m coming from a totally different background and mental capacity than your own mom (so sorry about her lack of love and care for you).
Get on with your life! As many posters have stated it, you will show your greatest love to your grandma by having her cared for by others. (It likely will not be care provided by your mom, and that’s good—even though she is POA.) You cannot be forced to provide care. Social services can get her placed. The hospital will work with this once they know there is no one at home to care for grandma.
Please let us know how you are. Hugs from a mom with a 27 year old daughter!