I love my Grandmother so much. She’s always been larger than life. These past few years, however, I have noticed a significant change. She asks the same questions hundreds of times a day, says the same ludicrous things hundreds of times a day, and gets very crabby because of her residual nerve pain. She acts like it’s my fault. As a result, I fully admit that I too have become a bit crabby. We still get along very well but there are tense moments. Lately, I have told her every, single, time she repeats something. She of course forgets instantaneously. So, the cycle continues. I know she has dementia, yet in the back of my mind I feel like if she tried a little harder she could remember. I know it’s crazy of me. I know it’s not her fault that she can’t remember. She can’t remember the name of her own children. She has two dead sons, one being my father, and a living daughter. Anyway, I don’t want to feel like I’m always fussing at her, but it feels like I am and it’s tearing me apart. I don’t like being irritated every waking moment of my life. I can barely leave the room to use the facilities without her calling my name in a panic because she was worried about me. I have no friends and I can’t go anywhere to do anything. I love my aunt but she does very little to help. I have no one to talk to. I can’t work. My aunt is too busy playing sports at the gym and going to ballroom dances every weekend. No, I cannot be paid to be her caretaker. In this state it is mandatory for the LO to be on Medicaid, she has too much money for that. I guess I’m just in a rut. Thanks for listening, everyone. PS: Talking to my aunt will is no good. I’ll just be out on my a**, homeless. She calls me a sissy because I don’t like football and guns, AND because I quit drinking. I’m somehow now a real man. Also, when she comes to help with the housework she is very angry the entire time. Calling me names, over and over again. Either I focus on her mother or I deep clean the house every day, I can’t do both. I’m so backed up on laundry I don’t know what to do. My closet looks like an episode of Hoarders. Ok, now I’m done, lol. Thanks, everyone!! :)
Her brain has sustained irreversible damage that cannot be treated.
YOU are young and write well and have a good brain. You MUST get out from under this.
Your situation will NOT change until you acknowledge your situation as NOT WORKING, for YOU or for YOUR GRANDMOTHER.
I gained 60 (SIXTY) pounds IN NINE MONTHS while taking care of my mother, lost a good job, and became a 24/7/365 recluse while doing what I thought I HAD TO DO or my mother would die.
Ultimately, the help I had hired to allow me to take a shower a couple times a week, walked out, giving me no notice.
I found a placement for her THAT DAY, in a VERY GOOD residence a couple minutes’ drive from my house, and she did die there , over 5 VERY HAPPY AND CONTENTED years later, at age 95.
She LOVED her caregivers, they loved her, and although I visited every day, I was able to get back to work and reclaim a piece of my life.
Your family WILL NOT HELP, and nothing will be different until you say “I can’t and I WON’T”.
You will find lots of caregivers here who KNOW the life you’re leading. We care. Think about what we say.
First of all - something I learned from this site - if she has dementia and she is following you around or panicking when you leave the room - she is likely doing something called "Shadowing" which is often part of dementia. There is a good article on Aging Care about how to cope with it.
https://www.agingcare.com/articles/shadowing-behavior-in-dementia-470434.htm
My grandmother does this frequently with my mom and it can be very difficult to deal with. They often zero in on one "favored" caregiver and no one else will do.
Additionally, as for the regression, even apart from the dementia - as we age our world often shrinks to just our own little world. our surroundings, our friends, our family and what we can control . But beyond that with diminished capacity or dementia - she's struggling to remember or even grasp concepts and thoughts that in her earlier years were just common place. Sometimes you have to think about it like this. A toddler is just learning to do things for themselves, they need help, guidance. They can't be alone because they don't have mastery and they need to have the concept repeated to fully learn it.
When someone is beginning to lose what they know - it's in reverse. They repeat things because they don't remember. They don't remember that they've already asked you that or told you that. They are losing the memory that they have the mastery of that skill, so the skill is gone. So in many ways they ARE child-like because the things they knew or learned are gone or going.
Here is the hard part. You mentioned that no one from your family is helping. They won't. YOU are giving them no reason to. YOU are their plan. You are already doing it. They have no reason to help. As long as you are the plan, they won't step in.
You will have to decide what YOUR plan is and then tell your family exactly what you are willing to do (or not do) and they will have to come up with the actual plan. Because as long as you are doing the work, they have no reason to step in and provide any other option. You ARE the option.
In your profile, you mention that you are 40 years old yourself. And if I'm understanding correctly you are unable to work because you are providing full time care for your grandmother. This is PRIME TIME for you to be working and saving for your own retirement. What is the plan for YOUR future? As much as you love your grandmother, you cannot get this time back for your future either. While the rest of your family is enjoying their free time on your good will. Are they going to fund your retirement? It is not selfish to consider yourself, it is prudent.
You ate enabling your Aunt to save HER inheritance. She is manipulating you through Fear, Obligation and Guilt.
Give notice. Leave. Get another job.
"In this state it is mandatory for the LO to be on Medicaid, she has too much money for that."
There is no law that says a person needs to on Medicaid to be in Longterm care. What is done, is the person uses their assets to Privately Pay for their care. When the assets are almost gone, Medicaid is then applied for. If grandmoms monthly income of SS and pension are over the income allowed cap, there is a Miller/QI Trust that can be set up for the overage. Lets say the cap is 2k and grandmom brings in 2500, the overage of $500 goes to the trust which reverts back to Medicaid upon Grandmoms passing.
There are laws that cover aides who live-in. They cannot be charged for room and board, its a perk of the job. They are paid an hourly wage which needs to be at least minimum wage. Like any job they work 40hrs a week. Another aide has to be hired to be there when they have time off.
I agree, Aunt is trying to save her inheritance by you doing caregiving for free. She needs to pay you. Having room and board free is not payment. You are 40 you need to get that credit for Social Security. Your future is important.
It may well be that your aunt, along with many deluded families who crop up here from time to time offering "free room and board" in exchange for 24/7 care, and who *genuinely* appear not to understand what is wrong with this deal, believes that you have it easy. All expenses paid, and all you have to do is be there.
Sigh. Deep sigh.
If your aunt can be left to cope with the repetitive questioning for just one morning, she might possibly gain a scintilla of insight. Or she might not.
But in any case, she definitely needs a reality check. Probably without any intention or realization, she is subjecting her ?nephew? to slave labour with no end in sight.
Can you not work only because you're trapped in caregiving, or are there other reasons too?
Your grandma has dementia. Do some reading about it. Try not to get annoyed when she doesn't remember something. My mom's short term memory is SHOT. Same questions over and over and does not usually retain the answer. That's the way it is, so just let it wash over you. I have a notepad to write the answers down on so she can refer to it.
Your grandma's nerve pain that makes her crabby - is her doctor aware of this and is she on any pain meds for it? If so, it appears to not be enough and this should be addressed.
If she is calling for you in a panic when you just step away to use the bathroom, this also needs to be addressed. Talk to her doctor. Maybe she has anxiety or something that can be treated to make her more relaxed and a little happier.
You also need some paid help around there. Someone to spend some time with her because you can't do it all. Not possible. I'd tell Auntie that you need help and will no longer be providing 24/7 free care for grandma.
You need to start pursing part of your own life and career again. At 40, you should not be giving up so much. You can still help out but do it on your terms.
If Auntie will throw you out if you stand up to her - so be it. Good luck to her to find someone to fill your role. It will be nearly impossible.
Good luck.
The second step is to start investigating a job. It won’t sound like a real possibility until you can see it as real. Even looking at job ads is a good start, and this is still a good time to be looking.
The third step is to look at Assisted Living or (possibly) Senior Living options for your grandmother. When (not if) you are ready to move out, you aunt won’t have done her homework and may opt for the easiest and cheapest available. You will be helping your GM if you do the homework, and perhaps take her there for lunch a couple of times. You can put her on the wait list – if her name comes up, no-one has to accept it automatically, but it can be good to have some priority.
Remember that ‘every journey starts with a foot step’. Good luck!
My gosh, she’s 92! Of course she’s walking like an old lady! Anyway, I get nothing. I’m 43, and I feel hopeless. My life is nothing but a ball of despair.
It sounds like auntie is using/abusing you as an indentured servant caregiver in a very heartbreaking situation. You can save yourself. Finding employment for yourself outside the home will not only start the process of breaking free but also be a respite socially. Save your money and start looking for your own place now. Reach out to those friends for ideas. With this goal on the horizon, your days will no longer feel like a never ending bottomless pit. Once you have your own place secured, give your notice to auntie. Move on to YOUR life, that you have control over. She will squawk, but so be it. Don’t engage as that’s what abusive people thrive on. Keep going. She cannot force you to stay.
Better days will come and they’re out there. Go get them.
Then, when you come back, tell your aunt you will not do this for free. Period. Either she pays you a living wage from Gran's money, or she finds a fulltime caregiver who's not related. IN ADDITION TO THAT, she has to hire an aide to help with housework. Otherwise, you're out. Tell your aunt this is how it is, PERIOD. You don't need to make her be sympathetic...that sounds impossible. You simply need to tell her these are the conditions, and otherwise, buh-bye.
Your grandmother sounds like she's eligible for hospice, which every insurance company covers, especially Medicare. You can ask for a consult without your aunt's approval. Part of hospice care is respite, home aides, volunteers, counseling for everyone involved, nursing care and home health aides. All you have to do is call your local hospital and request a consultation.
You have options, sweetheart. You can't risk your sobriety and mental health by caring for your gran under the current situation. T
My God, she’s 92, underweight, and frail! She has osteoarthritis, residual nerve pain, and a fracture in her L3. I’d walk hunched over too! I can’t tell her this of course. I’ll be out on my rear end. I’m 43 years old, broke, no social life at all. At least this way I’ve got somewhere to live and food to eat.
I agree with Teethgrinder, take a break , a couple of days, get a hotel if you can manage.. Then have the sit down. Do the hospice thing.. was grandpa a vet ? If so, grandma may have aide and attendance benefits, call your county VA office . Aunt will need to apply but, on application date, benefits are retroactive..
you need to look out for yourself , Time to get a job.
OF COURSE IT IS!! If she can keep her there until she passes - SHE GETS IT ALL. She doesn't have to sell her inheritance to fund her mother's care. And she is doing it all at your expense. And the total expense of YOUR FUTURE!
All due respect....this is your wakeup call. I know you love your grandmother. And YOU have my respect. But you my friend are being completely taken advantage of and robbed. Your aunt is sitting over there, getting her nails done, laughing all the way to the bank...not to be too harsh. While you are the one doing the work.
You are the plan. She is literally funding her own retirement and future on your back. She is NOT going to do a single thing because she is using you to do it. And you aren't going to come out of this with anything but an empty pocket and nothing to show for it.
It is admirable but it is pure folly to sacrifice yourself like this because there ARE other options. Here is the thing. NO ONE IS LOOKING FOR THEM. Why would they? Until you make a move to protect yourself...they are going to keep doing what they have always done.
Step 1. Find a job and an apartment and make a plan to move out.
Step 2. Notify your aunt of your move out date and tell her that you will be leaving and that she has X amount of days to either find a place for Grandmother or she will have to take over your responsibilities until she can.
Step 3. DO IT.
This does not mean you don't love your grandmother. This means that you have other priorities and don't have the bandwidth to continue to support this one sided plan that your family is not also supporting. THEY need to step up and find a way to help their own mother. And if they decide to step in and take care of her themselves so be it. But I fully expect that when THEY are the ones responsible...it will suddenly be possible for them to find a nice place for your grandmother to live.