Context. My grandmother was diagnosed with schizophrenia and dementia early in my teenage years. My mother took me out of school to homeschool me because my grandmother has a aggressive personality, doesn't recognize anyone and she needs constant care and supervision. I am now in my 20's, I have been my grandmother's primary caregiver because my mother works and is only home on weekends.
I feel like I'm not doing well and I'm snapping at them more and more, getting angry and crying all the time. I don't have the space or ability to go anywhere to unwind.
Has anyone been in a similar situation? How did you cope? We're not in the US so don't recommend any help services, I'm just looking for advice, not organizations. Thanks a lot.
So with that being said I'm not entirely sure what to say. Is there anyway to talk to your family about getting some time for yourself. Even some time to take a walk. Explain to them that you really need this. I'm wondering if your family belongs to a church, maybe you can tell them you need some to to pray, meditate,
One other thing that helps some people is more understanding of what exactly dementia feels like and learning about dementia helps to feel more empathy towards them and helps with patients.
I hope that was helpful, if you can let us no more about your situation, life and where you live
This must be horribly hard, and you just want to live your life in sure, so sorry
No hospice in our town accepts aggressive patients, and they are very expensive, so I decided to leave the location out of the post. And for the privacy reasons :)
You should be either continuing your education at this point in your life or working a full-time job yourself outside your home.
So of course you're burned out. Caregiving for someone is very hard for anyone, especially 24/7.
You MUST figure out ways to get away from your very unhealthy situation, even if it's just to take a walk around your neighborhood, or going to lunch with your friends on occasion, or to church on Sunday.
All caregivers need some kind of respite if they are to continue on, and if they don't get it the stress alone will cause all kinds of physical and mental health issues, so please have a talk with your mother and let her know that number 1, her mother is not your responsibility and number 2, that you are really struggling with having to care for her mother, and it is causing you great stress.
There has to be a better solution for your grandmothers care than you, and your mother needs to be the one to figure out what exactly that is.
I understand how difficult this situation is for her and that she feels guilt and grief, unable to leave her mom and that she has no one but me. For me it means no life outside of being a caregiver. I haven't spoken to my peers in real life in about 6 years.
This whole situation is a new level of wrong . You should not be asking how to take care of this , you should be asking how to run away !!
Have you even graduated from high school? It’s deplorable that your mother robbed you of all these years of a normal childhood all the way now into your twenties . I can’t see how you could have any friends being trapped for years at home . Your mother should be put in jail for making a child an underaged caregiver , servant . You are a slave and should be freed from this .
Your mother has you dependent on her , just like a kidnapped child who gets stuck confined with their captor into adulthood , not knowing how to get out of the situation .
You even come right out and say not to suggest any organizations , because you are a brainwashed kidnapped person . Brainwashed that this is your station in life. It’s NOT. Grandma is not your responsibility.
Brainwashed kidnapped people have been known to be out in the community and still don’t ask for help or go to any agencies or organizations or police stations to be freed. This is where you are , stuck thinking you have to stay in this situation. It’s not normal to say please don’t tell me of any services or organizations that would help you.
Your mother is as sick as your grandmother is. Get out. Leave , don’t tell her where you are going. That is my advice to you.
The kidnapping analogy is pretty accurate, indeed.
I would be happy to just leave, but we are in another country (my grandmother has citizenship) I don't even have a piece of paper that I graduated from high school (and I didn't graduate, I need to be in my country to do that). It's impossible for me, even if I by some miracle get the money for a ticket to my country, I will remain homeless as I have no other relatives.
There is a reason why someone stays in this nightmare. I keep doing it because I have nowhere else to go, and I know that I'll probably die if I become homeless.
Edit: I want to add that I appreciate the truthful answer, don't get me wrong. I'm just very scared and don't know what to do, not ready to jump headfirst into the unknown.
Short term, just disappear the minute mom gets home from work, or on the weekends. I suggest volunteering at a pet shelter or a place with volunteers mostly your age who are female so you learn how to interact with people your age. Or get a weekend job. Avoid romantic entanglements.
I very much agree with Peggy Sue that the military may give you a real option for saving your life. It will
A) remove you from the situation, and preclude your mother's getting her hands on you.
B) Keep you removed and protected while providing you with an education and opening you to the world at large while providing you with education and skills that will foster independence.
C) During your years of service give you a good way of staying out of your captor's reach while at the same time giving you direction and protection while you raise your head up and look around at the world.
D) Provide you with solid community, guidance, healthcare and therapy.
I ordinarily would not recommend the military to most people. In this unique instance I think it could be a "godsend".
The very thought of a mother who would do to her child what your mother has done to you is--to me--horrifying. I wish you the very best and a safe escape. You have mentioned that you have no certificate of graduation from school and are "in another country". I can only say reach out to the military in that country. Your lack of any graduating certificate has not prevented your being one of the most articulate and well-spoken correspondents on this site; you will be accepted and you will receive the education required, would be my guess.
You ALSO, due to the caregiving you have done are a very qualified care-giver. It would be my guess that you would be hired in any caregiving facility in any country just about on the spot, and from there friends would help you.
You say that this grandmother is 78. Well, one way to look at it is that she has twenty more years left to her. You would be what then? About 40, without education, and with a mother who will be glad to replace your grandmother in all her neediness.
You would be better in a homeless shelter than staring down the barrel of the life they have designated for you, I am thinking, especially--as I said--given your exceptional articulate and communicative skillset.
Edit: I write like this using a translator, if anything. I understand English, but my grammar is not the best and I can't write in English without it. My native language skills at the middle school level at best.
I didn't know this information, thank you very much. I will try to look in that direction and search for all possible information about it. The army here is terrible judging by the talk of the recruits, but maybe my skills as a caregiver could be very useful in finding a job.
Edit 2: My earlier responses are based on the fact that I didn't know that it was possible for foreign citizens to join another country's army. Sorry for misunderstanding :)
Your mother won’t even let you go out for a walk.
Tell her you need a break and just leave , go for a walk . What is she going to do about it ? Threaten to kick you out? I think not . Mom needs you there to watch grandma .
Please find a way to disentangle yourself. From what you write your mother appears not to care one iota about you. You are only free labor .
You've acknowledged that you are in a situation dangerous to your ongoing mental and physical health. You can't help your grandmother if your own health is failing. Although more is needed than weekend/evening outings, those may be opportunities to engage with others who may show you possibilities that won't leave you damaged or disillusioned.
And what about grandma, is her behaviour out of frustration and boredom? If not, are there medications that can calm her? Would SHE like to go out for a walk? Would it be safe? What does her doctor recommend?
The other thing I would do is utilize social media to fundraise for yourself through gofundme. Pretty much everyone here has heard or lived a million caregiver horror stories, but yours truly is a horror story.
I didn't really think my situation was bad, just unpleasant and "could be worse". So seeing so many comments from people with more experience and older than me about how wrong this situation is feels oddly supportive and validating.
If you're in some third-world country and also a citizen of one then no, there's not a lot of options for you.
You obviously have access to the internet and are computer literate, so you should really contact the state department of whatever country is listed on your passport. You can also get some online work too. At least that would mean some money and options for you.
In the meantime, you don't have to take abuse from your grandmother. How dependent is she? If she's too aggressive for a care facility to take her, there needs to be some safety measures taken to keep not just her safe, but you as well.
Get medication to keep her calm. Put a lock on her bedroom door. When she's getting to crazy to handle, lock her in until she quiets down.
Or, you might be doing yourself a favor to let her wander off. Then call the police and let them handle it. If she's as out of it as you say, she'll get put in a secured, locked facility.
I have a very specific situation, I can't put all the context on the forum as I would be easily identifiable by this information, it's not safe. I swear that this is true, but I can't provide proof, I'm sorry. It's entirely in your right to doubt it.
As you told burnt, that you where look for advice on how to handle this. You honestly really can't without breaks. Every human needs relief from caregiving and you have been doing this for years. We would all love to see you get out of this situation, but until then you have to have breaks!!
It sounds like you moved to the country you are in to take care for your grandma, am I correct?
I understand you don't want to share everything, but please stick with us. And maybe you will trust us more. Keep us posted on how things are going so we can help you if we can.
Otherwise you are a slave.
Snapping at them is a normal and predictable outcome if you don’t do what I said in the first sentence.
You either establish boundaries and what you are willing to do, or you don’t and you die young. It’s your choice. (Unless it’s not your choice, in which case we are back to you are a slave)
Taking care of my Mom, mom, dishes,laundry, bills $ making out checks, taking care of her medication ,calling her Dr for Refills and then calling the pharmacy,groceries ,ordering supplies, and having cash here at home to pay our three Nurse/Housekeepers!.....Ohh, and taking care of our 16-1/2 yr old cat Spunky. I have to find time for me, and it aint easy! As far as giving you any answers then just letting you know that you're not alone!...I'm in N Arizona . God bless you!
Every night I felt exhausted and when problems happened and messes needed to be cleaned up I lost sleep and he lost calories. I was way past burnout by 2020. So how did I cope? As my situation got more complex I split myself in 2.
There was robot John who was devoted to every task on the list he had to complete. Then there was human John. Robot john had the priority.
To strengthen your robot side write down the tasks you need to do each day for your Gma. Focus on that work. It likely doesn't require much communication, though singing helps the mind. If you are snapping at them & growing angry it's because problems are happening. Separate the event from the person. Write down the events & think of ways to resolve them as gently as possible.
Your Gma's mind is fragile. Snapping & anger do not help. Singing does.
Try to think of songs that express your feelings at that time and share that with her. She should be taking Donepezil before sleep & Memantine when she wakes.
Ex. Your Gma keeps knocking over something causing a spill. Move it out of her line of sight. If she has busy hands give her something safe to squeeze and use a short cord to attach it to her waist. She can't throw it then and she can't hurt herself with it.
Help from social services where you live can be daunting. Think of any one you get as someone who can do some of the tasks you do now. In my case it amounted to my/her PCP writing a Rx for a caregiver roughly between 9-5 M-F.
A few hrs on Sat was paid out of pocket. Any task you don't have to do is time you can spend resting on a heating pad. Your lower back will thank you for it.
Most of all do not expect doctors to even recommend these things for you. You have to be pro-active on your own for it. If your Gma has any form of health insurance then it's likely there is a part about caregiver services. You must know that to the letter and make use of it as best you can. The same goes for your Mom's insurance too.
I hope your Mom assumes the caregiver role on the weekends. It was the opposite for me. I got a caregiver for a few hrs on Sat and that was it.
Stress to her the importance of her giving you a break on your caregiving tasks.
My 4 siblings were mostly un-responsive to my pleas for help. Emotionally that's worse than no, because they don't even bother to offer an excuse as to why.
I hope your Mom is very responsive to you on the weekends.
If she can't help with the caregiving tasks more than be direct with her.
You need her to buy you some caregiver hours each week.
Do your homework on this first. Contact service providers and ask what is the least amount of hours per week or day you can get from them. Approach your Mom with that cost.
As for your schooling, please try to keep up with it. Homeschooling is fine as long as your keep up with standardized testing. You need some means to evaluate what you're learning.
I've been through a lot these past 5 years so feel free to list any of your problems here & I will try to offer suggestions for resolutions.
Above all, I am just a stranger to you but we have a caregiving bond. I will pray that things get better for you. Sometimes just having a place to vent can a help a lot. Feel free to do that. You will always get gratitude and encouragement from me when you do. God Bless you.
While Gma sleeps you can watch her from your phone app. They even have apps to do the monitoring for you and alert you if the movement is too large.
Mild forms of sedation should pose no risk to her mental health and may even aid Donepezil and Memantine. Discuss with your local pharmacist what is best in your price range.
There's more opportunity for you to gain alone time in another room.
With the mini-cam in place, try to get Gma to watch TV from a bubble wrapped phone. Say the TV is not working. This now requires her to hold the phone.
That should induce enough fatigue in her to tire her out quicker. I get that your Mom is only there on Sat & Sun. What about calling you? Try to get her to call more often and talk to Gma. The more time Gma is engaged with someone or something, the more time you have to yourself and monitoring her via the mini-cam.
Still, Gma might throw a tantrum. Surround her with sturdy, empty cardboard boxes. It will confuse her and slow her movement if she should try to get up.
That gives you the time you need to get there before she does.
If Gma is prone to throwing a bubble wrapped phone consider a fastener.
They don't cost much and you then cord it to a belt on her waist.
Most importantly don't trap yourself with "constant care." Define that as tasks that you must do every day for her and time spent mostly watching her. Use the mini-cam to isolate her more. She is likely to nod off faster then. Do not let her nod off in a chair. That can bring on stiffness and pain. When she nods off, comfortably lead her to bed for proper sleep.
'Don't set yourself on fire to keep others warm'. I think it's a Hindu saying.
Your Mother may be doing just that. Setting both her & you on fire (so to speak) to keep Grandmother warm.
Find a good time, when she is relaxed is better.
Sit your Mother down & have an ADULT to ADULT talk.
Spell out the reality with kindness but honesty.
1. That the currect plan is not working
2. That a NEW plan is needed.
That any plan needs to work for ALL the people in the plan to be sucessfull. It must allow ALL of you in the plan to get your needs met.
What needs do you have?
* The rights of freedom.
* The dignity to work, earn a living for yourself.
* The opportunity to become independant & all that goes with that.. socialising, a partner, maybe marriage & your own children.
This issue needs to be put on the table as OPEN for discussion. OPEN to new ideas, to new solutions. Open to CHANGE.
Hopefully your Mother hears you. Then, that you begin to work together towards new solutions.
If not, your alternative is to QUIT.
(Which will FORCE your Mom to make changes).
You DO have power here.
It starts with speaking up for yourself.
Recently my mother offered to pay me for caregiving for grandma and that was the end of the conversation. I don't know if she's serious or not, I'm waiting for the payday, if she's serious it's at least something, I guess??
I wondering about lewy body dementia? It may not really matter, the care would probably be the same. But it may help you to learn more about dementia in general. Sence you do have Internet access and have fluent English, I would suggest go to Google and learn as much about dementia as you can. You could go to YouTube and Google Teepa Snow.
The symptoms of late dementia and schizophrenia are very similar and we are not sure if schizophrenia is diagnosed correctly, but at least medication helps it, she's more calm and not hallucinating.
https://www.aupair.com/en/p-au-pair-for-seniors.php
How dare you try to guilt trip the OP with the 'grandmother won't be around forever' BS? That's disgusting and you should be ashamed of yourself. I've got news for you. You won't be around forever. Neither will I and neither will any other living thing on earth. That is a fact of life, or should I say the ULTIMATE FACT (I believe DEATH would speak in all capitals like in a Terry Pratchett novel). No one controls this and guilt can't stop it.
Have you ever lived in an abusive situation where you were dependent on your abuser?
If you haven't then you really shouldn't have anything to say because you aren't offering her any real or useful advice.
Telling her to pray isn't going to get her out of the abusive situation she's living in.
Doing whatever she has to without guilt or shame to get away from it will help her. A bit of encouragement also never hurts.
I say it’s now the daughter’s turn to get to leave this and go to work and the Mom stays home with the worse job of caregiving this difficult elderly woman
We have no clue, the life they have lived, the government, the laws, or the customs.
It's just way above my head anyways to form any opion on.
My son went to Burma, you can't show the soles of your feet. In Russia they leave babies out to sleep ,in the dead of winter. In Sweden they leave babies outside of the restaurant in strollers.
We don't know what there tradition are.
Yes it sounds utterly horrible, but so does wearing a burka. Or forced marriage, or getting female circumcised
I now have more free time in the day than I used to. My mother has actually taken over the cleaning duties on the weekends because I talked about it nonstop, so that has helped a lot. No progress with the other problems, but at least I feel more at peace with my grandmother as I have time to relax (and I have time for hobbies when I have the energy.) Thanks everyone for the replies and help.
You are fine to post updates on this thread , as often as you like .