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Old 01-08-2009, 10:55 AM   #1
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22 year old caretaker... needs advice!!

hello, my name is jessica, I am 22 years old and i take care of my 71 year old grandmother. I have been doing so for about a year but have only recently moved in. She has dimentia...on top of a fiesty personality she had before. She has deteriorated so fast, I can barely keep up. I am in a bit of a rut. I am only 22...and I still enjoy going out with friends and enjoying my youth but everytime I leave, she runs about the house screaming that she will throw my belongings in the trash(this is her old personality peeking through). I really want to be there for her and make sure she has a comfortable life, but I still don't want to lose being 22. I am not an irresposible person in any way shape or form...when i say i want to go out, its like once in a 2 week period. Should i just ignore her when I come home or should i just move out...no one else will take care of her...except my mother and she works full-time. i'm even scared to go back to school...she'll flip out if she sees me leaving every day and not taking her with me. grr...I just don't know...AND she has episodes at 2 and 3 o'clock in the morning, everynight, so i barely sleep. Last night at about 2:00am I awoke to pounding on the basement door (I live in the basement) and the surrounding walls and her screaming my name throughout the house. I came upstairs and asked her what the matter was and she said that I couldn't live there anymore because I was using her bathroom and it is HER bathroom and she couldnt get into it, let me remind you it is 2:00 in the morning and I was sound asleep...So i calmly told her that I live here and I was sleeping, so I couldn't have been in her bathroom...then she starts talking about seeing four black horses in her bedroom...and this just freaked me out...so i tucked her back in and went downstairs and back to sleep. about and hour and a half later I heard someone running up and down the stairs, like pounding all over the house. so i went upstairs and there was grandma, sitting in the chair, and one of the ladies that we take care of (we have an in-home elderly care facility (only 2 women)) who is mentally disabled was holding her leg in the air saying she has a 'boo-boo'. I was half asleep so i asked "where?" and the woman immediatly pulled my grandmothers leg into the air, sending her reeling backwards. needless to say it was a stressful night and my eyes burn due to lack of sleep....haha my question actually turned into a rant...sorry...

 
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Old 01-08-2009, 11:50 AM   #2
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Re: 22 year old caretaker...needs advice!!

Dear Justhope

YOU my dear, can not do this nor should you. I hate it when some people feel that the grandchildren were born to take care of the parents, parent.

YOU have a life to live and you should have a chance to do so. Your grandmother did and so did your mother. I know you say your mother works, therefore, it should be that there is no one to care for your grandmother and some other action is needed Either, a nursing home or a full-time, live-in caretaker.

YOU should move out and not because I'm being nasty, its just that you being there is enabling the other relatives; aunts, cousins, mother, etc from actually knowing and dealing with stuff.

I refuse to let my children be involved in my mother's situation although its tempting. I yell at my cousin whose two children live with her mother but her mother isn't suffering from dementia like mine is.

Your grandmother is suffering from sundowning that occurs towards nighttime. She needs a sediative that will allow sleep for long periods.

And before you do move out, you are in a position where you can't go out eve to school. When left alone a lot of bad things can and do happen. Stove use can burn pots, food, cause fires, etc. If something happens, would she know to call 911??? She could also leave the house, lose her way and not be found.

I'm telling you truthfully, what you describe is a dire situation that needs to be addressed IMMEDIATELY

 
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Old 01-08-2009, 11:54 AM   #3
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Re: 22 year old caretaker...needs advice!!

your mother needs to get involved and figure out how to take care of her mother.......it's nice that you're helping, but it's not your responsibility, it's your mothers. if she can't do it because she works full time, she will need to make other arrangements......

 
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Old 01-08-2009, 12:31 PM   #4
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Re: 22 year old caretaker...needs advice!!

Jessica,
What a wonderful young lady you are. But there are a few thing wrong here. First, who is responsible for your grandmother during the day when your mother is at work? Certainly not you? YOur grandma is at the point where she needs to be in a home-and not yours! If you are running a "home" for elder care, then someone needs to be watching these people.

I don't mean to sound harsh, but who is taking care of these elderly ladies that they are up wandering in the middle of the night? Is there paid help that takes care of them? I'm sorry, but this sounds downright scary.....and you don't need to be wasting your youth on this when you need to be studying for your classes and enjoying the spring of your life.

Your mother is taking advantage of you and this is not right. Your mother and the other ladies that you have in your home need to be cared for by paid professionals. Your grandmother especially needs to be under the care of staff that can keep an eye on her. Her sundowners sounds pretty bad. She would benefit by some meds that would take the edge off of the anger and the delusions that she has.

Please make sure that you mom gets your grandmother some help...and in the process you get some relief also....

 
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Old 01-08-2009, 03:11 PM   #5
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Re: 22 year old caretaker...needs advice!!

Welcome to the board Jessica. I am glad you found us to vent to. What a wonderful young lady you are for trying to do the impossible. It is obvious that you are smart and mature. So let's think about this?

I agree with the others. My first question is.... who's is responsible for the two elderly ladies in your care? Is it your Grandmother, you Mom, or yourself. Who is responsible if something happens to those ladies? If it is your Grandmother then it is obvious that she is incapable. If it is you Mom then she should be there and not leave the responsibility to you. If it is your choice to be there then you need professional help to give yourself a break. In reality you have three elderly ladies that you are caring for including your Grandmother which is too much for one person to handle.

At 22, unless elderly cargiving is your chosen profession, you should not be burdened with the care of three elderly ladies. If it is you chosen profession then you know that it should not be done 24/7 by one person. You have to have help.

A mild antianxiety medication or sleeping medication may be the answer to your Grandmother's nightly rants. It is worth a try. Then you need to find you someone that can stay with your Grandmother for you to go out more than once every two weeks. Perhaps even stay while you are taking a class twice a week as well. Your best bet is to move out and live your life. I would have never entertained the idea of my daughter moving in with her grand parents!!! She has a life to live. Soon enough she will have to deal with me perhaps but until then I will deal with my parents.

Love, deb

Last edited by Gabriel; 01-08-2009 at 03:13 PM.

 
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Old 01-08-2009, 03:53 PM   #6
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Re: 22 year old caretaker...needs advice!!

I agree with everyone else. The family may believe that everything is fine since you're there, instead of dealing with the situation. (I have a 22-yr old who helps to take care of his Dad who has severe Alzheimers when home from college, and I understand perfectly -- you need a life!) Yes, your Mother has to work, but you have things to do too. By the time your Grandmother is having delusions and is wandering the house at night, she isn't safe. Keep in mind that this situation with your Grandma can continue for years, and it isn't going to get better.

I suggest that you turn this situation back to the rest of your family. They may be trying to close their eyes to how bad your Grandma's health is (trying to save money???). If she falls down stairs and breaks a leg in the middle of the night or harms herself or someone else, the family would be forced to deal with an even worse situation in an emergency -- it's better to address it now. You can let them know that you're not trained to deal with someone this ill, and that even with your best attempts at taking care of her it's too dangerous...and then let them know that you'll have to move out, although you'll take a turn visiting and keeping an eye on her if she's in a facility or they can find a trained caregiver.

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Old 01-10-2009, 10:16 AM   #7
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Re: 22 year old caretaker...needs advice!!

What a loving granddaughter you are. Not many 22 year olds would do what you are doing.

It is very hard to try to understand what is going on with them because they can't really control what they do. It sounds as if your grandmother shouldn't be left alone any longer but you can't give up your youth. If you want a college education and a life you will have to look for outside help. I don't know what type of insurance your grandmother has but you should look in your community for visting nurses and home health aides. They were a GOD send to me until I had to place my father in a nursing home in December. The sleepless nights and the need to get back to work after a year leave of absence was more than I could handle. I am closing in on 60 years old.

Depending on her income, assets and things like that you should be able to find affordable help. My father had no assets or much income so he was eligible for medicaid in my community. There was no cost to either of us for the care he got. Care is assessed on the progression of the illness and the amount of care required for their safety. You will have to have her assessed by a healthcare professional. In my community a visiting nurse did the evaluation in my home for a fee. It is called a PRI, Patient Review Information. This information is used to assess level of care required for the individual. My father was assessed by a Neurologist first who determined he had Alzheimer's disease. I asked for a copy of the history and physical the doctor wrote to prove the diagnosis.

You shouldn't wait any longer to have this done. At your age you need to look after grandma but you also need to look toward the future. Everyday you procrastinate you lose a little of yourself.

I will keep you in my prayers as the others on this site do for me. Take care of yourself or you will burn out before the age of 23.
Gloria

 
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Old 01-11-2009, 09:09 PM   #8
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Re: 22 year old caretaker...needs advice!!

I am the primary caretaker of all the individuals. Thank you all for the support, and the comments...I know that I should not be their sole provider but no one else will do it. We have discussed putting her in a home but I am strongly against it. We put my grandfather in a nursing home and he withered away, lost all color in his skin and ended up passing away to the fault of his caretakers at the home. I recently was awarded finacial aid and will be attending college this spring (in like a week, actually). I am very concerned about what will come of this. I am considering taking some online courses that are offered through my school...but I know I will have to attend most of my classes on campus. My aunt is supposed to be moving in here, but I do not trust that she will take care of my grandmother or the ladies like they should be. She is a 54 year old woman with no house or car and she is just moving in here so she can get cheap rent. Seriously, my family is really messed up and it sometimes feels like I'm the only one who truly cares. I don't think my mom is taking advantage of me...She works VERY hard and I am happy to ease some of her stress, would no one else do the same? I know that My grandmother and my mother were allowed to live their lives as they chose, But they weren't faced with this type of situation. I really don't mind taking care of all of them, excpet when incidents like the one i first described occur...which has become more and more common...I think I would do so much better if someone would just HELP me. I will have to talk with my mom after I make my course schedule tomorrow... I know that something has to change. There is ONE lady that gets paid to take care of the ladies and my grandmother but she is completely incompitent and screws up my grandmas meds ALL the time so that now I HAVE to hide them from her so she doesn't kill my grandma! It's very disturbing. I will continue to take care of her as long as she needs me...
And about the day care comment...i've asked my mom if we could put her in something like that, the other two ladies I take care of go to a program from 7-430 everyday except sunday, and she said My grandmother was too far gone to be in a program like that...she is at her best in her own home (thats my opinion)
I know its VERY dysfunctional that i should think the way i do...but I guess thats just how I was raised...messed up...haha...But seriously i am ok with being here...i just do really need some help...

 
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Old 01-11-2009, 09:23 PM   #9
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Re: 22 year old caretaker...needs advice!!

Jessica,

Hon, I don't think that it's quite legal for someone your age to be looking after three individuals who have advanced degrees of dementia. If someone were to call the authorities, I think that there could be some serious ramifications. That alone is reason enough for you to get your butt out of it. Yes it's your grandmother, but there are licensing laws in most states when you start taking people into your house to watch them.

Your grandmother needs to be in a NH or AL. Going up and down the stairs with dementia is dangerous. Her bones are fragile and there is good chance that she can fall and break a hip or worse. Your mother needs to have someone else in the house to take care of these folks. There should be several full time staff watching over them. And someone should be monitoring their medications.

You need to be at school and not taking on-line classes. That is not the solution for you either. Sit down with your mother and tell her it's time for someone other than you to do this...

good luck

 
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Old 01-11-2009, 10:35 PM   #10
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Re: 22 year old caretaker...needs advice!!

We are perfectly legal in the sense that we have a license and a social worker stops in once a month. My uncle, who lives on the third floor(im in the basement, grandma in the main level, the ladies on the second floor and he on the third) has the license to have the ladies here, they do not have dimentia but are mentally incapacitated. unfortunatley, he works from 7am to 6pm and cannot care for them...nor can he because he cannot cook. My grandmother has had the in-home care facilty for the past 20 years but cannnot, obviously, provide them with any care anymore. I am perfectly capable of doing this and it would be very easy for me to obtain my own license...which might scare you, but they are well taken care of...I can personally gaurantee that. I understand that anyone reading this must be horrified but I can assure everyone that I DO, IN FACT, CARE FOR THESE PEOPLE. I check on them constantly and always do everything right... I agree with everyone that i should not be doing this, I guess I should just tell my mother to send the ladies away and put my grandmother in a Nursing home, I'd just feel so, so guilty. But I do believe that, that is the right choice... But there are SO many other personal family factors that play into this whole thing.... I might just get shut down...as in, my words may just fall upon deaf ears and nothing will change. In a perfect world my grandmother's actual children would step up to the plate and instead of thanking me for "taking such good care of [their] mother" they themselves would be the ones to do the caretaking. We took her to her doctor a few days ago and he gave her a medication that would help her to sleep, and stay asleep, so that has been working, she hasn't had an episode since the night she went up the stairs. There has been a big improvement in my grandmother since I moved in...mostly because I am a competent adult and I am no stranger to taking on a lot of resposibility. I know that I do really need help, especially since I WILL be attending school, no questions asked and they need someone here at all times...I am currently that person. Even if my grandmother were not sick, I would still be living here. My brother was very abusive to me my entire life and my mom wants him at her house with her...not me...since she kicked me out...thats a whole other story that I will not go into but is one of the "family factors". I truly believe that this is the best thing for everyone right now but once I start school again, things will need to change...until then i will just suck it up, quit complaining and do what I have to. the only way things will change is if someone other than me steps up and puts my grandmother in a NH and sends the ladies elsewhere.

 
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Old 01-12-2009, 12:48 AM   #11
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Re: 22 year old caretaker...needs advice!!

Justhope. We get it. All of us. You came here to vent and while you write needs advice, you aren't ready mentally to take any.

There's nothing we can do for you honey. You may be 22, you may be classified an adult but it is evident in your writings that you are still growing, maturing, and not really there yet.

We're not beating you up. I'm writing for myself not the others when I say that we get it but what we can't do is get in a car, arrive at your doorstep and actually lend a hand.

We told you how we see it and I'm telling you it WILL GET WORSE. The boarders that you have should be placed elsewhere or with their familities. The grandmother should go into a facility. Your uncle having a license?
A license for what? He's gone most of a day and when he's home does he come down, dress and wash the ladies up? Does he cook, you say 'no'.

I think you are all clinging to whatever the money is that is got from this situation and don't want it to change. You are also feeling that doing anything about the situation means you don't love your grandmother and in fact, Martha can attest as can Lil Deb and DGabriel, putting your gm in a facility is the best form of an example of your love. As Martha can attest, they are all NOT terrible places that you read in the stories of years ago.

I realize that taking these woman in means there's income of some sort but we all feel that it should not be you taking care of all of them yourself. How much is the family paying you? Do you know what the average hourly wage is? $20 or more an hour. While you are able to do it now, all of us here (big adult girls and guys are we all) know that it WILL GET WORSE

While you may have money to attend school, you will NOT be able to. These people can not be left alone so when you walk out the door, your mind will be to what's going on at home. When you are trying to study, your mind will be What's going on upstairs. So if you have a caregiver for them to be there while you attend classes, fine but she'll need to be in the actual room with them and not in another part of the house and we all guarantee that you will feel no one can take care of them better than you -- we are also here to tell you, you are SO WRONG.

Ask Deb what could and has happened. Ask petal, polina, dorri, Martha, or anyone else. We've known of things that happened, we've been through things that happened and we've dealt with the aftermath of things that occurred. We are here to tell you that at 22 you are to be commended but need to realize, no matter how young you are, you are not able to do what you are doing.

Today? maybe
tomorrow? possibly
next month? we pray
next year? nada

So while you say you need advice, we've given it. Now its up to you when you actually take it.

Our prayers are with you.

 
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Old 01-12-2009, 01:41 AM   #12
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Re: 22 year old caretaker...needs advice!!

Just.... I am totally amazed. Your uncle holds the license yet he works from 7 am to 6 pm. He is gone for 11 hours a day. He does not cook so I can only assume that you are doing it..... for all five of you that live in the house. You said the two ladies did not have demenia but were mentally incapacitated. Is there a difference? Your grandmother who used to do the work can no longer take care of herself. So you have three mentally incapacitated adults in your care. And your Uncle and Mother have no problem with this? They have left the care of three ladies to you? In the mean time your Mom had kicked you out, yet expects you to do what you are doing, and you said she wouldn't listen if you said you couldn't do it?

I have stayed in the house with two parents with dementia and it was impossible. That is why they are now in Assisted Living. The wonderful experienced lady that kept them 8 hours a day was frazzled by them and she went home for 16 hours a day and didn't work on weekends. I worked in a long term care facility for years and I do have tons of experience.... and I couldn't handle two by myself. How can you expect yourself to handle three? I have no doubt that you are doing your very best to handle their physical care but what toll is it taking on you? What happens in an emergency? What happens when to act out at the same time? How can you calm three at the same time? I do admire your determination but this is just not right.

You do need an exit strategy. Don't ask if somebody will be available to relieve you.... tell them when you are leaving and leave. It is not your burden to bear. That belongs to your Uncle. You yourself said he had the license so let him find suitable help for you until you are ready to leave and then help that is not you. You should go back to school, live with friends, have a good environment to concentrate on your studies, and time to go out with friends and have fun. Until that time you need HELP! I worried about my aids that worked doubles. I refused to let anybody work more than that if I had to go in and work the floor myself. Sleeping with one ear open for a disturbance in the night does not count as down time. At this point I am less concerned about your grandmother and the other two ladies (they are truly not your responsibility) and more concerned about you. From experience I can tell you that you have bitten off more than you can chew. To do it properly, there needs to be at least two if not three people doing what you are doing.

Don't wait for somebody else to fix the situation. As long as you will do it, they will let you. I repeat. You need an exit stratagy. Set a day that you are done and then be off to the rest of your life.

Please keep typing. I worry about you. You absolutely need somewhere to vent and get advice. I have a daughter and I can tell you that I would never put her in the situation you are in. I want to help you and will be here for you. As Caring said.... I can't come cook for you but I can tell you like it is just as I would my own daughter......

Love, deb

 
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Old 01-12-2009, 10:22 AM   #13
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Re: 22 year old caretaker...needs advice!!

honestly, I get it and I understand. I've spoken to my mother about it and she has decided NOT to put her in a NH. I will just have to push my feelings about this issue aside and focus on my own life. You're right, I really did just need to vent but your advice was not just thrown away...I'm 22, not an idiot. I HAVE to get over the guilt I feel... but that takes time like everything else... I'm not sure if or when someone will come in and take over...

 
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Old 01-12-2009, 10:24 AM   #14
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Re: 22 year old caretaker...needs advice!!

I don't get paid to do this, so there is NO issue of money.

 
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Old 01-12-2009, 10:29 AM   #15
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Re: 22 year old caretaker...needs advice!!

Just about every person on this site came to the same conclusion eventually - it was: you put your loved one in a Nursing Home when YOU are ready for it, not when they are ready.

The time will come when you cannot or will not continue doing what you are now doing, and then your mother and uncle will have to find another solution. Until then, good luck, know you can come here any time to vent and ask questions, and please don't feel criticised because we all want you to have it easier (we are older than you and can't imagine you doing this, but you just may be way more mature than the 22 year olds I know!)

love and prayers,

Martha

 
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