My grandmother is 92 and she has dementia. I’m not sure what stage. She normally lives in Puerto Rico but we recently moved her here because there is no one to take care of her. The plan was my mother and sister were going to take care of her in shifts (I have trouble communicating because my Spanish is very basic) I told them this before they brought her. Now she has been here for 3 weeks and I am the only one taking care of her. None of my siblings want to do it (except the oldest but she has a daughter and can only give so much time) my mother works and sleeps when she gets home and my youngest sister refuses. It has been very hard on me. My grandma wakes up through the night to put on clothes or clean or she doesn’t sleep at all and wanders. My sleep is completely non existent. Recently I’ve been in such deep sleep I haven’t heard her get up. She has had two accidents. She did number two everywhere in my bathroom and she has peed on my carpet. Now I am afraid to sleep and am constantly vigilant. I don’t know what to do anymore. My family REFUSES to put her in assisted living and I understand but I am the only one pulling the weight. On top of that I run my household while my mom is at work or sleeping so I have to clean and feed everyone.

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Please hear me out. I was you. I was the primary caregiver for my mother. I burned out. You cannot continue to do this on your own. Deep down I imagine that you know this, just like I did. I was in total denial that I could do it all. I was completely miserable.

I love my mom dearly. It wrecked my relationship with my mom being her full time caregiver. I was no longer her daughter. I was her caregiver. It causes all kinds of family friction. It’s complicated. I don’t want to focus on that right now. I’d rather focus on you because my caregiver responsibilities are over.

First off, you are 20! I am in my sixties. You are far too young to be doing this.

Of course you and your family love your grandma. I completely understand that. I realize that you have the best of intentions helping your grandma.

Of course you are concerned about where you place her. That is where the social worker can help you. Also, do you belong to a church. Speak to the pastor about possibly getting volunteers to help. Also ask if he knows of any facilities that would be a good fit for her.

Please do not put this off. This planning takes time and I want you to get started right away by telling your mom that she has to make other arrangements for grandma.

You can help her do some of the footwork if that will make you feel better. Google nursing homes. They accept Medicaid. Assisted living facilities do not accept Medicaid. You can contact a social worker and ask her to email documents explaining the process of getting grandma placed and so on. Call and schedule tours for facilities.

Do you know how long I cared for my mom in my home? Nearly 15 years. What if your grandma lives to be 100? Then what? You are 20. These are your building years. You have your future to think about.

You are important. Yes, grandma is important. Your entire family is important but you are just as important. Do you understand that? I ask because sadly I did not understand that. I sacrificed everything for my mom. It wasn’t the best solution.

I felt like it was my ‘duty’ to care for mom and correct me if I am wrong but I get the impression that you feel a responsibility to your mother and grandma. Place your energy into arranging for someone else to care for her. Oh how I wish I had listened to those who tried to tell me that I was burning out. I felt like a failure.

You are not failing mom or grandma by getting outside help. You are helping her. I wasn’t ready to hear what I needed to hear from others. They had valuable experience. I thought I knew best. Guess what? I didn’t. I am not saying that I know everything. Of course I don’t but there are other people on this forum that are compassionate and very wise. Ask them your questions. Tell them your concerns. Then consider their advice.

I know everyone makes their own mistakes. I certainly made mine. Now I would like to help others avoid the pitfalls that I fell into. We can learn from our errors in judgment.

I am really not trying to be overly bossy. I hope you know that. Sometimes it’s hard to convey properly in texts. There are no tones in voices or facial expressions. Things can easily be misunderstood.

Let us know how you are doing. We care.
Helpful Answer (16)
Monica1998 Sep 26, 2019
I do understand I can’t watch her fully it is just so hard. I do feel responsibility for them because they raised me and loved me and sometimes I feel like I should make the sacrifice. I just want was it best. I am going to try and host a family meeting to get this working in a healthy way. I really appreciate your advice. I take care of three people and I feel like I’ve lost myself. Thank you so much!
For what it's worth, my mother has been in Assisted Living, and now Memory Care, since 2014 and has never suffered abuse of any kind. I think you're listening to horror stories when the REAL horror story is the one you are living right now! Since gma has Medicaid, you need to get her placed in a nice Skilled Nursing Facility in your area. Then you can go visit her every single day to make sure she's cared for and eating properly, etc. That will ease your mind and also let you off the ridiculously unfair hook you've been put on by your family members.

If you can't get the Skilled Nursing situation to work out, for whatever reason, I suggest you move OUT of the house and leave the full time and unreasonable care giving duties to the rest of your family members.

You've done enough.

Best of luck!
Helpful Answer (10)

Sounds from what you’re describing is that there’s no one here to take care of her either.
You have entered into a “devil’s bargain”, and there are only limited solutions available to you, and you will lose family no matter what you do.

WHAT do you “understand” about your family’s refusal to put your grandmother into AL? Do you understand that they have solved THAT PROBLEM by making the burden of it entirely yours?

You will need to assert your rights immediately to get out from under this, because NO ONE ELSE is going to step up, and by now, you need to know that.

For your health, for your LIFE, it’s time to tell them that their plan to cheerfully accept responsibility for this poor woman and dump it on you IS NOT WORKING.

Research your options for a good local AL. Does anyone in this (mess) have LEGAL AUTHORITY AND RESPONSIBILITY to care for your grandmother? Pass the information you find out on to whoever will be paying her bills.

If this development distresses Loving Family, you will have a choice of either walking away from them, including Grandma, OR - spending your life, 24/7/365, caring for her until her care needs are ended.

Under the circumstances, I wouldn’t let yourself be too upset if you did find yourself losing some of these untrustworthy relatives. YOU are obviously someone who can be trusted and relied upon, and you can be the judge if ANYONE ELSE in your family can say the same.

BE GOOD TO YOURSELF, if you can, and when you communicate with the others, Bear in mind that YOU ARE IN THE RIGHT.
Helpful Answer (9)
Monica1998 Sep 26, 2019
I completely understand. I know my family is afraid of someone abusing her. My mother health is not good at all (which is why she is sleeping a lot) I know my families heart is in the right place but it isn’t working out. I’ve been trying to get someone to take care of her like a nurse for a couple of hours but they’re all scared. There are seven of us and most have full time jobs and children. I’m starting a new job soon. I hope I can find a solution. She recently moved her from Puerto Rico so we are trying to figure everything out! Thank you!!

You are very welcome. I don’t know how much I have helped but you can vent here anytime. We will do our best to help you.

You said it all. You have no idea how many times I said exactly what you just said. I want you to read what you just wrote to me. Read it again please, “I feel like I lost myself.” That was me! I have said that a million and one times and you know why you feel that way? Because it’s true. I completely lost myself. You are experiencing this too, as have many other full time caregivers.

You recognize this. I did too. My problem was that I was in complete denial about my situation. I truly thought I could do it all! I convinced myself that I had to do it.

Okay, I also felt guilt at the thought of not doing it. I had a range of emotions and I am sure that you do too. Some were my own feelings and others I had been influenced by others. I am in therapy and working on personal responsibility so I am trying not to place total blame on others. Of course we all play a part in things but in the end we must make a choice. By the way, not making a choice is a choice too. So if we deny or keep our heads stuck in the sand it is still a choice.

What is most important to you? Grandma’s care? Grandma will be cared for and yes you can visit as often as you like. Your future? That’s important to you, right? Your grandma would want you to have a promising future, wouldn’t she?

You sound so loving and kind. I would be proud to call you my daughter. I have two daughters of my own. My youngest one is near your age.
Helpful Answer (9)

If she needs a lot of care AL may not be the place for her. And AL is always a self-pay situation, as far as I understand it.

Does have any money? If not, she'll have to get aid and go to a nursing home. Or if she does have money, use it to hire home health aids to do some of the work. You can NOT do it all yourself. Since you are, your family must feel like "whew, we're all set!". But NO they are not all set. You are unable and unwilling to do all that needs to be done. It's unfair and must come to an end. You have to be strong and make a plan and stick to it. With love, of course.

Ask mom to sit down with you and talk this out. Don't let her or anyone else bully you into continuing with all this work and responsibility.

Why are you all so terrified of abuse? Of course, it could happen, BUT I think (hope!!!) that it is a very small minority of the time. One way to try to keep the possibility of this down is to have family visit regularly, at irregular times to keep an eye on things. I would keep my eyes open but I would also trust the caregivers as much as possible so that you can have peace of mind.

Whew, good luck. You need to get on with your own life. Mom and sisters may not be happy when you stand up for yourself but remember that they first have made you unhappy by dumping grandma in your unwilling lap!
Helpful Answer (8)

In response to her getting up and you not hearing her, buy an alarm floor mat with the alarm sounding in your room and not hers.  When she steps on the mat the alarm will go off.   We have one for my mom and it was a life saver.  I purchased it on Amazon.  The one I got has beveled edges so she doesn't stumble on it. 

We also purchased a camera for her room, like they use for nursery's.  That way if you do wake up you can check on her without actually going in the room. 

I too take care of my mom plus work full time.  She goes to an adult daycare during the day geared towards ALZ/Dementia.  They keep them very busy.  That  might be something to look into.  She has always been there for me so I will always take care of her.  It's just the way it is for me.  Not judging anyone.   I know were all doing the best we can.

I hope your family steps up soon.  All my best.
Helpful Answer (8)
Monica1998 Sep 27, 2019
Those are great ideas! I just wonder if they have the adult daycare that can accommodate her only being able to speak Spanish! Thank you!!
Monica1998, things you need to know:
- in order to be your gramma's legal medical and financial advocate, she would have needed to assign someone Power of Attorney. If no one has PoA for her, no one will ultimately be able to control what happens to her as the county may need to pursue legal guardianship over her in order to manage decisions for her. Depending on what state you all live in, someone in your family (not you!) will need to pursue guardianship over her (and/or conservatorship depending on the state). To get her into a care facility, someone will need to have guardianship (family or the county). If the county has it, family will have no say in where she goes. Getting guardianship is a legal process that requires time and money.

- Giving control over to the county starts by you or someone in your family contacting the county social services and telling them her situation. They will come in and perform an assessment and she may be able to get temporary, limited in-home services. Again, those services can be different in every state. They will eventually find a facility for her and no guarantee it will be close to where your family lives. They put my stepFIL in one 1.5 hrs away.

- what is your gramma's financial state? If she has little or no money, she will need to apply for Medicaid in order to get into/pay for a facility. Her guardian is the only entity who can do this.

I hope you are not paying for any of your gramma's care? Please don't -- you are robbing your own future if you do. It is absolutely not your responsibility. Neither is the caregiving.

Are you living in someone else's house? If so, do move out so that the caregiving cannot be forced upon you.

Doing this does not mean you don't love your gramma. Everyone in this forum can attest to the fact that what you are doing is just not sustainable and you are too young. I realize your other family members are just as pressed and stressed by life's demands, but everyone needs to give up the "old world" notion of family caregiving. It doesn't translate into the 21st century. Blessings and may you have peace in your heart over all this.
Helpful Answer (7)
Monica1998 Sep 26, 2019
My grandmas power of attorney is my mother. She does have Medicaid. I just don’t know a lot about this type of stuff. I live with 5 people total including her. I take care of my younger sister who has epilepsy and my grandma and mother who has kidney problems and severe diabetes. It’s a lot. I am going to ask my mother about putting her into assisted living. I’m scared but I could visit her a lot and check on her. They’re way more certified than I am. Thank you for your advice!!
She needs to be in a nursing home where she will get 24/7 care! You are not trained for taking care of a dementia patients! I had to put my sister in a nursing home six or 7 years ago! Before that in extend a care in the hospital!
She is now 75 & does not know me!
You can visit her any time you like- so don’t give yourself a guilt trip! People who have dementia do not get better !
She will be safe from wandering, falling or hurting herself
in any other way! You have to think of you & your health as well! Good luck!💕
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elaineSC Sep 28, 2019
She just needs to get herself a job and get away from bossy relatives making her do what they don’t want to do. Grandma only stays in the U.S. for a few months at a time she said since she lives in Puerto Rico.
I want to back up here for a moment. First what state do you live in, are you close enough that your family travels back and forth to PR frequently?

From what I am understanding your immediate nuclear family (mom and siblings) live in the states but the rest of your grandmothers children and their families (so rest of your mom’s family) still live in PR where GM (grandmother has been living all her life) but you mentioned somewhere that “they” raised you, do you mean your grandparents and was that in PR? I’m just trying to get the big picture here.

Looks like your mom has POA for GM does that include MPOA and is it durable, does anyone else have any of these responsibilities and does GM have medical directives? You are living with your mom, GM and 4 other siblings? Were you planning to stay or move out on your own when this new job starts, prior to GM moving in?

When your mom and sister, who it sounds have all the authority and have taken on the care decisions, committed to caring for GM at home in the states and made the decision to keep her at home what was their plan? Did it include you and did you tell them what time you could and would commit or did you pitch in because you wanted to help after GM moved in and it seemed easy at the time? I know all too well how easy it is to take various tasks on because it feels like a minimal addition at the time and we want to help the people we love but suddenly realize we ended up taking on much more than we realized, especially when you add them all together. I also have seen how natural it is for others to forget about a chore or the drain it might be when they know it’s being taken care of and well, it’s easy to get lost in the day to day responsibilities of our own lives and forget there is something else we should be doing to share the burden because its being done so well. My guess is you took on too much up front, well meaning but your mom and sister never really took on the jobs so may not even have a sense of how much work it is or how life disruptive. I know you are taking care of mom too by being responsible for GM overnight, every night but that isn’t sustainable for any one person when the patient has the nighttime habits your GM does, you probably didn’t realize how much she might be up when you took it on but those are the cards they (mom and sis) have been dealt. So what would they have done if you hadn’t taken these things on up front? What if GM had moved in after your job started so you didn’t have the time you have now? They would have started off probably taking shifts with who was responsible on a given night but at least experiencing the need and I think you need to gently move them back into that experience and responsibility, you did take it on so you share in some of what created your current dilemma and I think everyone, you included had and have the best intentions you all just didn’t know to plan ahead a bit better. Took an “it will all work out” attitude instead of a proactive lets try plan A and have a plan B back up, communicate with each other attitude instead as often happens in these immediate need situations.

I would suggest letting your mom and sister know that you wont be able to cover GM these night and or days this week and just leave it at that, if they don’t pick up the slack don’t you do it eater and they will once they feel the repercussions of it not getting done, thats why they moved her close in the first place right, no one was doing the things that needed to be done?

Then after they have had a week or two of experiencing GM’s real care needs you could suggest you all sit down together to plan out the week or the month, let them know your schedule and what days you are available to do what not the days you aren’t anymore the days you are because that switches the prime responsibility for making sure GM is covered to them and away from you which is where it is now. You are still as willing to HELP as ever not but not be primary.
Helpful Answer (6)
Monica1998 Sep 28, 2019
We live in Tennessee. When I was a child we lived in New York and my grandmother lived with us for a while. We can’t afford tickets to Puerto Rico and back so she is here for months. When they suggested bringing my grandmother I told them (so many times) that I couldn’t care for her properly. I speak very little Spanish and when she has a moment where she forgets I can’t help her. The plan was my older sister and my mother. They swore to me I would only chip in once and a while. (I still didn’t agree) Now I don’t have a day off. My mother gets most of the week off and my sister gets the weekend off. I work the entire week. Monday-Sunday. I did try and family meeting and trying to talk to my mother but anytime I mention putting her in a home the backlash I receive is insane. They say how could I even say that to them. To them it’s the ultimate betrayal and I have to step up for my family. Anyone I talk to just says I have to pull through. I can’t just put her in a home. I don’t have a car so I can’t leave. I’m stuck.
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Hi Monica
A bed alarm would be helpful to you along with a baby monitor , and a bed rail on the side she sleeps on. I can send you the items I purchased if you are interested. I also bought bed bumpers for the other two sides of the bed, they go under the mattress cover so that she can’t get up from the opposite side. Alarms on the door nobs of the house will alert you if she tries to leave in the middle of the night. She can call you through the baby monitor when she needs assistance getting up. Or the bed alarm will go off if she lifts her back from the mattress trying to get up by herself
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