Long vent, sorry in advance...

just_venting

In 2021 my grandparents moved my great aunt into the same apartment complex as me, less than a year after my mother passed away suddenly (and without warning) back in 2020. I was instantly forced into caring for my aunt without any sort of discussion. So now I am 35 and am currently the main caretaker for my 94 year old great aunt who has been having memory problems for the past few years. She is not officially diagnosed because her primary doctor blames it on her age, even though she was fine a few years ago. She currently has no major health problems besides her memory issues that just started to snowball one day.

I take my great aunt to all her appointments, make sure her medications are always filled, take her grocery shopping every week, take her to the bank, deal with all her phone and tv problems, try to take her out for meals to get her out of the house, and whatever other daily issues she may come across. In doing all of that I have to constantly endure the usual dementia symptoms like repetitive conversations/questions, arguing about continuing to take her pills, hearing confused/wrong accounts of things that she thinks happened, and of course the Anosognosia that I just learned about browsing through some of these posts.

My grandparents are in their 80s and even though they help out when they can, a lot of the time it feels like the blind leading the blind. I have tried telling them many times that my aunt needs to go into a home, or at the very least that she needs an actual dedicated nurse who can deal with making sure she is taking her pills when she is supposed to, but they are in a bit of denial about how bad she actually is and keep telling me to just "hang in there". When I start to push back and tell them that it's becoming too stressful for me to handle all on my own, I get made to feel bad for not wanting to keep taking care of her.

I have two aunts who live in the same city, but apparently it is solely my responsibility to care for our shared aunt because I am unmarried, have no children, and work from home. One aunt is a teacher who gets summers and winters off, and the other also works from home, though she does have to travel every so often. I try to express to them the amount that I do, which leads to them coming for a quick visit but then they seem to immediately forget that our aunt even exists. Most of the time they don't even bother to ask how she is doing.

I am at the point where I am just frustrated most of the day. I am short with my aunt, grandparents, and even elderly neighbors because when I'm constantly being asked the same questions it makes me feel like no one is ever listening to me and I'm stuck in one of those dreams where I'm screaming and no one can hear me. I know that they’re all just getting older and they can’t help being forgetful, but I can’t always hold my tongue and sometimes my tone gets a bit harsh. I don’t know how to constantly keep myself from boiling over anymore. I also don’t know when I’m allowed to just say no and start living my own life.

I’m not looking for any real answers, so I’ll just thank anyone in advance for taking the time to read my post and letting me vent.

Thank you and good luck to everyone dealing with the same issues.

M1

Welcome to the forum and no need to apologize. I am sorry for the loss of your mother. I assume this aunt is on her side of the family? Does your mother have siblings who could step in?

It is always distressing to hear a young adult limiting their own life because of caregiving. It sounds like you are acting out of feelings of family responsibility here, which is understandable, but the brass tacks are that she is not your legal responsibility. Whoever holds her power of attorney is responsible for her care and if no one holds it, that's a problem that should be taken up with an attorney. You can get out of this, but its going to take some thought and some hutzpah on your part to set firm boundaries with your relatives. I wonder if talking to a therapist or counselor would help you figure out a way forward. One thing that occurred to me for example is that you could move. Not fair that you should suffer the disruption, but something is going to have to shift for things to change. I agree it sounds like you are being imposed upon, and unfortunately it is likely to cause some disruption for you to stop it.

Good luck and keep us posted, you have come to a good place for advice and support. I'm sure others will chime in.

Quilting brings calm

M1 is right. While you consider moving, do the following:

Stop taking her out of the apartment for anything she doesn’t absolutely have to be with you for. That means she gives you a grocery list, but doesn’t go with you. ( she will need to give you her debit card and pin). That means you don’t take her out for dinner and socialization. She can give you her debit card and you can go to the ATM - or stop at one when you take her to the doctor. In fact- your grandparents can do all of that since they still do it for themselves.

Stop taking her to the doctor if your grandparents are still managing to get themselves to the doctor- they can take her.

Whomever has medical or durable POA can arrange for home health care and companion care for her.

I know you are sitting going ‘how’. It starts with this: Grandma I can’t take her to ‘wherever’ next week. Either you take her or she doesn’t go. Next week arrives - they don’t her, she doesn’t go. Yes they will try to make you feel guilty. She is not your responsibility- she is the responsibility of the generation before you.

Play this card: I can’t take care of you because I’m burned out taking care of her. Who’s hoping to take care of you in 5 years- it’s not going to be me if you don’t put her in a home. It doesn’t matter whether or not you plan on taking care of them - that’s not your job either.

Play this card: if you ever want great-grandchildren, it’s not going to happen if I’m not out and about meeting someone - which I can’t do taking care of her. You do not have to actually want to get married or have children to say this

MN Chickadee

You'll get stuck with it unless you can set boundaries. I know that is hard in many families for a variety of reasons, but it's the only way you get out of it. Tell your grandparents and aunts what your limits are and stick to them. Maybe you are willing to do part of the things you listed but not all. Or maybe you can't do any of it, and that's ok. It's not your responsibility. You are young and need to be focusing on your own career, finances, love life, relationships, retirement savings, mental health, etc. One of the folks in the older generation needs to move her to a facility where she will get adequate care. That's a perfectly reasonable expectation. Until you refuse to bear the load, they will continue to use you because it's easy. Since you work from home, perhaps you want to go work somewhere else a few weeks. A friend's home out of state, or an airbnb on the ocean. Get away and let one of them take care of her and see how hard it is. Maybe that would allow for a more realistic conversation upon your return. It sounds like you will have to have a tough, coming to Jesus style conversation with your grandparents and aunts about your role in this. Set boundaries and stick to them. As someone else mentioned, a therapist may help you sort out how you feel about all the family dynamics and strategies to communicate.

I was in my 30s when the $h!t hit the fan in my dementia situation, and I had to get tough with my father who I was helping to take care of my mom. I had to say this is my limit, and here is what we are going to do about it. It meant doing the research and having the options turn key ready, all he had to do was say yes. It could be your grandparents are at an age where they don't have the bandwidth to deal with the research and decision making needed, so maybe when you do talk to them you can have options ready. Some vetted home agencies or housekeepers/aides etc. Some memory care facilities you have vetted.

SusanB-dil

HI just_venting - welcome to 'here', but sorry for the reason.

You've been handed a lot on your plate that isn't even your responsibility, other than 'she's family'. It isn't right. They pushed this on you just because they felt they could, for their convenience. I agree with most of what's been posted. I would not want any of her financial accesses - for legal issues and explanations that may come up later. Unless she is with you when in-use, that may not end well.

Agree - boundaries. ASAP. You are telling them 'that's enough!' So now it is time for them to wake up. You need your life! They've taken away too much, and without your consent or thoughts of what this is doing to you. Do step up to an option that's been mentioned.

sandwichone123

Hi Just_venting,

Welcome! You have a lot on your plate, and you've gotten great advice. One priority I suggest is that you sit down with yourself and really think about what you want to do. It sounds like you want to be helpful, which is great. Perhaps you decide, "I want to see my grandparents once a week and help my great-aunt out once a week." Whatever it is, write that down, because you'll need the reminder when the rubber hits the road. Then set the limit: "I can take Great-aunt to A but not B, because I am busy." Do not provide additional information beyond "I am busy," because that's just fodder for argument. Then, when B comes and you're pressured, remember that you can't take her, and that you don't have to. It's not your responsibility. You have suggested more supportive living arrangements, and those remain an option. But you can't take her. :-)

I'll also point out that this is exactly what all—ALL—your other family members are doing. It's not something you need to feel guilty about.

Iris L.

Are your grandparents internet-savvy? If not, they will be hesitant to do the inquiries necessary. You might think about suggesting a geriatric care manager to help them look for a Memory Care facility and make other decisions. This will cost some money, but it may be worth it.

Also, could you go out every day to one of those places that rents cubicles to work in?

Iris

ImMaggieMae

I agree with MN Chickadee. You need to disappear and work from a different location for a few weeks or a month if possible. They will need to figure out which of them will care for her. It sounds like your other aunts are a possibility. If not, a facility or paid caregiver may be a solution. But it should be up to them to figure it out. You are too young to have to give up your life to care for her, especially when it wasn’t something you agreed to. I’m sorry that you were put into this situation. Please keep us updated.

MN Chickadee

Also, keep in mind she will get worse. As much work as she is now, that will triple in the coming months. As dementia progresses she will require 24/7 supervision and before too long will need help with all ADLs such as dressing, bathing, toileting, grooming. There needs to be a plan even if you continue to do the shopping and meds and similar. Otherwise you will be in crisis mode before too long. The minute she leaves the stove on, wanders away from the building, or starts wetting her pants you will be in crisis mode. The family needs to get on the same page and get a plan.

forbarbara

There’s a lot of good advice in this discussion and I hope it’s helpful. One thing most of us have experienced is how this disease brings out the worst in some of our family members. But we have also found stronger relationships and even new ‘family’ along the way. As you sort out your responsibilities and boundaries, I hope you’ll find love and support — you deserve it!

Bailey's Mom

A story that might help you…When my mother was 62 she retired. She had lived a hard life as my father died in an accident when they were in their 30's and she had 4 very young children plus was pregnant with me (which they were unaware of). She was a brilliant woman and decided to work and take care of her family which she did a terrific job of. Well…my aunts (her sisters) had plans for her…they moved my grandmother 3 or 4 houses away from her so that my mother (since she was retired now after all, and had plenty of time) could take care of her. My mother, who had never been able to choose herself in her entire adult life, stumbled across a book by Wayne Dyer book (not sure which one)…and suddenly sold her house and moved to the Florida Keys. My aunts were furious about it, but had no choice but to take charge and found somewhere to place her…even though she was not sick and could have lived alone by any one of them. You are young and are in danger of giving up your life. Even if you are forced to move, I would do it as soon as you can…don't let them make you feel guilty about it!

just_venting

A big thank you to everyone who has taken the time to read and respond to my post, and for all the support you have already provided 💗

Just sharing my story has already made me feel a bit better, but hearing that I shouldn't feel guilty for wanting a life for myself is also SO validating.

The following is just another rant, as I am finding it helpful to just get everything out there. It isn't so much of a response/update, just more background info to give my original post some context.

I should have added that my grandparents did originally attempt to move my aunt into a senior living place (not AL, just independent living), but after filling out all of the paperwork, being approved, and even being shown the actual unit she would live in, the place called and disqualified her because of income (even though all her financial information was already submitted). When I offered to find other options for my aunt, my grandparents didn't want to give me all the financial information that I needed to do that at the time.

I also should have mentioned that my grandparents own the building that I live in. I grew up with a single mom who wasn't all that financially responsible, so my grandparents gave her a break on rent. My mom didn't work for the last 15 years of her life, so I was basically supporting both of us right after high school. After college I had a cushy tech job and moved out to be closer to the office and just to take care of myself for a change, but I was still paying bills for both households. Unfortunately, my grandmother decided I had "abandoned" my mom and told me so, guilting me into moving back home and finding a new job that was closer. I ended up quitting my last job just before my mom went into a coma (that she never came out of), so I lived on my savings for a bit after she passed. She left me with nothing, so my savings went pretty quickly after settling her accounts (which I did before knowing that her debts were not my responsibility :/ ). My grandparents have continued to give me a huge break on rent, and since I live in Los Angeles, this is currently the only feasible option for me. To me (and to them) this means that I HAVE to help them out in any way I can, which includes my aunt. In hindsight I guess we didn't have a conversation about how much they would expect me to help because my aunt seemed fine living on her own before the move. The move was probably the trigger for the decline.

My aunt is a long-time widow with no children, so my mom was the one who cared for my aunt while she went through cancer. My aunt also supported my mom financially, which I did not find out until after her death. I know my mom didn't do it for the money, she did it because she wasn't working and therefore felt the same sort of obligation to my aunt and my grandparents. But this is also why I feel so obligated to my aunt. She helped my mom, she paid for part of my college tuition, and even now she tries to pay for my gas and groceries (like many of her generation, she doesn't understand the concept of working from home so thinks that I don't work since she doesn't see me leave every day, plus you know, the memory!).

I know that familial obligation isn't always fair, but I'd say in this case it's a little more even. I know I should still focus on taking care of myself, but I am also one of those people who can't help but take care of others. And I know my grandparents are on their way to having the same problems, so I also feel like sparing them any excess stress I can to help them stay healthy for as long as possible. They have always been like my real parents, so I guess I'm a bit scared to just say no and leave them to their own devices.

The one thing I know I will do for sure is take a break from it all before sitting down and having the tough conversations with my grandparents.

Bailey's Mom

Victoriaredux…sometimes it takes an outsider's view…you nailed it.

just_venting

My grandfather has some form of POA, but I have no idea what kind. We had to place a credit hold on my aunt's SSN since she fell for a phone scam already. Financials are not really the problem, it's more that my grandparents are still dealing with my aunt like she's sane. They don't think she'll agree to care so they just keep putting it off, and I've already tried telling them that she's at the point where they just need to decide for her and TELL her the plan. It is unfortunately part of our ethnic culture to not want to upset anyone - we're passive and taught not talk about the hard things. If I don't tiptoe the right way, they lash out and shut down on me. If I go around them to make the necessary arrangements it'll become a bigger issue and they'll try to slow it down even more.

One of my other great aunts will be visiting later this week. She will actually be staying with the dementia aunt, so I'm hoping she will see how bad it has gotten and urge my grandfather that it's time for care. She has visited before and knows that the situation is going downhill fast, so hopefully she will help me put some pressure on him. Here's to hoping 🤞🤞🤞

Quilting brings calm

The only way for you to get out of this is to STOP helping. Period. You don’t want to do that because 1). It’s not in your culture, 2) the confrontation will be unpleasant, 3). Your grandparents might quit speaking to you ( at this point, hallelujah), and finally 4- you might have to start paying full rent or move to a less expensive town ( you work from home so you don’t need to live in the most expensive town).

You either have to quit helping and accept the fact that you might be out of a home or accept the fact that you are a paid caregiver ( the payment is less expensive rent). That’s the reality of the situation you are in.

NizhoniGrrl

I understand that in some cultures the youngest child/sibling is meant to take care of the elders - it happened with my two great aunts (never learned English or went to school) and a cousin who was basically raised by his grandparents and nursed them until they died in their 90s and he was in his 40s. He had no work skills or experience and is now living in poverty. No one helped him, it was like he was expected to do it. I think they are expecting you to stay in this role until they are all gone with no concern about your future. Once this aunt passed away you’ll be taking care of them in no time. Please think about the bigger picture for yourself and think about how you can start setting some boundaries and making plans for yourself and your future. It doesn’t make you ungrateful.

Lucy C

These situations are always difficult emotionally. In your case, you have received a lot of support from your family, which makes it easy for them to insist on more support from you than you can actually give. Unfortunately, with your grandparents controlling things financially to a large extent, I don't see this situation changing unless you do indeed relocate to a less expensive town or city. If you do, they will be forced to find or hire another caregiver. The exchange is that it may create a rift between you and them which is never healed. They simply will not accept what appears to them as abandonment; and possibly due to the mental conditions related to their age, they may not be capable of understanding your experiences and needs.

You will probably encounter a lot of emotional blackmail if you try to leave. You may need therapy yourself to deal with your own heavy feelings of guilt and regret. If you do decide to leave, I would suggest not having discussions beforehand. Save enough money to hire a caregiver for a week or two, so that someone is with your aunt while your grandparents are adjusting to the fact that someone else will have to take charge. Leave them with a list of caregiving agencies. You might even collect brochures from those agencies, so that phone numbers, services offered, etc., will be easy for them to look at.

Then, having left them with those resources, go. Do not give them your new address or phone number until you have had some time with a good therapist (to prevent yourself from being pushed back into the situation, and to give them time to adjust and accept that they must hire an outsider or consider a facility). Sadly, you may be forced to cut all ties in order to leave the situation permanently. I'm very sorry to have to suggest such a drastic course of action, but it is true that your great-aunt will get worse, and neither you, nor any other individual person is capable of assuming her care entirely and alone. Leaving out such considerations as employability, work history, accomplishments, etc., your physical and mental health will eventually suffer an unacceptable level of damage if you remain where you are. The fact that you are "boiling over" indicates that you are stressed beyond your ability to compensate, and a change is essential.

Best wishes, and hugs…

Maru

You have my fullest sympathy. It really is all about BOUNDRIES. There are legal issues here that you can address. Who has POA and medical POA (forget what it is called), If your grandparents say that they have then make them take over the responsibilies and if they won't….everyone has already given you great advice. I'm 84 and old age does not mean that you are now free of responsibilities.

H1235

Confrontation is hard! I’m sure you have told them you are struggling, but maybe the talk needs to be a little more serious and intense. Think through what you need, then have a sit down discussion at the table. Tell them everything and explain that you can’t go on. Tell them how much you appreciate the break on rent and everything they have done for you etc. Tell them that you just can’t keep it up any longer and unless something changes you will need to move out or whatever you decide. As someone else above said set your limits. I can do this, this and this, but you will need to find someone else to do these things because I just can’t do it anymore. I can totally understand the need to keep these relationships on good ground and I think you can if you approach things carefully. I hope you find a solution.