Can't hire caregiver because 'That's YOUR job.'

Langley

Hi everyone, so I posted not too long ago about being a young person dealing with caregiver stress. I am so grateful for all the replies I received and noticed a common suggestion is hiring a caretaker for our home. My grandma is 99 years old, bed-bound, and needs help with everything. My mom can't help much because she can't walk and has health conditions of her own. So, all the burden is put on me pretty much since I'm an only child and other family members (like my aunt, who is my mom's sister/my grandma's other child) won't help out. I'm 29 and don't have a job because I can't spend any time away from my mom and grandma, both of them need my full-time care and attention, especially my grandma. I can't even work from home because I have to constantly be on-call for any emergencies that might come up. I'm constantly being interrupted by my mom and grandma needing help. My grandma's schedule is unpredictable. Just the other day she was up at midnight keeping the house awake because she said she needed someone to bring her 10 pairs of scissors and wouldn't calm down.

My mom won't let me get a caregiver, and sees nursing homes/hospitals as totally out of the question as well. She sees being a caregiver as my responsibility/duty and thinks it's selfish that I want to live my own life. It's not a matter of a caregiver being too expensive because I know there are options that would be covered by insurance. In my mom's mind it boils down to "This is what you're supposed to be doing for us. That's your job." My aunt backs her up (because she doesn't want to help either) and will make comments like, "Why would you need a caregiver when you have Langley? She doesn't work, so she can do it." but the whole reason I DON'T work is BECAUSE I have to be a caregiver.

I've described the situation to friends before and we've come up with the term "built-in caretaker" to describe how my mom and aunt view me. I didn't ask to be born, much less to be given the responsibility of caring for two people I'm not medically trained to be taking care of. Even before my grandma's Alzheimer's got so bad, I always dealt with severe anxiety, depression, insomnia, and panic attacks, but it's all gotten so much worse lately. I feel myself breaking apart more and more each day and I don't know how much more of this I can take. And it honestly just feels soul-crushing knowing that this is all I have ahead of me in life since I'm not really allowed to have a life of my own like other people my age.

Lindsay22

Hi Langley, I'm sorry to hear this, it sounds very difficult. Does your mom have dementia or just physical health issues? Your grandmother is 99 years old and bed bound which means, without a doubt, that this won't go on forever.  However, you need to take some ownership of your own role in the family dynamic.  You are not powerless. You are a grown woman who needs to think about her own future of work, life, and health. If I were you I would make a plan and inform your mother of what you intend to do, not ask her permission.  It could be "I have enrolled in classes that will begin in September, I will be looking for a roommate/sublet that begins before classes start so we will need to figure out the care situation before that date." Or begin applying for jobs and tell your mother "I am going to take a full-time job so we will need to discuss the care plan before that starts. Since I don't know exactly when I will begin work we should look at placements for grandma now and decide what you will do when I am out of the house for 8 or more hours per day." That isn't to say it will be easy to deliver this news but you are fully within your rights to do so.  

I know how difficult it can be to go on with your own life while caregiving.  Before my mom was in MC I was always "well once mom gets settled and we sell the house, and we deal with all her stuff we can go on a trip" and "once the kids are older I can go back to school" and now I am "well when mom passes we can do xyz". There will never be a perfect time.  If you wait until grandma dies mom will be depressed and need you etc. etc. You need to move ahead with your life but you can do so in a way that takes the family needs into account. You will feel guilty but I promise you in a few years you will be glad you made yourself a priority. 

Quilting brings calm

Langley… you need to work to secure your own financial future.  You need to consider the fact that you are 35 or so years from retirement and you are  not building social security, IRA or a pension for yourself.  Right now, who would care for you if you were incapacitated? 

I realize you feel trapped because you have no money to leave with.  So apply to state colleges, apply for federal aid.  A 29 year old applies on their own income, not their families.  So you should get a lot of grant money.  Will you also need a government loan?  Probably…but it gets you a room in a dorm, a meal plan, and a chance to further your education,  then you can look for part time work.  The financial aid office will help you through the process. 

What do you tell your family?   I am leaving beginning with  the fall semester.  You- Mom, and You- Aunt are going to have to figure this out, I will not be within 200 miles of you, so I will not be doing ANY caregiving.  I will 100% move regardless of what you do or don’t do.  If you don’t figure this out, I will report your situation to Adult Protective Services after I leave. 

FYI- your state most likely has a list of lawyers that you can have an initial consultation  with for a small fee.  I know I met with a lawyer regarding guardianship.  I decided in that meeting not to pursue it.  He charged me an entire $25 for his time. A lawyer could tell you how to get out legally, 

SusanB-dil

Hi Langley - welcome to 'here'...  I agree with what's already posted.  

Basically, they are saying that you are not allowed to live your own life.  That is so wrong! Sorry you are dealing with all of that. Agree - do what you can to get them some help (consult with lawyer - even if to be sure you wouldn't be responsible for anything) and get out.  also agree that you might 'feel guilty' at first, but you are not 'just there for their caregiving'.  Living your own life... You are worth it!  

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jfkoc

Seems like you and your family are not on the same page. Looks like the family sees your living with your grandmother as full payment for care. 

Just looking at the money it could easily cost $3,360 per week (20x24x7).

Additionally you really must look to your future and the thought that someday you may want social security and a Roth IRA to help with retirement. If your family is paying you with cash it will not help with these.

Langley

jfkoc -

My family is not paying me.

Langley

Hi Quilting brings calm -

Thanks for your suggestions, I appreciate what you said and I've been thinking about your response, but I'm really hesitant for a lot of reasons. I have two college degrees already and to be honest I never enjoyed being a student for as long as I can remember... I'm surprised I did one college degree much less two since after high school I remember never wanting to go back to school again. I'm still dealing with bad burnout from graduating from my second degree last year, which plays a role in why I feel so burned out as a caregiver (I thought I'd have less stress after school would end, since school was a main stressor of mine, but now without school I've had to dedicate more time to caregiving, which is also very stressful, just for different reasons). I get that school has advantages but I really struggled a lot as a student, I was diagnosed with ADHD as an adult but it's untreated (I have tachycardia and the doctor didn't think putting me on stimulants would be safe for my heart). I had to receive special accommodations from my university's Disability Resource Center throughout my college career, and even then, school was always a major struggle for me.

Ideally I would rather work instead of study, but every time I've had a job or internship opportunity come up, I've been guilt-tripped out of it by my mom and aunt... I know this is a matter of holding my ground and sticking up for myself more, but I just find myself having really bad mental health setbacks when there's conflicts in the house. I feel like telling my mom I'm reporting her to Adult Protective Services might just cause more drama and anxiety. I know it's embarrassing coming from someone my age but like I mentioned in my original post I've always struggled with stuff like anxiety and depression, my mental health is really not stable, and I'm not able to get help for it, so at the moment I'm doing what I can to not make any waves and make my living situation worse for myself.

SusanB-dil

That just isn't right - about the pay as well as all your time involved.  You need to get out of this situation.  I don't see it as a healthy relationship for any of you - not them, and especially for you - not physically, not emotionally, nor financially. You are not being selfish in wanting a life of your own.

(sorry, i know this is not related, but i just find bunny pic as kind of calming)

Langley

Hi SusanB-dil -

I've had a lot of people say I need to get out of my current situation and yeah it really is starting to wear me down. I do worry a lot about everything you brought up, the physical, emotional, and financial aspects of it all. I'm just scared of doing anything too dramatic or drastic and making things worse for myself.

Thanks for reassuring me that it's not selfish of me... I struggle a lot with feeling guilty and selfish over everything all of the time. My mom thinks I "owe" her and my grandma because they took care of me when I was little, so now it's my turn to take care of them. And just in general my mom makes me feel like the most selfish person in the world, she's always saying that I don't do enough and that I don't help (even though that's not true... I help a lot but whenever I mention it to her she'll say "That doesn't count" or "That was nothing"). It's just a hard situation. I'm grateful for the support on here and I'll keep thinking about my different options. It means a lot to hear from kind and compassionate people like you, so I appreciate it. Thank you.

(And yes, it is a really calming and cute pic )

Langley

Hi Lindsay22 -

My mom just has physical health issues, no dementia.

Yes, you're right that delivering news like that would be hard. Given the choice between being a student again and going to work, I believe I would rather work. The only issue is that I don't have my own place, I'd still have to come back to my mom and grandma at the end of the day, and I know my mom will make my life a living hell.

A few years ago, I briefly had a job, but my mom made me quit because she hated it so much (she said it was an "insignificant"/"pathetic" job and would do things like cry and yell at me about it in the middle of the night and send me into panic attacks so I couldn't sleep and I'd show up to the job feeling tired and depressed). I know I should've been stronger but I just couldn't handle putting up with my mom's attitude and ended up leaving the job.

May flowers

I agree with everyone here. This is not healthy for anyone. Is there a friend you could stay with while you work on finding a job/ your own place?

I know you said your mom guilt trips you - you have to take back your own power and control over your life and that includes not letting anyone guilt trip you. My mom did the same to me when I was in my early 20s, she browbeat me daily and I had to get out of there. I spent a few nights in a hotel, then stayed with my sister while I got a job and my own place. I still ended up taking care of her later but it was my choice, and on my terms. Better for everyone.

mommyandme (m&m)

Seems like your mom is trying to keep control of her life and surroundings and the only way to do it is to control you.  I believe you are actually being victimized.  Her comments and guilt trips need to get out of your head.  Don’t allow her to control you.  You can do this… meaning take care of yourself.  You’ve got two degrees after all.  You are capable and strong, right?! Did she only bring you into this world to care for her and her mother… I think not, not really.  

I asked on another response to your previous post if you have had a hospice evaluation for your grandma?  Get them in now.  They can help your mother understand also. The social worker will be your advocate.  Please don’t wait any longer to get more input than just from your controllers.  Don’t mean to sound harsh.  I just care and it’s time you stand up for yourself and find your own way.  

Langley

Hi mommyandme (m&m) -

You seem like such a sweet person, I really appreciate it. Your answer was very encouraging, I think I tend to lack confidence in myself and beat myself up over the qualities I feel that I'm lacking rather than focusing on things I've accomplished and what else I could maybe accomplish in the future. So, thank you for that. I needed it.

I think a hospice care evaluation would be difficult because my mom is really against putting my mom in hospice. I know you said that they can help my mom understand but it's just really hard for me to imagine anybody getting through to her, she has a stubborn personality no matter what anyone tells her. There was one time my grandmother was at the hospital for a fall and my mom didn't want her to stay overnight because she thought the doctors had hidden motives and wanted to force my grandma into a nursing home (really they just wanted to keep her for testing). My mom just has this big fear of my grandma being "taken away" and doesn't like getting doctors, social workers, etc. involved. And even though I feel like professional help at a facility that can accommodate my grandma's needs better than I can would make more sense, my mom always brings up how she doesn't want my grandma to die away from us.

Langley

Hi May flowers -

I don't have any local friends. That's one of the things that makes this tough. If I could have somewhere to stay while working on finding a job like you suggested, I feel like that would make things easier. But I don't have anyone to stay with and no money to pay for renting someplace, so I'm not sure what to do.

I'm sorry to hear you experienced guilt-tripping from your mom during your 20s, too. My mom is a major guilt-tripper as well as verbally abusive, but I also feel like some of the guilt comes from myself too. I cry to myself every night over my grandma's condition, I hate that Alzheimer's exists in the first place, and when I see her so distressed, agitated, and confused, it really breaks my heart and I think "How could I leave home while she's like that?" From how she acts and what she says, the inside of her head just sounds horrific. So even without my mom's guilt-tripping I have my own guilt to work through. (Mostly I feel guilty about leaving my grandma more than my mom... my mom is getting unbearable to deal with because she's aware of what she's doing and treats me horribly, while anything my grandma does isn't really her fault, she was the sweetest person before Alzheimer's took over her.)

PlentyQuiet

Langley wrote:

I think a hospice care evaluation would be difficult because my mom is really against putting my mom in hospice. I know you said that they can help my mom understand but it's just really hard for me to imagine anybody getting through to her, she has a stubborn personality no matter what anyone tells her. There was one time my grandmother was at the hospital for a fall and my mom didn't want her to stay overnight because she thought the doctors had hidden motives and wanted to force my grandma into a nursing home (really they just wanted to keep her for testing). My mom just has this big fear of my grandma being "taken away" and doesn't like getting doctors, social workers, etc. involved. And even though I feel like professional help at a facility that can accommodate my grandma's needs better than I can would make more sense, my mom always brings up how she doesn't want my grandma to die away from us.

When working in healthcare I would come across this mindset frequently. Sometimes it was truly affection for the PWD, but sometimes it was the loss of Social Security income for the household. Take a good hard look at the household finances and determine where your mother's point of view is coming from, then go from there. 

If it is affection, address hospice as the most loving and dignified way to treat your grandma. At the very least get an evaluation so decisions can be made with full information. 

My personal opinion: you require a life of your own. This is not a want but a need. You need to find outside employment to secure your own future and social contacts. You need your own home that is a place of refuge. It may take a while to get there, but you should strive towards that. 

jfkoc

Please call Hospice. Grandma can stay in the home and they will provide a lot of supplies, medical aid and emotional support. 

Have you discussed all of this with the Dr involved?

mommyandme (m&m)

Langley,

Hospice will come to you.  Grandma can stay right where she is.  My mom is still here with me but we have hospice support.  All of their support will come to her, I think your mom will benefit too.  And you, you will benefit immensely, I hope.  Your grandma needs the extra support being bed ridden, it will take a load off of you too.  

Best wishes to you and yours! 

HeartOnSleeve2210

Hello:

It sounds to me like your Mother is very narcissitic. I totally get where you're coming from with anxiety, but you need to start setting your own terms with them. If they tell you that you owe them for caring for you, respond with: "I'm sorry, I don't remember asking you to give birth to me?" Anytime she tries to use the "we took care of you, so you have to take care of us" excuse to guilt trip you, stand your ground and remind them that you didn't ask to be born and they are your parents, they are supposed to take care of you when you couldn't take care of yourself. It comes with the territory of parenthood. All that being said, you need to get out NOW. It's only going to get worse the longer you stay. As long as you stay, your Mother will know that she can walk all over you and get away with it. I'd suggest at the very least, pack lightly what you can, and head for a homeless shelter to get on your feet. Cut all contact with your Mother and Aunt because they will bring you nothing but grief and guilt. You might feel like you're abandoning them, but you're not. It's time for your Mother and Aunt to put on their big girl pants and take care of themselves. You deserve so much better.