Like the title says, I'm in college finishing up my undergrad. I'm 23 years old and I live at home with my dad (60) and my grandma (81). My dad works as at a job that keeps him away from home, and I work part time (20 hours) much more locally. Because of my dad's job, he's gone 4 days a week, which means all the caretaking falls on me. We have a home care aide who comes from 9-5, but that's just enough time for me to get my shifts in at work. I'm an only child, my mom passed away when I was 17, and my dad's family is various shades of unavailable (lives too far, passed away, worse than useless). My dad has an old back injury which keeps him from doing a lot of the stuff that requires bending over when he is home, like changing her.
Everything else before the aide comes and after she leaves-changing my grandma's diapers, getting her medications, getting her in and out of bed, cooking her meals, feeding her-falls on me. My grandma has later (?) stage Alzheimer's disease, as well as Parkinson's (she was diagnosed when I was around 15) and can't be left alone for more than maybe 20 minutes at a time, which means there's no chance for improvement and this is only going to get worse. I've been doing this since I was 19 or 20, I don't remember which at this point. I've never done anything like an internship or volunteer work or study abroad because caretaking takes up too much time.
The thing is, I don't love my grandma, and before she got sick my relationship with her was neutral at best. She wasn't mean or abusive or cruel to me or my dad, we just had 0 relationship when I was growing up-I don't recall her taking me so much as out to lunch once when I was growing up because she never made any effort to spend time with me. I take care of her because I love my dad, and the alternative would be leaving him to do everything by himself or putting my grandma in a care home. So I wake up in the morning (I get up at 7 for work, 8 on days I don't-just to change her for the morning-and go to bed after we put her to bed at 9:30) and hate, hate, hate my life because the very first thing I do when my feet hit the floor in the morning is change the soiled, solid waste filled diaper of an old woman I have zero emotional connection to. I have no free time, no privacy, no peace and quiet, no time to do my schoolwork never mind relax, and my life is comprised of either working or caretaking, day in and day out. I hate my life because every single day of my life is like this and I can't see any escape or way to change things, and the idea of doing this for at least another decade sounds like a circle of hell to me. Just knowing that this is my life now for the foreseeable future makes me want to cry.
We've also had bad experiences of elders in our family being mistreated at nursing homes to the point where we needed to remove them from the facility and bring them home, so my family is very mistrustful of nursing homes and institutional care overall.
I have two daughters and I never wanted them to place their lives on hold to help me with their grandmother. They adore her. She loves them and I wanted them to have a grandmother/grandchildren relationship, not a caregiver/patient relationship. They aren’t nurses.
One daughter lives near us and the other just graduated college and moved to Colorado.
I can say that I have some similarities to you. I am quite familiar with Parkinson’s disease. My mom has it. Yes, there is no cure. Meds only do so much and it is progressive. Not a pretty picture. In fact, it’s rather ugly, isn’t it?
I was my mom’s caregiver for 20 years, 15 in my home. I was my caregiver for my dad and one of my brothers too. I didn’t have help from other family members either. Mom is being cared for by hospice now. I felt the weight of the world lift off of me when she left my home. This is far to heavy for you to be carrying at your age.
I feel for all of you but most of all you. You don’t deserve this. I realize that your dad has dealt with very unfortunate circumstances in his life. Your grandmother too but you are far too young to be doing this.
I am sorry that you didn’t have a bond with her. That is sad. I adored my grandparents. We were very close.
I respect that your dad has to work. I understand that your grandmother can’t do for herself. I especially understand that a young woman such as yourself should be focusing on school.
These are your building years. You are building a foundation for your future. That should be your biggest priority right now.
Yes, a social life is something that is natural for you to desire and you deserve that at well.
I would hate my life too if I had been a caregiver at your age. I wasn’t happy being the primary caregiver to my mom with Parkinson’s disease. It’s a challenge.
You’re strong. No doubt about it but no one has to be strong all of the time. I am glad that you found this forum to lean on but further action is needed. Now you have to be strong enough to let go. Your ticket out is that without you in the picture your dad is forced to place her in a facility. None of this is your responsibility. It’s no one’s fault. People don’t choose these crappy situations. At times life has many bumps and detours in the road.
Does your grandmother have a social worker? Make an appointment with her if you can even if it is only a phone call for now. Tell her that you are burning the candle at both ends and rapidly burning out, both physically and emotionally. Explain your priorities. Explain that your dad has some mobility issues. Explain how your grandmother is not capable of caring for herself. Don’t sugarcoat it at all. Be direct. Spell it out.
Does she have Medicare or Medicaid? Even if your dad could retire you have stated that he cannot care for her alone. Live in help is way too costly.
You need some time away from her. Would you stay home if you weren’t caring for your grandmother? Would you rather be living in an apartment with roommates your age?
See what arrangements can be made then discuss it with your dad. If you aren’t interested in doing that then tell your dad that you are no longer willing to do this and he needs to make arrangements for her.
I am by no means a social worker or doctor that makes recommendations. So I don’t know the answers. Others that post on this forum are better qualified and they will pitch in to help you out. Hang tight. There is hope. I sincerely want you to love your life.
Wishing you all the best that life has to offer.
I was also a caretaker for my mom since I was 12 or 13 (she passed away my very first semester of college) and she wasn't as bad off as my grandma-we're not certain because she refused to go to the doctor for any reason, she was terrified of doctors and hospitals, but we suspect she had liver failure-but I remember things like making her meals, rubbing lotion on her skin when it itched and bled, running errands and picking up dry good stuff at the corner store, paying bills after I got a job in high school, buying her stuff like chili from Wendy's just to make her happy, so it's not like I'm not used to taking care of other people, I'm just aggravated and tired.
Let me see if I can address your points.
She does have a social worker but I have no idea who they are, how to contact them, or where to find the information. I don't even know her SW's phone number or name. My dad has all of that info because he has POA over my grandma, and if I ask for it, he's going to *very much* want to know why I want it, he won't just hand it over and I'm not sure what to tell him. If he finds out I went behind his back to talk to her social worker, there will be absolute h*** to pay about it in my house.
She does have Medicare, it's how we pay for the aide who comes every day and we could never afford it otherwise but I don't know all the details because like I said, my dad has POA and makes all the financial decisions. He pays all the bills in our house and he makes all the decisions about my grandma's care, I don't have any input.
I would actually still be living at home if it weren't for my grandma. I go to college locally and the plan/agreement before I was even accepted into college, even back when my mom was still around was that I would live at home to save money. When it's just been me and my dad-there've been a couple falls over the past several years it's taken my grandma a few weeks to recover from-I actually do really like living at home.
I'll do what I can to look into other arrangements for her, the hard part will be talking my dad into it. Thank you so much for your suggestions and ideas!!
Thank you x1000 for you compassion, kindness, and understanding, both regarding me and the rest of my family, it really means a lot to me.
I teared up as soon as I read your posting.
I recognize that your hands are tied but you simply can’t continue this way. You were still in the grieving process for your mom and then you had a major responsibility dumped in your lap.
I have another question for you. Do you have access to speak to your grandmother’s doctor. They can give feedback on what should be done. What has her doctor said about her living at home?
I wish every young adult could hear your story every time they were about to complain about something petty. They have nothing on you!
I want you to keep this in mind. People are living longer these days. My mom will be 95 in November. Your mom could live many more years. This isn’t good for your health. You have to be worn out all of the time.
Please keep up posted. Vent anytime. This is a great place to vent and get suggestions on possible solutions.
Many hugs for you.
if your Dad agreed to have you live at home to go to college, and you are taking care of your Grandmother because he is gone or can’t because of help, I have one question. Why are you working 20 hours a week?
You are already working 41/2,to 51/2 hours a day for your Dad.
I do get mad at families that say never ever have a family member in a nursing home. But those same family members leave it up to someone else to do the work.
You have been trained at an early age to care for others. You deserve to care for yourself.
Your Grandmother could live for 10 + more years. What will your family do? Expect you to do this for 10 more years?
You are worth speaking up for yourself. I had to do it when I was young and it is hard. But you will gain so much if you are your own spokesperson.
My heart goes out to you. The daily struggle can be either overwhelming or a chance to learn how to advocate for yourself. You can do this.
You love your family, you see their point of view, and you would be happy to live at home if it were less stressful. However you “can't see any escape or way to change things, and the idea of doing this for at least another decade sounds like a circle of h*ll to me.” You are right about that.
You need to step back and look at this from the outside. Your love for your family and your fear of their disapproval has turned you into a slave. At age 23, you are quite right about not being able to see the end of caring for grandmother. Your father’s back injury sends a message that after your grandmother goes, you will be expected to care for him in turn. You are looking at slavery for life.
You cannot get out of this situation without rocking the boat. You have to be the one that forces the change. Perhaps when the storm has subsided, it may be possible to be on good terms with everyone again. But you have to face the ‘h*ll to pay’ if anything is going to change. You don’t need to stay in the ‘circle of h*ll’ to prove your love for your family. You'll find out how much your father loves you when you want your own life. At the moment he should be kissing your feet, but his behavior isn't showing much love to YOU. You don't want to end up feeling about him like you feel about your grandmother.
You are 23, you have a job, an income, and prospects for a career. You have contacts at college. Your best option is to move out. Find a share house with other students. Go just before your father gets home. Leave a note to say that you have gone, and will contact again in a few days. Don’t stay to hear the pandemonium that will follow in your father’s house, as the family works out how to cope without you. What they do is not your responsibility, but they won’t do anything until they are forced to.
Forget about grandma’s social worker, that's for them to do, find your own. Your college must have some sort of counseling service. Go to them for the support you need to get your own free life. Please break your chains.
This is where the head nurse and social worker step in to resolve the issues.
Plus, you can tour facilities and do lots of research before selecting a place that is suitable for her. Your dad can take over monitoring her care.
This is not your responsibility! Don’t place any guilt on yourself.
Look to the future. After your grandmother passes, your dad will most likely expect you to take care of him. Is he planning for his elder years. I suspect you are the plan. You will never have a life with a family of your own if you don’t break the cycle. Start looking at facilities. You can find one that will meet your grandmothers needs.
Also, dad needs to plan for the future, like save money for his own care, or buy long term care insurance to cover his care.
Get a third party to help. Like a social worker.
May you be successful
*Take advantage of the self-awareness you have right now*, before something bad happens. Do it for your grandmother's sake.
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Well, guess what. Your family isn't taking care of your grandmother. And most of the time, neither is your father. YOU are doing all the work! That "family" that is so concerned is doing nothing.
On another web site, I learned that the people who aren't helping don't get a vote! If family wants your grandmother taken care of at home, they should help. Ditto for your father. Why is he willing to take years of your life (let me say that again--YEARS OF YOUR LIFE) and not even let you get a vote in what happens?
When do you have a chance to be with friends, take a trip, or date? Those are all normal things that people do at your age. Your father got to do all those things, but he's denying them to you.
Yes, there will be a massive explosion when you try to reclaim your life. Right now everyone gets to feel comfortable and smug about grandma being taken care of--without actually having to get their hands dirty. You are about to upset the applecart in a major way. But make no mistake, if you don't make a very drastic move very soon, the entire rest of your life is going to be exactly what you have been doing. And you deserve better. Please make an exit plan soon. You don't want to be 40 years old and still living exactly like you are, and wishing with all your heart you had done something years earlier.
It really sounds like your dad is taking advantage of you, because you allow it.
You are going to have to have a serious conversation with him about how the stress is to much for you.
there is no reason why he can’t get a hospital bed that moved up in height, to relieve his back issues, there is no reason why he can’t be on duty 24/7 on his days off, so you can be free.
stay strong honey, this isn’t going to be easy
After coming to this website, I've realized my life matters too and I'm much older than you! I will put my mom in a nursing home when the time comes. Good luck- we will be rooting for you.
I do not think the situation you are in at the moment is fair. Not at all. I think it would make sense to have a chat with your father about how you are feeling and find a way to sort it out.
It sounds like she needs to go into a care facility. Full time 24/7 care. I think the situation you are in is not good for your health and wellbeing or for hers. I do not see the point in someone having to look after her needs who has no emotional connection to her. Thats what care facilities are for. They get paid to do it. You do not.