I am the main caregiver for my 97y/o grandmother, I myself am 24, I have been with her for 4 years now and am really struggling with having a life of my own without feeling guilty. It's really starting to effect me to the point I may be falling into depression and its changing the way I'm interacting with her and I find myself putting my own needs on the bottom of the priorities list. I do get time away every now and then, another member of the family comes in for a week maybe 4-5 times a year, other than that it's just the two of us at home. We don't go out much as too many people and strangers tire my grandmother out and the chance of her wandering off is high. (She has very bad Dementia) I feel like I'm nearly 25 now and I want to go out and meet people and start my life but that also makes me feel very selfish for wanting this, this whole question seems selfish to me since I'm just talking about myself. I don't really know how to get myself out of this slump, how do you find balance?

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"I feel like I'm nearly 25 now and I want to go out and meet people and start my life but that also makes me feel very selfish for wanting this, this whole question seems selfish to me since I'm just talking about myself."

YOU are not the selfish one! The selfish ones are those who have allowed you (made you?) take on this burden. I echo the previous did this situation come about? Are you being paid?
Helpful Answer (7)

Upsidedownsmile, this is an important time in your own life. I'm surprised that your parents would let this happen. You need to be establishing your own life now -- attending school, starting a career, finding a mate, planning a family. It is not an age that you need to be caring for a grandparent. The only remedy that I can see is to tell this to your parents and let them know it is time for you to get your own life. I'm actually a bit angry that they would let this happen. You shouldn't feel guilty at all. What you're feeling about needing a life of your own is totally normal at your age. These are very critical years for you, so please make sure you don't sacrifice them for other people's comfort. There are many other options for the care of your grandmother.
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So, how did this situation come about? Are you at least being paid a wage to do this work?

I'm not sure that you realize that one person cannot care for a dementia patient around the clock for weeks on end without burning out quickly. How many hours a week to you have outside caregivers coming in? Do you have relief during the overnights so that you can sleep, at least?

Call you local Area Agency on Aging and get a professional "needs assessment". This will tell you what grandma needs (24/7 care, right?). It usually helps if it's not just you the caregiver saying this, but rather an outside agency.

Who has POA? That person, whether it's you, or your parent or other relative, is charged with arranging for grandma's care, using her resources and any public monies that she is entitled to--Medicaid, local caregiving grants.

Figure out what you CAN do--say 5 hours a day, 5 days a week. POA must figure out how to arrange for care the rest of the time.

And please make sure that you're being paid to do the caregiving that you ARE able to provide.
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Your family is robbing you of your youth and that is very wrong of them to do. Have you been groomed all your life to take on the role of caregiver? Where are your parents? What are your parents doing with their time? Who is this other family member who visits a few times a year?
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I too, wonder how this arrangement came about. Were you asked to take this around the clock job? Working around the clock to care for a senior who has dementia is a huge job. Actually, it's a job for at least 3 people. The respite time you describe doesn't sound sufficient to me.

I might explore information about income and retirement. Are you being able to pay in, so you have some Social Security benefits? What about your health insurance? Savings? I'd try to seek a financial consult to see where you stand and what options you might have.

I might also read a lot more about caretaking of seniors with dementia. From what I've read, family members who are too overloaded, for some reason suffer from many emotions, one of them being guilt for no reason. I'm not sure why this happens.

I'd try to explore additional help for your grandmother. Being overloaded this way is really a recipe for decline in your own health. I hope you can find some solutions.
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Hello, thank you for all of your answers I wasn't really expecting this, when I had wrote is I was just very ready to vent.
My situation happened quite suddenly I guess and I didn't really know how long it would be for. After my Grandfather passed away my Grandmother would have been alone in her house and my Aunt asked me if I could stay with my grandmother for a while, at the time I had just finished a year of study out of highschool, also just finished work and hadn't started a new one yet since I was planning on moving out of my parents home to another city with a friend to get some independence. At the time I was actually more than happy to do it, my grandmothers dementia wasn't so overwhelming, and I am getting paid so it was a little money for me who at the time had no income for the moment. I don't think I really knew what I was getting into.
POA would be my aunt the one who asked me to stay with my grandmother, My Aunts and Uncles not wanting to put my grandmother in a nursing home thought this was a great idea.
I do not have someone helping at night and such, and the other family that come to help me on times I have a break is my sister. My parents are working, everyone is working so free time for them is hard to come by.
My parents, well my Mother wants me to go back to school and study more, my Father is happy that his mother isn't in a rest home but understands its tough for me he used to visit at least once a week but he couldn't afford the trips anymore.
I guess I am a little scared to say I don't want to be here for so long anymore, I feel badly, like I will let everyone down since I'm getting burnt out, It's hard to shake that feeling off. I have a lot of trouble standing up for myself too.
Having myself write all this down and reading all your replies makes me realize I need to just let everyone know my situation and hopefully we can organize some help.
Thank you so much for letting me vent.
Helpful Answer (3)

Your aunt asked you to stay for a while, not forever. This arrangement has worked out nicely for everyone, including you. You have learned a lot and earned some money, which is a good thing because caregiving is hard work. Please remember that what you have done is the opposite of letting everyone down. You have helped hold everyone up!

Now is the perfect time to sit down with your aunt and tell her that you want to do something else come January (or sooner, if you can swing it). That is plenty of time for your aunt, the POA, to get a plan together for *her* mother. During the transition period, you can start tapering off. The first thing should be getting overnight help.

Also, you can help your aunt by sharing information from this website with her.
Helpful Answer (3)

As others wonder and ask, where are the rest of the family? What support are they providing? Respite 4 - 5 times a year is totally inadequate.

Your profile doesn't state where you are. If you're in a warm state, start inviting friends over; you can just sit outside and chat so that your grandmother isn't confused by the presence of strangers.
You might have to have a family meeting or conference through e-mail and let them know other arrangements have to be made.

Despite the fact that your grandmother becomes confused when strangers come, if she wants to stay at home, that might be the best option. The family should pool their funds and help provide in-home care.
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