Difficulty with all family members taking on their equal share of caregiving...

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I am 22 years old and currently live at home with my mother and grandmother. My mother was diagnosed with early onset Alzheimer's 2 years ago and my grandma is 84 years old with dementia. I have lived in my grandmothers house with my mother and two sisters my whole life, so this is the only home I know. Although I plan on moving out, I only recently graduated college and will probably need to stay at home for at least another year until I am financially ready to be on my own.

I find myself constantly angry and resentful towards my family. My mother has 2 brothers, both of who take ZERO responsibility or show the slightest concern regarding her Alzheimer's. Her daily life is a struggle, and as to how her own brother's don't bother to lend a helping hand to their own sister or nieces is beyond me.

My grandma used to be the head of this household, but now she has totally lost it. She constantly has accidents. I have literally seen her peeing on the living room floor while walking to get the remote. I have also literally stepped in her feces BAREFOOT. She NEVER showers. Flat out refuses to. She sleeps all day, and her behavior is actually really concerning to me. She doesn't know what day it is, what year it is, and can't even remember if she ate or not.

Since day one, I have always reached out to my family for help. My sisters are always there for me, although I don't think they fully grasp what full time life is like here. They sometimes criticize my role as a caregiver which I find completely unfair. I am here 24/7 to care for both my mom and grandma at the age of 22, while working a full time job. I cook, clean, shop, give out medications, pick up medications, help bathe, and am responsible for having my mom prepared and ready for all doctor's appointments once every two weeks as well as support group 2x a week. Despite that, they are helpful and there for me and do come home to help, and also take care of my moms financial concerns as well, which is a huge help.

I have begged my uncle for the past year to get help for my grandma. If not an aide who stops by a few times a week, at least a life alert bracelet! I have woken up to my grandma yelling for help after falling in the middle of the night on more than one occasion, and have had to call 911 for help because I was unable to lift her up. What if I wasn't home? I do stay at my boyfriend's apartment 2 nights a week, which I feel is something I am absolutely allowed to do. But this year has come and gone. No aide, no life alert. NO HELP.

I truly come home from work every day and feel like I am at my wits end. I even take it out on my mother and grandmother. I can no longer function as the only person who cares what happens to these two people. My other uncle, FORGET IT. He does nothing at all, and flat out disgusts me.

Me and my sisters try our best. We got our grandma involved with a local charity where she gets hot meals delivered 1x a day 5x a week and also gets library books sent to the house to try to keep her engaged. I also arranged to have a volunteer come once a week to play board games with her. But why did we have to take the initiative? Why couldn't her sons?

As far as an aide, that is out of my hands. My uncles control her finances, so if they are unwilling to supply her with what she needs, what am I supposed to do?

I feel helpless, and so so angry at my uncles. If I never had to speak to them again, I wouldn't.

My father, who has been divorced from my mother for 20 years, and his wife help care for my mother and grandmother more then their own blood does.

I just don't know what to do anymore.

5 Comments

You are taking an amazing amount of care upon your shoulders. You are awesome. Gold stars for you!

But this cannot go on indefinitely. It sounds like you have tried to engage other family members. Now it is time to try another approach.

Call Social Services in your county. Explain that two elderly women are unable to care for themselves, that you are going your best to care for them, and that you cannot do it without help any more. Arrange for a needs assessment to be done. The social worker can explain what is available to them, what it would cost, if/how they would be eligible for some services.

It sounds like your father is a decent and responsible guy. Perhaps he could help you with working through a social worker, and could look into what could be done to get your mother's money spent on her own care. Is your mother still coherent enough to understand the concept of Power of Attorney and to say who she wants to handle her finances? If the person who has that responsibility now (her brother) is not acting in her best interests, perhaps someone else should be assigned.

But first things first. Contact Social Services, perhaps enlisting your father's help.
I would suggest gathering all of the information you can regarding health insurance, medicare, names of primary care physicians,etc. Also, do you know if your mom and grandma have living wills? I assume there is no Power of Attorney for either ladies. I also agree with the lady ab ove in contacting the adult services section of your local social services office. Find out if insurance will pay for in home health care, and if funds are a problem, ask them what you need to file for medicaid and then maybe they will qualify for some in home aide.
You sound like a great girl, and I am so proud of someone so young who is giving so much. You will not regret what you are doing, but you must have help. Big hugs from me to you.
Jeanne is right. Call Social Services and start there, explaining that you need help and your uncle handles your moms finances which are NOT being spent on her care. This is a huge deal. I agree, get your dad to help you work through the system to get this resolved in your mom and grandma's favor. You are an awesome young lady. Go kick some butt!!!!!
Wow! Thanks guys, I really appreciate all the support. To be clear, my uncle controls my grandmother's finances, and I believe he is her power of attorney. My oldest sister helps out with my moms finances, but I don't think she is her power of attorney. My sister is really good about getting my mom what she needs, and even transfers money from her account to my moms to help pay for bills. My mom will be eligible for Medicaid in September which will be a huge relief. We currently spend $600+ on her health insurance alone, which is a HUGE amount when all she takes in is social security.

We actually have sat with a social worker, but not one from social services. She was from a Catholic charity organization called SNAP. They are the organization that delivers hot meals to my grandma, provides a volunteer once a week for a "friendly visit", etc. She was completely helpful. She told us everything that was avaliable to my grandma based on her income and needs. I think my uncle's basic issue is that he needs to spend money! I mean, nothing comes free in life, of course at home help costs money! But it is necessary. I'm not sure what is written in my mother's will or my uncle's will. I bring up these concerns but I never seem to get direct answers. I feel that we should all probably see an elder care lawyer.

Me and my sisters finally decided to purchase a life alert system on our own for our grandma, because it was more than clear that my uncle had no intention of doing it. His response to this was, "that's silly". What?! How could somethig that could be potentially helpful be silly?! And what does he care? He didn't pay for it, we did! We didn't even bother listing him or his wife as emergency contacts.

Thanks again for all the support and advice! I hope you guys are all doing well today :) I will look into the possibility of social services and living wills.
You sound like an amazing young women. Your mother and grandmother are so lucky to have you in their lives. I actually came to this site to find some peace for myself and caretaking for my very difficult parents. You gave me strength to keep going. Someone always has it a little worse. Good luck to you in your future. Remember, take care of yourself . :)

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