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MissMillennial1 Asked August 2018

What do you do when you and your mom are the only ones to care for your elder grandma with dementia?

I am 23. I still live with my parents while I get myself together. Also to help with my grandma because without some type of help this "job" will drive her crazy. I originally agreed to help because my grandma had always been one of the most generous and loving people ever and both my mom and I agreed that we we would do whatever we had to do to keep her out of the nursing home thinking that she would be more susceptible to familiar faces instead of strangers. The problem is I still try to help out now but I am slowly trying to establish a life for myself and even have a job now. When I come home from my job most of the time I am tired, but of course my mom still wants a break and I try to give her one. She has siblings but they are only so helpful.


When I do help my mom seems grateful, but sometimes I can't help but think I just want to live my life like I don't have any kids or a significant other so this is kind of my time to just do me. I'm just trying to find my own way right now and I hate having to be bound to this, but of course then when I take time for myself I feel guilty. In the same if I work outside of the home M-F and my mom takes care of my grandma those same days both of us want to enjoy ourselves on the weekend. Both of us deserve to be able to live our lives but this responsibility holds us both back a lot. I think we both don't want to leave her when she needs us the most,but this duty is also whooping our butts. PS my mom also feels like no one understands her burden and she is unappreciated etc but to be honest I know her pain it's sad but I kind of hate that if she doesn't help out I'm put in her position. I am caught in between a rock and hard place like do I throw myself under the bus or do I continue to do what I can and watch my mom drown.

notrydoyoda Aug 2018
Being 23, I assume that you have graduated from college. Find a job, save money and move on with your life. I agree that you are being used by people who don't want to face reality.

Ahmijoy Aug 2018
If you truly have no say in Grandma’s Care, no one listens to you, and Mom doesn’t want to hear about a facility, then you are being used. You are “paying rent” by caregiving for Grandma. This is not fair to you. You are young and should be enjoying your life before you settle down to have a life partner and maybe kids. Start saving money now so you can get at least a studio apartment. You’ve put in as much time as you should. Mom’s family is obviously MIA. She won’t do anything about that. Nothing you can do. If you leave, she will pretty much be forced to “do something”. No one can blame you for wanting your own life.

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Ahmijoy Aug 2018
I absolutely love Sue’s answer. Felt like standing up and cheering! I echo the advice. Something needs to be done before your mom crashes and burns. Not all facilities are dirty rat holes with staff who abuse their residents. Just because someone had a bad experience with one facility doesn’t mean they’re ALL like that. That’s why the family tours facilities. That’s why the family visits at different times. That’s why families call Care Conference meetings.

I agree and said before that Mom needs to meet with her family. To do nothing and continue down the Burnout road isn’t an option. My health has deteriorated so much since Hubby became totally bedridden, I totally agree that 30-40% of caregivers don’t survive their LO.

Convince your mom she needs help. Doing nothing will solve nothing.

SueC1957 Aug 2018
Honey, if you think you are tired when you come home from work at 23 years old, think of all of the caregivers your mom's age and older that are still working and get to come home to another 16 hour job. Or they have retired but are a 24/7 caregiver getting no rest or respite let alone anything else.

Many caregivers on this board are doing it ALONE. And you can see how easily it will zap the very life out of you. There is no such thing as "free time".

Older children in their 60's and 70's are caregiving their very old 80's and 90's parents. It can actually kill you. Most caregivers ignore THEIR medical problems to concentrate on the loved one they are taking care of. Then their health goes down hill and the loved one needs emergency placement in a facility while the adult child c/g struggles to regain their health. Sometimes they don't make it. They say 30% of caregivers die BEFORE the loved one they are taking care of.

There is no shame in placing a loved one in a facility with 3 shifts of fresh caregivers that get to leave after an 8 hour shift, then eat regular meals and get a good night's sleep-unlike you and your mom.

Do not wait until your Mom hits total burnout to place your grandma in a care facility. Until that time, you need to give your mom a break in the evenings. Is anyone else available (your dad, brothers, sisters, neighbors, other family members)?

You both should call a family meeting of her siblings. They need to step up to the plate and HELP. If not, discuss plans for admission to a facility with them. That might get them off their lazy butts.
MissMillennial1 Aug 2018
Thanks for replying. I have no say so with anything that involves my grandparents. Even if I chose to just stop helping care for grandma, my mom would still continue to make sacrifices so that she is fine. That's just how she is.
KrazyKat Aug 2018
Dear MissMillennia;

My opinion,
Being a caregiver for someone is one of the most under-rated, unappreciated, self debilitating, life sucking responsibility that one can have. BUT on the other hand it is one of the most blessed, compassionate, unconditional loving things you can do for someone and rewarding to your soul in the end.

It can definitely and almost always will take a toll on the caregiver(s). Some people can handle it and some people cant. It's as simple as that. Sometime things happen in life that you do not like but hey that's life. You can always choose to not help but i don't think your that type of person. Your a good daughter and granddaughter. Your just feeling a bit low right now.

My suggestion to you is this.

* get a calendar and work out a schedule in advance with your mom. agree upon who gets what weekend off and stick to it.

* are you living at home free of rent? if so then you should help out. but again make a schedule so each of you knows when your free time is so that you can take full advantage of it.

* Share the love and try not to be resentful for now. When the time comes to put your grandma in a nursing home you'll know it and you wont have guilt or feel that bad because you and your mom gave it your all for as long as you could.
And that's saying a lot.

Some people put their relatives straight in a home and forget about them and that to me is not good for your soul and what goes around comes around.

Good luck to you and be strong at least for now. =0)
MissMillennial1 Aug 2018
Thanks for the reply. I believe in karma also and yes I do live at home rent free. I am an only child and I know that my parents don't have to be as supportive as they are. I know that I am blessed. I do help out maybe not as much as she would like. I think the schedule thing is a good idea but at this moment in my life I don't have a life smh. Thus making my mom and dad not purposely but most of the time making plans just assuming that I will be at home to care for grandma. Then when they leave my mom ends up bringing me back something that she knows I like. I think she feels guilty when she leaves me in charge because she knows how big of a job it is. I don't know.
Ahmijoy Aug 2018
I know that it’s not easy to make the decision to put Grandma in a facility. Has your mom talked to her family and told them she needs help? Even to have a home health aide come in a few hours a day. This will only get harder as Grandma’s dementia progresses.

If Grandma goes to a nursing home, you won’t be abandoning her. You can visit as much as you want.
MissMillennial1 Aug 2018
Thanks for replying. My grandma had lots of children ,but had less females than males. The men can only help out so much because she needs to be bathed and taken to the rest room as well as cooked for, and "persuaded" to eat ( basically the whole enchilada) which makes them uncomfortable plus some of my aunts and uncles live out of town or have passed away. I'm not saying that they couldn't help out more because they could definitely do more but because they don't live in the household with us they don't really understand.
notrydoyoda Aug 2018
It sounds like your grandmother's dementia/alzhiemer's has reached the point where she needs a nursing home. Unless she has a LTC policy and some money, it is likely time to look into getting her Medicaid and a nursing home that takes Medicaid pending. Has her doctor said anything about her going to a nursing home? Does your mother or you have medical or durable POA for her?

If a nursing home is not a possibility, is it because of some promise that your mother made to her mother about keeping her out of a nursing home? That's not fair, if this is the case.

You do need to move on with your life and prepare for your own older years. I wish you the best.
MissMillennial1 Aug 2018
Thanks for the reply. My mom didn't promise anything to her mom. We previously lost my other great grandma on my dad's side of the family who was doing really well, until she was put into the nursing home. Although her daughter which is my grandma spent just about all of her off time there, we still saw her slowly spiral down. She started to get bed sores and everything also. I think after seeing how it affected her she promised herself that she would go above and beyond to make sure that her mom never goes to a home.

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