My grandmother has 5 children, 15 grandchildren, good financial resources and her home is that gathering place for our whole family, my cousins come through to stay a few day routinely, some every few weeks, some a few times a year. Two of her children live nearby and visit routinely, and my aunt lives 5 hours away but will come and stay for a week or weekend every few months.
My sister and I have lived with my grandmother on and off for most of our adult life (I am 27,) and the care that my sister and I have provided has given my grandmother a very smooth transitions from independent adult to dependent senior. It has worked well for all of us, my grandmother got loving care and company (her husband, my grandfather, died over 40 years ago, when the kids were very young) and my sister and I had a home base while we were in school, sorting out early relationships, etc. But in the last year I have finished nursing school, and my grandmother's needs have intensified, and her mood has darkened. She is unhappy with all the food brought into the house and cannot/will not understand that she is no longer capable of cooking for herself (she is physically weak from arthritis, and is very forgetful and easily confused.) She complains that she is lonely when no one is visiting and that people are to noisy and disorganized when her family is around, she is insulting to some of my cousins and their spouses, calling them fat and sneering about them behind their backs, these judgments are not out or character, but she is so much less subtle and no longer expresses any regret or caution when she say such mean things. I feel like my love for her is being pushed to the breaking point, I desperately want to move out and start my own life, my sister needs to focus on her new marriage and career, and my mother and aunt are also busy, enjoying post child freedom, starting new jobs and projects. My mother has hired I house keeper to come in two morning a week, and she is working out well, but the implications of this have upset my grandmother, as has my request that my uncle come and cook dinner every sunday. I feel like my grandmother's decline must be due in part to my impending departure, and as I have no marriage planned, do not plan to have children, start a family etc, that it is foolish of me to place my meager life plans (live alone and knit and garden a lot) ahead of maintaing maximum stability for her in the last years of her life.
Aside from arthritis and increasing confusion and memory problems she is in good health, and could live for another decade. I feel like at the end of that time I would be a shell of my self and my life would have passed me by.
I want to be able to go visit my boyfriend with out having to notify my mother/sister. I want to enjoy the dinner I've cooked without someone complaining about it, I want to plant a garden without someone coming along behind me and removing my labels and planting on top of what I have planted, and I want to invite my BF over and have some privacy, without family likely to drop by at any time and without having interrupt our evening at 9pm to check if grandma has taken her meds.
Mostly I just want some time alone, and not have to listen to her litany of worries and complaints (the same every day) after I get home form work. And I want to enjoy her company again, she used to be such a wonderful woman.
What should I do?

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Hey Thyme. I am in the exact same situation, only I am caring for my Grandfather as well. I am moving out. I'm 25. You see, you and I will be taking care of our parents some day. They all got to live their lives. We deserve ours too. You know what I started doing? I told my mom what she needed to do and that I was moving out. And guess what? She doesn't have a choice now, since I'll be gone sept 23rd. This is not our job. We are at that part of our lives where we need to be building our own life. It's not fair for our families to expect us to be the main caregivers. I tried, and I'm moving on. And it's okay for you to do this too. Don't let people guilt you into staying, that is manipulative and unfair. It's great that we tried to help our Grandparents, but we can't neglect ourselves. I am in the process of getting home health care in the home so that I can leave. My Grandparents are too mean and nasty for any family member to tolerate living here. If a nursing home is what they need...then that is where they will go. I am not a medical dr nor am I a psychotherapist. I am just a granddaughter who wanted to help, and they need much more than me. Hugs and good luck. Live your life. Let her children take over her care because one day you will be caring for your mother and you can't give your whole life over to caregiving.
Helpful Answer (11)

Oh my goodness I can totally relate to what you are saying, my sister and I lived with our grandmother for about 10 years, she just passed in February. You need to set some guidelines for yourself. My sister and I worked off each other the last 2 years when her health really started declining and yes she complained but as my sister put it well pick your battles with her. Sit down with her and make the grocery list include her it worked for us "Grandma what would you like from the grocery store" if it takes a couple of hours then it takes a couples of hours. She may feel her independence has been taken away. When you cook include her "Hey grandma, can you tell me how to make......" or if you have something that she can stir, mix, easy cutting bring the ingredents to her let her help prepare the meals. That is what we used to do with our gradmother. Maybe if she feels included in something she wont be so fussy or complaining when family members come over.

As far as guilt about moving on with your life, I thought that SO SO SO many times in the two years, for me the decision to move on with my life would result in her going into the nursing home and that was something I wasn't going to put her through, I gave up my life to make sure she stayed home till the end. Looking back I would NOT have traded it for anything in the world. If she were still alive I would still be doing it. That is something you must really sit back and think about. YOU AND ONLY YOU have to handle the outcome good or bad. If you choose to stay and continue to care for her will it be easy no you will feel stressed, tired, exhaused, overwhelemed, but you did it to the best of your ability. If you choose to move on that wont be easy either but you will be doing that to the best of your ability.

Now my sister worked a full time job in the day time so what we did that worked for us like I said we bounced off each other. I stayed home and took care of her from 730am-600pm then when my sister came home we had dinner touched basis on what went on through the day usally we on her way home from work, then I would go out and do my thing till 11 or 12 at night go to my aunts, church, walmart, something that got me a break but I could have my life as well.

I hope this helps you out.
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Thyme, part of me wonders if your grandma hadn't become difficult and cantankerous would you still want to move out? What if she had stayed the same, would that have made a difference or is it just time to move out? I think the answer to those questions might shed some light on what you will do. It was a wonderful thing to have a grandma so willing to have so many people come and go thru her house for as long as she did. Those are memories that you will never forget.
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I can relate. My mother is in asst. living. But I have no other family to help or support me. I have been dealing with her many health, financial, mental, and practical needs for about 5 years now, non stop. The SAD thing is there are 3 other siblings who dont even pick up the phone and call her. So, I feel like I have to meet all her needs with no support. I am thankful she
is in Asst. Living and am getting them to do alot of her follow up dr. appts. I am very concerned about what this is doing to my health. It is important for you to take care of yourself. Life is too short to feel it is always grueling. I struggle with this. So, I am taking practical steps to improve my life, while making sure my mother's needs are met. I have to! Perhaps you should sit down with your family (at least you have support) and work out a plan perhaps to get her more care so you can have a life. You at least, are young. I am 53, and want to live. My teeenage son has been neglected because of some intense seasons (hospital, rehab stays). And he has gotten into trouble. I have to make changes and you do too. We may always struggle with guilt, but if we know in our hearts we have done what we could, then at least we have that.
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OP here,
thanks to everyone for your answers, all gave me some much needed perspective, from others who are also caregivers, something I've been feeling a lack of. Particularly helpful was the question of weather or not would would want to leave if my grandmother's moods had not become so difficult. hearing this reminded me that I have planned to move upon graduation since I first moved in, and also that my grandmother has in that past been very consistent in saying that this arrangement will only last as long as it is beneficial to both of us.
I was feeling quite lost when I wrote this question, and the intervening days, conversations with a few family members and all your thoughtful answers have made me feel on firmer ground.
So as soon as I find a position that allows me to do so I will be moving out, and my aunts and uncles will have full opportunity to benefit from the growth experience that is care giving.
Also, thanks to the people who mentioned that a simpler existence might be less upsetting for Grandma, I'm not sure how this would be implemented in my family, but it is an important thought, that the warm but sometimes loud and chaotic bosom of family may not be the best place to live at 90.
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I totally disagree with darleeng096 because Thyme is a granddaughter and her sister. They are young women and need to live their own lives. They have already done much more than any grandchildren I know. IT IS THE poor Grandmother's CHILDRENS PLACE TO TAKE CARE OF THEIR OWN MOTHER. What the hell is wrong with them? Very selfish of them. Grandaughters PLEASE go and leave it with her own children. Then you and visit as you are able and I know you love her dearly. I have helped 2 days a week with my bedridden mother for 3 1/2 years along with my wonderful stepfather of 16 yrs, who is now 92. I know how you girls feel. I was there for my mother untill this past Dec when she passed. I out of 3 other siblings have been the ONE.I never regreted a moment because she was my Mother ( not a grandmother ). I also took my disabled brother 68 in for past 3 yrs now. I am so tired and fried because he has 3 grown children and not one has been here except one and only one time. I have to get my life back now while I am still healthy. A parent and child is one thing normal to stand by each other but all the rest is bs. Not fair period, no matter how much we love family members. Do not feel quilty, its your parents responsibility!!
Helpful Answer (3)

@ Karentaylor, OP here
My condolences on your loss, and my thanks for sharing such a recent loss. Your home must feel so empty with her gone.
It is this sudden end, in part, that makes me want a little distance, when she is gone I want to remember her whole life (or the last 27 years anyway) that I got to be a part of, and I want to do it in a place where I will not be crushed by the absence of her wandering, bitter, final incarnation.
and before her passing I want to be some one she is happy to see again, rather then the chiding task mistress I must now be so much of the time.
again, my condolences, remember your love for her, your love that was expressed every time you used a fantasy of escape to get you through another day caring for her when she needed you. Bless you and be well.
Helpful Answer (3)

My heart goes out to you. You are young and have done what you could, but I don't think it's unfair of you to want your own life. I think it's time for others to step up and take some responsibility. I am a little over 7 years into taking care of my mother, a stroke survivor, but I am her only child and I don't regret any of the time that I've spent taking care of her. I would be lying if I said I am thriving, though...I am near exhaustion at times..and at other times, feel completely overwhelmed. But, taking it all into consideration, I wouldn't have had it any other way. I love her dearly and wish I could give her the health and the quality of life that she deserves, but I am limited in the fact that I am one person...not trained medically, and I am tired. I don't want to have any regrets, though, when her time I keep plugging away at it. I've taken to writing my feelings down...trying to cope. Good luck to you...I hope that the other's take over and give you some much needed time to yourself.
Caregiver's Lament

I'd like to set aside a minute,
To see if there is pleasure in it...
To take a cleansing breath so deep,
That I'll forget my lack of sleep.
I'd like to set aside an hour,
To prune a shrub, to plant a flower...
To find a hidden shady nook,
Where I could sit and read a book.
I'd like to set aside a day,
To give myself some time to play...
To take a stroll around the park,
To linger out, way after dark.
I'd like to set aside some time,
To paint a picture, pen a rhyme...
Regain a bit of sweet control,
To do those things that soothe my soul.
Helpful Answer (2)

I have taken care of my mother in my home for eleven years, and in that time my husband died. I also took care of my autistic brother for the same amount of time, as my mom could no longer do it. My brother was diagnosed with cancer and given 6 to 9 months to live. Treatment was not an option. Hospice advised me to move my mother as my brother needed me more right now, and found a wonderful foster home for her about 20 minutes away. I moved her there and took my brother on a dream vacation to Hawaii for 10 days. He died approximately 2 weeks after we returned. It hit me hard as we are 1 year apart and he was 61!!! The downside for me now is I am now faced with moving on alone and am trying to figure out what to do with myself. When you have lived serving others and never putting yourself first, you don't have the hobbies or friends you will need to sustain your golden years. If you are young (under 50) don't make the same mistakes I did. Your grandmother had a full life, now it's your turn. Live your life and visit her once a month.
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Your grandmother is fortunate that she's been able to stay in her own home and have the companionship and care that your sister and you have provided for so long. However, with her diminishing conditions, I think it's finally time that her children step up to the plate and assume their responsibility to their mother. They need to come to terms on how her care will be handled and take you and your sister out of the equation. As hard-hearted as this may sound, It is a responsibility that they need to assume. I have a similar situation that involves siblings that claim that they don't have much time in their busy lives and cannot share much of the responsibility of caring for our elderly parent. Putting your life on hold and not pursuing the normal things a 27 year old could possibly cause you to miss out on opportunities and may lead to bitterness. I don't think it's unreasonable that her kids provide the assistence she needs.
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