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My sweet Granddad (89) had a stroke several months ago, and being the only single family member, I became his full-time caretaker in his home. I volunteered with the knowledge that I would have support from other family members (18 in total, 14 in town). "Support" was actually meant mainly in the figurative sense, instead of the literal sense that I took it under, as I was told a few weeks ago after I pleaded for help and suggested starting a rotating schedule of 3-4hrs every other month from each person to give me a break, and them valuable time with him.
My mom and Aunt (his only children) help with most dinners and clean up (thankfully, because I apparently can't cook...), and on occasion, a cousin also brings dinner... as well as their very energetic children.
I'm with my granddad 24/7, helping with anything from transfers, bathing, home therapy, taking him to appointments, outpatient therapy, and putting up with a friend he adores, but annoys me to no end.
My granddad is the sweetest person you could ever hope to meet or take care of, served in WWII and loves to tell about it, and I've never heard him say anything bad about anyone (knowingly, until the stroke).
What I'm having a hard time with is the fact that I (27) put my life on hold thinking I would have breaks given by family, but that didn't happen. We finally started a respite care, but now he wants to get rid of it because it either is too much money to spend, or he doesn't like having a new person each time and thinks it's pointless to have someone "baby sit" him, as he puts it.
I feel like, yes, I'm here for him and his needs are what matter, but what about ME? I feel selfish for even saying it, but I want someone to care about my needs and my sanity! I'm not one to stay grounded in one place for long, and I don't like being around people all the time, even if it's my sweet granddad. I feel stuck. And I want out, but the alternative, a home, is not in our price range.
I have good days where I feel like I can keep going just a little bit longer, and then the really bad days where everything and everyone annoys me and I want to pack up my stuff and leave.
I'm thankful that I have a creative job that I run from home, but I can't get everything done in a timely manner like I need to because I'm constantly answering questions or getting up for something that he "needs" and won't get himself. And I'm quickly getting burnt out on everything, including my art...
I feel like I should just suck it up and take it and appreciate what help I DO get, but if I do just suck it up, I'm going to go insane and I want to do what is best for BOTH of us.
Apologies for the rant. I'm glad I found this site for caregivers to help me realize that I'm not alone. No one can truly understand what we go through, unless they have been through it themselves.

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Unfortunately, the stroke affected his vocal cords, so he is unable to speak clearly or loudly. I would love to be able to voice record the stories.
Thank you for the link!
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Instead of writing down his memories, voice record! I recently installed Easy Voice Recorder App on my phone for my daughter to do interviews. The Library of Congress is encouraging people to submit the interviews for use by other people!! http://www.loc.gov/vets/vets-home.html Please do the paperwork and participate, he would have valuable insight!!

Perhaps this project could be your art for the time being. It would be a fantastic way to collect data for a Master's in History at a small college nearby. You could collect and scan in old photographs as well, write it up, and that would be your thesis. One of the professors at a small college has "adult" grad students although I have no idea how much this costs. Perhaps your family would be wiling to contribute to your educational funding?
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That's on my list for my dad.
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Yes! He got to go a few years ago! Such an awesome thing that they do!
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You are such a loving granddaughter and it shows. Google the freedom flight, might be something of interest, don't know if it is in your area.
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Thank you all for your comments.

Patrice, thank you for your comments, as well. I did make a mock schedule and sent a fb message to everyone telling the exactly what was needed and why, but it was shot down.

On another note, I just learned how to tie a tie. Why? He has a WWII recognition tomorrow and I wanted him to get to wear the tie he wanted (we've been using clip-ons). THIS one, has the Raising of the Flag at Iwo on it, which he got to see in real time! :) Next week, I hope to go through some photos from the war with him and write down what he has to say and the memories that he has. I want to be able to get as much recorded as I can before he goes. I really don't see him lasting too much longer... Which is why I want to hold on for him. I want him to be as comfortable and happy as possible.
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I just wanted to say that you will have no guilt when this is over. I still would encourage a family get together, perhaps mom and aunt could provide some food. After eating and chatting, say something like while all are here I want to show you the schedule i made and where I need help. You put everyone on the hot seat, so what. Either they will help or they won't. You could set schedule up monthly, weekly,?whatever works then email to all at the end of the week for the following week. My favorite saying is expect nothing and you won't be disappointed. If that all falls apart perhaps you could find someone in the neighborhood or from church to come and help you out. You would, of course, need to pay them but at least would have the same one or 2 people come each week. For me caregiving was very rewarding, good luck with whatever you decide to do.
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As you can read on this forum, often siblings don't ever come thru with help, no matter how upset you get. You're blessed with such a lovely gpa and he is blessed to have you. Just tuck in the back of your mind that caregiving for an elderly loved is a fluid situation and you have to be ready and able to adapt to the changes. ff is right - pls start thinking "what if" and putting together a plan for when you need more help.

About your art - my dad was a gifted artist, but when he was stressed and tired, he had no heart to create. Take care of your gift.
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Star, if you read other forums here on this site, you will see that there will come a time where having a home base business will not work out because the person one is caring for will need total time and attention. You really need to start planning for the future.
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I didn't make very clear that I have a home based business, selling my art online. My granddad loves seeing me work and even the way I wrap my packages. :) So that part of my life, the job part, I'm not too worried about. My art is what allowed me to quit my day job.

I'm not upset with my mom or aunt at all. My aunt is not physically able to help much and absolutely has to work to live, as well as my mom. My mom does come over to give me some breaks and they both understand that I need breaks. In fact, I vent to them quite often.

My cousins and brother, however, are the one's I'm upset with because they are the ones with their own families and the "no time" factor of things.

I have to say, respite came today and it was a nice break. Went and picked up donuts I'd been craving, went to Target and got some things to send to my niece and nephew who live out-of-state, and watched Downton Abbey over at my mom's and got to see my cat Picasso.

I appreciate all of the concern that has been shown here. I wouldn't be able to live with myself if I just packed up and left, leaving him with a situation he doesn't want. It's an idle threat, really, that comes up when I'm frustrated. As long as I can get the respite break each week, I think I will be okay. I just have to let go the fact that his other grandchildren won't be helping out with breaks.

I hope all of you have had a wonderful day and that you continue to see the sunshine. :)
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stargazer27, one will see smoke coming out of my ears any time I hear that the finger is pointed to the *single* child to take care of his/her parent or grandparent like that person's time isn't of value compared to those who are married or married with children.

Tell the rest of the family that you will take care of your grandfather 9 to 5, Monday thru Friday only.... but you want to be paid a salary, which includes the cost of private health insurance which is very expensive, all payroll taxes paid, and matching 401(k) for your own retirement.... because that is what you are losing by not working for an employer or by not being able to work your career without interruption.
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sorry, I thought that I was on another thread. My bad!
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Yes Linda, and that is a very common story on this site that the single person gets asked to take on the role of caretaker sometimes with promises of support form other family members but the support sometimes ends up being supportive of the idea that the single sibling does the caregiving. There is another thread with that very situation going on with a 27 year old single grand daughter and her grandfather.
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In reading my post, what I was trying to convey that in some families, it's like because they're single, they take care of the parents because the others are married. But because they're taking care of the parents, dating, getting married and having their own families isn't possible for them.
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My sister is a nurse in NH. She has a patient, 102, whose 101 yo husband lives with their 80 yo son ( a widower) and both live with and are taken care of by the 55+ yo grandson who never married. I've seen this in my mom's large family - it strikes me as a "sacrificial" single child responsible for the parents.
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Let me tell you a story. My grandma got sick. My mom was a yiung stay st home mom, grandma's daughter couldn't deal with watching her mom decline with breast cancer, so mom took care of her. Mom's mom got old and frail, and her other daughter had a career and children (we were chopped liver) so grandma came to live with us. Then my dad's uncle got sick. My father seemed to think that mom...... My mom, not an assertive person on a good day finally put her foot down. You see sweetheart, there's always going to be one more elder to take care of and another group of relatives looking to take advantage of you. PS, my Uncle lived a long and happy life in the State Home. He had plenty of other people to talk to and got decent care. And my brother and I? We got some of our childhood back.
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If you don't continue to build your life now at 27, you will very likely not have a life later on when your grandfather dies because your life will have ceased being your own.
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stargazer, I admire that you have been staying with your granddad. I worry that you are so young and in such a critical stage of your life. You need to be building your career and establishing your own family. It is like you've had your wings clipped so you can't fly away and establish yourself. I know it usually doesn't seem so bad now, but your grandfather may live for many more years. When you're 35 and you look to see yourself alone without much money, then it will hit hard. It is totally okay to help with your grandfather, but not at the sacrifice of your own future. I don't know if you'll need to leave, but you'll have to have more responsibility sharing with the family so you'll have time to work uninterrupted and to meet friends -- maybe even a special mate. Life passes fast. You don't want to give up you at such an early age.

I am not upset with your older family members, because they do help a lot and probably think all is covered. At 27, though, you have to build your own dream. If you're an artist, you need to do shows and sell your work. If you're interested in marriage and kids, now is the time. Just tell the old folks what you need so they can fill in.
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Stargazer, I believe you are being taken advantage of and you are so sweet, you just don't know what to do. There is something called boundaries that we put up to protect ourselves. Yours were taking a break because you did not realize your family would do this to you. It's time to bring them back up and make a much bolder statement. You have been USED, and I believe it's time for you to get on with your life.

Tell mom and or auntie that it's time for them to find a paid caregiver because you are done. You don't want to remember changing your granddad's diapers, you want to remember his love. That is a fine reason - and you don't even owe them one. You have gone far ABOVE and BEYOND.

When YOU can make arrangements for your housing, you go. The family can call an agency and have ANYONE replace you at a moment's notice. That random person is not volunteering, they are being PAID and they get to go home at the end of the shift.
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Returning with dread and anxiety after a one a week break following being 24/7! My goodness, that sounds like you are already on the path to burnout!

My dad has 24/7 care at his home, but it is divided up between 3 CNAs who work 8 hour shifts and thereby are able to have a life outside of work. What your mother and others expect of you is unrealistic!

I wish you the best and I encourage you to set up some boundaries to protect yourself.
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Give your family 2 week notice and get out of there! What about your job? Future? Education? Now is the time for you to be thinking about those things and not taking care of your grandfather. Your family is being very abusive. Caregiving is not a job for the youngest most unencumbered family member!
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ME TOO magnum, and I am one of them, but not 27 any more either. Still does not make me feel better about family members that not only take advantage, but make our lives a living he!! To boot!
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I am so tired of hearing the same story repeated over and over again of family members who expect the one person who does not have their own family to be the one to do all of the work as if people without their own family don't have a life or are not supposed to have one.

Yes you were misled and frankly I think you are getting used as free and convenient help. I think I'd tell the family what date you plan on being out of there and tell them that he's their responsibility.
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And you are only 27, your whole life ahead of you. You need to be thinking about and planning your future. Tell the family you will no longer do this and give them one month to figure it out. TAKE CARE OF YOU!
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Thank you, cmagnum. :)
My mom and Aunt come over several nights a week to help with meals and I retreat to my bedroom whenever possible, or take a ride on my bike if it's warm. They both take care of all bills, financial issues, legal issues, etc. and I appreciate all of that, for sure! It's mainly the care part that I'm frustrated with, as I'm the "only one" who is able to stay with him, transfer him, etc, because I'm the one without a family of my own and physically able.
I do feel like I was misled in their meaning of support, though. Sanity breaks are usually once a week when respite is here, but as soon as I return (with dread), my attitude and anxiety returns. My attitude towards things needs to change, I just don't know how, or what to do to improve it. :/
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You are right that you can't continue to do this alone. Basically, your family misled you to think that they would actually help. What they supported was your volunteering to do this so that they would not have to take any responsibility.

Where are your parents in all of this? What about any other adult children that he has.

I think they as a family need to have a meeting and deal with this so that your life does not need to be on hold anymore.

Take care of yourself.
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