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.
Thank you for the link!
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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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.
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.
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. :)
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.
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.
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.
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.
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.
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. :/
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.