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For those of you who are caring for vets, the VA offer 30 respite days a year for caregivers. Remember caregivers are people to and need to care for themselves
Look Ken, I know you love your precious Carolyn. If you didn't you would have left long ago, but you also have to love yourself. If you need permission, I hope you will accept it from me. I give you permission to have a chance to venture out and make friends; breath in the air and hear the birds sing. Don't spend all of your time in your head or as a caregiver. Live doesn't have to be grand, but it should have those moments that give your comfort and pleasure from simple things. Take some walks. It will be good for your health. See the beauty around you in nature. Join a writing group. I think you would have so much to share and it would be a gift to many. You don't have to be anything more than yourself, but you do have to have the space and time to be who you are.
Carolyn is young. I believe in your profile you said she was 59 years old. I hope I have that correct? You need to find support and a better way to manage the years you have ahead of you together. If you are inclined to write, I think Carolyn would love to listen to your stories. What every your interests are pursue them in meaningful ways. You can write at home and then meet with a group once a month or whatever. You can take a painting class and play around with it at home. I think these creative avenues are amazing escapes and bring you a respite in themselves.
Number One: You need to get some help in managing Carolyn's care. It will be good for her to have that help and it will be good for you to enjoy other possibilities in your life.
Don't do it because it will make you a better care giver to your partner. Do it because you deserve and need to experience your own life.
Love and best wishes to you. Please stay in touch. Cattails
my hotel reservation, all I have to do now is hold on for 3 more weeks and Disney World here I come!! Like Jeanne said above, guilt will always be there. Just know in your heart you are doing your best for Carolyn and by doing your best for YOU, you will be!
The short answer is "No."
Sorry 'bout that, Ken, but everything I've seen makes me think that a certain amount of feeling guilt is inherent in the caregiver role. It is not logical or rational or deserved, but it is there. There is a little bit of survivor guilt, (why does she have this awful disease and I'm still relatively healthy?), a little bit of inadequacy guilt (I should be able to be more patient!), a whole lot of unreasonable self-expectations (why can't I get by on three hours of sleep if she needs me all night?), and on and on.
Personally, I think that the best we can do is acknowledge the guilt, send it to a back corner of the brain, and get on with doing what we need to do. You CAN be an excellent caregiver and have a life and do activities that please you. You just might not be able to do it guilt-free. But, hey, the guilt is going to be there no matter what, so you might as well do constructive things.
I'm going to repeat ladee's suggestions and urge you to find out every possible program Carolyn is eligible for. One good place to start is Social Services in your county. They can do an assessment and make suggestions. If you have a case worker yourself, ask him or her for some guidance on where to start for Carolyn. Making sure that Carolyn isn't neglected should make it a little easier to have a life without delibitating guilt.
Tell the guilt to pull up a chari and make iself at home, because you've got other things to do. Get a life and begin activities that please you.
Good luck, and please come back often and let us know how this is going for you.
You absolutely need and deserve respite time away from caregiving; everyone does. It is a must in order to survive. Hoping you find some help. Good luck to you and take care.