As sole caregiver support for my partner, Carolyn, is it really possible for me to "have a life" without feeling guilt?

Tigger2 , My mom has the A&A funding because my dad was in world war 2 (deseased). I never hear od 30 days respite. I would never let her go anyplace but would love if I got it as home care! Its so hard to find good caring caregivers.

I have seen many good suggestions here. I was a caregiver through an agency for ten years before becoming my partner's caregiver. I saw many who were sure that no one could take care of their loved one as well as they could. Look at respite as a gift to your partner also. She would probably like to see some different faces. I agree with the adult daycare. That would give you time to yourself knowing she was in a safe place. The agency on aging I agree is a good place to start. They might be able to give you some other leads on respite.
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

Ken: I read your profile and read the post here. All are excellent suggestions. I just want to add that you must find a better way to live your life. Your Caroline has her medical issues and you have yours. Can you go on line to a Parkinson's website and find what they can suggest for support. They must deal with this all the time and specialize in helping families with this illness.

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

Ken, please believe me when I say I KNOW what you mean. I'm caregiver for my husband. I'm getting ready for my first vacation in 10 years! I daily flucuate between childish anticipation and guilt. Should I, How can I, what will people think (that's a heavy one), will he be ok? I've made it this far without cancelling
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!

Personnally I think respite is a GREAT idea or adult day care, if your loved one is able.. As new parents we think I am never going to have a life and that changes our beautiful babies grow and become independant... However when you are caring for a loved one who is ill and declining that does not happen. please take care of you contact your local AREA agency on Aging... take care, J

There many respite care programs out there. My spouse goes to a daycare for 4 hours on Tuesdays. we do need the time to take care of ourselves. Look into elder care programs in your area. I suggest Google to find out what is available where you live.

I understand that guilt feeling also and just this weekend cried a few times when I went to a small beach house for 6 hours. I just think to myself that the ALZ Support Group said that in many cases the caregiver dies first, so we need time away. Although its an uneasy feeling being away from the situation, I do believe that our loved ones that are ill would want that, and as a bonus , we are better caregivers when we get a break. Start slow, go out for an hour, and move it up to 1-2 days a week. If you can get a caring caregiver, it makes all the difference in the world Good Luck.

I would add to what the others here have said by saying that unless you take care of yourself, it will become increasingly IMPOSSIBLE for you to take care of your partner at all. While there are enormous stresses in caring for a parent, I think that the burden of caring for a partner is unique, in that you have no partner to help you shoulder the burden. For us to manage, part of our responsibility is to be our own best friend, in the way our partner once was, and give ourselves permission to do the things necessary to replenish body and soul. For me, that meant taking up running (a marathon, why go halfway? LOL!) spending time, weekends, with girlfriends, hiring a caregiver so that I could take vacations, and getting massages. This allowed me to care for my husband with patience and grace far longer than I would have been able to without those measures. Ultimately, his health has reached the point where HE decided it was time to enter an Independent Living facility, and we are in that process now. I believe he stayed at home as long as he did, though, because of the independence I had within the caregiving relationship up until this point. One final thing. There are people who will feed the guilt, and those who will nurture your soul. Avoid the former, and seek out the latter. Your job is hard enough without people throwing mudballs at your back.

"Is it really possible for me to "have a life" without feeling guilt?"

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.

My heart goes out to you for all you are going through. First of all, thank you for your service to our country - I'm so sorry you have PSTD - everyone in the military, or who has been in the military deserves our thanks. Hope you do look into all the suggestions mady by Ladee. There are a lot of services out there that often we don't know exist.

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.

Ken, your profile says Carolyn has Parkinsons... how horrible for both of you.... and with your issues on top of it all. Caregiving is a hard job under the best of circumstances.... Do either of you have any family nearby that can help out? Does she quailify for Home Health, where some one can at least come in and bathe her? Is is financial possibility for someone to come in for a few hours, even for a day? Have you checked in with your local Center on Aging to see what she may quailify for... sorry for all the questions, but not sure what you situation is and how we can help.... you have your hands full that's for sure... let us know what is availble to her and to you.... thanks and hugs...