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My mother is in the end stages of dementia where she is basically refusing to eat and drink. She has been living with me and I've been looking after her for almost 8 years. The last 5 years have been very difficult. She was placed on Risperidone for her violent, combative behavior. As a result I went from full time work to part time work (I hired a care-giver part-time while I went to work), I went from going backpacking and hiking to staying home. I went from being active with my grandchildren by attending their school plays, their sports events, etc. to staying home caring for their great grandmother, my mother.
I feel guilty because I'm relieved that the end stages is here. I'm tired of being physically and mentally tired. I'm also looking forward to a full nights sleep. (She has sun-downers). At 58yrs I can soon have a life that doesn't evolve going to work tired, coming home tired, then bathing my mother, feeding her, washing her clothes /bedding and cleaning her recliner because of incontinence.
For almost 8yrs I've been seeing to my mother's every comfort and neglecting mine. My Dr. has even lectured me on the importance of maintaining my health. (I'm a cancer survivor 20yrs now). I feel guilty for the feeling of relief that this is almost over. In my heart, I should not feel relieved that this stage of my life is almost over. I'm looking forward to entering a new stage of living my life the way I always wanted, actively and happily.

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Your mother has been so fortunate, fbrewster, to have you at her side through her very difficult journey. I hope you are feeling very good about that, and proud. Now she is at the very end of that journey. You feel relief. How could you not? You love your mother. This journey has been very difficult for both of you. It would be very perverse to want this to go on and on.

You also feel guilt for feeling relief. I guess that is natural. Where does this feeling come from? We seem to have some imaginary list in our heads of what feelings are expected of us. But tell me, have you ever seen a book of such rules? On page 92 it says when a loved one is dying you should only feel x, y, and z. You must never feel a or b in this situation? Of course not. You feel what you feel.

There are rules about our actions, though. No matter how mad we may feel at a medical professional we may not punch them in the face. If we break that rule, we should feel guilty -- not for feeling angry but for acting on that anger inappropriately. What action have you taken that you should feel guilty about? If you abandon your mother at this point, shame on you. You should feel guilty. But it doesn't make sense to feel guilty about feeling relief that this difficult journey will be ending soon.

While everything I've said is quite logical, I know that feelings don't always respect logic. If you can't avoid feeling some guilt, at least push that way to the back and don't let it control your actions.

One rule for action that most of us here agree to is to do all that we reasonably can to keep our loved ones comfortable, especially on the final part of the journey. You will go the distance with Mom. Of course you will! But you can do even more than that. You can call in some professional help to try to ensure Mom's comfort and minimize any pain -- physical or emotional. Believe me, when I called in hospice care for my husband I was not remotely abandoning him. I was supplementing my own daily care with a program with knowledge, skills, and resources I did not have on my own. Please don't let guilt get in the way of taking this practical action to increase your mom's (and your) comfort as you go through this final time together.
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Dear fbrewster,

No Guilt!
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"Nope. I've been thinking about it, but I've made it this far, I can go the distance. That will be my last gift to her and hopefully lessen the guilt I feel about being relieved this is almost over."
You're going the distance with or without hospice. Hospice just assists you and can make the end of your mom's life more comfortable. Consider it for both of your sakes. Look at hospice as a gift to your mom.
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fbrewster,
Please don't feel bad for wanting an end to your mom's suffering. It's her time to depart (as everyone has to). She will be relieved of mental and physical pain. Actually, she will be in a better place (in my opinion) than where she is now.

You didn't mention her age but I'm sure she lived a long life. She's had severe mental problems and she will no longer be tormented by them. (my FIL was on Respiradol for a psychotic episode. It's quite a ride!)

You are about to be freed from many years as a caregiver and being exhausted both mentally and physically. There is nothing wrong in celebrating your new freedom. It doesn't mean that you didn't love/care for your mom or that you wanted her to die.
You gave it your all for 8 years and now is your time. She would understand that. She would feel the same way, anyone would.
I'm glad you're still young enough to have many years of retirement to enjoy life. (Some of the caregivers on this board are in late 60's and 70's when their LO's pass on.)

Let go of the guilt. I pray your mother's passing is peaceful.
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I CAN GO THE DISTANCE

There is no reason to be the Lone Ranger here or feel guilty. People die. It’s not our fault.

For your sake and your mothers get her in hospice.
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My mom died in May and I totally understand what you mean. I had been her sole caregiver for 15 years. She had some cognitive decline, but didn't have Alzheimers and didn't live with me (she lived 1.5 miles away in independent living) but I did everything for her. Caregiving changed my life in innumerable ways. My hair is whiter than hers was and I'm much heavier than she ever was. My extra weight is from stress eating. She cared for her mom until she was in her early 50s. I'm a senior myself at 67.

I would recommend hospice - I brought them in in my mom's last week. Just having the feedback about what was going on with her physically was worth it to me. My mom was sufficiently out of it at that point to not even be aware that they were there and checking on her regularly. They gave her sponge baths 2X a week (in her bed), which relieved me of that duty. I didn't need or want the spiritual support (nor did my mom). But the medical support was great.

When mom passed, I felt great relief. And I felt at peace. I had done everything I could for her and I knew I did my best. I am just starting to figure out what I want to do with the rest of my life, now that my caregiving duties are behind me. It's a great feeling.
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Hospice can give help at home, too. Please loom into it. And please don't beat yourself up!
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Nope. I've been thinking about it, but I've made it this far, I can go the distance. That will be my last gift to her and hopefully lessen the guilt I feel about being relieved this is almost over.
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So, is hospice involved?
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NO, I've been doing this myself. I refused my children's help because my mother hated anyone caring for her but me. This is why I'm so tired. The last three years, I've not had any respite care. The only respite care was when I was hit by a bicyclist 4 years ago when I went walking during my lunch hour at work. I needed a steel plate which involved surgery on my wrist. I had my son drive up and help for a week. He has children and lives very far away. The Dr basically gives her maybe 1-2 months at best.
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Are you doing this by yourself? How much respite have you had?
Caring for a dementia patient requires 3 shifts of young, trained caregivers. How can you expect to work at a job and do this? You can't!

Please consider getting your mom into a good hospice facility!
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