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I know that you love your mom and you should try not to be hard on yourself. It is a natural reaction , you do not your LO to suffer anymore. I will be praying for your and your family. Please keep us updated.
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ExhaustedLady....NOTHING!!! That is what is wrong with you.. I have only taken care of my mom for 3 years and I feel the same. I love my mom, but we too have turned our lives around so we can take care of her. I have not been able to work now for the last 3 years and so my husband has had all the weight thrown on him to take care of the house payment. I feel for you and can't imagine 11 years!!! Kuddos to you and a hug. You are not alone in your feelings.
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If there is something "wrong" with you, then it's wrong with me too.

My Mom just turned 100. Mom has been living with me for three years; I've been taking care of her for nearly six. She has advanced dementia. Fortunately, my Mom is able to do bathroom duties herself (as best as she can, I suppose). But, as a single woman of 73, I am exhausted and wanting it all to be over.

She has no life and neither do I. We are both miserable. She wishes to die -- has said so repeatedly not only to me but to others.

I don't know what you mean by "proactive and active death." I keep wondering how long this too will "drag out."
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MrsHoover Nov 2019
Wishing you the comfort of knowing you were there for her and also knowing that you could have 25 years left to give yourself a wonderful rest of your life. xoxo
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I brought my mother home from a nursing home about 7 years ago. I am the youngest of 4 children, I have 2 sisters and a brother. I was the youngest son by some 7 years between me and my brother, and 15 years difference from my sisters. I took on the task of caring for her for a variety of reasons and quite frankly, expected it to only last a few months. It lasted 5 years. She was bed ridden, use of only her right arm, severe dementia, in diapers... some days I thought I could go on no longer. I washed bed sheets for 5 straight years, everday but one when I was so sick with flu that I just could not get up. I made sure she had Christmas, and Thanksgiving dinner, a nice birthday each year, played her favorite Elvis songs for her, made sure the television was set on what she liked... I did everything, all while raising my daughter alone, she was very young at the time. I cried alot. I cursed alot. And then cried some more. But I got up every day and did the best I could. She was my mom. She was a heavy drinker most of her life, and she made some really poor choices when I was a kid that still effect me to this day and sometimes I wonder how my dad was able to deal with her... he died about 10 years prior. But she was my mom and I did what I had to do. She passed away 2 years ago. And I would give almost anything to just have one more day where I get up, fix her breakfast, take care of her and just talk to her. Everyone has to do what they have to do, and sometimes it is not always about you, or what is best for you or what is right for you. My dad had a stroke and 2 months later he was gone, with my mom, it was a long, hard, sad process. It was tough, so I understand, and this may not help you in the least, but when they are gone, they are gone. And you will feel relief, I certainly did. But the one feeling that continues to this day for me is the hope that I did enough and the belief that I did the best that I could in a tough, sad situation. And I did. And you will as well.
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MrsHoover Nov 2019
You were a wonderful son. God bless you for your devotion. I'm in year two as sole caregiver of my husband (vascular dementia, bedridden, feeding tube, incontinence), with five before that of decline but I can't imagine a day without seeing his sweet face. Thank you for your promise of comfort knowing I have done the best I could do for him.
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The last thing you should feel is any guilt. The only thing wrong with you is that you are totally exhausted. I can actually hear it in your letter. Wanting it to be over for you as much as her is understandable. You and your family have given up everything and it's been 11 years now. I'm not sure how your back and body is holding up with all the physical care you've had to give her. If 24/7 care is what you "must" do for her (I'm talking due to financial reasons), then I suggest that you talk with the office on aging in your local county. They can arrange for in home help. You can get someone to come in and give you a break, all morning, or afternoon, to allow you a chance to have "me time". Please look into it. Other than that, you need to find a place of solitude and have a good cry. I feel for you dear heart.
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ExhaustedLady - I hope that you mom will go peacefully and soon.

Some people will tell you they wish their parents were still alive so they could take care of the parents one more day. Yeah. Sure. One more day, yes. How about one more decade? They weren't saying that when the parents were alive. I haven't read anyone on here saying: "I want this stressful burn out care giving situation with my demented parents to go on for another 10 years." Nope. Haven't seen that at all. So, don't let those people make you feel guilty about wanting relief.
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NOTHING IS WRONG WITH YOU OTHER THAN BEING NORMAL - you have joined the many who want the pain to go away for our loved ones and ourselves who watch it unfold

I sat beside my dying mom's beside & realized we treated our dying cat better by just helping her to go than we, as a society, were treating mom's body which needed to be drugged from the pain because her mind had left some time before [dementia]
 
Your mom is important to you but so are other members of the family - it is exhausting having so many silver chains of love pulling in so many ways but try to remember that without all those tugs at you just how barren your life would be -

There is life after care giving but you might be surprised at how much of an adjustment it can be - try to look at pix of the good times when you were a child to help reset your mind's image of her - a good part of your present routine is focused & centred on her so expect start doing a caretaking task automatically & then remember you don't need to do it anymore .... that's when it will hit you the most that she is gone

I wrote up a paper that I gave to everyone at the funeral of '10 things you didn't know about mom' & I included her quirky hole in one in golf - most liked it better than the 'official' one from the funeral home
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Nothing is wrong with you! You are exhausted, physically mentally and emotionally! The job of the hospice is to do these things for her! Please don't feel guilty and please don't feel obligated to do what the hospice is supposed to be doing! My other suggestion is to limit the amount of time you're there and maybe focus on the quality of the time that you have with her! You are doing great and you have nothing to feel guilty about! God bless you!
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Nothing is wrong with you. I would feel the same way!
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You have certainly devoted yourself to her, I'm sure she has felt very loved and taken care of which she will take with her. I helped take care of my mother-in-law who had dementia and was incontinent-bathing and dressing. She had fallen and ended up in the hospital. The doctor wanted to know if she was sleeping more than normal-which she was-he said that was a sign, when they sleep more. We know when they pass, it's for the best-it is a relief for everyone. I knew I'd miss her, but I never expected to feel this empty inside. Does your mother communicate with you? If so, go down memory lane with pictures with her-I forgot how she used to be-since I was so care focused. When the end comes, I hope you have a sense of peace about everything. Take Care <3
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You are burnt out. In the attempt to meet all of mamma's needs, your needs and your husband's needs have gone unmet. No wonder you're counting days!

Talk with your hubby about needs that your each have that are not being met: intimacy, date nights, time with kids, time with grandchildren, time with friends. time to relax…. Discuss a way to get those needs met while also making sure mamma's needs are met. It is OK, probably more likely vital, that you get time off from providing care.

As an RN, I have taken care of many patients in the process of dying. Some hold on until all family members have come to say good bye. Others hold on until all loved ones are gathered with them. Some need to know that it's ok to let go of life. Some need to know that any "life work" or "issues" are being taken care of. And some want privacy at the end and will wait until all people are out of the room.

God seems to work out the timing with most folks to fulfill "the need". However, nobody - except God - can tell exactly when death will occur. Stop waiting for the inevitable and make lie enjoyable for mamma and yourselves.
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Nothing is wrong with you. It's a perfectly normal dilemma facing primary caregivers to difficult and seemingly immortal elderly parents. How old is your Mum? If she's 90+ I feel your pain, although my Dad is 84, he has become so I find myself sharing your thoughts, and yes, I feel bad about this, but we are human and sometimes our feelings overwhelm us. I don't know if you're religious but I'm Catholic, and lately when I get these thoughts, I'm ashamed to ask for help or even go to church, because I feel God is disgusted with me for thinking these thoughts about my father.
We just have to be strong
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ExhaustedLady: There is not one itoa wrong with you. You are on your virtual last ounce of strength, dear woman. While certainly this too will end, you need respite and you need it now, else you'll not be able to rally. Start with your town's social worker. Prayers sent to you.
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Please realize you aren’t alone! I feel like the worst daughter when I have the same thoughts. The exhaustion comes with the constant caring- you deserve a huge tiara or at least some you/ you & hubby/ you,you,you/ time. I look at what finances are available to get help, I’m angry about my ex-spouse saying that I live for my job and my mom, and I’m guessing that much of your life is not yours. Do not feel guilty about all of what you have given and the need for your own sanity and survival!!! XxBeen There, Doing It
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This question generated a lot of response, Exhausted. I think a lot of us related to you and wanted to share some support. I’d like to share a portion of a poem that I read in this book, ‘Holding the Net, Caring for My Mother on the Tightrope Of Aging.,’ by Melanie P. Merriman.

“I wondered so often how her death would come, and especially when, how soon, how much longer,
And how it would feel, will there be pain? How will it end? How will it feel? And when?
And how much of that questioning was about her, and how much about me?
When she came to live nearby at age 91, I couldn’t keep my distance anymore At first I thought the burden would crush us both
I resented the new anxieties she added to the ones I had been cultivating all my life in the garden she helped me plant long ago.
she came to live nearby and her fears and needs came to live in my head alongside my own.
I often felt there wasn’t room.
my actions were exemplary, and I flatter myself that she never noticed any flaw in the feelings behind them. Her smile always showed the purest delight in seeing me, especially as she became less and less sure when she had seen me last.
I longed to feel the same delight, unsullied by any thoughts less worthy.”

when I read that, I felt like somebody understood me. I hope you feel that, too.
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You have been heroically devoted, but...

1) You are damaging your own health.
2) Your mother's needs at this point can be better met by round-the-clock caregivers than exhausted family members.

It is time for in patient hospice.
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Is hospice a option at this time they can be of great assist.i am a caregiver I know what you are going through.🙏
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Exhausted

How are things going?
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Have you told Mom it is ok to go if she is ready and that you will miss her but you will be ok? My mother had told us she was ready to go but that last day was fighting for every breath. Within a couple of hours both my Aunt & I told her it was ok, that she didn't have to fight any longer and that my dad and her other family members were waiting for her. It wasn't long after that that she took one last big breath and held it. When she exhaled she was gone.
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There is nothing wrong with you. When we see our loved ones suffering we know their time is short & we don’t want them to suffer anymore.

My Dad had cancer & I knew he was suffering & there was no hope for improvement. The night before he passed he went into a coma & I went home & prayed for God to take him.

It was time & I knew it was for selfish reasons that I wanted him to keep going.........I didn’t want to lose him.
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Exhausted: Edit - There is not one IOTA ....
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There is nothing wrong with you. Caregiving is extremely stressful. Especially when you want to give your love one the best of you, and the best that you can give them. However, once they are on hopice it breaks your heart to see them suffering and you want them to cross over so that they can be free of pain, and also to give you peace of mind that they are at peace. You feel guilty when those thoughts of "How much longer Lord before they pass." enters your mind. But, it's okay and nothing to feel ashame about. Trust me, they are feeling the same way. But just know that they are not going to transition until God has fully prepared them to cross over.
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Hospice aides are available to bathe mom and a bedside commode is much easier on caregiver and patient especially at night. I made a cover to put over my mom's during the day with a chair cushion and it looks (and is used) like a chair. I also bought a battery operated doorbell, the chime is in my room and mom has the button to push if she needs me. I was a geriatrics nurse for 20 years but, I'm disabled too and have limits. Can you delegate some help from the kids and grandchildren? My 6 yr old great-great nephew loves checking on Granny, giving her the mail, delivering a snack. Have a family meeting (without mom's knowing or hearing) and tell the family that you need help. Can't one make 3 extra servings once a week for you, mom and spouse regularly. Do the shopping every other week, change the sheets on all the beds, wash n dry them once a week. THAT'S what family is for!
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