Mamma is on her 11th year of living with my husband and me. Since my daddy died, our lives have revolved around mamma. We have moved twice, both times building a house that included a bedroom, living room, and handicapped bathroom just for her.

My mother just entered in-home hospice. I am bathing her, taking her to the toilet, dressing her, etc... I am feeling guilty because I want this to all be over for her (to relieve suffering) and for us (so we can get our life back and spend more time with our kids and grandkids). We are both so utterly exhausted.

I feel so bad because, today, I was looking at the average timelines for preactive and active death, trying to determine when we all might have some relief. My worst fear nowadays is that this situation will drag out.

What is wrong with me?!?!?!

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There is nothing wrong with you. The thoughts and feelings you are having are nothing unusual. You love your mother and you want her suffering to end. You know that if she had a choice, she would not want to be a burden. 11 years is a good chunk of time to devote to caregiving. If you’ve never had much of a break over those years, you absolutely cannot blame yourself for wanting this to be over.

I would have a frank conversation with her hospice team. The Holidays are coming. If she is not truly in her last days, perhaps they could arrange for her to spend a few days in a facility so you could spend time with your kids and grandkids.

Again, please don’t feel guilty because of how you feel. Sending hugs...
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Reply to Ahmijoy
ExhaustedLady Nov 6, 2019
Thank you.

You say, "If she is not truly in her last days..." How do I know? She is sleeping more, is weak, is delusional, hurting, is eating / drinking very little, and saying that "God is calling her and it won't be long." Does that sound longer term?
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Don’t feel guilty. I do this all the tine with my dad. I love him but he’s not really there and his life isn’t happy. He’s like a clock winding down and it’s taking forever. I try to just trust God and learn whatever I can from each moment whether it’s patience, trust,
compassion, endurance etc. I am trusting that it’s necessary for my own growth as a human. It makes it easier if I can know this is somehow for my benefit too and when his time comes I know I will feel light as a feather but I’m sure I’ll also feel sad that he’s gone.
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Reply to Dizzerth
Frances73 Nov 9, 2019
That's a good metaphor of a clock winding down. My father was that way, it was like he just wouldn't let go.
Nothing is wrong with you, my friend. You're exhausted & ready for all of this to be behind you, and rightly so, for EVERYBODY'S sake. You're also sad to see your mother in such poor shape, and going on and on and ON. I say the exact same thing about my own mother who's quality of life is compromised, and is compromising others' quality of life as well.

Just a note; if your mother is under hospice care, THEY should be bathing her, not you. A CNA should be coming in 2x a week to do that very thing, and helping out with various other duties as well.

Wishing you all the best as you help your dear mother transition to the next phase of her eternal life. Death is not the 'end'........just a new beginning.
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Reply to lealonnie1
ExhaustedLady Nov 6, 2019
Thank you.

I am bathing mom as a gift to her as she usually enjoys being really clean. I would even add a few drops of lavender essential oil to her lotion and blow her hair dry.

I think that is about to change. She wanted me to hurry last night as she felt really bad. She has been very weak and is hurting. So, the CNA baths might really be what she needs now.
There is a pamphlet you can read on line called ..."Crossing the Creek"
It goes into some details and the explanations are nice.
Now that your mom is on Hospice there is the ability to take advantage of a great Medicare benefit...Respite. Medicare will pay for Respite while on Hospice. So please ask the Nurse or Social Worker about that.

To your last question..statement. There is NOTHING wrong with you.
It is not wrong to wish..hope..the ordeal be over. I hesitate to use the word "suffering" I think with dementia because the memory is gone the person WITH dementia does not suffer as we think of it but it is the family, the loved ones that see this disease destroy the one we love that suffer. The one we love is but a shell. We are caring for the body. All I know is that my Husband would not have wanted to be as he was if he were aware, the last few years I think all he "knew" was that there was a person that cared for him, held his hand and was kind to him.

There are signs of EOL..(End of Life) and while coloration of the skin is a good indicator, particularly what is called a Kennedy Ulcer is an indicator. Eating, or I should say not eating or drinking is another. She will refuse food, close her mouth or turn her head. Offer but do not force her to eat. Offer fluids, I would guess she is on thickened fluids. Again offer but do not force.
It is comfort now that should be the goal.

Be kind to yourself.
You have done nothing wrong.
Your thoughts are not wrong.
As long as you can say honestly at the end of the day that you did the best you could that is all anyone could ask.
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Reply to Grandma1954
Caregiving2 Nov 9, 2019
Beautiful & thoughtful response. All are, but yours really touched me.
Whew! I am having intense flashbacks of the feeling of utter helplessness, loneliness, frustration, depression, anxiety, and on and on and on of what full time caregivers feel.

My caregiving days just ended not long ago, not happily, but that is another story. I feel your pain! I truly do!

I had mom in my home for nearly 15 years and cared for her in her home along with my dad for many years before that. So I get it!

I also cared for my oldest brother. He had hospice. At the end of his life he went into an ‘end of life’ facility that was a Godsend! Does your hospice organization offer that?

Please inquire about this and take advantage of it.

I hear in your posting that you are headed for a breakdown, burning out or both! Trust me, I understand. I burned out. Please do not feel any guilt or shame over what you are feeling. Yeah, I know, easier said than done. I went through exactly what you did as far as emotions. It’s so hard! Very hard! Extremely hard!

I wish the very best for you when your caregiver days are over. You will grieve. That’s normal too. You may experience more guilt, the dreaded ‘what if’s?’ You will experience relief. That too is normal.

Please if you can, look into respite care as well. Does your hospice organization offer this? If they do, I strongly urge you to take advantage of it.

Hugs! More hugs and more hugs!
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Reply to NeedHelpWithMom
anonymous967666 Nov 6, 2019
Hi. Just read your mother passed. I haven’t been on site for a while. Please don’t take on anymore people to look after. Take it slow and watch out for reactions from your body and mind as they begin to readjust to not being on high alert all the time. Please have a free and happy life now
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I just wanted to give you a great big warm hug and tell you that you have done nothing to feel guilty about. It is a kindness to want someone's suffering to be over.

Try to get respite and rest up. We are always emotional when we are exhausted and you have been doing 24/7/365 for 11 years, wow, you are a strong woman and you need a break to finish the race.

May God give you strength and wisdom during this difficult time.
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Reply to Isthisrealyreal

I am new to this forum, and the first thing I see is your question about feeling guilty. I was a caregiver for my husband for 43 years -- he became quadriplegic as the result of a high school football accident -- he was an amazing man, and we had a good, though very challenging life together -- he passed away two years ago, and I am still mourning his loss. Along with caring for him, my mother came to live with me 10 years ago, so I became her caregiver also -- she will be 95 next month -- I struggle with guilt daily, and didn't realize how many of you are also dealing with the same emotion, even though we are doing all we can, with all the resources we have, to care for someone. Thank you all for repeating over and over that we should not feel guilt over being physically and emotionally tired -- as I said, I still struggle with feeling guilty, especially over taking time for myself, but through forums such as this, I am learning to take care of myself, otherwise, I won't be able to take care of anyone else.
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Reply to gmacon219

Bless you!
Your thoughts are VERY NORMAL.
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Reply to XenaJada

My MIL has entered that stage. Sadly, DH won't lift a finger to help her, so it has all fallen on SIL, who, as the angel she is, is running to MIL's everyday and staying for up to 8 hrs. DH PROMISED he's help and so far in the month she's been home from rehab he has showed up twice.

OK, she was a terrible mother and there is no peace between DH and his mom. There won't be, either. It's very sad.

He will go see her and come home utterly despondent. The time to make things right between them is passed. She is living alone, for now, but one more fall and that's it--she'll be in a NH for the rest of her life. She's nearly 90, this should not be a surprise to anyone, but they all act shocked she's slid so quickly.

And I would be there as much as possible, but she has cut me out of the loop and told all who listen, she will not have "that woman" in her home.

There is NOTHING wrong with you for feeling tired and depressed about the upcoming days/weeks/months. A caring person would feel sad and conflicted. Just shows you have a heart.
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Reply to Midkid58

Don’t feel guilty, I certainly have looked up the same information and I expect, like me, you didn’t really find the answer. If someone could just give us a narrowed down timeframe, we could plan our lives and incorporate our care and family commitments together. Unfortunately, that doesn’t happen so we carry on putting our own lives to one side, missing out on our own social and family life. My biggest fear is that when my mother does pass that either I or my husband won’t be young or healthy enough to for fill our life plans. As it is I put off going to the doctors and don’t take proper care of myself. However, I’ve never failed to take my mum to the doctor when she has a health issue. Please don’t feel bad, you’ve dedicated eleven years to your mum, I’ve done six and that feels like a lifetime now and it’s only getting worse. You’ve done an amazing job and all you want is peaceful passing for your mother as we would hope for ourselves if we are ever in the same situation. Take care of yourself and know there are many of us feeling the same.
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Reply to Sandy16
Harpcat Nov 9, 2019
Sandy, you are every bit as important as your mom, and in fact more so. There is no reason for you to neglect your health. You might even be depressed and need something to take the edge off. It isn’t fair to you or your spouse.
Your mom has lived a long good life and you’re doing your best. My thoughts are she would not like for you to neglect your life and health. I decided I had to have balance and realize my dad is at the end of what was a good 96 years. He’s being cared for and that’s enough. He lived a carefree life at my age and I intend to enjoy my life too.
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