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My mom is only 70, but has advanced dementia. She is wheelchair bound, incontinent, does not speak, does not feed/bathe herself. Nothing. You can be right next to her trying to talk to her and she is just vacantly staring off. If you want her to see you, you have to get in her line of vision, and even then, she may not see you.


The guilt part...I very much want her to now be with the Lord. She has no quality of life and is a shell. She has voiced many times before she got sick that she never wanted that kind of life or to be a burden on her children. But my #1 reason for wanting her released is for myself, and #2 for her. She lives in a nursing home, as I am unable to care for her, or else I would. But all her affairs that I have to handle cause me great anxiety on a daily basis, that I am missing out on my own life and it's all I think about. Does this make me bad/selfish to feel this way? To want this for myself before her? I've been beating myself up over this.

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Crafty, try not to dwell on either the thoughts or your guilt feelings about them. None of us want to be in your mother's situation ourselves, or to cope with it either. I would suggest you skip the counsellor option. It just makes you think about it more. There aren't any solutions. Perhaps Catwinter is right - pass the responsibility, for your mother and for your own worries, to God. It's too hard for us little people.
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Crafty - if you stay on the website to read more posts from other caregivers, you will see that most of us are so burn out from taking care of our parents/spouse/sick relatives who are still lingering on wayyyyy beyond their expiration dates.

I, too, would like for my mother to pass on before she reaches the point of no quality of life.

Don't feel bad about your thoughts. They are totally normal.
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I can relate so much to your feelings. Both of my parents have dementia but they are in their late 80's so much older then your mom. Sometimes clueless relatives are always asking about their health.. how they eat, if they are exercising...see doctors,, all thing related to prolonging life. I get angry when they do this.. not because I want them to be unhealthy or sick.. but I hate the thought of dealing with dementia and all things related to their care for another 10 years of my life.

Like you, secondarily I am concerned for them and they would not want to go on and on living this life and being so helpless and needy.. they used to be so free and adventurous.. now their life is so limited.

You must be pretty young yourself if your mom is only 70.. I do feel guilty about these thoughts ... but they are valid thoughts to have ....please try to not beat yourself up over this.. as I am sure many others in your situation would be thinking these thoughts as well.

I don't think it makes you bad or selfish.. you are entitled to your own life.. this bit about dealing with dementia and parents for years and years.. would lead most to have these thoughts (I would imagine).

((hugs))
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I knew by the time I sat down to write an answer that you would already have lots of responses affirming the normalcy of your thoughts.

I'm 9 years into assisting my dad in his facility and managing his affairs as an only child. It has consumed so much time and energy that the happy life I had a decade ago is only a distant memory, but I continue to long for the opportunities and choices I once had. Of course, my yearning also comes with feelings of frustration, and even resentment at times.

I've been very much helped by attending an Alzheimer support group and would highly recommend it. I've had a chance to observe and contemplate the thoughts and emotions of many people in our situation and have drawn a few conclusions.

1. Most of us enter this responsibility without previous experience but forge ahead by saying "I'm a good person so, of course, I can do this." Later, you'll have thoughts that have you asking others "Am I a bad person for thinking this?" Hello dementia caregiver! And yes, you're still a good person.

2. We also believe in our resilience and perseverance at the beginning because we are untested. We say "I can do anything for a while." We never imagine "a while" will turn into grueling years of increasing difficulty. It leaves us longing for any period of relief and imagining what living life without swimming in stress hormones might feel like. Hello dementia caregiver! You can expect an odd mix of grief and relief at the end.

3. Lastly, because we are naïve, we also say in the beginning "How hard could it be?" Then we find out it's beyond what we could have ever foreseen but we question ourselves because we struggle with the unimaginable. Hello dementia caregiver! I have yet to meet anyone who can make it to the finish line without engaging with others in some way to fortify themselves mentally, emotionally, and physically with the care challenges.

Perhaps you can see yourself in this evolutionary summary and I hope it reassures you that you're as normal as the rest of us struggling to cope with these difficulties.

As a final suggestion, I'd recommend that you relinquish the tendency to put things in rank order and see your desire to want the end to your mom's suffering and the easing of your own caregiver struggle as equally important outcomes for different but valid reasons.

I'm glad you brought this up because it rings true for so many of us. It's a hard road we travel but we try to ease the way for each other with out support.
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CherylMD Oct 28, 2018
Well said! I’m sorry you’re experiencing this hell as well.
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Crafty (((((((hugs))))))))

From the moment my mom was diagnosed with dementia until the day she died
(4 years and a bit) I will admit that I prayed that she would expire. She NEVER< EVER EVER wanted to live in the condition that she was in.

I was frankly grateful that after 4 long years of slow decline, a fall in her NH sent her into a precipitous decline and I was able to talk my brother, who had Power of Attorney, into signing off on Hospice.

This disease is unbearably painful for all involved. Don't beat yourself up. Please.

And again ((((((hugs)))))))) and vent here all you want.

Have you seen a psychiatrist for your anxiety?
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Crafty789 Oct 24, 2018
BarbBrooklyn, I have seen a counselor. At first, he was very helpful, but then not so much, so I just stopped going. This whole situation has made me develop OCD as well, so I should probably go back or find a different one. Thank you for responding. I don’t feel quite as bad now.
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I think you have too much mind chatter going on, i.e. guilt, bad/selfish, beating yourself up, etc. Stop all of that...you have no control when she goes so surrender YOUR emotions to divine love and get some peace. I’m talking to myself as well!
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Crafty789 Oct 24, 2018
Catwinter, thank you!
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There are days when I get entirely frustrated with my mom's mental and physical decline. I feel almost like it's her fault that she can't ambulate well or think for herself, then I catch myself and realize she never intended or anticipated ending up this way. Dementia is a horrible thing - it actually robs you of your loved one before they are physically gone and you can't help longing for the way things used to be. It's painful to watch them struggle and know nothing can be done. My mother asks all the time whether the dementia will "go away." She tells us she misses her parents, her husband, her friends and just doesn't want to be here anymore. I confess, I've wished that for her too. Not that I won't miss her when she does pass, but I know she'll be happier reuniting with all the people she loves and misses and we'll be happier knowing she's safe and finally dementia free.
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My mom was the same way before she died 3 weeks ago - once I sat there thinking we were kinder to our old cat by calling a halt than we were being to mom - we all feel the same way - I even did some pre-grieving as the rarer & rarer glimpses of the real person became less & less

Stop beating yourself up as it is a useless waste of time & energy - do something positive when you start feeling that way even if it only sorting out files - I know because I have been there & it can grind you to a halt if you let it - I felt as long as I am doing my best for then I tried to deflect myself from the 'what if', the 'maybe' and the 'am I doing enough' type of thought - it is easier said than done & I am 69 years old doing this
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1nephew Nov 2, 2018
Condolences, and wishes that you transition well into the next phase of your life.
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Crafty, your post made me cry, it is so much like my grandma.

Please do not beat yourself up for wanting her freed from this living.
h€[[. It only makes you an obviously loving daughter to want her released.

For whatever reason, she is going through this and her family is being drug right along.

Unless you have dealt with someone that has the lights on but there is nobody home, it is hard to understand the desperation you feel for the situation. There is no engaging them in any way, shape or form. There is no communication possible whatsoever, nobody's home. (I am saying this for all the posters that have suggested engagement as a way to cope, sorry guys, no offense intended. It is just not possible, she is a shell.)

Crafty, do only what you can, delegate when possible and be thankful that she is not suffering.

You have been dealing with a heart breaking situation for a long time, to want it to be over is okay and understandable. Be kind and forgiving to yourself.

Hugs for all you do, you are a daughter that any mom would be proud of.
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Dexieboy Oct 28, 2018
I agree that attempts to engage these patients always proves futile, unfortunately.
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I don't thinks this makes you bad/selfish. I think you are suffering from unrealistic ideas about love and sacrifice. We often get told that love means that we totally accept everything about our loved ones. This is a romantic idea and not at all true. New parents usually love their babies. But they nearly all complain about loss of sleep. Realistically you are suffering from your mother's condition and missing things that you could do if you didn't have to spend time managing her affairs. You have chosen to help your mother. That doesn't mean you have to enjoy providing this help. I think all the caretakers on this website are heroes for their dedication--even if they hate it and wish for their loved ones to pass away and ease their burden. I count myself incredibly lucky that my husband passed away after 4 1/2 months in hospice care before he was totally demented/disabled. I only had to clean shit once and was spared repetitive clean ups. He had bed sores and I was fearful of contaminating the sore. Before he got ill, he used to make fun of me for squeamishness about handling bowel movements. Lucky, too, that I was retired and didn't fear missing out too much. Good for you for "caring" for your mother. You are not required to wish for her continued existence which is now a burden to both of you. And if you #1 wish a merciful death to spare yourself, that's ok in my opinion because you are the one who feels this burden most.
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