Old 07-09-2018, 11:09 PM #1 (permalink)
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Default Feeling guilty

Hi,

My mother has als and she is in her late stages. Is it wrong to think that i want this to be over? I just feel so stressed seeing her like this and I am tired and I just want to continue my life. I have a 5 month old baby and a wife and I feel my life is put hold on. I just feel guilty thinking this way. I also do not want her to suffer anymore, she is constant coughing with phlegm that doesnít come out and she starting to get bedsores. We canít do much for her but follow the hospice nurse advice but i know is suffering. I believe in karma but I am doing the best I can to take care of her, I am here everyday helping her but in my mind i want this to be over.
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Old 07-09-2018, 11:45 PM #2 (permalink)
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Default Re: Feeling guilty

I don’t think it is wrong to wish for it to be over. Your mother is suffering. If she is constantly coughing and has bed sores, she is not entirely comfortable.

Unfortunately our society makes us feel guilty if we don’t want people to live forever. I think we need to do everything we can to help people be as comfortable as possible in their end stages. We need to know when to let go. We need to realize the point at which more aggressive intervention is likely to prove futile. I believe quality is more important than quantity when it comes to life.

My advice with your mother is to let her know you love her. Keep doing your best to ensure her comfort. But also let her know it is ok for her to let go when she is ready and that you will be ok. No reason to feel guilty.
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Old 07-10-2018, 01:56 AM #3 (permalink)
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Default Re: Feeling guilty

Quintok,

The hospice nurse can be helpful, but you know your mom better than s/he does. Does your mom have a suction machine, CoughAssist? Does she use BiPAP? Have you tried some of the remedies for phlegm that we have discussed in other threads, from pineapple juice to Alka-Seltzer, by tube or mouth? Does she have an overlay on her hospital bed? Does she transfer out of bed at all? There are many ways that she might be more comfortable, and you are right that no one should suffer.

It's also very common to wonder when her suffering and your burden will end. Trying your best to ease her passage and help her do or experience what is still precious, undone or unsaid, will relieve you of any possible guilt when she does pass on, and that is your last best gift to her and yourself.

As you say, you are helping her every day, but it is not for karma points. You can love someone and still want the suffering to end. Depending on what conversations your mom has had with you in the past and/or what she is communicating now, what advance directives are in force and what conversations you have had with the hospice nurses, if your mom herself is "done," that is a conversation that you are always free to have with the hospice staff -- that the two of you want to err on the side of comfort rather than length of life.

Best,
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Old 07-10-2018, 11:13 PM #4 (permalink)
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Default Re: Feeling guilty

I feel this disease has changed me where I have lost all patience with my mother. I get so frustrated when I see her and I know should not because she is dying. Now I am so easily stressed and I just want to runaway from this situation. Sorry I just feel like venting.
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Old 07-10-2018, 11:35 PM #5 (permalink)
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Default Re: Feeling guilty

Feel free to vent here as much as you need to. Everyone understands.

You are describing some symptoms consistent with caregiver burnout. My partner experienced something similar when she cared for her mother who died of strokes and dementia.
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Old 07-11-2018, 08:16 AM #6 (permalink)
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Default Re: Feeling guilty

You are not alone, your feelings are absolutely valid and nothing to feel guilty about. As a CALS myself I have gone through all of those feelings, over and over again.

You love your mother or none of this would be affecting you like it is, that is very obvious. It hurts so badly to watch the people we love suffer like they do. It does make us conflicted. We don’t want to lose them, but we also can’t stand to see them suffer.

I’m in the midst of a rough spot with my husband right now as well. It s*cks! Please forgive my French.

I am sending you huge hugs and many thoughts for strength and peace.

Hugs
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Old 07-14-2018, 05:40 AM #7 (permalink)
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Default Re: Feeling guilty

I absolutely understand you. Im at this point. Im so tired and mum is getting worse needing more and more. And i even have my sisters helping. I feel angry bitter upset. And poor mum she shouldnt be blamed. Keep strong. God is gonna help us. We are going to get throu this. Kiss and hug your mom when you feel a bit better during the day. Thats what i do. I tell her i love her and its not her fault. This is not our mums. Remember her how she was before this.
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Old 07-14-2018, 10:38 PM #8 (permalink)
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Default Re: Feeling guilty

thank you for posting what I am feeling and feel so bad for feeling this way....
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Old 07-15-2018, 07:44 AM #9 (permalink)
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Default Re: Feeling guilty

Laurie's response is spot on (as usual). Do the things that you can do to make your mom comfortable, but there is no guilt in wishing that this horror is over.

You are burned out. That impatience you mention...I fight it sometimes and I have a lot of help. My husband is my life, so things are not on hold for me (well, except time with grandchildren).

Vent here...it really does help.

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Old 08-05-2018, 10:35 PM #10 (permalink)
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Default Re: Feeling guilty

Been dealing with a lot of this just lately. My wife is 44 and we've been dealing with this for 7 1/2 years.
I love my wife, and want the whatever is best for her, but I hate that my life is passing me by and I hate that our kids are growing up with nothing but a half of me (or less) and a mother who hasn't moved in years. I want out, and have for so long that I don't even feel guilty about it any more. S you're just fine IMHO to want this to end. Hoping for the best, whatever the best might be.
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Old 08-06-2018, 02:11 PM #11 (permalink)
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Default Re: Feeling guilty

Hi Rictak,

At what stage did your wife stop progressing? My mother has stop moving for about 5 months and her breathing is okay for now but she has the bipap half the day.
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Old 08-07-2018, 01:53 PM #12 (permalink)
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Default Re: Feeling guilty

Its been so long that its hard to remember. She lost the ability to stand about 6 yrs ago, and probably all movement except her neck and head about 4 1/2 yrs ago. She mostly just goes form bed to recliner via Hoyer Lift now. Her breathing is definitely affected, but her O2 levels stay good. No Breathing or feeding tubes, she says she doesn't plan on any, so her diet now is pudding and oatmeal. Bipap only at night for sleep except for a few emergencies.
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Old 08-07-2018, 03:37 PM #13 (permalink)
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Default Re: Feeling guilty

Rictak and Quintok, I feel for you.

Itís so hard to be caught in that quandary where you donít want to lose your loved one, yet you (and your loved one) are burning out trying to maintain a lifestyle neither of you would have ever imagined wanting pre-ALS.

Wishing you strength to hang in there and not lose your sanity. No reason to feel guilty ó itís a no-win situation.
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Old 08-07-2018, 09:39 PM #14 (permalink)
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Default Re: Feeling guilty

Quintok & Rictak,

Your mother and wife know how much you love them. They know how much you've already done for them.

Can you take a day or two off and pay someone to come in and help? Maybe get a massage, pamper yourselves a bit.

I'm so sorry you're both going through this horror but know that you've already shown your love and your PALS know it.
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