How do you handle feelings of guilt when you feel that you didn't do enough?

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I used to post under Dee1963 and have been off the site for a while, but recently came back on.


My mom's in the hospital again with complications from COPD and possibly worsening of her dementia. Last year she was hospitalized for the same thing and I felt like it was my fault because I didn't use her bipap machine at home. She didn't like it, but I was concerned she would vomit at night and I'd never know (she has achalasia). So I promised myself then that when I got her home I'd do better. The caregiver that comes when I'm at work puts it on her when she sleeps during the day, but I often don't on the weekend. So, now another COPD exacerbation (she's retaining CO2 and her sat rates are low-mid 90s most of the time). I know this time I will do better. Mom and I are going through some rough patches with Mom sometimes up every hour or two, banging on her bed, wants a drink, wants to get up and go home to her mom and dad, there's someone in her bed, etc. This has been going on over 2 years, not always every night, but frequently. Over one 4 night stretch I got a total of 9 sporadic hours of sleep. I often wait to get into bed until I think she is asleep, then the dogs and I quietly go to bed. As soon as I lay down it's like she senses it and starts banging and yelling out help me. So yes, sleep deprived at times, then have to go to work.


I'm sorry to ramble. I'm just wondering if anyone else felt like this and how you dealt with it. My profile can give more background info. I just need to not lose myself in a book, in the garden, or on the net, and feel I should spend more time with her. She sleeps A LOT now, always wants to lay down, her appetite is not great and we can only get her to drink if we nag her (will only drink small amounts of water, likes diet Pepsi). For the past 3 years the hospital keeps mentioning hospice every time she gets hospitalized. This is the 2nd time this month she's been in the hospital. Last time was after one of her many UTIs. Sometimes she just is so out of it that it's hard to wake her up. So I feel like I should have been exercising her, trying to engage her more, etc. And I feel like it's my fault when she gets sick. I didn't keep her on bipap, I didn't keep the equipment clean enough, etc. I have anxiety and depression and had a panic attack today after doing pretty well for over a year. Like many of you, I don't have respite. So how do I keep up and stay on top of it? I pray that when God takes her home, he leaves me with no doubt in my mind that it wasn't because of my apathy, laziness, neglect, anything I did wrong, or anything I failed to do. She's always been my best friend and my rock. I love her so much.

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Tryingmybest - thank you for your response - I'm so very sorry you lost your​ mom. Peace and blessings to you.

My mom is a co2 retainer. It happens to her sometimes and she has been in the hospital for it, and this past hospitalization (last week) she had a high co2 rate. The co2 level didn't change much, even after putting her on bipap. She has vascular dementia as well, along with Achalasia (swallowing problem), diabetes, heart disease and has had strokes. You're right, it is horrible. We are in the process of switching her home health agency to a company personally recommended by a family member. They are going to help by reviewing Mom's current treatment plan and working with the doctor to make sure the treatment plan is current and appropriate, and will be available immediately to help keep Mom out of the hospital. The relief I feel is immense and I'm praying we can get a complete and best care plan for Mom that I can feel comfortable with.
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I just lost my mom to COPD while she is in the hospital please ask them about her being a CO2 retainer I think it's 30% of people with COPD can have it and it's misdiagnosed as dementia. We found out my mom was one 2 years ago she passed this last March. If your mom has CO2 retention it is devastating and she could end up like my mom every 2 weeks into the hospital. You did the best you could over the last year don't think you didn't I have horrible guilt I didn't do enough for my mom but I know deep down I did. You just have to keep going and keep trying at least you still have her to work on things. Please ask the doctors about her being a CO2 retainer I can't stress it enough they have to do an artery draw in order to get results but don't let her leave the hospital till you know. It's horrible to watch your loved one have a disease such as COPD I cared for my mom for almost 8 years after she was diagnosed and I still to this day feel like I didn't do enough for her. You keep going forward with her and do the best you can ****HUGS*** from a daughter who knows what your feeling and going through.
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Thank you!
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Awwe, been a long road for you it sounds like...you're a sweet, patient, loving daughter
I hope someone makes me warm n cozy and serves me my favorite food/drink someday...

Thinking of you and your mom, and
sending you both peaceful rest,

Bella
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Thank you all for responding. Peace and blessings to you all and to your loved ones.
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And she is sooo blessed to have you as her daughter. I was a hospice volunteer. They will be a great comfort to you and your mom.
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Mom had her upper endoscopy with Botox for her Achalasia while in the hospital. I was very anxious about sedation since she is sleeping so much as it is. She has has this procedure many times, and it does help with her Achalasia and helps her to be able to swallow food completely. She's in recovery right now. She wants a Pepsi and a hot dog NOW!

By chance the pulmonary doc was in Mom's room right before her procedure. I asked him about the effects of too much/not enough oxygen and not wearing her bipap at night, and putting it on only sporadically throughout the day. He said it would not have made much difference, she has been steadily declining over the years that he's been seeing her in the hospital. He told me that he is 100% that I took very good care of Mom, she wouldn't be around today if she hadn't been getting great care, and there's nothing that can be done to stop her decline with dementia or COPD plus heart disease and all her other health problems. All the doctors feel that she should be under hospice care at this point. There is a picture of a farm in her recovery room - she was raised on a farm and it was the happiest time of her life. She can't see the picture, but I can. It's a very peaceful scene.

Mom was discharged from the hospital and went home in the early evening. I got her in the shower, used her spa salt scrub (gentle, gets rid of dry skin, moisturizes amazingly!), thorough shampoo, in her granny gown and warm socks, a warm blanket from the dryer, some chocolate and some (diet) Pepsi. She's resting comfortably now. I love this awesome lady so much, and am so very blessed to be her daughter.
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Jeanne, yes mom has dementia and I'm not sure she'd know how to get the mask off. It has to be on tight. She wears oxygen 24/7 with a nasal cannula. Is there a nose mask for bipap? She is a mouth breather, though. I asked the doctor here if it could make a difference, she said people with COPD can experience exacerbation triggered by many things, and her dementia could also play into that. She retains co2. They don't always have her on it here at  the hospital, they said she didn't show a lot of improvement on it. 

Mom loves chocolate and sweets, and although diabetic (not on any meds or insulin for it), she must have her goodies or she gets very upset. Her appetite has gone down the past few weeks, and it's a battle to get her to drink. And she sleeps all the time. The doctor says that's a sign that she's shutting down. Now I'm trying to get family members to step up and help me, at least to make a decision on her future care. I have to admit, hospice scares me because I feel like we're giving in/up. I know she's not going to get better, but somehow it just brings the end closer, in my mind. I don't know if that makes sense.

I've been taking care of mom alone for 9 years, with in brother as her POA. Last summer this discussion came up and the family members I talked to just said "you know her best, whatever you think is right". This time I sent a group text that I needed us to come together on this, and surprisingly they all responded that they would think it over, etc. Mom's been in the hospital since Monday, no visitors but me and her caregiver. I texted them all her hippa password and told them to call if they needed more info or to be educated on her prognosis/conditions/options. Meanwhile I sit here texting updates. Part of me just wants to give up communicating again and stop trying to get them involved. I'm the only one taking care of her and having someone's well-being in your hands is heavy. Anyway, thanks to you all. At least I know someone out there GETS it. Peace and blessings to you all.
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I can't imagine having a person with advanced dememtia on cpap. I didn't even know that was possible. Is there some reason you have not contacted Hospice? I would absolutely contact them to get help. It sounds like there is a lot going on. I would hope they would be able to help get her what she needs at this stage of her life. I'm not sure what you think you're not doing right. It sounds like you have done a great deal. Perhaps, your expectations for yourself are too high.
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You know that sleep deprivation is used as a torture method, don't you?

When you are sleep-deprived you really cannot function at your best, no matter how good your intentions are. I went through this. Our solution was medication to allow my husband to sleep through the night. Discuss this with her doctor. It may not be applicable to your mother, but it won't hurt to ask. Be sure to let the doctor know the impact Mom's restlessness has on the quality of care you can give her. This really is a very serious problem in your situation.

Not all doctors agree on when a bipap device should be used for COPD. Here is something from one site:
"Contraindications for BiPAP include.
Inability of patient to protect own airway (decreased level of consciousness). This includes the inability of the patient to pull off the mask if it becomes full of fluid, such as vomit or spit. "

Are you worried that your mother wouldn't be able to quickly pull off the mask before or after she vomits? Would that be because of her dementia or lack of control of her hands or what? This is another matter you should discuss specifically with the doctor who ordered the bipap.  Has the use of a different kind of mask been discussed? The one I use fits over the nose only -- it could not become full of fluid and it is very easy to remove.

You are doing your best, in your profound love for your mother. You are in a very difficult situation -- needing to work all day and not getting enough sleep. You have probably weighed this in your mind more than once, but at this point, might it be better for your mother to have 24/7 care by three shifts of people who are not constantly sleep deprived? What if you could visit her as much as you like and still get to sleep at night? Since I am sure you have considered this, what is your objection to placing Mom in a care facility?

And finally, since you mention it, what is your objection to having Mom in hospice care? That wouldn't solve your sleep issues but it might provide Mom with a more  appropriate level of care.
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