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I’m the odd one in my family. Black sheep, weirdo, different...I hear it all...am a bit estranged from the whole family. I left as soon as I could, went back to visit now and then but never felt like I belonged. I never missed seeing any of them.


My mom developed non-hodgkin lymphoma NHL and is in hospice care at home. She can wiggle her feet and lift her forearms to feed herself but that’s it. I don’t know how she can stand lying in bed like that. Dad is nearly blind so he needs looking after as well. My siblings were COVID deniers and conspiracy theorists who refuse to wear masks around these two vulnerable people. I feared for my own health every time I went there.


I took 48 hour caregiver shift. There two siblings who have been primary caregivers were relieved. They had already established routines and practices and gave me some cursory info and assumed I understood it. I thought I did. I was wrong.


I think there is something wrong with me. I’m embarrassed to say I don’t love my parents the way it seems other people do. We have a friendly relationship, but ... I remember the roadblocks they threw up, the occasional vicious beating, and there is an emotional distance on my part. I sometimes don’t understand what other people are feeling anyway. I try to guess and fit in. So when I am there, it’s not with a loving and compassionate mindset. Mom is almost totally paralyzed and bed fast, has terrible edema, her skin is swollen and leaking fluid all over. She’s not in pain, but what kind of life is that? We have to change her diaper pads, she’s up to 200 pounds at least and it’s really hard to turn her, and she HATES it and says she wants to die when we do. I’m torn between wanting to insist and wanting to, as always, allow her to make her own choices, and NOT wanting to do the diaper changing when she screams if you touch her. What is the balance? When do you insist on something for their own good even if it causes intense emotional upset?


I made an awful mistake. I thought we were just doing diaper changes morning and evening if she had pooped. I think the older sister was doing that. The younger sister was checking constantly and changing the diaper every time she pooped (she has a catheter) and assumed that I knew this was common sense. I did not. I thought it was a balance between avoiding problems and minimizing the emotional/physical distress. So one afternoon I changed the diaper when the aide was there. In the evening she hadn’t pooped so I didn’t force anything. The next day she had surely gone, but had a fit when I wanted to check and dad also wanted me to leave her alone. By that evening I had been without sleep for 48 hours and I made a poor decision. I thought, ok, let them do what they want as usual and change her tomorrow with the aide’s help. In the morning the aide was shocked by the amount of poop. The bedding was also wet, because Mom poured two glasses of water on it overnight, and it made things look worse. so she reported it to the nurse, who called the older sister, who called the younger sister, who screamed at me over the phone, and then they sent text messages to all the siblings saying the nurse was going to monitor everything because of abuse. I feel humiliated.


I didn’t intend and didn’t realize that was harmful. If I explained my thought process it would sound like making excuses. At least two sisters are heaping abuse and recriminations on me. I understand that they are also under huge stress and I deserve it, but it’s not helpful. I want a copy of the care plan so I can research and figure out what to do in any situation. It seems there is some mental problem that keeps me from feeling for them, loving them, just knowing what to do like a normal person. How do I atone for my mistake and do better? I dread facing the hatred and judgement, but I can. If I really do have emotional issues, how do I figure out the right thing to do? Is there someone else who struggles with this and has advice?

Dear, I think YOU'RE the normal one.

The fact that these folks assume that you would just figure out the caregiving with an abusive mother screaming at you shows just how ignorant they are. No one can function with no sleep.

Your mother needs professional care. I hope that your siblings can figure out how to get that for her, whether in a facility or at home.

And yes, consider therapy if you can't see that the dumb cluck racist conspiracy theorists are the folks with the issues.

Familial love is a 2 way street. They were supposed to love, nurture and guide you while you were growing up. They didn't. They don't get to turn around and insist on you being an attentive child now.
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TheWeirdOne May 2, 2021
I don’t think my mother is being abusive. She is just humiliated and frustrated and I think she really does want to die. She’s had non-Hodgkin’s lymphoma for some time, and last spring the doctor said there was nothing more they could do. The prognosis was she had a couple months at most. We set up two hospital beds for her and dad, and by fall she was a hospice patient. The weight gain is from the steroids and terrible edema caused by lymphoma along with congestive heart failure. We thought she’d never see Thanksgiving. Then for sure Christmas would be a miracle. Then New Year’s Eve. Groundhog Day, Easter. I wouldn’t be surprised if she holds on until their 75th wedding anniversary in June. But she’s miserable. She can’t even roll onto her side in bed, or sit up, she has terrifying bouts of shortness of breath, she can’t bend her knees. She lies in one position all day. Thankfully her short term memory is compromised so she will tell me she needs to get out of bed, she hasn’t been up in a week. She’s bloated and fluid is leaking out of her body and she has skin damage from moving her on the sheets to reposition her, change pads...considering all that she’s a saint, not an abuser. I don’t see how she has the will to keep going. That’s part of what makes it hard for me to force yet another indignity on her. She doesn’t have much time.

Whatever happened in the past between us - both those people are long gone. I did happen to be born at a difficult time, she worked hard and endured my father’s secret infidelity and somehow they kept it together. But there was a critical time when she did not understand the person I was, did not understand being different, and just didn’t have much to give me. Sometimes I look at her and think she looks like Jabba the Hutt lying there, and try to imagine the person she used to be. The other day I realized that when the rest of the family looks, they see a completely different person. They see her fro when she was fun, was always laughing and singing, teaching Sunday School and being a Girl Scout troupe mother...they knew her when she was happy and giving and kind, and had a different relationship with her.
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Weird, at the stage of life that your parents are in, there are no "good" choices. Only the least bad ones.

Is mom on comfort meds from hospice for her agitation? That would certainly make changing her a bit easier. Is she getting morphine when she is short of breath?

Your sisters don't sound like nice people. They tell you that you lie about how long it takes you to drive there? OMG!

Can't Mom and Dad go to a NH together where mom could be on Hospice?
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TheWeirdOne May 2, 2021
Barb, you have it exactly right. All we have are least-bad options.

Mom can’t take the usual anti-anxiety meds because they actually increase her stress and anxiety. She is on dilaudid for shortness of breath.

I’m still trying to process how I could have missed the fact that it was important to check her diaper all the time and change it right away. If it’s such an obvious thing that anyone with common sense would know, why didn’t I get it? What else am I misreading? I’m terrified and sick at heart over it.
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First..
I would NEVER have left anyone to care for my Husband after "just explaining" what needed to be done. I always had them "shadow" me for a day then during that day I would have them "help" me do some of the repeated tasks, like changing him.
To leave you to care for 2 people after just explaining what to do is irresponsible.

Second.
Have you talked to a therapist about yourself? If you are thinking that you are "Black sheep, weirdo, different," and any other comment that you think about yourself you should be discussing that. You indicate that you have been abused in the past. that should be enough for you to seek a way to deal with that. Then expecting you to care for the abusers is a bit much.

Third.
And sort of getting back to the first comment...
In order to SAFELY care for someone you should be shown what to do AND you should be provided with the proper equipment that will keep you safe and the person you are caring for safe. In this case it sounds like a Hoyer Lift might actually be a great option. It would cause less stress on your mom and less stress for anyone that is caring for her.

Fourth.
If you are going to continue your "shifts" and there is going to be a Nurse there to monitor what you are doing then ask the Nurse to train you and show you exactly what you need to do in order to do what needs to be done properly.

Fifth.
If you are going to continue to be a caregiver you should have something in writing that indicates a care plan and exactly what your duties are. AND you should not be expected to "work" 48 hours with no sleep.

And I am going to add a Sixth point here, just because it is me responding...
Is mom on Hospice? If not you (by you I mean whoever is POA) should look into it. I would think she would qualify. You would get the equipment that you need to safely care for her as well as all the supplies you need. And a Nurse would come once a week, more often if needed and a CNA or Home Health Aide would come a few times a week.
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BarbBrooklyn May 2, 2021
Wonderful advice!

The mom is already on Hospice.
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All caregivers make mistakes. I've made tons. Your recent "mistake", quite frankly, doesn't sound so terribly heinous to me.

BUT, I care for a loving, non-demented parent who has never abused me, and I provide care alongside a nice, psychologically healthy sibling who doesn't lash out abusively at others when there are problems and mishaps, which there will ALWAYS be in any caregiving situation.

I think YOU'RE the normal one and that you need to exit this dysfunctional situation ASAP.

I'm very sorry that your biological family is like this. You deserve better.
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I think your sisters have blown up the whole incident, if I understand it correctly. You also have become more upset than it appears the situation warrants.

Over a 2-day period, you did not change your mother's diapers as often as your sisters--who had not explained at all well nor demonstrated what they expected you to do. You weren't given a care plan, if one existed. As a result, there was too much poop in your mother's diaper, but her skin did not become broken. All that was really needed afterward was a simple explanation by your sisters and an agreement by you to follow their instructions about the diaper-changing in the future, assuming they will now give you positive instructions. In addition, you should not offer or agree to do anymore care without a care plan and/or written instructions AND a walk-through, with your performing any of the jobs you aren't sure about.

Despite your age, I agree with the others who have suggested you might benefit from therapy. You may live another 35 years; make them better for yourself! Your negative self-image does not correlate with the positive things you've done in your life and are doing now. Meanwhile, I hope you will keep coming here for support. Hugs!
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Why would you even want to be a caretaker to people who have abused you?

It's not your responsibility.

Go live your life, preferably as far away from all that drama as humanly possible. Don't let a perception of obligation trap you in their crappy little backwoods town for the rest of your life. Way too many people, mostly women, make that mistake.

Consider therapy. It can help.
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Maybe because of the abuse you never really bonded with them. Thats how you dealt with it.

Do you have problems with relationships as a whole? Do you tend to reason a little differently? I think seeing someone would be a good idea. I would ask to be tested for autism. You may be high functioning but it may be why you look at things differently. Why you may react differently.

The aide should have done the diaper change.
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TheWeirdOne May 2, 2021
JoAnn...I do have a history of relationship issues. For years in my early 20s I didn’t even date, because people were falling in love with me and I realized I was hurting them by not being “the one”. And it is hard to intuit situations, which is why I wonder what else I’m missing in learning to help care for my parents. I don’t know what a diagnosis would do at this point because I’m almost 65.
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You are present during these last days. That is the right thing and you are doing it. Be at peace with yourself.
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Stop owning your sisters nasty opinion of you.

You really did not do anything wrong and they need to stop with the personal attacks against you. It is not okay for them to rip you a new one when they know full well how difficult caring for your parents is.

Step back, take a deep breath and start fresh. Dwelling on what should have been serves absolutely no purpose other than to make you crazy.

You saw what these people were when you were young and you chose to get out, congratulations! Don't get sucked back in now. You just have a short season to do what you feel you should for your parents, keep your eyes on the exit, not those sisters and their words.

I wore a button for most of my school years that said "Why be normal?" I think being exceptional is far more rewarding and it doesn't matter what others think of you. So why try to fit into their bucket?

Speak with the nurse and ask how you can be trained by hospice to care for your mom in the best way possible and move on.
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I don't think you should be a caregiver for your mother; her issues are too far out of the scope of what you're familiar with and comfortable with. That would be MY position on this if I were in your shoes as well. Has nothing to do with being 'weird' or a 'black sheep' or anything of that nature at ALL.

You ARE a normal person, you've just been put into an ABNORMAL situation and now you're questioning YOURSELF which is very unfair.

Your siblings are on you like white on rice when you have NO experience dealing with THIS level of care for another human being! You can be given a road map all day long and STILL feel lost in the muck and the mire of it all. Because it's too much. Too much to expect you to come in and do the caregiving for a 200 lb diaper clad woman with dementia who is screaming and in pain and telling you NOT to move her or that she's already had her meds or that you're poisoning her, etc.

What's needed here is another paid caregiver or nurse to come in and do this job instead of you. Someone who has lots of experience with eldercare and knows this job like the back of her hand. You can come in to give your mother some visiting time and loving support, that's all. You can hold her hand and bring her a soft drink or a snack. You can share memories with her and have a good end-of-life experience with the woman instead of a nightmare you'll feel guilty for for years to come!

Please don't feel obligated to do this caregiving anymore! Let yourself off the hook and let your siblings know you can help out with emotional support here only. The hands on diaper changing and all the rest of it needs to be delegated to professional nurses and caregivers now. Enough is enough.

Wishing you the very best of luck in a difficult situation
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