Old 05-25-2016, 12:23 AM #1 (permalink)
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Default What constitutes 'neglect'?

At the risk of being told to grow a pair, i have to ask about abuse and neglect.
My wife/cals has made it clear that she hates taking care of me. I try to ask politely when i need something and i always wait patiently while waiting for her to get to my requesr...or i at least ACT patient. I tell her thanks very regularly, and try to let her know that i appreciate her and what she does.
I will add here that we recently adopted a 2 year old (my granddaughter), and i honestly am unable to help around the house, so her playe is full.
To top it off, shes had a sinus infection for about a week, so shes tired and feels lousy.
Now, we have home health aides 2 hours per day, 7 days a week plus she has respite help with the baby.
So, tonight she gave me my meds (PEG) and put the hoyer sling in my power chair while i stood at the sink. Once the sling was ready i sat and tried to get my feet onto the foot rest. Not an easy job these days as many of you are aware. Well, apparently i "dawdled" too long. She told me she would not get me into bed...i can spend the night in my chair. And she went to bed.
So, long story to ask: what is neglect and abuse? As i mentioned, this treatment is not one-off; its happening more and its escalating.
And back to my "pair":i have 'em but i am helpless here, other than having my phone to talk to you or call the athorities. She wins any disagreement because i cant do anything about it.
When do i say enough?
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Old 05-25-2016, 12:54 AM #2 (permalink)
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Default Re: What constitutes 'neglect'?

Not helping you to bed is neglect.

Your wife needs counselling now. She needs support to care for you.
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Old 05-25-2016, 02:03 AM #3 (permalink)
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Default Re: What constitutes 'neglect'?

azwxman - wow, I'm sorry this is happening.

To leave a PALS in a chair all night because they could not do something is NEGLECT and ABUSE.

Now to be fair to your wife, she is possibly at burn out. This is not an excuse, but is me recognising that she is also in trouble. Caring is a very hard job, very hard. But being a PALS means you have no control over the bodily functions you are losing and you NEED help, and lots of it.

I think you need an appointment with your doctor or clinic ASAP, and you bring up your concerns over your increasing needs for care and assistance, and your concern that it is too much for your wife to carry. Maybe you could go to a facility for 2 weeks to give her some respite, and during that time some strategies for continued quality care could be explored and put in place. (like more help at home, longer hours, or different times of day etc. Also as suggested she needs some counselling and maybe someone to help her look at the load she has and how to manage it better for her own mental health)

Are you able to make that appointment without her assistance? You could ask for the appointment then have them notify your wife or something? Make sure you tell them there is a crisis and it is urgent.

I'm so sorry again. I cannot imagine ever doing anything like that to my Chris. This has nothing to do with 'growing a pair' mate, not in the least. No matter what, a PALS needs are complex, and must never be left unmet. The need to be settled well into a bed at night is not a luxury, not a whim, or just something you want that is asking too much. It is a NEED.
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Old 05-25-2016, 02:03 AM #4 (permalink)
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Default Re: What constitutes 'neglect'?

Yes, this is neglect. Do you have friends or family with whom you could stay, or could come and help? I would say it might relate to her infection and/or abx except you say it's escalating. So it doesn't sound safe for you to stay just with her and a 2-year old. How are things with her and your granddaughter?
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Old 05-25-2016, 03:30 AM #5 (permalink)
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Default Re: What constitutes 'neglect'?

Oh wow.
It takes real courage and strength to admit to these problems. I salute you for that.

Please listen to the awesome advice you have been given...time that everyone in your house gets help.
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Old 05-25-2016, 04:03 AM #6 (permalink)
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Default Re: What constitutes 'neglect'?

I can't add anything to advice that's been given other than my heart absolutely goes out to you! Having this disease is enough to deal with. Sending a supportive hug and hope your situation improves quickly .
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Old 05-25-2016, 05:16 AM #7 (permalink)
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Default Re: What constitutes 'neglect'?

I am so sorry. I had a visceral reaction when I read your story. I know CALS sometimes burn out but this is something different. It IS abuse and it's CRUEL. Please do what you can to protect yourself.
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Old 05-25-2016, 06:58 AM #8 (permalink)
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Default Re: What constitutes 'neglect'?

Yes, it's definitely unacceptable to leave you all night in the chair.

Whilst I absolutely do not agree with how you were treated, not every person is cut out to be or wants to be a CALS.
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Old 05-25-2016, 08:56 AM #9 (permalink)
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Default Re: What constitutes 'neglect'?

Azwxman, this is totally abuse. I believe you are a veteran, can you get more assistance/respite from the VA? My two-year-old grandson is here almost every day, and it is has become to difficult for my husband to take care of me while chasing him around. Also, are you getting the respite dollars available from our local ALsa? I hope that you and your wife are able to get some more help soon. This disease is just so brutal on all of us.
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Old 05-25-2016, 09:15 AM #10 (permalink)
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Default Re: What constitutes 'neglect'?

"Whilst I absolutely do not agree with how you were treated, not every person is cut out to be or wants to be a CALS."

I understand what you're saying and I appreciate it, but I don't know of anyone who wants to be a CALS, just like I don't know of anyone who wants to be a PALS. The issue here isn't whether someone is cut out to be a care giver, but if the current level of care rises to the level of neglect. Yes, it does. I also consider behavior that humiliates and/or slowly robs another of their dignity to be particularly worrisome. ‎

CALS & PALS each have unique challenges but the bottom line is a CALS is capable of walking away from their situation, a PALS is not. Not only is he not able to walk away, he is also (increasingly) dependent upon another human being for his survival.

‎No one is here to criticize CALS, we've all had our [really] bad days and ultra low points, but I'm pretty sure none of us would ever dream of doing something like this, especially to someone we care about. Even if we thought about it during a moment of deep despair or frustration, we surely wouldn't act or follow through with it.

Adopting a toddler post ALS diagnosis is a monster, massive undertaking and it would be overwhelming for most. On the surface it appears to be a recipe for disaster. Without around the clock assistance someone IS going to come up on the short end. Both situations are very demanding, challenging, time consuming and emotionally exhausting.

I'm sure PALS neglect happens far more frequently than anyone knows about, I just want to make sure ‎azwmxman appreciates the seriousness of his situation. ‎

The escalating nature is a constant warning sign. Please take it seriously.

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Old 05-25-2016, 03:33 PM #11 (permalink)
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Default Re: What constitutes 'neglect'?

wow, what a tough spot. your local als chapter should provide information and assistance and get the ball rolling to resolve this most unacceptable situation. Also, the va has provisions for respite care. unfortunately, all va centers are not the same. Also the paralyzed veterans of America should advocate for you. you need help right now and not next week. please keep us post regarding your well being. Seriously.
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Old 05-25-2016, 05:32 PM #12 (permalink)
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Default Re: What constitutes 'neglect'?

I'm so very sorry you are going through this on top of ALS. It is unacceptable. It is blatant abuse. There are NO excuses for it unless your wife has had a mental breakdown.

You need to get help ASAP. Call your doctors, the local ALS Chapter, other family members, etc.
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Old 05-25-2016, 06:23 PM #13 (permalink)
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Default Re: What constitutes 'neglect'?

Thank you all for the comments and encouraging words. Ive been catching up on sleep today...didnt get much last night.
My wife got some respite today and is out of the house for awhile.
I am a veteran and will be checking in with them for additional help. I forgot about alsa as a resource and will definitely be making that call.
I'm also considering asking my daughter to come in and take over my care if she can do it.
I'll write more later but I'm still pretty tired.
Again, thanks.
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Old 05-25-2016, 06:28 PM #14 (permalink)
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Default Re: What constitutes 'neglect'?

I am hoping some respite comes for you as well. I am so very sorry this is happening to you, and with your family. It must be very stressful to be in the position of needing help and being resented for it. I also hope your wife gets the help she needs- which sounds like it should be counselling, first and foremost. I am sending good vibes your way.
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Old 05-25-2016, 07:28 PM #15 (permalink)
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Default Re: What constitutes 'neglect'?

I'm so glad you could check back in and have caught a bit of sleep - SO important for PALS! (for everyone I know)

I just have a feeling that if you can get into some respite real fast it will give everyone the chance to draw breath, and then work on the best strategy to move forward.

We are right behind you!
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