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Old 05-25-2016, 02:03 AM #3 (permalink)
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Join Date: 2013
City: lala land
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Interest: I lost a loved one to ALS/MND.
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affected affected is offline
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Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 8,576
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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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Buckhorn (06-23-2016)