Tonight I responded to an email from an agency worker I've got to know over time. She knows how difficult things are getting these days and is trying to find me more help or even just knowing she is there and is trying to help and providing support by listening is significant. So.. tonight I wrote her this:
omg my early evening/nights with her are getting so difficult. I believe on top of everything else she has "sundowning". The timing is about right. Her confusion gets worse. She gets agitated, words slurred or making no sense at all or just a jumble of wrong words. Sometimes no matter what I do I can't calm her or for the life of me understand what she is trying so hard to tell me.
It's getting so hard that 3 weeks ago this Sunday I called my family Dr and gave in to give her an anti-psychotic. He thought it was a good idea and had brought it up a couple of times. She gets so agitated and has hit me several times and bit me a couple of times. She kicked her night sitter in the tummy too :-( The poor lady has a hernia so it hurt her but thankfully she understands.
So I wait for the medication. I ended up in the Dr's office yesterday and he actually thought I could be having a mild heart attack and after an ecg and blood work for enzymes we talked about my mom and now he announces that he talked to the elders clinic (which I have absolutely no faith in at all - matter of fact I barred anyone from their services to tend to my mom in hospital or even consult on her case) and they him they don't think it's a good idea and they prescribe melatonin, wonderful.... an over the counter pill that isn't covered either and will do NOTHING to help the situation I'm dealing with early evening/nights. I'm bleeding money these days. I have depleted every cent of my savings as it is. Anything else comes out of my odsp cheque.
You know.. they tell you to take your elderly parents home, age at home... what a load of crap. What they don't tell you is there is no help there for when you really need it. All services pretty much go 9 - 5. Well someone better tell the dementia/Alzheimer patients that they are only allowed to act out during those hours so us caregivers can have some sleep and get our stupid floors washed and cupboards cleaned and dishes washed. My place looks like a hurricane hit it because I have no time. To do dishes I do 2 or 3. Turn the water off, listen for her, go into her room and check on her (she forgets she can't walk and falls out of bed), then I can go do 3 more dishes and so on and so forth.
No one tells you what to expect, they just let it hit you in the face as time goes by and you are shell shocked. Never in my wildest dreams did I ever think this person I am living with now would be my mom. No one prepared me for this, no one even uttered a word it could come.
Seriously.. there needs to be classes for this. Classes to take complete with video of these kinds of things BEFORE people take home a sibling/parent/grandparent. Like prenatal classes, we need pre-caregiver classes. If I had the money I'd start them myself. Hell, no one even trains you how to change an adults incontinence products. It's nothing like changing a baby, even an active baby. Adults are a hell of a lot stronger and when they say no.. they mean it! There is no holding onto a 15lb kid to do it.. they are full grown and I'm telling you, when dementia hits, they are bloody strong! I can't believe how strong she is at times.
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