08/09: we started charting - meds, input/output at times, and sometimes notes from the day.
08/11: she went on Continuous Care for uncontrolled nausea, dizziness and pain management.
08/13: we upped her methadone to 3 times a day (aka. q8)
08/18: we met with a private agency to discuss overnight care. mom sat in on that meeting and had a lucid discussion.
08/19: mom was getting more and more unsteady with the walker (can't remember when she started with the walker exactly) and had a fall with my svelte-wife trying to catch her. they both went down (mom outweighs my wife by 50 lbs). everyone is ok - just scrapes and bruises. luckily our hospice nurse was in the house at the time.
08/23: tucking mom into bed she stops me to ask
"If a fish is nibbling on my blanket and I slap him in the face, will he stop?"
I answered "of course."
08/24: we meet the new night time aides and one starts that night. we spent the night to make sure it all goes ok, hoping we can soon start sleeping at home again.
Somewhere in here we start using a wheelchair.
08/25: Mom vomits in the afternoon. This is particularly bad...because she is vomiting as a result of a bowel obstruction. I am alone with her at the time and luckily have my cell in my pocket. I call hospice and my close-by wife. My quick-wife is there within 10 minutes. The on-call nurse is there within the hour. Mom goes back on Continuous Care.
08/26: Somewhere in here we start Decadron (steroid) as an anti-inflammatory. This improves Mom's physical condition over the next couple days. But she seems rather confused. She is having trouble with the phones and tv remote.
More of her meds are becoming scheduled. she now takes methadone, zofran (for nausea), ativan, decadron /q8; meclizine q/12; and her colace and miralax daily.
(did you know that all opiates and narcotics cause consitpation?..sometimes severe. so that means...that drug addicts are constipated. shame really. they could enjoy their drugs so much more if they paid more attention to bowel health.)
08/28: With round the clock care, and help from all of us we actually get Mom outside of her house for the first time in weeks to watch the motorcycles ride by.
The CT United Ride goes right by her house. This year there were about 2500 motorcycles.
here is mom and her aide waiting in great anticipation.08/29: Mom is starting to refuse to take medications. She wants to write out her orders, she wants confirmation that we are dispensing the right meds. I walked in this afternoon to find my wife and the hospice aide had moved all the furniture out of the way so mom could fit her wheelchair into the spare room to review her medical records from the past couple months. At the time I got there she was already almost 2 hours late on her meds and sitting at the desk writing out each medication in detail.
I called the agency to arrange for 24/7 care. Its now become too difficult for us to handle. We are burnt out, we've not worked full days in a month and mom is uncomfortable with the amount of personal care we now need to provide.
08/31: Continuous Care stops. Mom is very confused. We are helping her to dial the phone.
09/01: Mom's next door neighbor stops by while my caring-wife is on duty. She's recently had a stroke and can't button her shirt, and is looking for some help.
Gotta love life in the retirement village.
09/02: Mom can no longer differentiate the phone from the remote. She cannot dial numbers even when she is told which number to press. We spent a few long minutes with me saying:
press 2... she presses 2
press 0... she presses 7
ok lets start over.
press 2... she presses 2
press 0... she presses 8
ok lets try again
press 2... she presses 2
press 0... she presses 0
press 3... she presses 7
09/03: She tries to document her meds for the day. She can no longer write.
09/05: Inez comes. She is our first full time aide and will stay from Sunday - Wednesday. Skeptical at first, we grow to love Inez. She clearly has experience with dementia.
...
3 comments:
Wow, the swift progression of the decline is heartbreaking. It's exhausting to read it. Can't imagine going through it. I hope your mom's body lets her go soon and vice versa. xo
Oh dear. It just adds a level of pathos that she knows (knew) so much about the medications, her medical record, healthcare in general, etc.
Thinking about you all.... xoxox
Just continuing to send you my love and prayers.
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