Hi all.
We have had such a rocky week this appears to be a good a place as any to share it.
Started with us being given a two week turn around to give mums house back. I think we have finally got there but that in itself has been tough! I then had several phone calls from the care home to let me know she is slowly declining but not to panic.
I went in to visit on Friday and was truly shocked by the decline in the last week. Mum has stopped communicating with only the odd single word, which then appears to exhaust her and she's sleeping alot more. It's as if her body wants to be asleep all of the time. We then had a couple of days of no eating or drinking except for a few sips of water. She is now needing assistance with everything she does e.g. someone to hold the cup or to feed her. She has started to refuse drinks and pills, I have asked today for a medication review as this has started to become sporadic and I think it's time to switch to injectable medication. This is something the nurses agree with, but we have to wait on the gp to give the go ahead.
When we went in tonight, mum was in such a deep sleep that she didn't realise we were there. I happened to bump into the manager of the care home who told me there is now decline every day, but she is unable to predict how long. We are back in that horrible place whereby we would just like a guideline because watching this deterioration daily is absolutely awful. Today she woke up and ate a sandwich randomly after a few days of not eating. This then exhausted her and she fell into a deep sleep. She is becoming upset at having to have someone do everything for her and its just so difficult to watch. But we just have to continue to watch and wait. :(
I'm so sorry to read this. I know when my wife was at this point I kept looking at the timeline here General 3 — Brain Hospice to try and work out how much longer she might have. In my experience because I guess she was relatively young (49) and fit (other than the obvious) she went through each of these stages a bit slower than indicated.
It does sound if your mum's starting to struggle with orals meds then it might be time for injectables. My wife used to just hold the meds in her mouth and insisted she could swallow them but after 10 minutes they'd still be there. Her nurses decided to move her straight to a syringe driver because she was also starting to suffer seizures a lot so needed sedation.
It's awful to watch but please know those of us in the group who've been there will be thinking of you and your mum.
Sending a hug,
Chris
so sorry to read this ECA3. It's so hard to watch and so hard for the medical teams to offer an accurate prediction. In our case, the hospice Dr said to me that her rule of thumb was if they were seeing changes weekly, then they were talking weeks, if the changes are daily, then it could be days. There are no hard and fast rules with this rollercoaster. We were told "days" in Feb and Aug last year before those final days came in October.
Hopefully if they can get her switched to the syringe driver for meds that might make things easier for her.
Sending you a huge virtual hug and lots of strength.
Love n hugs
Wee Me xx
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