Just needed to have a bit of a moan to an understanding audience. Thank you in advance.
My mom was too ill to come out of her residential care home for Christmas dinner and has been ill since then. Her various medical ailments seem to have moved on and I’m trying to get used to how things are, again. She has Alzheimer’s Disease, diagnosed roughly 2 years ago (but was there at low level for at least a year before that), the main reason for her moving to residential care. Then she was diagnosed with lung cancer early August. They gave her 9-12 months as it had spread and was too advanced to treat so she is receiving palliative care from GP, district nurses and a local hospice nurse. A DNAR is in place.
She has for a long time been extremely anxious and agitated first thing in the morning but is now usually ok by about 11am after the Tramadol has kicked in. Just lately she seems to struggle to ‘come round’ - she sits up (after getting out of bed, being dressed etc) with her eyes tightly closed and refuses to communicate. She may occasionally say the odd word but can’t hear you anyway due to every hearing aid being lost or damaged within a few days so holding a conversation is difficult even when she is lucid. This is how she was on Xmas day until gone 2pm. She was the same on Thursday - she didn’t understand what the Xmas presents were and didn’t know who I was, which is unusual. It reminded me of when she was in hospital after a fall which led to the care home move; she had hypo and hyper active Delirium for days. The staff at the home are really good with her and she will respond to them a bit more than she does me (I guess they are her family now). They are not overly concerned by this behaviour/condition and say it’s quite common, plus they see her at other times when she is able to engage in conversation and generally more aware of her surroundings. I really don’t know whether this is due to the Alzheimer’s progressing or down to the lung cancer and her body reacting to pain and other changes. She is unaware of the cancer diagnosis as she wouldn’t be able to process it and would forget anyway.
No one seems concerned about this catatonic (don’t know if that’s been the right term) state but I find it quite alarming. Doctors and nurses of course won’t be drawn on what causes it or if the cancer is progressing / how much time she has left. I’m worried that we’ll only know the end is near when it’s days away. I know everyone is different so there’s probably no definitive answer; it’s just so hard and our lives on are hold while we are in this limbo.
Feel selfish for saying it but i’d love a holiday or just a few days of not panicking every time my phone rings. Also feel a bit of a hypocrite as I’ve had a pretty bad relationship with my mom over the years (she was controlling and manipulative) but as an only child the duty of all this falls to me (we did thankfully sort out power of attorney and will before all this started). Think I’m just having a ‘woe is me’ day!
My mom was too ill to come out of her residential care home for Christmas dinner and has been ill since then. Her various medical ailments seem to have moved on and I’m trying to get used to how things are, again. She has Alzheimer’s Disease, diagnosed roughly 2 years ago (but was there at low level for at least a year before that), the main reason for her moving to residential care. Then she was diagnosed with lung cancer early August. They gave her 9-12 months as it had spread and was too advanced to treat so she is receiving palliative care from GP, district nurses and a local hospice nurse. A DNAR is in place.
She has for a long time been extremely anxious and agitated first thing in the morning but is now usually ok by about 11am after the Tramadol has kicked in. Just lately she seems to struggle to ‘come round’ - she sits up (after getting out of bed, being dressed etc) with her eyes tightly closed and refuses to communicate. She may occasionally say the odd word but can’t hear you anyway due to every hearing aid being lost or damaged within a few days so holding a conversation is difficult even when she is lucid. This is how she was on Xmas day until gone 2pm. She was the same on Thursday - she didn’t understand what the Xmas presents were and didn’t know who I was, which is unusual. It reminded me of when she was in hospital after a fall which led to the care home move; she had hypo and hyper active Delirium for days. The staff at the home are really good with her and she will respond to them a bit more than she does me (I guess they are her family now). They are not overly concerned by this behaviour/condition and say it’s quite common, plus they see her at other times when she is able to engage in conversation and generally more aware of her surroundings. I really don’t know whether this is due to the Alzheimer’s progressing or down to the lung cancer and her body reacting to pain and other changes. She is unaware of the cancer diagnosis as she wouldn’t be able to process it and would forget anyway.
No one seems concerned about this catatonic (don’t know if that’s been the right term) state but I find it quite alarming. Doctors and nurses of course won’t be drawn on what causes it or if the cancer is progressing / how much time she has left. I’m worried that we’ll only know the end is near when it’s days away. I know everyone is different so there’s probably no definitive answer; it’s just so hard and our lives on are hold while we are in this limbo.
Feel selfish for saying it but i’d love a holiday or just a few days of not panicking every time my phone rings. Also feel a bit of a hypocrite as I’ve had a pretty bad relationship with my mom over the years (she was controlling and manipulative) but as an only child the duty of all this falls to me (we did thankfully sort out power of attorney and will before all this started). Think I’m just having a ‘woe is me’ day!
