Tiny doubts about the end

[FanOfBlue]

My DM has moved to palliative care at her home, her heart and other organs are failing (she had a silent heart attack and pneumonia a month ago). I just can't help but keep thinking that there is some small part of this that might be a mistake ...and she has been put on a syringe driver today. She has been Ill for so long, mental health issues, arthritis and dementia, part of me is struggling to accept this...a tiny nagging doubt.
Yesterday she had terminal agitation and kept asking for tea or water or cherryade or chocolate and wanting to get out of bed (despite being sedated and seemingly forgetting she normally has a wheelchair). What if she really is hungry or thirsty? She hadn't eaten for about six days. I guess I just keep thinking... what if?

She looks really healthy too..she was on oxygen for about three weeks in hospital and started to put on weight when she went to the care home this year after negecting herself for such a long time. She always looked young for her age. She really is quite young too...75.

I'm aware that going onto a syringe driver usually signifies the end is nearer. How long might this stage last? I'm finding it quite hard to get my head around.

It’s such a difficult time, @FanOfBlue, in my experience, with doubts and questions. Often I believe even the medical staff can’t say how long, but have you been able to talk to them?

I'm sorry you're going through this. I worked, for many years, as a carer, including palliative care. You are right to think that a person having a syringe driver is getting to the end of their life. It might be weeks, sometimes days, so your best bet is to speak to the people looking after your mum. 75 isn't old these days, but you say your mum's organs are failing, so things are not looking good. x

Thanks @sparklinglime. She is definitely on a palliative care pathway. Her says we're being monitored to take her to hospital if they got below a certain level. Her GP made the call that it would be too traumatic to move her last time they got low again. She has been declining for a week now. She has declined noninvasive treatment on her care plan.

It is difficult as my DSis is main carer and does all liaison etc. She is overwrought and busy with it all. I'm trying to help as much as I can. I guess I'm just struggling mentally...for the last ten years her illnesses have been linked to events, just this time it seems there is no event.
My DSis has POA so everything is going through her at the minute. DM lives near her and I live a couple of hours away.

Thank you @TheCreamCaker

I'll try and have a good chat with the staff at the home tomorrow. The community nurse asked if I was staying the night last night which shocked me a bit. Ds is just down the road but I felt like I should just stay in the chair and watch her all night.

She kept telling me not to worry and go to sleep yesterday...and pretend smoking cigarettes!

I’ve been through this with both of my parents and I feel for you. My mum hadn’t been eating or drinking and then rallied, asked for yogurt which she ate a little of then had a good day chatting. This happens quite a bit close to the end I understand. I didn’t want to let her go so I believed ‘they’d’ got it all wrong and she was getting better. I’m sorry, she didn’t. Say your goodbyes, hold her hand. She will know you’re there.

Thank you @Lentil63. I'm sorry for your loss

We held hands for nearly six hours yesterday, albeit through PPE..blue gloves.

I admit that it seems a bit barbaric to deny her food and drink. Is this part of palliative care so that she dies sooner? What “medication” is in the syringe driver and what has it been prescribed for? It’s an added dehumanising edge that they are making you wear ppe gloves!!! How does this help anyone who is already dying?! Do they know that respiratory viruses aren’t carried through the palms of our hands?! I’d be tempted to ditch that one and let them call the police if they disagreed. Why on earth covid has meant that we need to treat the already dying so awfully I no idea.

The difficulty with food and drink at this stage is the risk of choking. You want to give them what they want, because that's what we do when we love someone, but we have to balance that with the risk of causing unintended harm. Can you get some mouth care swabs? You can use those to give her water or juice. Also mouth care is a really important part of palliative care, applying vaseline or a good lip balm can make a loved one more comfortable, especially if they are breathing through their mouth.

I'd echo the above on gloves. Touch is so important. Also your mum may be very warm/ touch sensitive due to the medication, your own skin is far more gentle than gloves. I'd be amazed if anyone tried to tell you to put them on under the circumstances.

I wish you and your mum peace and comfort in this difficult time.

Thank you both. The manager us very strict about PPE, understandably. We have some nice balm for her lips and sponge sticks. The balm is all purpose so I was massaging her hands yesterday. I'll try with no gives tomorrow...I do remember thinking her hands felt warmer than mine.

*no gloves not gives

I took gloves off in a similar situation, nurses thankfully didn’t mind.

How are things tonight @FanOfBlue? Are you up again tonight?