Lacking positivity

So sorry you're going through this Helen. Listening to others some people take strength from just making sure their loved one is comfortable. It sounds like you've done everything you can in that respect and now it's just a case of holding her hand and being with her. 

Talking to other carers who have been through this and partly depending on medication levels, your mum is probably not too aware of her situation. 

Look after yourself and really hoping your mum doesn't suffer at all

Sending you a virtual hug,

Chris

Thanks Chris x

HI Helen

so sorry that you are having to watch your mum go through this. Life is too cruel.

These tumours steal the person from us long before they pass and for me that's the most cruel thing here.  My husband has never been the same since a seizure two days before his surgery in Sept 2020. The current "version" is a very broken version of the real man but all I can do and my kids can do is be there and look after him as much as he lets us and as best as we can.

There are no hard and fast answers for how long this stage lasts sadly. 

Please take care of yourself here and trust that the nurses are taking the best care of your mum and that's she's not suffering more than need be.

Sending you love and light. Stay strong.

love n hugs

Wee Me xx

Hey Helen

I can only reiterate to you what I was told. Your mum is not experiencing this the way you are. Her body is so busy doing even the basics that she hasn't any spare capacity to process what is going on around her. And if she was in pain, she'd find a way to let you know. And the palliative care team know the signs also.

It's not selfish to want this to end. It's no good for anyone. At this point, loving her means letting her go. Have you told her it's okay for her to go now? That she doesn't need to hold on, that everyone will be okay now. I was advised to do that with Fi. I don't know whether it made any difference, but there is definitely something of people's will that keeps them going. 

As I may have said before... The clearest marker is generally when people stop drinking. That's when you know you are in to the last few days.

You are doing all the right things. Keep going. Keep loving her. Keep talking to her. I know it's agony but it won't last forever. And when she's gone you know that she knows you love her.

Big hug...

Pete

Thanks Pete. Wise word as always.  Can't tell you how supported I feel by the group and appreciate all the messages.

GP called me today and they are stopping a lot of her medication as she is struggling to swallow them and she is holding them in her mouth. They think she has a stroke or deterioration and her mouth has dropped and she doesn't have feeling in her left side. Being honest that happened a couple of weeks ago now. Mum has very little words, seem agitated but I've asked if she is in pain and she said NO but she doesn't seem right. 

Hey...

Has she got a driver?  Fi got to a point when she couldn't swallow her meds, so they moved her over to a driver which is basically a battery-powered plunger which slowly injects drugs over 24-hours into the muscle (normally the leg muscle).  It is helpful as well because it is a much more even dose of drugs, whereas with tablets you get peaks and troughs.  It just requires a nurse to come and change it over once a day.

I found that Fi woke up a bit for a few days when they changed her to the driver, because they couldn't get all the drugs as injectables so they just took her off them.  But inevitably her seizure activity started to increase so after a few days they increased the seizure meds and that meant that she went back to sleeping most of the time.  It really was only a few days at that point, because she had lost the ability to swallow, so really couldn't take much water and basically lost interest in it.  Of course, that is just my experience - not a predictiion of what your mum is going to do.

In general, if Fi seemed agitated, I asked them to increase her drugs.  I really didn't see the point in her suffering when it was really clear that she only had a few days to live.  The hospice nurses who came out were very accommodating - I think they shared my point of view.  It might have been easier for me to persuade people also, because I was looking after her in my house - so if I was struggling to cope then they had a strong interest in doing whatever was necessary.

Don't know if any of that helps.  Solidarity at least.  :)

As ever... look after you.

Pete

Thanks it does help. Today I think she was the worst I've seen her, but my elder brother said I need to be glass half full instead of glass half empty. Her voice has changed and swallowing her dinner made her cough and she eat very little. I don't want her to be alone and scared but with her being in the care home that's difficult. 

Hiya Helen. Hope you are doing ok.

Please know you’re not alone and we all understand. My dad is in hospital currently and I definitely understand the not wanting them to be alone in their thoughts. I think generally, we are more aware of what is going on than them, if that’s any consolation at all. It’s hard to find the positives though isn’t it. 
You’re allowed to feel a bit ‘glass half empty’, and don’t feel bad if you’re struggling to see any silver lining. Take each day as it comes and come and rant on here if you need to. 

xx 

Glass half full or glass half empty.....the glass is refillable. This is a tough ride emotionally and half full days are allowed. Take some time to yourself and re-fill the glass. You can't pour from an empty one.

Hang in there.

Love n Hugs 

Wee Me xx

Hey Helen,

Again - I absolutely recognising that "not wanting to leave her alone".  It is really tricky.  I was prowling around like a overprotective lion for Fi's last week.  The need to help someone you love, coupled with the complete inability to fix the thing that is broken is really tough.

I tried to be physically with her as much as possible, but had to accept that I couldn't be there constantly.  Easier for me, since we were at home and I had a few family members around sharing the load - but none of them felt it quite the same way I did and the reality is that there was still a household and a family to run (and lots of Christmas concerts from my youngest who is in about four orchestras).  The reality is that Fi didn't know whether I was there or not for much of the time.  I was far more aware of it than she was.  I suspect that is the same for your mum.  

I don't have any great suggestions for you.  Just to reiterate that we are with you - willing you to get through this.  It's the toughest thing you will ever do - but you will get through.  Keep going.

Big hug...

Pete