Things are changing - I think...

Hi Helen,

I really feel for you and everyone who has to go through this. I know exactly what you mean where every sign of worsening symptoms or a new symptom has us asking is this it, is this the beginning of the end?

My wife stumbled and nearly fell this week and then today she was complaining of neck pain which she hasn't had since pre-surgery. So like you I have a mild panic and feel like I should be prepping for a sudden deterioration. She also stopped wearing her glasses pre-surgery and she's very short sighted so would just bump into things and not care. She's worn them since thankfully. 

It's just impossible to know isn't it. It also must be hard having the care home talk to the doctors. I think all you can do is wait until they've spoken and see what they say. If she worsened would she be moved from the care home to a hospice or can they manage her there?

All the best and keep us posted,

Chris

That's completely it - thank you Chris. It's comforting albeit upsetting to know others are going through similar things.

I am going to call the home this morning and if the GP is coming to see her, I want to be there. We had this the other week when she saw the GP without us and mum can't remember the visit or what was said. I feel like a control freak but they don't know my mum.

We have had a few good weeks, and when I say good, without drama is more accurate. So when things change again it hard. 

I really do appreciate your response.

let's she what today brings...

H

Hi Helen 

Thinking of you <3 

I think we are a few months behind you on this journey.. from what you’re saying it definitely sounds like things are changing but it’s so hard to know what’s just around the corner isn’t it. Sorry I can’t offer up any advice, but just want you to know you’re not alone in questioning ‘is this something new?! What does this mean?’ 

P.s have a wine xx 

Thanks for your response, I do appreciate it x

HI Helen

I'm so sorry to hear about all that's going on. This rollercoaster ride is cruel.

I appreciate that you said the care home are calling your  mum's doctor today but it might also be a worth you giving them a call too to express your concerns. I was advised to report any changes that concerned me to our Dr.

My husband has experienced issues with his eyesight in the past couple of months so it may be that your mum's not seeing as well with her glasses on. In my husband's case, his sight in one eye narrowed down to a thin tunnel of vision cause by the tumour impacting the optic nerve. Just a thought...

Like your mum, he's no longer on treatment other than Keppra to prevent seizures. The oncologist prescribed steroids as his last scan showed a lot of swelling. He refused point blank to take them for over a week and then somehow my daughter talked him round and he agreed to take them for a week. The improvement they made have been quite significant. I know it will be short lived but they have helped so perhaps your mum just needs a wee medication tweak in there too.

No need to apologise for rambling - you weren't anyway - this group is here to listen. We're all in this together and we'll all help each other through.

For now, I'm sending you a huge virtual hug and buckets of positive energy. This is a gruelling emotional ride...I get it. Stay strong.

love n hugs

Wee Me

xx

ps - maybe medicinal glass of wine might help. Worth a try :)

Hi Helen,

Sorry to hear all that is going on.

Most of what you say chimes with me, I'm afraid... trouble swallowing, loss of mobility and incontinence are clear signs of progression.  Also, my wife stopped wearing her glasses some weeks before she died.  I think that her eyes had stopped focussing and the effort involved with processing all the incoming information was too much for her.  So she started by not wearing her glasses and some time later progressed to only rarely opening her eyes at all.

I'm going to be a bit opinionated now... If your mum is no longer receiving treatment then she should be under a palliative care team (or a hospice team - the two are more or less interchangeable in the UK).  GPs and care homes are great, but the care should be being led at this point by a palliative care specialist - they have a much better understanding of how to prioritise care for someone who is nearing end of life - how to keep them pain free and confortable.  I looked after my wife at home till the end with support from hospice and GP - but it was the hospice making suggestions as to what the GP should be prescribing. 

Definitely a good idea to be there when the doctor comes.  Hopefully they are coming from palliative care.  If not, I'd ask to PC to get involved.  Any PC team will have an understanding of what you are going through and should be very happy to take as much time as is necessary to talk you through it and provide whatever support you need. (This is about you as well.)

The key objectives now are to keep your mum free from pain and distress.  It sounds like the treatment she is receiving is doing that - there should be not problem with keeping it that way.  Her care needs are not going to be very complex from here on in - so unless there is a good reason to move her, I would think that the care home will be happy to minimise disruption and keep looking after her. 

These next weeks will likely be harder on you than they are on your mum.  She is not experiencing this the same way you are.  The sleeping and the lack of energy are a blessing - the body's way of shutting down protects us in those last weeks of life.

I'm really sorry you are having to experience all this.  Big hugs...

Pete

Thanks wee me and those positive and virtual hugs are right back at you. I really do love and appreciate that you all living this rollercoaster journey too but still take time out your day to offer support and invaluable guidance.

xx

Thanks and you are far from opinionated, that's the thing with we had no palliative care team involved. Given what you have said that's my next mission to speak with them. 

I thank you so much for your advice on what you have been through with your wife, comforting to know there are similarities.

xx

GP visited mum and I was present with the senior care home member of staff.

This morning the staff at the home have said that mum won't let them her touch her and is screaming out in pain. Mum wouldn't put her glasses on said they hurt her. Also complaining of pain before she is touched. But then a hour later is saying she is in no pain.

GP asked mum where pain was and she said middle of her back but to be honest, I am not sure that was right. The GP asking questions results in mum getting annoyed with me cos I always know. Mum couldn't respond to the questions just sat with her head down. Again something new - mum usually had an answer.

They have prescribed painkillers and mum would only have paracetamol they did offer stronger but she won't take them. GP also said that she could go to hospital for scans to check what the pain was and what did we think. I think we will decline that as personally I think travelling to hospital, never mind scans will be traumatic for her at this stage.  GP said we need to watch for if she looses feeling in her legs and we must report that immediately.   All I want is for mum to not suffer any pain but right now I don't know if she is in pain (face says she is) or whether she is fighting against having to be hoisted. It's like she is trapped in her mind at times - if that makes sense?!

thanks for all your messages, I am so grateful.

H x

Hey Helen...

I fully agree that a trip to the hospital for a scan is the wrong answer at this point.

I am really grateful for our GPs.  They did their very best to look after Fi.  But they are "General" Practitioners.  Just like the hospital... they are there to find and solve health problems. And that is not really the space your mum is operating in now.  The priority is not making her better but keeping her comfortable.  And GPs are rightly programmed to worry about long term side effects of drugs such as morphine, whereas a PC team worry only about what is happening here and now.

One option would be to find and call your local hospice https://www.hospiceuk.org/hospice-care-finder.  Hopefully they will connect you to a nurse or doctor for a chat about your mum.  They should be able to either get involved directly by writing to her GP, or advise you who should be getting involved in your mum's situation.  I think you should be pretty well insisting on getting her assessed by a PC specialist.  And I hope you won't have to argue for very long about that.

Your Mum doesn't mean to be cross with you - everything must be confusing and scary for her right now.  The fact that she has a pop at you just means that she is secure in your relationship. 

I know this is a stressful time for you.  Keep going.  

Big hug...

Pete