Mams glioblastoma multiform

Oh Magpie,,, what a rough weekend you've had. Yes you do have the right to know what medication she is on. Is she still in the nursing home? Is there the option for hospice care? 

Can I suggest that you ask to speak to the doctor to get a clear picture of what their expectations are and what medication your mam is on? Have they mentioned perhaps putting in a syringe driver to help keep her more comfortable? 

I'll be honest, for the last few days we spent with G in the local hospice I didn't always ask what was in the syringe driver. I trusted that it was the right cocktail to keep him comfortable. When he did show signs of agitation, I buzzed for the nurse and they "topped" him up with something. At the end he had two syringe drivers in but whatever was in them did the job and his last couple of days were very peaceful.

Keeping the communication channels open between yourself and the medical staff at this point is key, in my own experience.

I wish there was something more I could say to make this easier for you. I get your frustrations.

Sending you a huge virtual hug and much love

Wee Me xx

No they haven't mentioned anything like that, they are still ask my mam first before any medications, which I think is strange. The palliative nurse going in tomorrow so I've left a message for her to ring me as the nurse from the home have come up with a plan in presuming they want to go through it with her! I ask for the list of meds earlier in the year they said if I'm power of attorney, otherwise I can't access them! 

If I hadn't mentioned about my mam her infection could of got a lot worse. That has me worried now! About them taking care of her, some of the nurses are trying to calm her down, saying you can't move etc ... I know they mean well but how can you tell someone who has no control over emotions etc ... I finding this so hard like I'm hitting a brick wall constantly. 

Hopefully we can come up with something tomorrow for all of us
Xxxxxx

Hi wee me, 

Seen palliative nurse just before, at my mams nursing home, they are starting lorazepam for her it goes under her tongue. Hopefully that'll take the edge off things. 

I feel bit better today. Obviously the signs are there, she is on the later stage of end of life poor soul, the nurses are going to make sure she's not in pain every few hours just to check on her! They also ask my mam if she got another infection would she like more antibiotics or leave it, I'll speak with her tomorrow about that. 

The palliative nurse explained all of this to my mam, the plan of all the medications that will be started when needed. 

Ask her how she was feeling, is she scared the end is near, my mam says I'm just frightened case it hurts that's what scarring her, she says I hope I just go in my sleep. 

I'm happy my jobs done now! 

Xxxxxx

Hi

sounds like you've got a decent plan in place now. As you say, your job's done. All any of us can do is try to ensure that our loved ones are kept as pain free and calm as possible.

The thought of being in pain was one of the things that really scared G. The nurses promised him that he wouldn't be in pain and that they'd take care of it and they did.

One day at a time...

love n hugs

Wee Me xx

I know, that's my worst fear for her, I'd feel guilty because I'd think I'd failed in doing my job, least they are going to push my mam keep asking her quite often to see if she is in pain. I've read some stories that the person that passed didn't have any pain, whether they had already giving them something. Like I say I know when she's in pain, I'll tell them even if I think my mam is saying no. See what happens. Hopefully it's pain free and she's comfortable 

Xxxxxx

Hi wee me, 

Finally getting around to get her lorazepam today, she was supposed to get it yesterday, chased it again. Think they were sorting prescription today. 

My mam was being very demanding to the carers today every 2 minutes the buzzer was going poor soul. 

She says to me today Helen I appreciate everything you have done for me, I said mam I'd do it all over again in a heartbeat. We never used to say I love you to each other, it was the way we were, lately I've always said it to her when I leave until today. She says Helen I said yes she said I love you, I said I love you to. There's me thinking is this a goodbye. 

It's so sad. Usually I can't wait to get out the place, I'm staying longer and longer as I don't want to leave her! 

This journey has been horrible at times, also been comforting to if that makes sense! 

Xxxxx

Oh, Magpie, this stage of the journey is beyond horrible. I'm glad you both took the the moment though to let the other know they were loved. Those moments are important. We don't tell our loved ones often enough that we love them.

I hope they get the prescription sorted soon. Even at a low dose it should take the edge off the anxiety. I know it certainly helped G over those last few weeks. The good thing for us too was he very quickly got hooked on it. He took his pill about 5pm so on the days he had escaped for a walk it ensured he was back for 5pm as he was craving the lorazepam. 

One day at a time. You're doing so incredibly well here. 

love n hugs

Wee Me xx

I know thank you, I think you know the end is near, but it takes away all the bad times we've had they are like all forgotten if you know what I mean,  I'm literally terrified at the thought of her not going to be here soon, I don't know what I'll do. It's been such a long journey. It feels like years not months. 

I hold my hat off to you, I know your journey was a long time, I can't even imagine how you were feeling during that time! 

We'll see how she goes. She keeps saying it won't be long! 

Xxxxx

All the emotions you are feeling are only natural. I was pretty terrified throughout G's journey. That's how I found this community in the first place. I just needed someone to hold my hand throughout the journey and that's what this community did. 

You will be completely and utterly exhausted by the end of the journey (emotionally, mentally and physically) but you will get through it and come out the far side.

People say you need to move on... you don't. When the journey ends and the dust has settled you realise that you do move forwards but you move forwards taking part of the person with you in your heart.

love n hugs

Wee Me xx

I know definitely, it's just hard at times. But I know I'll carry her strength through this journey. You always expect your mam to live forever. 

Thanks for all the support you have given me. I'll keep you updated. Do you have Facebook? I could message you on there if you don't mind! 

Xxxxx