Towards the End

Hi,

Thx for sharing & I'm so sorry for your loss. My was diagnosed in October. I was just wondering when you said massive cognition decline, what do you mean? Also, was your mom taking any pain meds? Because my mom sleeps a lot too but not sure if it's mostly bc of hydromorph or tumor? Prob combination.

Hi Jenna,

Thanks for your messages. I also see some similarities between our mums. It is so difficult watching what once was an independent woman, decline into needing constant help from others. 

So to answer all your questions : 

Around 4/5 weeks prior to mums passing, I arrived back home from studying away for 5 weeks. It was such a shock to see her, as she had just changed in a way I can't really put into words. it was almost like her personality had been zapped away, with just shards remaining. This was devastating for me, as I felt like my mum had died without actually dying yet! 

Over these weeks, she was still able to talk, however her speech was very slurred and she would often talk about things that seemed irrelevant or just strange to bring up. Her memory also took a decline, mainly her short term. 

Something as well, im not sure of the term to describe it, I was having a chat with her in the car, and I was holding the tears back as best as I could (for which I failed!) and she just didn't recognise or acknowledge my upset. That was a tough moment for me, as I knew at that point, that wasn't really mum anymore.

So as well, mum did start sleeping for most of the day towards the last few weeks. She wasn't on any pain meds until her last 5 days in hospital as they just loaded her up with morphine so she could pass peacefully.  The decline in the last week was sharp, she woke up on the Monday, was sick and slipped into a very deep sleep, till her passing on the Friday.

I hope this helps you in anyway, please let me know if you have anymore questions, or if you need me to go into anymore detail. Sending hugs to you and your family during this painful time. Please also take care of yourself! 

Alex :) 

Hi Jenaa

My husband was diagnosed when he had a seizure in Apr 22 and we went thru the usual route  He has been slowly declining from Aug ‘23. When I look back at Aug/Sept, I couldn’t see the decline coming on a daily basis but if I compare week on week , I could see the difference. His sleep slowly increased. 
now he sleeps pretty much whole day. He wakes up only for food and toilet. He is not any pain med. He takes paracetamol morning and night. Otherwise he is only on Kepra and Dex. As per the doctors, sleep/fatigue is a sign of tumour progression. 
congn decline is not able to understand what we say, not able to show emotions, not able to articulate what he wants to convey. Till 1st week of Jan he was not able to articulate but still understood what we were saying to an extent (or at least I thought so). But now it gets more and more difficult to make him understand even simple things. Hospice has given a wheel chair/commode but he refuses to use it for going to toilet. He is quite wobbly when he walks and his weight has increased a lot because of the steroid. if I ask him to sit in the chair to go upto toilet he just doesn’t get it. He thinks I am not understanding his urgency to go to the toilet and starts shouting. 
Takr care of yourself. Feel free to ask any questions. We are together in this. Sending hugs. 

Hello Alex 

so much similarity. My daughter is away studying as well and is coming back today. She last saw my husband during Xmas. She is going to be in a shock as well even though she has been talking/ trying to do video calls every now and then. 
You are right the entire personality changes and it’s not the actual person at all. Sometimes my daughter says we seem to be talking of him in past tense already even though physically he is there with us. 

Morning Jyo,

Bless, I completely understand how she might feel. I have two younger sisters ( we are 24,22,21) and it was just a very confusing time for us all, as to be honest, we thought we had more time. 

I completely agree with you when you say talking of him in past tense. At the time I felt quite guilty for it, but I think internally I had just started the grieving process before her passing. Looking back now I don't feel that guilt anymore as I realise it was just my brain trying to comprehend what was unfolding in front of me. 

If you have any questions about for when your daughter comes home, please let me know and I will do my best to help in any way I can!

Thanks for your message Alex. My daughter is 21 and I can imagine what you and your sisters must be going thru. It must be so difficult for you all. Hope you are getting support from family and friends. 
Hugs to all of you. Loads of love. 
I shared this thread with my daughter.  

Hi AlexC1999

I read this and understand exactly what you mean. My husband was diagnosed in August 23 and displayed all of these symptoms. Before diagnosis. I remember sitting in the car (scarily he was still driving as doctors said that they thought his memory loss and cognitive decline was due to stress) and I was talking to him about how worried I was about him being ill and started to cry - he didn’t acknowledge me and this was so hard as he has always been so kind and caring. He was eventually diagnosed following a scan, though he can remember nothing of this. At home while we were waiting for next steps he started vomiting and collapsed  so I took him to A&E … over the next few hours he was essentially dying (everything everyone says about end of life resonated with me from this time) until they blue lighted him to Cardiff for emergency surgery.  He has had treatment and now on the 5 day chemo cycle. It scares me so much that we got to ‘the end’ but were pulled back at what felt like the last moment. I feel likeI have had a glimpse into the future and it scares me. I can’t imagine us going back there but I know we will someday. We have two boys aged 10 and 12. The trauma of last summer is so vivid in my mind and he can remember none of it … it’s hard to get my head round it all some days …. 

Hi Sun,

thanks for sharing your journey. It sounds like it’s been a bit of a rollercoaster for you throughout. I can’t really imagine how you must be feeling either right now. Going to the “end” to then have the clock turned back, it must be such a conflicting time! 

I’m so happy that he’s been able to start treatment. I really hope that it all goes as well as it can. 

I do however understand what you mean when you say it’s hard to get your head around things some days. There is no guide book for something like this, no video you can watch on YouTube that’ll give you a step by step guide on how to get through this. I will say however that you are doing amazing just by still being here and taking things day by day. 

i applaud you as well for sharing everything. I know it’s not an easy thing to do, and I hope it’s helped in some way. I found some comfort in knowing that other families were also going through this, and still getting through the day. It can feel quite isolating at times. 

Also remember, you’re only human. It’s okay if some days you just can’t give 100%. Never feel guilty over it’!

If you have any questions or just want a chat, please feel free to reach out at anytime. 

take care,

Alex

Hi,

I'm so sorry & thx for sharing. This journey is a roller coaster. My mom was diagnosed end of October. She has lost the use of her left side & is blind in one eye now. Cognitively she has declined too. It's been 3 months since diagnosis & she only had palliative radiation which hasn't responded. I have to decide now between hospice & long term care. I'm wondering what was ur reason for long term care?

Thx.

Hi Jenna.

its a tough dexcision and there is no right or wrong decision. For my husband we are deciding on the basis of quality of life. We don’t want him to lead a life of vegetable where he is lying in bed without understanding or not being able to recognise or tell us anything.