The GBM grade 4 brain tumour (I assume your partner has the same) journey with my partner Lorraine has been since January last year including operation, radio and then chemo therapies till 3-4 months ago when the chemo was not giving enough benefits as against the harm it does for the quality of life, and the time left
Lorraine’s tumour is located over her communication/speech area and her speech has deteriorated mainly since January this year to mainly a babble. She has been unable to say any form of yes or no for the last 3-4 weeks Her communication, her mind wandered off if I asked a question 10 times there is no acknowledgement. Tiredness seeps through, walking issues developed, then some falls. Difficulty of getting to a toilet helping to get there then it progresses to cleaning her up at the toilet….some days she just does not make it, other days she is not aware of that she has shitted in her pants, in the bed or on the sitting chair, so be prepared for cleaning up. Dinners - slowly ended up having to feed her food, it became over 30 minutes to just feed her (get meals on wheels saves a lot of time away from her – need to stay close she would try to get up let the cat in, go to toilet on own….she would fall and not be able to move on the floor.
Lorraine had a multiple seizure 6(?) weeks ago so to hospital for a week - new medications she can’t walk anymore. We live in a flattish area near lakes and ocean so easy wheelchair walks. 2 weeks ago she had a extreme bowel pains (thought it was bowels as best guess- she can’t communicate) to the hospital new drugs start of her pain phase. She is now on morphine which is progressively increased to manage pain as it increases. Our bed room is now like a chemist area being taken over with her medications and needles (that I use to administer booster shots for the morphine (thankfully only once I do not have a calm hand so my injection hurted her) Palliative care nurses inserted extra ‘ports’ for me to access with syringe a minus the needle), wipes, incontinence pants etc hospital bed, tables (did have commode chair, a toilet seat for extra height over the toilet).
Got her home that afternoon from hospital - she shat 5 different times Changed her clean her up, change her bed washing…. a long day. Next morning another round, once only though So it looked like her bowel blockage was now OKish. A few days later she gets a cathode inserted so incontinence in bed so much easier no incontinence pants (also her food has dramatically reduced good for me – not for her)
Now Lolly has entered her final stage. She is asleep/unconscious from the tumour and relief from the morphine , Dex etc. she has been in this comatose stage for 3 days with her death expected within hours – it was not expected to go this long, she seems resilient. She has developed pneumonia which has produced body secretions up through her mouth and nose - I have tried to best manage The doctors have since given her some other stuff to help clear the fluid and after 24 hours that has settled she had the gurgling sound in the throat when she breathed (I think its different from the death rattle that is often talked of) never the les that has been there for 36 hrs in different intensity that has now gone and she seems to breath fairly easily. She seems to be without any pain (including bed pain) comfortable and looks like there is nothing the matter with her. It’s a surreal journey I wake from a 1 hour sleep… has she died ? I have nano naps sometimes hallucinate where I am, my thoughts get tracked onto other issues- work or other things outside during the nano sleep. I hear Lorraine’s breath and it takes a few moments to bring my mind to where I am Its odd, and I think I am living in that other world things are more “normal”
I am the link pin for Lorraine to the outside world and the outside world to her. Close friends family others al bring their stories their grief. These last few weeks I have been overwhelmed by my own grief each day a little more, then others want to talk and I get to regurgitate again. I have stopped outsiders access I cannot deal with the emotions and the small talk to get them through their uncomfortlessness about ‘anit it awful’ and their experiences of grief that surface---all supposed to be well meaning but it’s shallow and maybe for another time and place.
Lorraine has taken me on my biggest ride of my life I have been blessed privileged to have been chosen by her It’s a highly challenging and rewarding experience that no oneelse will ever be able to show and experience with you (to the degree of intimacy with your partner
Lorraine’s breathing is gaining softness her for coming death looks beautiful and peaceful I am so sad to see her go I will travel a new path without her with memories
Her breathing is softer
This is my story if you choose will travel not the same but something similar
There are the palliative care nurses who are walking angles talk to them too find what back up is available in your area
Hugs to all what ever decision you take
