Just a couple of recent update notes from Charles.
A about a week ago, some of my more instense "guts" issues got somewhat better as we worked to "dial-in" a better combination of opiods for pain management vs. other things to keep my bowels from getting painfully clogged up. I'm grateful for those successes. It funnny how now that the time comes, there can actually be some sense of satisfaction in literally rolling around in shit and doing battle with pads, a bed pan, tons of dry/wet wipes, and all the resettling & clean-up afterwards.
On the other hand, I am sad and disappointed to report that it has been getting harder for us (and especially for me) to try keep a good emotional fix on things, and to try to stop myself from turning too critical, short-tempered, and just plain mean over what should othewise be more routine, "doable" issues like those we've often handled during the past 8+ years of terminal diagnoses of advanced cancer(s).
This week I'm still dealing with more loss of mobility, the current bedbound state of things, and some more recent faster deterioration of many muscles/nerves in both lower legs, feet, ankles calves, and thighs.
It is horrible when stresses and conficts arise between intimate caregivers.
This afternoon I decided to try for some things better, after reflecting on some of these experience with their cloents of a few decades. I took my first lowest starter dose of Hospice-prescribed Lorazepam, the commonly used anti-anxiety medication that can "take the edge off" of these medical, mental, emotional issues as they may start drifting too close the dysfuctional deep end of the pool.
I hope it all starts working out better soon. The sadness, suffering, minor setbacks in the interactions are difficult. I feel bad. It gets so crazy, and it's no fun feeling like I'm collecting the assorted rags and other costuming bits to put together a full Ogre costume one of these unsuspectedweekday evenings.
Charles
Written by
ctarleton
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Charles - I can't imagine how hard it is for you in this situation right now. Especially losing mobility and independence.
A few years ago, my friend was injured in the Toronto Van Attack. He couldn't move and his nurse just happened to be a high school classmate. He jokingly said "nothing more humbling than having an old friend wipe your butt".
Despite the challenges of the losses of mobility, your brain is still with it and you are still there. And truly, that is more important than body. Our bodies always fail us time and time again and sometimes we just have to let go of our pride and depend on others.
Praying for a safe and healthy journey for you. It is normal to get agitated, angry and emotional at this time.... heck I feel those things even without being in your situation! Lorazepam really helped my dad and he was on it for years (it was his favourite medicine... even more than the pain killers). I hope it helps you and that you find peace.
Damn buddy it just gets worse. Hardly seems fair that we only have the path you are on to leave.I wish there was anything I could do to mitigate your suffering.
I am so glad to note and read that you're "kicking" the tin as far down the road as you can, that's the spirit. Pain of any sort is never easy to handle at any age, this is what i always share with my close friends and family. Somehow, pain does not get easier to handle as we age nor our own experiences with pain increases. Many tend to forget.
However, we can stay positive and understand that pain is part and parcel of life, as told to me by a very close friend. I wish the very best for you and hope and pray that the pain eases with pain management. Take good care and again thanks for sharing, appreciate it.
My hugs and love to you, loved ones and all the good people rooting for you and not forgetting the hospice personnel whom I understand have tough issues to handle daily but do it anyway.
Haniff
❤️😷
This and other hospice descriptions are the real thing and helpful. God bless you on the final part of your journey Charles
Thank you for sharing your experience at a time where doing anything much is difficult and a trial. I'm sure that all those around you are willing to cut you some slack when your emotions are out of whack. I'm glad they got you started on Lorazepam. It can be a real blessing.
Having been a care giver during three different hospice journeys, I have seen how stressful it is is for everyone involved (thus the conflicts your mentioned). If you want, you can always insist on boundaries like, "I need the area I am in to be a place of peace and love. I welcome anyone who wants to reminisce, sing, laugh, etc. My plate is full so please respect me by keeping any friction a long ways away from me". In my experience there is always at least one family member is would be glad to step up and police this boundary for you.
Charles,I’m so sorry for your difficulties, and I am so thankful for your inspiration and guidance at our Prostate Cancer Support Groups. I wish I could offer you more. God Bless you my friend.
Just wanted to send you a big HUG, Charles!! Your words and experiences are heard and they are helpful - thank you for sharing them. May the Angels encircle you and your caregivers!
Charles,It is good to hear from you. With all you are going through I appreciate you taking the time to let us know how you are doing. It’s good to know you still have your wits about you and can show a sense of humor. The comment about the ogre costume made me smile.
Charles,You will remain in MY thoughts as long as my mind works. It's been a pretty good run for you all things considered. It won't be goodbye, it will be see you soon. Grateful for your friendship and guidance.
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