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Good article on end of life issues with dementia
I have failed at creating a "live link" but this is a good article and worth reading. Key sentence:
"Because dementia is underrecognized as a terminal condition, our current models for end‐of‐life care are not tailored to meet the needs of people with dementia and their caregivers.'
Awesome article, Cat. As we are nearing end-of-life, ever so sloooooowwwly, I'm having to figure out what resources are available for Mom and for us to get through to the end. I especially liked this statement...
"...we need to do much more. We need to teach clinicians how to comfortably
walk beside people with dementia and their family members through a long
and uncertain prognosis toward a certain death. We need to empower all
providers to take responsibility for starting and continuing difficult
conversations with their patients with dementia about death and dying
and provide them with sufficiently long office visits to accommodate
these conversations. Ultimately, we need to continue to create and build
adequate supports for patients and families and provide them with
high‐quality evidence‐based geriatric palliative care for dementia."
Adequate support would be nice. Hell, at this point I'll take inadequate over nothing!
Thanks for sharing.
Oh, and a p.s. you have to paste a link into an email, make it live there, THEN copy and paste it into a post here to be live on the forums.
Michael E. recently taught me that! I was confused about it too.
A well researched, well written article. Thanks for posting it.
"The culture of medicine is rooted in the desire to heal and cure, and struggles with the inevitability of degeneration and death." "Yet hopes for future treatments should not impede more immediate and critical conversations...about death and dying."
This is the central theme of a book I recently read titled "Being Mortal." The medical profession certainly needs to adopt a different approach to discussions about the terminality of diagnosed illnesses and end-of-life care, rather than just referring patients to hospice.
Like it or not, we all will face the final chapter of this journey, and although we can never truly prepare ourselves spiritually or emotionally, we can give thought to how we want to spend those last days with our loved ones. I recently visited the dying SO of a close friend in her hospice suite. Before entering, I was instructed to be silent (respect for the dying?), and inside witnessed a somber scene; an unresponsive "guest of honor," surrounded by quietly sobbing, red eyed family members. I prayed silently at the foot of her bed, touched her, and made my exit, glad to escape the gloom.
When it is my DW on that bed, I want her favorite music playing, and I will encourage conversation from visitors whether there is any indication she can hear us or not. When my father passed, after saying our personal goodbyes, we joined hands around his bed and sang his favorite hymns as he took his last breath.
So if you haven't already, spend some time discussing this with family and, if possible, your LO. It is a special time, one in which the dying can share special parting gifts if you are receptive...and it need not be a somber one.