Navigating Advanced Illness: A Personal journey Through Hospice Care – Day 3
This is part of an ongoing series documenting my experience with home hospice. My aim is to share insights, offer support to others facing similar challenges, and provide a transparent look into the realities of end-of-life care. You can find the beginning of this series here.
Today’s update focuses on managing complex symptoms – swelling, pain, dehydration risk, and oxygen support – and the delicate balance required when living with advanced illness. Its a candid look at the frequently enough-invisible struggles that accompany declining health.
The Hidden Effort of Daily Living
it’s easy for others to underestimate the physical toll of even seemingly simple tasks. While I have assistance with showering and utilize a shower bench, these aids don’t eliminate the considerable effort required from me.
Just moving is painful. Imagine the amplified discomfort of navigating a shower, or even sitting up in a recliner when every position brings notable pain. This underlying struggle impacts everything.
Managing Swelling & The Risks of Water Pills
For nearly a year,I’ve relied on compression socks to combat severe swelling in my lower legs. Recently, the pain from this swelling became particularly acute.
My doctor has now prescribed diuretics – often called “water pills” like Lasix – to reduce fluid retention. While effective, these medications present a unique challenge. I was recently hospitalized for dehydration,so carefully balancing fluid intake and output is crucial.
It’s a constant tightrope walk, requiring vigilance and awareness of my body’s signals.
The Impact of Chronic Pain on Appetite & Hydration
A reality frequently enough lost on those who haven’t experienced it: unrelenting pain diminishes appetite and thirst. It’s a physiological response that requires conscious effort to overcome.
I routinely need to force myself to eat and drink. My nurse regularly checks my daily intake as a vital sign, alongside pulse and blood pressure, recognizing its importance to overall health.
Addressing Oxygen Saturation & Improving Sleep
I recently began using an oxygen concentrator.Initially, it wasn’t a confirmed oxygen deficiency, but a feeling of breathlessness that disrupted my sleep.
A recent finger-pulse oximetry reading revealed an oxygen saturation of 91% – just below the pleasant range. This confirmed occasional periods of oxygen deprivation, even without noticeable shortness of breath.
In hospice care,comfort is paramount. While my doctor previously wouldn’t prescribe oxygen without a clear need,the focus now is on maximizing quality of life.The concentrator has significantly improved my sleep, and a backup high-pressure oxygen tank is available in case of a power outage.
Understanding Oxygen Concentrators
* How they work: Oxygen concentrators draw air from the room, filter it, and concentrate the oxygen, delivering it via a nasal cannula.
* Power source: My unit uses standard wall power.
* Portability: Smaller, battery-powered portable units are available for those who are more mobile.
* My needs: As I remain at home and primarily use the concentrator at night, a portable unit isn’t necessary for me.
Hospice Notes: A Purposeful Exercise
I continue to document my experience not only to keep my mind engaged but also to offer support and details to others navigating similar circumstances.
Today marks day three, and thankfully, it’s been uneventful – a good sign when managing a complex health situation.
Disclaimer: I am sharing my personal experience with hospice care. This information is not intended to be a substitute for professional medical advice.Always consult with yoru healthcare provider for any questions you may have regarding your health or treatment.
Resources:
* National Hospice and Palliative Care Organization
* hospice Foundation of America