Ahhh, what a nice break from blogging.
So you may be asking yourself, “I wonder what happened that inspired geena to write an entry after all this time?” Well, I am more than happy to spell it out for you.
We recently admitted a patient that has been comatose for almost 10 years. The woman had a stroke and never woke up. Her daughter has been taking care of her for all this time. The patient has a tracheostomy stoma and feeding tube through her stomach. She is completely and totally unresponsive. She does not interact with her environment in any way. Her eyes are always closed.
I simply cannot imagine taking care of someone like that in my home for 10 years. I’m actually not sure if the daughter has any help (like home-health nurses or nurse aides, other family members, etc). Taking care of someone like that is hugely time-consuming. The patient needs to have bolus feedings every few hours, needs to be suctioned, have meds administered through her PEG tube, her basic needs taken care of, her limbs exercised to prevent contractions, and most importantly, she needs to be turned every 2-3 hours to prevent bedsores. Bedsores develop very easily in bedridden patients.
Not only is this patient not contracted (which means she gets regular passive limb exercises), but her skin is pristine. The patient’s daughter is doing a most incredible job caring for her mother. I don’t know what kind of family the daughter has (husband? kids?) because she’s the only one I’ve seen at her mother’s bedside.
Which brings me to my next point: although her mother is completely being cared for by us now (due to no fault of the daughter’s care, but I cannot go into details), the daughter is almost constantly at her bedside, at least during the day. I realize that after 10 years, routine is routine, but wow. She’s free now! She can go do whatever she wants, without having to worry about her mom’s care right now… but she chooses to stay at her bedside all day long.
On one hand, it’s an extremely noble thing the daughter is doing… basically selflessly giving her life up to care for her mom, and doing an excellent job. On the other hand, she’s giving her life up to care for her mom, who doesn’t interact with her in any way. I don’t know whether to feel really sad for her or be awed by her, so I just do both.
I am Gina. I have been an Intensive Care nurse for 14 years. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!
Comments
Geena, I suspect the reason the daughter is always there is because she doesn’t know what else to do. This is her life.
added by GruntDoc on 05.05.04 3:54 am | Permalink
Yeah, I know. As I said above, “routine is routine” after 10 years.
added by geena on 05.05.04 8:05 am | Permalink
When the mother dies, the daughter will probably have a very dfficult time adjusting. She will have to build an entirely new life. Very sad situation.
added by suzi on 05.07.04 8:14 pm | Permalink
Oh dear. Better refer her to a mental health professional — she’s going to need counseling or antidepressants or both. (psych nurse here)
added by Jodie on 05.15.04 9:22 pm | Permalink
I’m interested in talking with you (Geena) about your site — I’m writing an article about medical blogs for the website Medscape. Can you contact me if you’re willing to chat?
added by Christine Wiebe on 05.17.04 10:12 am | Permalink
Geena, a friend of mine could have very easily been that caregiver. She had taken care of her mother for 15 years. She had no life outside of being a caregiver and going to church. When her mother died unexpectedly she was devastated. Months later, she is still floundering – wondering what to do with herself and fending off the criticism of other family members (who did nothing to help care for the mother.) Never once was she referred to a counselor…she should have been. I hope the caregiver you mention here had someone come in to speak with her about her role after her mother dies. She needs to be prepared.
added by Da Goddess on 06.20.04 6:39 pm | Permalink
Geena,
The daughter of whom you speak and I could well be sisters. For almost 25 years I took care of all of the ADLs 24/7 for one of my children who was born blind, hypotonic, and medically fragile. My son died in March of this year. Do I regret devoting my life to caring for him? No. Did I waste my life in devotion to him? No. Am I experiencing a dysequilibrium of purpose and lifestyle since his death? Yes. Am I going to enjoy the years to come as I have appreciated the years behind? Yes.
Love is never wasted. And a life spent in this manner is blessed.
Thanks for the opportunity to tell my story.
added by Joy on 11.22.05 10:41 pm | Permalink
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