Where is the line?
My mom is 93, post stroke, vascular dementia, CHF, repaired broken hip. Wheelchair bound, pacemaker. Family hx of melanoma and has had melanoma herself, 20 years ago; also breast cancer survivor.
Mom has been in a NH since 2013, after hip repair. Has survived a couple of bouts of pneumonia, fluid in lungs, pacemaker done in 2014 because heart rate dropped.
Mom has been facility bound since her last hospitalization in 2014. Last Fall, she saw a spot on her nose; dermatologist came into the facility to look. It looked like a melanoma to us all. Had mom transported to his office for an excision all biopsy. It was a basal cell; cells at the margin were cleared up with a chemotherapy cream. We all breathed a sigh of release.
This spring, mom decided that she had something " like leprosy" and was afraid she was going to pass it on to niece's unborn baby. Dermatologist came in to look pro forma, saw something suspicious on mom's forehead. So today, big production, mom in ambulette, the facility didn't want to send an aide, but I insisted, because mom needed to be flat on the exam table for this procedure. I'm 63, i can't lift like I used to. Took the aide and 2 receptionists to get mom on the table.
Biopsy done ( 3 stitches). Of course there's also something suspicious on the other side of her face..not enough time to do that today...
To boot, the pacemaker folks want mom transported to the clinic to have her pacemaker checked-- they won't do it in-house because mom is not "facility bound".
Where do I draw the line at dragging my mom, with compression fractures in her spine, in an ambulette over bumpy roads? When is less care actually better for her?
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I know it's not that easy, we're all programmed to go to the ends of the earth to get our parents the latest medical care.
But there's a old saying: THIS MAY NOT BE THE END OF THE EARTH BUT YOU CAN SEE IT FROM HERE.
You may be in that zip code about now........
In my own experience with my FIL, his Dr has been slowly eliminating his "not so nessesary" medications, like BP, diabetes meds for his mild diabetes, well controlled by diet (well supposedly) and his Cholesterol drug. He continued him on a baby aspirin and his Atenelol, for control of his heart rate. That's it, plus his centrum silver vitamin. It seems a logical approach for an 86 year old man, who does not want to live forever.
Its difficult, but it's all about realistic expectations, and the patients personal Dr and the medical POA(s), need to come to that understanding. At some point it becomes about comfort care. I would recommend bringing in Hospice at the first available opportunity, but that's up to her Dr, but sometimes you have to persue it and request it.
So I sent the NH DON and SW an email today, asking for Mom's doctor to contact me regarding how aggressive we should be about superficial skin cancers, if taking her out of the facility was advisable, if topical treatment was a possibility.
I also emailed by brothers a question: if mom is competent, do we sit down and explain to her what her general physical condition is, that she is hospice eligible (if she still is, that's one of the doc questions) and how aggressive does SHE want to be given her comorbidities. Otherwise, mom is not reasoning from the facts that WE have. And if she can't comprehend the facts, then she can't be in charge of her own medical decisions.
I think that there is a new line here that I've just discovered. Are we going to cross it now? Maybe, maybe not. But you've all helped clarify my thinking tremendously. And for that I am ever grateful! (((((((hugs))))))) Barbara
I remember back when my Mom had a serious head injury from a fall [refused to use a walker], and the doctors discovered a blood clot in her leg. It was up to me to decide whether to have a wire filter placed into her vein to keep the clot from traveling to the heart or brain. I decided yes, but I kept second guessing myself over and over. Would I do it all over again? Probably not as Mom only lived 3 months more.... late stage dementia took her.
Too bad we don't have a crystal ball to see the future.
It's hard to make those kinds of calls because the medical professionals are there to treat people and make you feel like an uncaring child if you refuse their recommended treatment. I just had that with my mom's cardiologist. He wanted to make a change while my mom has been very stable for 3 years. So I went along with his wishes, against my better judgment. So I know how you feel. It's tough!
They have no idea who they're dealing with.
When she needed emergency surgery from a kidney blockage and had sepsis then I made the decision even though she heard the anesthesiologist say her heart couldn't take the surgery - better to die on the table than from sepsis - that was 4 years ago -
Unless it is something very aggressive then I suspect I won't be taking her to the dermatologist anymore to have things burned off - who would help her take care of the wound in memory care when they don't even put a diaper on her sometimes ?
I will fight for her as long as she has fight left in her
Okay, deep breath, Barbara. I don't feel like such a rotten daughter. Thanks for listening!
I suspect that most of us who have siblings recognize that they see things in a different light, especially if they're not the primary caregivers. Neighbors can be the same way. They have no concept how emotionally and physically challenging are these caregiving roles. So they opine, freely, voluntarily, often w/o understanding, and sometimes out of just stupidity.
There's also a kind of tunnel vision in intense levels of caregiving; it's hard to "see the forest for the trees." When the crisis is over, it's easy to step back and reassess the situation.
I don't at all see that you're a "rotten daughter", having read your posts for a few years now, and seeing how you rationally and analytically approach situations.
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