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........
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!
Yes, she has a dnr and dni. And for YEARS she would point out people and say DO NOT let me liive like that". But she did not make me poa. We three have equal health poa. I try to go along and get along.
I'm not trying to get her the latest health care. Skin cancer is very scary to her ( and to my sil, whose mom died of melanoma). Just trying to make sure i can reasonably say "no" to further trips of this sort without being neglectful.
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.
My father has one, a newly sophisticated one, which transmits over phone lines, I believe to the cardiologist. Once a year he goes in for a confirmatory check in person.
The earlier one just had to be connected to a phone line, activated, and away it went, transmitting data which was then reviewed by the cardiologist. The newer one is based on some newer technology; I haven't seen it yet and don't know exactly how it works, but it's done from the comfort of home.
They have no idea who they're dealing with.
Three POAs. I don't know how you would ever come to a decision. So many POAs would be about the same as not having one at all. You would end up going with the one who had the kindest decision, since forcing a tougher decision would make someone feel like a monster.
I know a lot how you're feeling. My mother is not in poor shape, but she goes to the doctor for even small problems. Today the doctor froze two precancerous spots on her face and said to have yearly checks. His assistant asked me if I wanted to make an appointment for next year. Hello! I don't know if either she or I will be alive by then. I wish we could actually say "No more" and have it mean something, but unless the patient and the family are on board, what do you do.
Palliative care doesn't mean anything, really, until the person is really ready to let nature take its course. That is hard to do. And we can't really encourage them in that direction, since the decision is such a serious one.
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.
As I thought over your post, I recalled my sister's last battles with cancer. She was a fighter and just wouldn't give up. Even as the dire prognosis was plainly presented to her, she still wanted to fight and battle with another round of chemo. By then she couldn't walk, could barely speak, couldn't eat, couldn't fight pneumonia because the cancer had metastasized to her lungs (as well as her spine), and it was agony to see her suffering.
Your mother is so lucky to have the forsightful daughter that you are.
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!
Sil takes mom seriously when mom says "leprosy". But by going along with this, i think my brother (the golden child) sees that we have to reassure mom rather than schlepping her to doctors.
She's dying ( aka Hospice eligible). She will not survive they next bout of pneumonia or pleural effusion. The rest of the crowd say they understand and accept that, but.....
As long as your bro sees that you have to reassure her rather than take her to appointments - and - sil does not interfere with this, sounds like it will work. If sil insists on giving your mother the wrong type of attention over her skin concerns, it will be more difficult. Wishing you the best in this. Thankfully my mother is past being able to relay her concerns to my sister, so our situation is less complicated. The last time sis took a stand on behalf of mother, it wreaked havoc. I just had to live through it and do what I thought was best. Mazel tov
The health "cost benefit anyalysis"--ambulette ride, getting her up and down off an examination table, possibility of infection--outweigh ANY upside to discovering skin cancer at this point. Skin cancer is NOT what is going to kill her. But I needed to hear that from her doctor.
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.
This smells, but not too bad. It is a clear yellow/amber ointment, very thick,,thicker than vicks,vaporub.
Anhydrous means without moisture/water. Not a lotion.
It is pure sheeps fat.
Try it,,or ask the dermatologist.
I thought that I was doing right by my Mom and since my siblings were not involved in my Mother's care I was doing what I thought was best. It would have been nice for her doctor to phone me back and explain what he thought was best instead of ignoring my calls. Would I have listened, I don't know, but I think it would have been nice.
When it came time for comfort care to start I had it shoved down my throat by an on -call doctor at the hospital. Maybe if someone had talked to me as an adult before it got to this point I wouldn't have felt so blindsided. At the end of the day everything I did I did out of love for my Mom.
Sometimes, with more information, the line can be redrawn, become wavy, even blurry. You are wise to be considering future options for the best care for your mother. It is not time for you to be doubting yourself, or that you a good daughter. You have demonstrated over a long period of time that you are good.
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