Good morning,
I’m not updating my last post, so I will provide a re-cap:
My 82 year old mother has a very large, aggressive appearing meningioma (neurosurgeon confident that’s what it is, but of course he can’t say with 100% certainty) covering the entire frontal lobe of her brain.
She was in the hospital for 2 weeks while decisions were being made whether or not to do surgery, which is now permanently off the table, and with that being off the table, her going to rehab.
Her Humana denied the medical necessity because she is walking over 250 feet, can dress herself, and toilet herself.
Hospice also isn’t indicated at this immediate time.
I got a case worker from a non-profit agency to come up to the hospital to discuss where to go from here, and she got a private owned agency on board, to provide 24/7 companion level care for her safety. Homecare just started too, for the skilled Homecare needs that is covered by her insurance (nursing and PT).
Since Mom got home earlier this week, it’s been a nightmare. She is calling, calling, and texting, texting nonstop for her family to do this and that, even though the staff is fully qualified to do these tasks.
She was also furious with me when she saw money withdrawn from her account to pay for these services, thought someone else was paying for it. (I am her HCP and full POA, and her living will/HCP has specific wording in it that says she wishes to remain home if reasonably possible, and for her HCP to do whatever is necessary to secure help in order to do so, including 24/7 care).
She is now adamant about ending these services TOMORROW, she is fully independent and wants her privacy back.
Yet this morning I got a call from her morning aide that she was confused and did notice her balance is off at times; she watches to make sure she’s safe going up and down the stairs.
To add to the frustration is Mom was supposed to have a F/U with her PCP yesterday, and they canceled it because the provider was ill, and the soonest next appointment is 11/27.
There is also supposed to be a F/U with the neurosurgeon, but when I called them a second time yesterday (they never responded when I called Tuesday to set up the appointment), they indicated now they don’t feel it’s “necessary.” What?
As a daughter and not a nurse, I feel very torn about this. On the surface it would appear that my mom has complete lucidity and independence, and of course she can refuse the help, but if I do what she says she wants I am very afraid that she will get seriously hurt-she already has, with the bad fall that led to her being hospitalized.
If the neurosurgeon doesn’t see the need to follow up, I was also hoping a neurologist can arrange for a repeat MRI in about 1 or 2 months, which is the only way I can know if the tumor has grown significantly since her last MRI.This might give us a better grasp of a tentative prognosis and referral to Hospice.
I will say if she is still walking a lot that she probably won't qualify. Hospice will not require an MRI for entry but a woman who is still mobile, still able to call and text, and still able to login to her financials may not qualify.
If the neurosurgeon says the appointment is not warranted, I'd just let things go. In my state we could self refer to Hospice. We called them. Hospice pulled all medical records. The RN came out to the house in 2-3 days and made a determination. You could always call hospice in 2-3 months and see what they say.
In regards to Mom's care now you have two choices:
1. Stop responding to Mom's calls and texts. Let the caregivers keep showing up.
2. Let Mom fire the caregivers and let Mom function on her own until the next catastrophe.
Truth is, of cours, that yes, with full independence and lucidity, this is up to mom.
Let her handle it all.
You will "get the call". She will be down on the ground. You will call the ambulance. And she will be in the arms of medical care again.
I would consider asking her if she would like to install alarm system with camera; I would tell her your phone will be OFF for emergency calls and she is to call 911, should consider keeping her phone on her at all time.
The truth is, and this is the fourth time I have written this today, your mom has had her life. She is still adjudged capable of her own decisions and they are BAD decisions. Stop enabling them.
Let your mom know you will WASH YOUR HANDS OF THIS now. She will not accept help. She is on her own. You will not enable her bad decisions. She can call 911 and you will check in with her BRIEFLY a.m. and p.m. That you suggest cameras so you can check for falls. That she has had her life. That if she choose to die ALONE at her home in this manner, you are very sad about that, but it may be as good as a nursing home or living with strangers all the time.
Sorry. It may be. I am 82 and the closer I come, the more I hope it is feet first out the door here, whether that means I get to lay on the floor reaching for a non existant phone of not. We all die. Dying at home in control is for some, preferable.
And, as I said, and as you know, you will "get the call". Either from her, from EMS or from the coroner.
Sorry. There's no fix it anymore in these continuous situations. Or I am having a bad day.
So sorry your going thru this but I don't see needing another MRI. The tumor is going to probably continue to grow. I would just enjoy what time you have together.