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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, 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 She was also furious with me when she saw money withdrawn from her account to pay for these services, thought someone else was paying for it.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.
You say WE aren't done here. But I sure would be. In the case of non-cooperation I am out of it. And your mother is being unreasonable and enabled in being so.
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.
Does her PCP have someone else in the office who can see her sooner? I'd call back and see if there is someone else in the office she can be seen by if you think it necessary.
We simply self referred to hospice, they pulled Mom's records, the RN looked at Mom, and she qualified. There is not a huge barrier for hospice entry.
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.
What do you expect from the doctor appointments? I’m unclear as you already know the diagnosis and certainly know mom isn’t cooperating and irrational. I wouldn’t think anything would be different. You’re in the time that being HCP and POA is really horrid, acting in the best interests of someone who’s lost the ability to see that’s exactly what you’re doing, and so lashing out. You either brace yourself to ignore the rants, band together with everyone getting the calls and texts to not respond (blocking her if needed) and continue to do the great job you’re doing despite her ire, OR you back away, let her have her way, cancel all the help, and leave her alone to fail. Either way, you do not begin jumping at her every command. Either way, continually remind yourself of her medical condition and the irrational nature of her behavior. This is all so very hard, no one could blame you for whatever choice you make. I wish you peace in the storm
If anything, the primary provider appointment is crucial because they can assess her mental status, suggest starting on an antidepressant, and maybe refer her to a geriatrician. She seems to lean towards listening to her physicians.
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 just want to add, I realize Mom may be in the denial stage of this diagnosis and I do believe she is struggling tremendously with fear. Her life as she once knew it has been completely upended.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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.
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.
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.