Hello,
Recently I had posted a lot of questions re: my mother becoming verbally abusive with me and I made the decision to move out but remain close by to continue to support her while protecting my own health.
Just as I am about to move, everything has changed drastically. Talk about how you make plans, and God laughs : (
On Monday I came home from work and found my mother in a disoriented state. She admitted she had fallen, and I took her immediately to the ER. She was admitted and as of today I have a clear update after the battery of tests.
Per the neurosurgeon, she has what they first suspected in the ER, a Meningioma, but they couldn't tell the extent until the MRI was run and analyzed.
Unfortunately it's a big, nasty, aggressive tumor covering the entire frontal lobe of her brain. There are only two options, and they are bad or worse.
Bad is surgery to remove the tumor, which they feel confident is possible due to the location, but due to her age of 82 it's still iffy. At best, she would have a chance at quality of life, but there are still the risks of infection, bleeding, and left-sided weakness.
Worse is doing nothing and the obvious progression to end of life discussions.
The medical team does not feel she has decision-making capabilities based on her presentation; she is confused and they don't feel she is fully aware of what is going on.
I am her HCP and POA.
From past conversations we have had, she has told me she NEVER wants to be in a nursing home. I am conflicted because I have a feeling this could be the case if we go the route of surgery, I want to do what's best for her and I am so torn.
If we do nothing, we may be looking at Hospice and keeping her comfortable at home, which is what I think she would want. The good news is that per the neurosurgeon she is stable as of today and not in any pain. She is also walking and eating well.
My siblings and I are having a Zoom meeting tomorrow to come together and talk about this.
Has anyone here had this, or something like this, happen, and what was the outcome?
Prayers being sent your way.
My beautiful mother was discharged from the hospital to skilled nursing two weeks ago and was adjusting well, but we (her family) could see the subtle worsening.
Today I witnessed right before my eyes, her having a full-blown seizure. For the rest of my life this image will be burned into my mind.
My family is making plans to come in but I am alone with her right now. The seizure has finally stopped and she is quiet and calm, but in my heart I know she is actively dying.
i don’t know how I have managed this but I stayed with her the entire time, stroking her hair and telling her I love her.
😞💔
What do the doctors say currently?
Is she on Hospice care at this time?
Stanford removed the egg sized tumor, and closed her up. At age 55, she had about a year of decent life, before hospice came in. She had a devoted husband there with her daily, who left his job to take care of her.
She died a peaceful death, no fear or pain. Just got sleepier. Then was bedbound for about 3 wks, and quietly passed in her sleep. Keeping in mind she was very fit and only 55, not 82.
Their age makes a huge difference in this tragedy. Hope this info helps your decision.
as it will be.
As for mom not wanting to go to a nursing home, no one would choose to go to one, but there they have team care and you are relieved of scrambling around to find qualified people to help mom. Like if she's a two-person assist and two aides can't show up because they have flu, you don't have to beg the 65-year-old neighbor (who has no training in transferring) to come help you with mom (and you have no training in transferring, either). You can see how that would be dangerous for all of you to attempt, and besides that, things happen fast. For instance, mom on the toilet and yelling and thrashing around and there's no time to think it through, so you do what you can and she ends up with a dislocated shoulder. (All of these instances are from my own personal knowledge or experience, and I am NOT a medical person but have been faced with LOTS of situations while caregiving family.)
As for her anger if she's in a nursing home, so what? She's not in charge now, sad to say. She may not realize where she is. She may think she's back in the hospital, which is okay. She may even think she's at home. Don't tell her anything. Just make arrangements and follow through. My dad was dying in a hospital bed on his sun porch because he insisted he wanted to die at home. Jumped through hoops to make that happen, but most of the time he thought he was in the hospital anyway.
I wish you luck in find the best care for mom.
Hospice will not be allowed to be used if MD will not order it. I am flummoxed that, with a meningioma he will not at this point. Seems almost negligent to this old retired RN, in all truth.
Sounds that you have asked and docs have refused?
If she goes into care you may change MDs to the facility and may have an MD who will order hospice (an MD signing that they expect death within six months time is government requirement).
You can also change MD to a Gerontologist or to palliative care which is much more likely to order Hospice.
You can call Hospice for interview, give them the facts in the case and then you can request THEY speak to her MD.
And all of this is dependent on whether or not your mother recognizes that this is end of life care, and accepts it, unless her dementia is diagnosed and you are her POA in charge.
As to her finances and assets, and what kind of care she will take, in home or in facility that depends on family, on who will manage care and scheduling of caregivers, and etc.
Do know that hospice gives you VERY little in terms of care. They give two bedbaths a week and medications and equipment essentially (hospital bed, commode, etc) and as Mom is climbing in and out of cars still it is sounding that isn't right now the requirement.
She's sure a complicated case, isn't she, Brainy. Sorry to hear this is so ongoing and progressing. Hope I managed to give you some clue and some answers and that others have more.
My mother had been doing surprisingly well for about 8 weeks post hospitalization, even no longer needing 24/7 care and getting by with her emergency pendant, Meals on Wheels, and brief daily check-ins from her kids.
A week ago, there was a frightening incident. She managed to get into her car (we had taken the keys away, but she had a spare we didn’t know about), and basically went “joyriding” around town, eventually ending up at her closed doctor’s office practice( this was Saturday around dusk).
My sister and her husband had her on Find my Friends, and drove out there to be greeted by her walking in circles in the parking lot. When my sister asked why she was there, and the doctor’s office was closed, she said, “So?”
I was on the phone with my sister, told her to stay with my mother, and called 911. At first my mother resisted, then relented to going to the ER.
After all the tests ruled out other things, COVID, flu, pneumonia, UTI, etc, they finally did another MRI. Although the tumor hasn’t grown significantly, the core of the lesion is now necrotic and edema spreading backwards, which is common in elderly people.
We had a palliative care consult with someone from neurosurgery and their treatment recommendation remains unchanged. But they don’t feel she is approaching end of life; “not there yet.”
She has been in the hospital for a week now. I see a drastic change in her behavior, worse than it was two months ago. She knows who we are, but now she’s making disjointed statements, not asking about leaving, and not even really on her cell phone reaching out to her family and friends.
She has had a 1:1 sitter all week because she gets up impulsively and remains a falls risk.
Tomorrow will begin the talk on discharge. They are discussing short term rehab again and putting in a new PT/OT consult, but if their recommendation is home with PT I have to plan for a safe home discharge.
She is in this really tough spot, because once again she is walking pretty steady, several feet with assist of 1 and her walker, so her insurance may deny again.
I already met with the owner of a reputable home care agency and they started the paperwork to prepare for 24/7 care at home.
One thing is for sure: she can NEVER be left alone again, no matter what.
The keys to her car are now fully confiscated.
If you’ve read through this to the end, I do have two questions: Even if the medical team doesn’t think she is approaching end of life yet, can I contact Hospice myself? Also, it sounds as if the home care agency can definitely provide 24/7 care, but is a facility more suitable? I know my mother has said “Never put me in a nursing home, I will find a way to crawl out of there” in the past, but I think we are beyond trying to bind by her wants, and have to consider what she needs.
I am so sad 😞
You say your mom has said in the past that she would not want to be in a Nursing Home. (I am going to assume that she meant Skilled Nursing facility.)
There is a possibility that either way she may be in Skilled Nursing.
If, as you say she has the surgery she may need help after. If this is not help that you can give at home or she can not have caregivers 24/7 the only viable option is Skilled Nursing, maybe Assisted Living.
If you elect NOT to have the surgery and she is on Hospice can you care for her at home as she declines or again caregivers 24/7. And if neither is possible we go the Skilled Nursing or Assisted Living route once again.
So.... neither option is without problems and the potential for a time in Skilled Nursing or Assisted Living.
I think I would include mom in the conversation with your siblings as you run through all the options. (That is if your mom is somewhat decisional as to her options)
Ultimately you are the one that has to make the final decision and I hope that you do take m oms wishes into account. You know what her past discussions with you have been.
Personally if this were me...I would opt for Hospice. (And I know my POA would follow my wishes in that decision)
Like I know my mom wants to live at any cost, no matter what, pain or anything she is going through. So do you have an inside gutt feelings of what your mom would want.
I make it pretty clear to my loved ones that id rather not be here if I had to choose a life of possibly being bed ridden.
I also want to add , has the doctors mentioned that being put under alone, even with hip surgery often gives patients a large set back in cognitive function, and this seems even more of a possibility.
So sorry for what is happening to you and your family. I'm very interested in what others will say.
Please keep us posted.
For myself, I have already at 82 made VERY CLEAR in my advanced directive that I would never have this (or any other) surgery that I had no capacity to myself fully understand and sign for. I have lived a good long life. If they are being honest with you, the outcome of the current surgery for such a big tumor is NOT GOOD percentage wise, and at this age ANY brain surgery would likely be too large an "insult" for the brain to recover any quality of life.
I am sorry that you mother did not leave clear instructions.
As POA then, this falls to you. I can tell you that your mother will end in care almost certainly, and never return to her former quality of life. The chance for that is miniscule and at 82 she is already aged enough that the coming life WILL include care (for MYSELF if I live, as WELL AS for her).
I would not under any circumstances sign for this surgery.
I would request hospice care and do it at home if you are able, and in facility if you are not.
I would make this decision regardless of the others in the family given that this is the position your mother assigned to YOU, not to them.
So I have told you what I would do.
You will make your own decision now with the advice of doctors, of family, or on your own, and you will make the decision you feel is best and is right for your mom. Once you make your decision there is no guarantee as to it being the right or wrong decision. You aren't God; you can't know these things. You can only do WITH ALL STRENGTH AND CERTAINTY what you believe to be the right thing.
My heart goes out to you. I am so very sorry.
If this were my dx at 67, I'd choose hospice care. My cousin had a cancerous meningioma surgically removed at 40 yrs old and said he'd never, ever go thru such a thing again. Consult with moms surgeon about all the risks and whether it's worth taking them, at 82.
Again, I'm sorry for this situation you're both in.