My 89 year old mom has gone from living independently with caregiver help a few hours a week, to severely disabled and ill within one month. She's lived in rural northern CA for years, insisting it was fine despite lack of good medical care and services there. Now she's in the hospital there - and my husband and I are with her for now - but we live in the Portland OR area.
She has used a walker for years due to a balance disorder and diabetic neuropathy in her feet.
She now also has arm/hand paralysis due to severe cervical spinal stenosis; a problem with her aortic valve; and inability to move her bowels on her own without painful enemas.
She wants to move into skilled nursing care in Portland near us, with the option for rehab, and investigate possible surgeries for her valve and spine. She is often alert and insistent on this when her hospital doctor sees her which is usually afternoon, often her "best" time.
At night and all morning she's in level 10 pain, cries and screams that she wants to die. She can't feed herself or even drink because of the spinal paralysis.
I'm an only child. I'm finding the roller coaster of her illness and future planning to be extremely stressful. (My husband is very supportive so he does help me.)
I want to give her dignity of her own choices, and advocate for what's best for her - but how do I do it when she has 3 different care goals in the space of one day?
Hospital doctor says she's "not actively dying". How is a paralyzed person who can't feed themselves or have a bowel movement, but who's ineligible for surgery for the paralysis-causing issue, NOT be actively dying? How long can her level of pain go on?
We have actually gotten an SNF placement for her in the Portland area - but they are unaware of her bowel issues and "I want to die" stuff. The hospital social worker has also not seen that behavior so she didn't present my mom's case that way. I know my mom will arrive at her nursing home screaming and crying after a 12 hour drive in a medical transportation van. The nursing home is going to feel mis-led, my mom will probably end up in the psychiatric wing, and I'm having anxiety issues about all of it.
How do I handle all this without losing my mind? Thank you!
I also agree that hospice is a good option for your mom. She does not need to be actively dying. Mine is dying in tiny bits and pieces but hospice accepted her. Hospice will manage her pain.. No attention is given to a patient's pain otherwise. My mother hasn't availed herself of any of these meds yet but they are sitting in the refrigerator here and available. We just needs to notify the hospice service. That is comforting.
Because of the benefits in pain management under hospice, you should call in hospice for a consult on your own. Find out from someone at hospice what they can do for mom. They will provide equipment she needs. Hospice will also offer support for you.
My mom was in and out of hospice care for 2.5 years. She’d rally, they’d release her, she’d decline, then be back in the program. She lived to 95. I have nothing bad to say about hospice for either dad or mom or any friend who has been on hospice. It was all good.
If you are planning to move her closer to you--then the facility that has accepted her MUST know about all health issues she has--in fairness to them and to her.
She may need a much higher level of care than they can provide--and then you'd be at step one all over again.
My MIL was placed in Hospice Care (we call it Palliative, as she gets SO upset when she hears the term 'Hospice'.) about 6 months ago. It's crazy--she's gotten worse, for sure, but isn't deemed 'imminently dying'....so her care is all over the place from week to week. Mostly it's exhausting!
MAINLY--they use the services for pain management and emotional support (re: she's on antianxiety meds all day/night) but only Tramadol for pain, which is pretty 'weak sauce' so her pain is not bad.
If you have POA, enact that and USE it for mom's care, since it sounds as if she simply doesn't KNOW what she wants.
A 12 hr medical transport sounds absolutely awful--but hopefully they can keep her out of pain, for the most part.
A geri-psych consult before the move would help the new facility to have a better idea of what they're facing. You (and they) don't want surprises on the day of admit.
I BET you have anxiety. I don't even DO any hands on care for my MIL and I STILL suffer from anxiety a lot. Because she DOES take my DH from home a LOT and I am angry about that.
Palliative care vs Hospice Care--IMHO, it's really about the verbiage. MIL swings from "hospice care' to "palliative care' on a weekly basis. The care is the SAME.
Best wishes--this is hard, to watch our LO's suffer.
I'm not sure if she's cleared to travel yet. The doctors don't seem to think she absolutely can't. Her getting to Portland seems to be a motivation for her to rally a little, so that may be influencing her care team as well as her. Also I think her team sees she is very anxious to be near where we live. (For the first time ever - of course, after she's too ill to travel in my opinion.)
Pain management- her pain is currently mostly from her bowels. Many pain meds are constipating so they're trying to balance that. They don't want to pump her full of IV hydration for her bowels because apparently that's hard on the heart and her aortic valve issue. Again they're trying to balance it.
I do have POA. Palliative care is an option but my mom goes back and forth on what care she wants. Her mind is mostly OK when she's not at Level 10 or heavily medicated. I'm trying to give her the only control she has. I agree totally she should talk to someone (counselor or chaplain). She's currently so pain ridden and exhausted that it's hard for her to follow a conversation- except for 2 hours in the afternoon when she has her best time. Though I said her mind is still OK, it's dicey. Sometimes she's pretty confused right now.
Hospital says no Hospice as she "isn't actively dying". Also on this forum I've read some pretty awful things about Hospice? Maybe palliative care is even better.
Yes, she needs better palliative care than what she's getting. Has she had all non-surgical solutions tried? Like an epidural? Steroid injections? If not, why not?
Yes, contact the facility to let them know ALL her issues so they are prepared to deal with it. If she's going into LTC it's nothing they haven't seen or handled before. It is incomprehensible that she is screaming in pain when there are drug solutions, even morphine, to deal with this.
Maybe even consider meds for her depression/anxiety.
Is she a person of faith? Even if not, perhaps she would benefit from talking to a chaplain or similar person about her mortality. This is her responsibility... to come to grips with the issues of suffering and end-of-life as it applies to herself. You aren't responsible for her happiness, however (and as an only child myself) it is very difficult to stand by and watch her physical and mental trainwreck.
My Mom is 94 and has osteoarthritis. These past 2 years her back has gotten really bad. She was having me run around to all types of doctors until she eventually came to the acceptance that there was no therapy to fix this problem, only pain management. I wish you success in helping your Mom be as pain-free as possible.
Pain and our ability to deal with it has a HUGE psychological component. Perhaps if her anxiety/Depression/agitation were treated, the way forward might be clearer.
Too bad Mom doesn't seem to be ok with hospice .
Do you have POA?
Why can’t they manage her pain? Is traveling feasible for her.
Others will have suggestions and comments. Please stick around for responses to your post.