Special Care & Aging

Sue thank you so much for your words of wisdom it really helps a lot. I may just take you up on your offer to talk soon.

Aimee,
Wow, you have already done great work. You built enough trust that he agreed to return. This is an incredibly complicated situation, so I would break it into small steps. By the end of this post I think you will know why his brain is flight out of the survival responses of fight, flight, or freeze.
Stabilize his body first.
Ask for a formal addiction medicine consult along with palliative care or a cancer-pain specialist. Fentanyl withdrawal, opioid tolerance, cancer pain, fear, and other medical factors are all overlapping. He needs specialists who can treat the addiction, cancer, and cancer pain all together, not as separate problems.
Give back as much control as possible.
In my nursing experience, anger was often the visible layer covering fear and loss of control. Offer small, genuine choices whenever possible. Even small choices can help someone feel like a person again.
“Would you rather talk now or after you rest?”
“Would you like me to stay while the doctor explains this?”
“Would you like to focus on today’s plan or tomorrow’s plan?”
Speak to the here and now.
When someone is in severe pain, withdrawal, fear, or survival mode, warnings about what might happen months from now mean very little. His brain may only be thinking, “How do I get through this moment?”
Try:
“Let’s concentrate on getting you through today.”
“What is making this feel unbearable right now?”
“What would make the next two hours more manageable?”
Do not turn leaving into a power struggle. It is his right to choose.
If he wakes up wanting to leave and has the ability to make that decision, be honest without judging or shaming him:
“I really want you to stay because I am concerned about you. I also hear that you want to leave. Before you go, can we make a plan so you do not have to start from the beginning when you are ready to come back?”
Give choices:
“Would you like me to schedule the next appointment, or would you rather we have someone call you?”
“If you leave today, may I call you tomorrow?”
Most importantly, let him know the door remains open.
Build one coordinated plan.
If possible, have an oncology navigator, addiction specialist, pain specialist, cancer specialist, case manager, social worker, and recovery specialist, and yourself as the person to coordinate the pieces.
He may feel as though he has failed at life, failed because of the addiction, and now his body has failed him too. Addiction is a medical condition, not a moral failure. His response to this overwhelming cancer situation may be dangerous, but it is also understandable.
The immediate goal may not be getting him to commit to months of treatment. It may be helping him feel safe and in control enough to take the next step.
When I was an oncology nurse, I cared for patients in similar situations. It can be a long roller-coaster process with plenty of ups, downs, side-to-sides, and even a few pirouettes. This is a tough situation for your patient and for you.
Please reach out if you want to talk through any part of it. I am happy to help.
Sue

Sure, that sounds like a great topic! Particularly if the content can be generalized for nationwide, not just in NC.

I'd love to attend

looks good.

Hi Mari, To the best of my knowledge, a person in any state with assets exceeding the Medi-Cal threshold will not qualify for any type of public healthcare assistance. The LGBTQ community is well organized in the Bay Area, and may provide financial assistance on a private basis. I would check with their local organizations; keep in mind that any grants might also be dependent upon financial need. — Every LTC policy has an elimination period, and requires proof of payment by the insured as part of the policy’s authorization process. A limit of $650/day sounds as though the LTC policy doesn’t carry an annual inflation endorsement; this should be confirmed by reading the entire policy (and not the policy Summary of Benefits.) I would also verify the policy allows assets other than the insured’s to cover the elimination period. The elimination period of 90 days, at $650/day, equals $58,500, which can be covered by your client’s assets if he is required to pay. LTC policies all contain language regarding caregiving coverage by formal and informal caregivers. Understanding policy guidelines in this regard is crucial. — I didn’t see any mention of the cause of your client’s medical decline. If another party was involved (i.e. an accident, premature discharge, improper diagnosis) the opportunity may exist to explore the LTC policy elimination period coverage by the other responsible party. Good luck.

In my years of hospice care, I can tell you that this is an important conversation to have with your parents before a crisis occurs.

Be proactive AND insistent in getting a plan in place. Call a family meeting or have an elder law attorney help.

This is SUCH an important conversation. Thank you so much for bringing it here.

David, this is exactly the systemic issue Cheryl is pointing to — and there's an underutilized resource worth knowing about.

The Older Americans Act established the National Long-Term Care Ombudsman Program, staffed by both paid and volunteer advocates. Critically, they work for residents, not facilities. They can address individual resident concerns and pursue systemic facility issues. Complaints feed into state and national trend databases that can drive regulatory action.

As a former Texas ombudsman, I can tell you SNFs were prioritized in caseloads over assisted living, even though both are covered under the OAA. The program is lean, but strategic.

As a first step I recommend looking for the ombudsman contact information typically posted at the facility entrance. Introducing yourself creates a ready partnership for exactly the issues you're describing.

Understaffing explains resource constraints. It doesn't excuse poor care.

Renea Stasaski, BCPA
Sonoran Wayfinders
Advocate's AI Atlas

Thank you for asking such an important, complex question!

Oh gosh, this is such a major problem! And if I knew how to fix it, I would be a wealthy woman! I experience this both as a clinician and as an advocate. A few strategies that are absolutely not fixes:

1. bundle needs as much as possible so there are fewer calls on the call light. I know it's not always possible! If possible, build ADL routines so they're more anticipated/scheduled and more efficient.

2. let the staff know they're appreciated, with words and maybe snacks. Let managers know who is excellent.

3. escalate as needed if/when there are safety concerns

4. aim for non-profit care centers whenever possible

Well, that's a few thoughts to start the conversation.

Cheryl Kauffman, PT, BCPA
Seattle Patient Advocates

Thank you all for responding!

I do a 90 minute virtual review with clients or entire families for 400.00 that includes referrals and assessment of acute needs. If they want me to review documents and develop a medical profile and care plan with resources it is 1500. If they need in person advocacy services and the above, I charge 2500 for initial ten hrs of work then 250/hr for additional hrs. Most of my clients choose the third option as I tend to get very medically complex cases.

I do this as a part of my services and I am happy to take on custom requests.

Thanks for starting the thread, Andrew! We're very glad you're here.

Are there approaches you have taken to help your senior clients be able to interact with their smart devices at all? for example, to confirm appointments via text? What resources do your clients mostly find manageable — if there are any patterns you see? (would love you to edit the post and expand the thought a bit more, if you're game, in hopes of having others join in or learn from your experience!)

Thanks so much for sharing!

This is SUCH a powerful topic. Thank you for bringing it forward here and for sharing your podcast. I look forward to listening to it in the near future.

I can attest that when my husband was in the sub-acute rehab for 60 days, not a single staff member ever said, «Here's your toothbrush and spit cup.» If I wasn't there that day, the teeth didn't get brushed.

That was last year, and he just went through an extraction. UGH!

Shelbey, I've sent several people to your GNA profile recently. Hopefully they turn into business for you.

great article, Shelbey