Cat, my wife, Lynn, doesn't have any pain. Some of her memory issues are a bit better since she started taking Pristia and Escitalopram for her severe depression.

I've (Joe) had back pain most of my life. On May 4th 2022, I had a Metronic stimulator implanted and my lower back pain has decreased from 8-9 down to 4-5. Biospine in Tampa, FL did the surgery.

It’s hard enough to manage behavioral issues. I can only imagine how difficult pain management would be with an Alzheimer’s patient.
It sounds like your questions and advocacy have really made the difference in finding a solution.
A very good example of how caregiving doesn’t end when your loved one leaves your direct care.
Hats off … 🤗

My husband has suffered a lot of physical pain and had numerous surgeries over his lifetime. All the anesthesia likely contributed to his developing dementia, which made his pain management all the more challenging. It’s been a balancing act, for many years.

The majority of his pain is in his lower back, caused by severe stenosis that could only be partially alleviated via lumbar fusion. In 2018, he had a pain pump implanted, which distributes continuous medication directly to his spine. The advantage is that less medication crosses the brain barrier than with oral pain meds.

The “go to” medication, that is usually put in the pump, is morphine. But, on morphine, my husband’s dementia became over the top almost overnight, to the point I hired 24 caret to keep him safe.

The next pump medication he had was Dilaudid. Same extreme effect of exasperating his dementia. The doc finally went with fentanyl, which, due to its passing through the system quickly, affected his brain much less. Meant I was able to keep him at home with me another four years, with only part time caregiver help. But it never really relieved his pain as well as morphine did.

He went to MC in November of 2021 and on hospice a year later, mostly due to behavioral issues escalating. The only thing the MC visiting nurse practitioner knew to do was to dose him with enough antipsychotics to make him almost comatose.
But the hospice doctor has reduced antipsychotics to a minimum and has recently made changes to his pain medication. He still gets interthecal continuous fentynal but, instead of having additional “break through pain” fentynal, initiated via a push button remote, he now gets low dose extended release oral morphine, twice a day.

So far, the combo is addressing both pain and behavior, like nothing has before.

Thanks for sharing, Eva. I can’t help thinking Greg’s medications should continue to be increased, too, until he eventually doesn’t wake up. His situation continues to worsen and, last Thursday, the MC facility, where he’s resided for the past year and half, decided to give me 45 days eviction notice. The facilities director told me she thinks he should be in a skilled nursing facility, where they can keep him sedated. She said that, even if another memory care facility decides to take him, I’ll likely run into the same situation again, where they’ll decide to evict him. I’ve called some skilled nursing facilities but, when I tell them all this, they sort of respond as if they think I’ve got my head up my ass. And they tell me they’re not equipped to deal with dementia.

Ernie experienced a lot of pain from a DVT that was diagnosed after his Alzheimer’s diagnosis. He couldn’t tell me exactly where it hurt but I could tell by the grimace on his face and he would get very agitated, constantly moving his leg. That was why he went to hospice for the last time. Because I was no longer able to control his pain at home with prescription pills. They put him on morphine and kept increasing the dosage until he would go to sleep. He finally went to sleep and never woke up again. He passed away 5 days later.