When is it time for palliative care?

clarinetist

My DH has been in and out of Geri-psych units since May, and has spent more than a month in his current unit. Halfway through his stay, he developed aspiration pneumonia and spent five days in the hospital getting IV antibiotics. He’s back in the Geri-psych unit now, but has had a significant decline. He’s on a puréed diet, but no longer remembers how to use utensils so has to be fed. He walks very slowly now, with assistance, and sometimes seems to freeze in place for a moment. His communication skills have declined too. He can still say words, but they’re often garbled and don’t make sense. He’s also sleeping a lot more, but that could be because of the heavy dose of antipsychotics he’s on (which still doesn’t keep him from being aggressive at times). Because he spends so much time sitting, his feet swell by the evening. He’s also incontinent.

It’s been enough time that I think he’s recovered from the pneumonia, so I’m not sure if his issues are caused by the sedation or by progression. Because he has to be sedated for a memory care or nursing home to accept him, I guess it doesn’t matter what the cause is.

He’s had dementia for six years, but was walking and eating by himself at the beginning of summer. I guess it feels too early for palliative care, but several folks I know have suggested looking into it. Would be grateful for any advice.

fmb

From what you have written, it sounds like he would qualify for hospice care. I would definitely start contacting hospice providers to get information about their particular services. When you choose one, they will evaluate him to see if he meets the criteria. Keep in mind that just because the Medicare criteria say that the patient must have a terminal disease or condition that in the normal course of things could result in death within six months, that doesn't mean that he will die in that time period. My DH has been in hospice care almost a year, many others are in hospice care for even longer. Many of us have found hospice care to be a vital part of the care of our loved one. As we approach the end stages of the disease, we need all the help we can get.

Quilting brings calm

My mom is on a regular diet, still uses utensils, still speaking words that can be understood. She’s incontinent but changes her own depends. She’s unsteady on her feet, but is walking slowly with a walker. She’s on hospice. She lives in an AL. She needs help with showering, dressing. Her cognitive skills have declined. So I don’t see any reason why your spouse wouldn’t qualify for hospice

clarinetist

Thanks fmb and Quilting for sharing your experiences. I’ll call a hospice provider and see what my DH qualifies for.

GothicGremlin

Hi there @clarinetist

Your situation sounds a lot like where I was last year at this time. My sister had Alzheimer's and FTD, and last year in spring and summer, she was still walking and eating finger foods. She was sleeping a fair amount because of the low level anti-psychotics, but she was still doing "okay", if you know what I mean.

Then came the steep decline. When walking she'd freeze up just as you describe, and her vocabulary dwindled. We moved her to a soft diet (October) and then to puréed foods (December) because finger foods had become too much for her to manage. Plus she lost a lot of weight. By Thanksgiving, she was on hospice, and her care greatly improved.

In hindsight, I think she could have been on hospice a month or two before November. So my thought is that it's probably not too early to check on whether hospice might be appropriate for your DH now.

terei

IMO once they cannot feed themselves, they are easily ready for hospice.

clarinetist

Thanks Gothic and terai. I took all of your advice and contacted hospice today. My daughter and I will meet with them soon.

SDianeL

my DH was quickly declining in a similar way. He was in memory care and aspirated on pudding. The head nurse asked me if I wanted them to do an x-Ray. She said if they found something they must transport him to the hospital. Since he was unable to swallow I made the difficult decision to not take the X-Ray or transport him. They started hospice protocols and he passed peacefully the next afternoon. Once they are unable to feed themselves and are unable to swallow they will aspirate again. I would not approve deep suctioning lungs or antibiotics. You are just prolonging the inevitable. So sorry. Hospice will help you. They are wonderful.

clarinetist

Thank you, Diane, for sharing, and I’m very sorry for your loss. I hadn’t thought of declining an X-ray, and will definitely talk about this with the palliative care provider, as well as how to handle any future medical needs that come up.