Hospice

JoseyWales

Usually I come here to rant and vent. 😁

But not today. Today I'm here to sing the praises of Hospice. DH was placed on Hospice almost 4 years ago. DH was in memory care at the time, and losing weight and had just entered a big decline. I decided to call hospice and see if he would qualify. He did.

In the last 4 years they have helped me navigate so many challenges, and are my second set of eyes on my husband in his facility. His facility is fairly good, but just knowing there's someone else there looking out for him is so helpful. They've helped get DH on medication to help with his unending anxiety when the facility doctor refused to prescribe calming medications.

Here's my most recent reason to be thankful. First know that my DH is in very late stages of dementia, He cannot move himself, can't talk (except maybe a random word every so often), doesn't really respond to anything. He has been on pureed food for about a year. He was put on pureed because of some weight loss and the people at the facility felt like he'd get more nutrition from pureed. He seemed to be getting fatigued with chewing and wasn't eating most of his meals. After a short time his weight loss stopped, and since he didn't seem to mind the pureed foods, I didn't challenge anyone to get him off of it. Several months ago I asked if we could have the swallow study done again to see if he could still eat regular (soft) foods. I had been asking to switch back to the soft diet, but they couldn't do that without a swallow study and doctor permission. The facility kept dragging their feet. I complained to hospice about my frustration, and hospice told me I could make the change if I wanted to, without the permission of the facility. So I put in writing that I wanted him to have a soft lunch the next day, which I fed to him to see how he would do. He did great. During that lunch another hospice person happened to come by. I explained how well lunch went. And the IMMEDIATELY put in an order to switch his meals! By the next day he was back on a soft diet of real food.

And here's the fun part. Like I said earlier, he really doesn't respond to his environment. BUT I've fed a meal almost daily for the last week. Each time he makes "mmmm" sounds with his food at some point. Hospice is about quality of life at the end. We've improved his quality SO MUCH.

And yes, the facility knew I was ticked. They sent someone out to do a swallow study the day after I demanded his first soft meal. She said he did excellent, and couldn't figure out why he was still on pureed foods.

This is one of those times that I'm happy with myself, yet also mad at myself for letting it go this long without really pushing for what I know should happen. This road isn't easy, but I'm going to take this as a win for now.

If you're on the fence about calling Hospice - please do. It was the best decision I ever made in this horrible journey. Or maybe the second best decision I made after working with an elder care attorney early on to make sure I was set up financially through all this.

Biggles

Well done Josey Hospice sound extremely helpful and definately in your court. Well done for being strong enough to stand up for your DH and do what you feel is best. Going against the establishment isn’t easy it takes courage, determination and a strong feeling of what your DH would like and what should work. You have inspired me.

annie51

That’s a very positive post. Shows the beauty of hospice and also your fierce determination to make your DH’s life as good as it can be. Kudos to you!

Goodlife2025

Love your post and hoping when the time comes Hospice is what I hear from those of you here and are 'in the know'.

tonyac2

Good for you @JoseyWales, you did well by your DH. You are showing up for him and getting things done.

Our Hospice experience was amazing. My only regret is I wish I would have sought them out sooner.

jgreen

Well done @JoseyWales!!!!! Thank you for letting us know.

You are a fierce advocate for your DH. Yes, this is a definite WIN 🥇

elainechem

I loved hospice for my hubby. They were so helpful, especially at the end. They came daily to help change him and clean him up. I couldn't do it alone because he was too heavy for me and he couldn't understand that I wanted him to help lift his bottom. I also loved that all his prescriptions were delivered and that I didn't have to take him out to doctor appointments anymore.

About the pureed food: the last couple months of his life he could swallow just fine, but he forgot that he was supposed to. That was unexpected to me. One day, I observed him chewing and chewing scrambled eggs. I encouraged him to swallow, but he couldn't understand me. I decided to try pureed food and that went so much better.

Beachfan

Always, always, always thinking of you and praying for you and your DH. My DH deteriorated so quickly that he only had Hospice services for 4 days but they were wonderful. I remember the sweet nurse saying to me, “You can tell by the mottling on his feet that he is actively dying.” I thought to myself, “A lot you know….. he’ll still be here on the 4th of July.” He was gone in 2 days. I miss him so. Stay strong. ❤️❤️

harshedbuzz

@JoseyWales

Strong work you!

If he's able to get some enjoyment from a soft food diet, I say go for it. A PWD can aspirate on their own saliva as swallowing is lost as a skill; pureeing food offers a false sense of security against what is likely inevitable.

We were fortunate that the SLP the MCF brought in prioritized QOL for dad. She gave us safe-feeding tips (sitting upright, no straws, no mixed textures like soups or cereal, etc.) but felt thickened liquids and a pureed diet would cause more frustration than safety. My last meal with dad was Chik-Fil-A nuggets, fries and a shake that he thoroughly enjoyed.

From the gifted link-
https://www.nytimes.com/2024/09/14/health/medical-practices-treatments-patients.html?unlocked_article_code=1.11A.cujB.AyiFwDjDMgM_&smid=url-share

"By Paula Span

Sept. 14, 2024Leer en español

An older patient with dementia is in the hospital and has trouble swallowing. A speech pathologist recommends thickening the liquids the patient drinks with starch or gum and specifies how viscous her tea, water or juice should be. Should it resemble honey? Or apricot nectar?

A doctor writes the order, and the discharged patient returns to her home or nursing facility. She may be drinking thickened liquids from then on.

The rationale is that this sludgy stuff prevents patients from drawing liquids into their lungs and from developing aspiration pneumonia. But does the practice work? Some geriatricians have doubted it for years.

Now, a large-scale study from the Feinstein Institutes for Medical Research in Manhasset, N.Y., has found that liquid thickening doesn’t actually help such patients.

This happens with some frequency: Medical practices so commonplace they rarely raise eyebrows turn out, after further investigation, to have scant basis in fact.

“There are plenty of things we do in medicine that have no evidence,” said Dr. Matthieu Legrand, an anesthesiologist and critical care doctor at the University of California, San Francisco.

They continue, accepted but untested, “because we have always done them, so they just keep on happening.”

Dr. Legrand is the lead author of a new study examining another common policy: discontinuing certain blood pressure medications a few days before patients undergo major surgery.

Herewith, a look at three common practices getting closer scrutiny:

Thickened liquids

About a decade ago, geriatricians at U.C.S.F. decided, as a one-day experiment, to try the same thickened liquids they order for patients.

“We got headaches. We got dehydrated,” recalled Dr. Eric Widera, among the participants and author of a recent skeptical editorial in JAMA Internal Medicine.

“We couldn’t do it for 12 hours. We were asking our patients with dementia to do it for the rest of their lives.” Yet, “there wasn’t any evidentiary basis” for the policy, Dr. Widera said.

Now, there is — and it doesn’t support the practice. The Feinstein researchers analyzed the medical records of nearly 9,000 older patients (average age: 86) hospitalized with dementia and swallowing difficulties. Their hospital diets consisted primarily of either normally thin or thickened liquids.

Matching the groups for key traits, the researchers found no significant difference in length of hospital stay, readmissions or death rates. Those drinking thickened liquids were less likely to need ventilators but were actually more likely to develop pneumonia or other respiratory problems.

Moreover, drinking sludge “really takes a toll on their quality of life,” said Dr. Liron Sinvani, a hospitalist and geriatrician and the study’s senior author. Many such patients are nearing the end of life.

Some will choke or cough when drinking thin liquids, so thicker liquids make sense. Some don’t dislike thickened ones. “We can’t say 100 percent, this is a wrong practice,” Dr. Sinvani said. “But we can question it. It’s not clear that what we’re doing is best for people.”

HB

JoseyWales

HB - what an interesting article about thickened liquids! I've already thought that I won't be a fan of that when they try to thicken his liquids. And we continue to allow him to use a straw. Because he'll drink lots of fluid with a straw, but not out of a cup. I'd rather have him hydrated. It's all a risk right now, but so what? It's not like we can reverse dementia. I want him to enjoy what he can now.

And yes, both the head nurse at his facility, hospice and the speech therapist told me about the risks of aspirational pneumonia and choking by changing his diet. But he's not having trouble remembering to swallow, so I'm not really concerned.

JoseyWales

https://alzconnected.org/discussion/comment/278803#Comment_278803

Beachfan, I'm so sorry that all of us have had to go through this. But I'm also happy - not really happy but I don't know what other word to use here - that it went quickly for your DH. I wish there was a different outcome to all of this, and forever we are marked by this horrific disease. I'm sure you miss him something terrible.

My dad was on hospice for 2 days before he passed (cancer). My mom did not appreciate the hospice services at all. She was against bringing them on for an entire month until I finally convinced her. But it was too short of a time for her to find out what they could help with. She was frustrated that they were in her house. Even for my dad, I appreciated their input and support.

I found out about skin mottling being a sign of impending death about 2 months ago. DH went through a couple of days when hospice and the facility were both sure he was going to pass. He was non-responsive, not eating, had the "death rattle" and 2 different hospice nurses pointed out the mottling on DH's legs. After a few days DH rebounded. He's breaking all the rules. But these kinds of declines and rebounds are what keeps him qualified for Hospice.