Bedridden, frail, but still here

CanyonGal

My mom returned from a hospital stay from a UTI and acute kidney injury . She had infiltration from the IV being incorrect and now has nerve damage. She is eating and drinking less and has lost 12 lbs in a month. The damaged arm is the dominant one so the staff have to help her eat. She can still talk. She is too weak to stand so is confined to bed. (She is at stage 6 on the FAST scale). She is on hospice in a memory care facility.

At this point, I worry about bed sores and aspiration. For those of you that are at this stage, what items are helpful? 

*Ollie*

When my mom got too weak and was bedridden, the nurse at the memory care facility got an alternating air pressure mattress pad for her.  This prevented her from getting bed sores and protected her skin in general.  She was on hopsice too so it's possible that came from them.  I'm not exactly sure.  

For aspiration, make sure she is sitting as erect as possible (this got harder and harder for my mom) when she eats or drinks.  Use straws if helpful but they don't work for everyone.    Make sure all the staff that work with your mom know this.  There were times I visited my mom and an aide would come in to give my mom food or drink while my mom was almost laying down.  I had to do some of the education with the aides.  Unfortunate but true.  The facility did the best they could but like all places of work, there are some people that were knowledgable and informed and others that didn't have a clue.  

CanyonGal

My sister had the air mattress from hospice and it was noisy. Mom doesn’t like change but it may worth at least trying it out. (She wants her real bed back, not this hospital bed.)

I found an egg crate foam mattress topper for a hospital bed on Amazon. She has a memory pad topper now which sinks where her rear end is after so many months.

harshedbuzz

Canyon Girl-

The alternating pressure air mattress is the gold standard for preventing skin breakdown and painful ulcers. Egg crates compress pretty quickly. Sometimes lamp fleece will be used on areas especially at risk- heels, hips, shoulder blades-- as well. 

Do you have reason to believe your mom is starting to aspirate? I was told the first clue that swallowing is starting to be an issue is spluttering on liquids- what happens is un-thickened liquid gets to the back of the throat before a sluggish epiglottis can react to protect the airway. And while there are steps you can take to lessen the risk of aspirating, a PWD can aspirate on saliva or gastric reflux which can't be controlled. 

I agree with everything Ollie said, except the bit about straws. In your shoes, I would consider a feeding consult with an SLP who can determine the safest ways to feed your mom. Dad's SLP suggested many of the same things Ollie mentioned-- only feeding when upright and alert, avoiding foods with mixed textures (soup with chunks and cereal with milk), offering a soft diet in small bites or purees if necessary. Dad's SLP was very anti straws and sports bottles- they move liquid and food in the mouth too quickly to be safe and they allow the PWD to taken in liquids in a semi-recline position. 

All that said, my dad died from aspiration pneumonia the evening after his swallow study. He, too, was very much still there. He flirted with the SLP. He excused himself to use his bathroom a couple times which was unusual. He told me all about my sister having visited (she'd been dead 25 years). And he enjoyed the Chik-Fil-A I'd brought him-- especially the milk shake (straw was allowed for this). While it was very sad, we were happy he was spared the horrific aspects of stage 7 with painful muscle contractures, bed sores and further loss of memory. My sister had terrible bedsores in the final months before she died. Aspiration seemed the gentler end of the two.

HB

mommyandme (m&m)

Our alternating air loss mattress pump was fortunately really quiet.  Hospice contracted with the company that brought it so Medicare covered it. It made so much difference in my moms care and she didn’t get up out of bed for two months. No pressure sores or ulcers, ever, thank goodness!  She also hated change or getting up so her comfort was to just stay put. I accommodated.  Hope you find a comfortable solution. 

Have they started thickening liquids to help with swallowing or modified her diet?  Sitting as close to 90 degrees as possible should help too, hopefully. 

CanyonGal

She’s on a mechanical diet, soft foods, soup, etc.

The social worker asked about the thickener and was told that they don’t do that anymore.

I will ask about the air mattress.

BassetHoundAnn

The Alzheimer's Association has a pretty nice pamphlet on late-stage care:

https://www.alz.org/national/documents/brochure_latestage.pdf

Hospice recently gave my mom a spikey foam wheelchair cushion. I tied to the back of her chair a sheep's wool pad because she's developing pressure ulcers on her back. 

Hospice also gave her an alternating air-pressure mattress pad. It does make a sound but my mom doesn't hear it. 

She had a swallowing evaluation and was put on a mechanical soft diet. She refused any thickened liquids, but things like chocolate Ensure and ice-cream are favorites. 

harshedbuzz

CanyonGal wrote:

She’s on a mechanical diet, soft foods, soup, etc.

The social worker asked about the thickener and was told that they don’t do that anymore.

I will ask about the air mattress.

Who is they? Is the bolded some new best practice for swallowing issues? 

It's interesting the difference. Dad's SLP prescribed a standard diet, broth was OK but soups with noodles, veggies and meat pieces had to be pureed and liquids had to be thickened to nectar consistency. 

CanyonGal

The hospice social worker was told that hospice doesn’t give the thickener. Different articles state that a thickener needs to be used correctly and long term, the benefits decrease. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6513397/

https://researchoutreach.org/articles/thickeners-evidence-appropriate-use-dysphagia-management/

The noodle issue issue is a good one, as I have gagged on a noodle in the back of my throat with dental issues. I used a food processor to grind up soups with chunks. The kitchen at the facility does the food, and they have puréed food before. I am not there to witness feeding but hope someone has sense to move her into an upright position (she is in a hospital bed).

She has a large hiatal hernia and has acid reflux which can cause aspiration. She started a self burping habit about a year ago. She would just start burping at random, like a tic. She also has asthma,COPD, arthritis, severe constipation, heart issues, blood pressure problems, atherosclerosis...and now the vascular dementia.

Some days I feel like there are so many things working against any sense of normalcy. I have lived the last 4 years with the cell phone as my constant companion, and have to make decisions whenever the phone rings. (Especially the facility asking do we call a hospice nurse or send her to the ER?) 

The hospice social worker says my mom has no quality of life right now. My mom hasn’t quality of life in a long time and that’s a relative statement because it changes, sometimes rapidly, Each stage brings less quality of life.

CanyonGal

BassetHoundAnn wrote:

The Alzheimer's Association has a pretty nice pamphlet on late-stage care:

https://www.alz.org/national/documents/brochure_latestage.pdf

Hospice recently gave my mom a spikey foam wheelchair cushion. I tied to the back of her chair a sheep's wool pad because she's developing pressure ulcers on her back. 

Hospice also gave her an alternating air-pressure mattress pad. It does make a sound but my mom doesn't hear it. 

She had a swallowing evaluation and was put on a mechanical soft diet. She refused any thickened liquids, but things like chocolate Ensure and ice-cream are favorites. 

Thank you for the brochure link.

CanyonGal

harshedbuzz wrote:

Canyon Girl-

The alternating pressure air mattress is the gold standard for preventing skin breakdown and painful ulcers. Egg crates compress pretty quickly. Sometimes lamp fleece will be used on areas especially at risk- heels, hips, shoulder blades-- as well. 

I will ask the hospice nurse from hell if she can order the air mattress. My mother wasn’t even back a week from the hospital and this nurse (who I will say is not experienced with working with dementia patients in a facility)  wanted to take her off all medications, using some 7 stage jargon, even after her medical director said my mom was at 6e, not 7.

Do you have reason to believe your mom is starting to aspirate? I was told the first clue that swallowing is starting to be an issue is spluttering on liquids- what happens is un-thickened liquid gets to the back of the throat before a sluggish epiglottis can react to protect the airway. And while there are steps you can take to lessen the risk of aspirating, a PWD can aspirate on saliva or gastric reflux which can't be controlled. 

I picked up the swallowing issue from reading the practitioners hospital notes.

She wasn’t eating and I think they thought that was why, although it is not the first time she has been evaluated for swallowing issues. Discharge summary had mechanical diet. She sometimes doesn’t eat due to depression, and the less you eat, the less the urge to eat. And the more weight loss, the more the body will “eat itself” to keep the core running. She’s become bedridden not because that part of the brain that controls muscle movement is gone, but due to strength issues.

I agree with everything Ollie said, except the bit about straws. In your shoes, I would consider a feeding consult with an SLP who can determine the safest ways to feed your mom. Dad's SLP suggested many of the same things Ollie mentioned-- only feeding when upright and alert, avoiding foods with mixed textures (soup with chunks and cereal with milk), offering a soft diet in small bites or purees if necessary. Dad's SLP was very anti straws and sports bottles- they move liquid and food in the mouth too quickly to be safe and they allow the PWD to taken in liquids in a semi-recline position. 

All that said, my dad died from aspiration pneumonia the evening after his swallow study. He, too, was very much still there. He flirted with the SLP. He excused himself to use his bathroom a couple times which was unusual. He told me all about my sister having visited (she'd been dead 25 years). 

The hospital notes had “altered mental status”. I heard that she was hallucinating and referring to people who were not there. But I was thinking hospital or UTI delirium? This is a new term for me to see listed on her paperwork. First thought was she is nearing the end of her life’s journey.

And he enjoyed the Chik-Fil-A I'd brought him-- especially the milk shake (straw was allowed for this). While it was very sad, we were happy he was spared the horrific aspects of stage 7 with painful muscle contractures, bed sores and further loss of memory. My sister had terrible bedsores in the final months before she died. Aspiration seemed the gentler end of the two.

HB

mommyandme (m&m)

Our hospice nurse provided thickener to us, so some still use it.  We never ended up needing it but we had it in case. So sorry for these struggles.

CanyonGal

I just never thought she would reach this stage, this quickly. End stage dementia is hard. For all who live through this stage with their LO, I appreciate your advice. I am just glad she is in a facility.