Dysphagia - Anyone beat this

elhijo

Hello,

My mom is 91 and has ALZ they say late-stage, but my mom is lucid, alert, doesn't wander etc. My mom is very self-aware and not on any head meds. She is taking no medicines under doctor's care. Thing is, her dysphagia has gotten much, much worse lately. We have a barium test coming up but I'm really concerned about how much weight she's losing. Some days pure water will choke her. Mashed potatoes are so-so now whereas a couple of weeks ago they weren't a problem for her to eat. I don't put her dentures on as they haven't fit well since we got them over a year ago.

But I started to put the dentures on yesterday. I wonder if because she doesn't use the dentures she's been "gumming" all day long, producing way too much saliva. Since yesterday when I put on the dentures on, the amount of saliva she spits out has gotten a little better. She still can't eat though.

I understand about late-stage dementia when dysphagia sets in and it's time for people to go. But my mom is lucid, can read, is aware of her surroundings, can carry on a normal conversation for the most part, and is not bedridden, can walk etc.

So, it's almost like having someone lucid or lucid-enough to be lucid coming down with dysphagia which is really bad on many levels.

So, has anyone beat this? I've emailed the home care agency we use now and then to see if they have a nurse, or someone trained to help my mom swallow during the day. It's like she can't move her epiglottis very well anymore (Adam's apple). I'm no doctor but it seems you need to be able to move your Adam's apple up and down in order to be able to swallow. She doesn't seem to be able to do this very well now.

Thanks for reading.

elhijo.

M1

Hi Elhijo. She may have dysphagia for reasons unrelated to her dementia. That's what the barium swallow test will show you. She may need other testing or procedures too but the barium test is definitely the place to start...hope they find something that is treatable.

harshedbuzz

@elhijo

I am so sorry you and your dear mom are living this.

This is very familiar territory to me. My father was one of those folks with dementia whose progression was somewhat atypical from what is so often described here. It took me a while to process the last stages of dad's life as they were so different from what I expected.

For me, 2 truths that often surface here are what helped me understand what I was seeing.

Truth number one-- A person with dementia is considered to be in the latest stage for which they have symptoms/behaviors. I know that a PWD can sort of straddle stages which can lead to a false sense that a person is not as far along in the disease process, but you don't "average" the stage numbers under which you find her symptoms.

Truth number two-- The brain controls everything and the damage from dementia can cause a breakdown in skills that range from memory and planning to swallowing and digestion depending on where the damage occurs.

In dad's situation, many of his skills were remarkable preserved in contrast to how compromised certain bodily functions were. In the last months of his life, he was losing weight at a worrisome pace despite a pretty decent appetite and plenty of calorie dense treats. I read somewhere that a loss of 10% of body weight correlated with an elevated risk of death within 6 months. Dad had been an XL and now his Large tees were hanging on him. His gerontologist explained that in dementia, digestion is impacted. Dad was eating, but his body was seemingly passing the food through without effectively breaking it down.

When I spoke with the DON at his MCF, he ordered a swallowing evaluation. He also ordered an exam by the NP, bloodwork and a chest Xray. An SLP came to see him. I happened on the appointment with lunch from Chik-Fil-A. She tested him on swallowing different textures and noted what she called a "sluggish epiglottis". This is often end-stage stuff. This structure is higher up than you are thinking-- it's at the back of the throat which can add to the risk of aspiration if your LO doesn't swallow their food immediately but pockets it or allows it to just hang at the back of the throat. It's kind of a flap of tissue.

During the eval, he ate his various treats. He used the bathroom a couple times. He flirted shamelessly with the SLP telling her about some businesses he owned in the community where she grew up. And he told us all about a visit he'd had from my sister earlier that day-- about how busy the kids keep her and how she's up for a promotion and hasn't had time to come see him. (FTR, my sister died in 1994 and her girls are 40-something)

FWIW, you can aspirate on saliva especially if you don't swallow it regularly. The SLP suggested we verbally prompt dad to swallow as he still could with a prompt. TBH, that day I think I was hearing the secretions moving that are sometimes called a "death rattle".

This is like the picture she used to describe the structure of the throat- because I'm not a doctor either.

Human Throat Anatomy Stock Illustration - Download Image Now - Anatomy, Throat, Pharynx - iStock (istockphoto.com)

I spoke with the SLP after. She didn't suggest mechanical processing of his food or thickening drinks as she was concerned about his appetite and weight loss and saw he enjoyed eating. She was gobsmacked by his conversational skills in contrast to how poor his mechanics of swallowing were. She was especially shocked by how convincing his description of my sister's visit was when I told her it didn't happen. The bloodwork and Xray happened not long after I left.

She also suggested safe feeding strategies, no straws or sports bottles, he has to be sitting fully upright and we should prompt swallowing.

I stopped by my mom's house because I was really concerned, he was entering stage 7. She said she'd visit him the next day. I called dad's brother who also declined a visit immediately and promised to stop by the next day. Dad died from complications of aspiration pneumonia in his sleep later that evening which was confirmed by the Xray.

Again. I am really sorry you are in this place.

HB

housefinch

I think, at 91, swallowing difficulty and significant weight loss are very worrisome. Regardless of how lucid she seems, I would unfortunately prepare yourself for things to worsen. I’m trying to imagine, if they found something treatable by a procedure, if the risks of anesthesia and possible complications would be worth it in a 91 year old with dementia. Even in a 91 year old without dementia. I think that, at 91, every day even in a completely healthy person is a gift. Personally, I would think seriously about how much testing I would subject her to—-because what will you do with the results. Sending you hugs and support.

elhijo

Thank you all that replied. harshedbuzz thank you for sharing so much. And housefinch, I am in 100% agreement with you. I canceled the barium test as the day before my mom had said her leg was weak. When she says this, she seems to go into her "weak leg modes" where she might fall. Unfortunately, she had a fall yesterday from which she's recuperating now but she doesn't want to eat much. My thing with the barium test was, she was in one of her weak modes and it is a risk getting her in and out of a vehicle. Plus, she may not even understand what the nurse/doctor would be asking of her in the test so then why would we be there? I've heard the option for persons with dysphagia is a feeding tube inserted into the stomach but that just sounds so nasty. This is a difficult situation to be in especially given my mom is 4' 10", she's tiny enough as is without subjecting her to different prodding and poking's. Even pureed foods she seems to have problems with swallowing now. The dentures oddly enough fit better now than a year ago but she can't swallow well. Only thing that goes down well now is water (no choking tonight on it). I've got the heavy, thick saliva problem solved now that the dentures are on but now, she's just not hungry. Hopefully tomorrow her appetite will be better. Tonight, I gave her heavy cream to drink as it is very nutrient dense and got about 1/2 cup of pureed chicken parmesan in her. That's all she would eat. But maybe tomorrow will be better. We have a dentist appt. and an appt. with the primary doctor next week. Wish us luck.

housefinch

Gosh, what a tough situation. I’m sorry you and she are having to go through this. She’s lucky to have you and hopefully you can get some excellent care and support from those appointments. Her regular doctor who knows her well will probably have some perspective too. Sending you strength as you both move forward.

harshedbuzz

If you can find the time, this book may be very useful reading for you. It's written by a physician who goes deep around the topic of various procedures in the context of old age and life-limiting disease.

Being Mortal | Atul Gawande

Most caregivers I know would advise against tube feeding for an advanced dementia patient because it doesn't generally extend life or offer better quality of life and can bring complications like agitation and infection. Surgery to place a PEG tube would come with anesthesia (and the decline that triggers in most) and nasal tubes aren't generally well tolerated. Plus, the PWD could still aspirate on saliva. The other piece is that by the time a PWD isn't swallowing effectively, other parts of the digestive system are shutting down as well; her body may not fully absorb the calories or nutrients from what goes in.

HB

elhijo

Well so far I've corrected the situation somewhat. I had to try anything as if the situation were reversed my mom would spend every penny to save me. So, it's my turn to do that for her. Some moms abandon their kids, some don't. My mom didn't. So, I spent the $400 for the Vitamix blender at Costco and about $150 on a good tasty, powdered protein supplement, bananas, fiber power, good quality pastries, frozen mixed berries, milk, Greek yogurt, and vitamin gummies.

This helped a lot. Without sounding like the YouTube infomercial, the Vitamix product does what it says in producing velvety smoothies. And that is the exact consistency my mom needs. I learned no milk though at all as the horrible bad thick phlegm came back, but it wasn't a horrible hour+ episode like before. It's been two days since I bought this, and mom seems to be getting nourished again and the weakness has gone done noticeably. Her face is back to normal and happy. The dentures have helped her eat real foods like the bear-claws I bought but they have to me microwaved no more than 20 seconds for the consistency to be right for her. I've also experimented with putting frozen pancakes, Greek yogurt, and then making it into a "batter" in the Vitamix. Then put it in the oven for about 15 min. And then topping it off once it came out with the mixed berry slushie I made which had protein powder in it. I was so happy mom could eat most of it.

Since my mother will never say, "I don't like it" I think me feeding her nutritious stuff before, veggies, corn, etc. made her just hate the food and caused loss of appetite. I've learned that if something is really good, and really tasty (usually not really healthy but anyways), my mom will find a way to eat it (provided she can). And with the Vitamix, I can make healthy things and get creative as the thing will blend anything and it is easy to wash and is of really good quality, so I don't have to worry about gears burning and having to throw it away and have to look for another blender online (researching things like this takes time). Also, I liquified the canned chickened they sell with some good quality chicken stock they also sell and it's tasty and mom ate it. Over 6-months I've been watching a lot of YouTube videos on dysphagia recipes and cooking videos etc. since I don't know how to cook. All that paid off now that I have the right equipment.

I can't say I've got the whole dysphagia situation licked but we'll see.

Thanks to everyone for the well wishes. I'll check back in sometime after the dentist and primary visits.

God Bless,

elhijo

housefinch

Your mom is so lucky to have an hijo like you. What a great job you’re doing 💕

elhijo

Well as promised I'm updating this thread. Hopefully it will help someone. Visit to primary went ok. Dentist wanted $700 for a lower and upper denture realignment. Will have to think about that one. But mom did get a full mouth check with x-rays and everything looks ok for the most part. The dentist seemed sincere in the treatment but his prices are known to be very high. Thing is, he's right across the street and it's not fair to have mom getting in/out of the car and price shopping all over town. As far as the primary goes, basically my mom is ok The weight she's lost seems to have been good for her to loose.

So for now if I avoid dairy and can blend things to a consistency my mom can eat, and can vary her diet so she doesn't eat the same thing each day, I think I can keep the dysphagia under control.

Thanks everyone.

elhijo

https://alzconnected.org/discussion/comment/182589#Comment_182589

Thanks harshedbuzz,

My mom sort of took a step back. It is so hard. She is loosing so much weight but she is still very strong and lucid. I'm going to read the book you quoted. However, I can't shake the feeling dysphagia isn't a death sentence and there's a way to beat it somehow. My mom is just so lucid and normal and strong. Her beef at this time is just dysphagia. If she was bedridden or in that type of shape, it would be a different reality for us. But that's not her. I'll read the book though, I think it'll help.

Honestly, the best dysphagia advice I got was from the ALZ counselor who told me to have my mom swallow with the neck down. Real-life nurses, the speech therapist, etc., didn't give me this advice. I'm continuing my mom's reh

ab though (physical, ot, speech).

Thank you

harshedbuzz

@elhijo

I am sorry you and your dear mom are living through this. It is so difficult.

I can appreciate the cognitive dissonance you are feeling with your mom still being very much herself one one level and, in a situation where so basic a skill as swallowing (until recently, swallowing was considered a reflex) is no longer reliable. I lived this.

Sometimes the damage to the brain in dementia doesn't follow the typical pattern described in FAST. My dad's did not. The day my dad died, I brought lunch to the MCF. A milk shake, chicken nuggets and fries from Chik-Fil-A. The SLP was there doing a feeding evaluation as dad had recently been sputtering on liquids which is a red flag for aspiration. Until this I would have described him as solidly stage 6-- he knew his people by name and relationship, he spoke in conversational monologues, etc. I had been concerned about the increase in the rate at which dad was losing weight and how food was "going right through him" so the DON ordered a feeding evaluation, chest X-ray and bloodwork to see what was going on.

The SLP was happy to use the food I'd brought to observe him. The SLP was early 60s and quite attractive. Dad flirted shamelessly with her for a bit; they'd lived in the same town as young adults and he told her about a business he'd owned there (her mom was a regular customer). Dad excused himself to use his bathroom (ambulatory and independently toileting) and came back and told me all about a visit he'd had with my sister earlier. He told me how she apologized for not coming more but was busy with work and being a single mom to 2 young girls but would try to come more often.

After the eval, dad decided to take a nap, so I talked with the DON and SLP in his office. The SLP noted that dad's speech was quite intact with an exceptional vocabulary considering the difficulty he had swallowing. The DON noted that dad was able to walk to meals and the occasional activity. We devised a safe plan for feeding-- upright at a table, no mixed texture foods (cereal & milk or chunky soups) and to not yet thicken his liquids as she wanted to make sure he stayed hydrated. She also instructed us to prompt dad to swallow-- verbally at first and then to gently stroke his neck (like pilling a cat) if needed. She commented about how happy he seemed talking about my sister coming. My sister had been dead for over 25 years at that point so the story kind of freaked me out. At any rate, I stopped by mom's to tell her about the most recent developments and suggest she go see him and I called my annoying uncle of drive-by visit fame to gently encourage him to visit soon as well. Mom got the call that dad had died in his sleep a little after 10pm that day.

It seemed surreal. He'd been very much himself still-- flirting, making excuses for his favorite child and even gorging of sweets (asking me if I had any cookies after finishing his milk shake).

I'm not saying you won't beat this, just that sometimes the end doesn't look like it does in books.

HB