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Thickened Liquids
tellas33
Posted: Tuesday, February 6, 2018 12:48 PM
Joined: 5/9/2016
Posts: 21


Hi:  Mom is 93 and in a NH.  She's been receiving hospice care for a month.  Weight is down to low 90's.  Sleeps most of the day.  Eats very little and drinks some via a straw.  I'm trying very hard to respect what I think are her wishes.  (She is non-verbal).  If she drinks or opens her mouth, I'll feed her.  If she shakes her head "no", or turns away with pursed lips...I back off.  It's a long process to get a few ounces or a few bites in her.  There are some CNA's who are successful with mixing her food in a cup and getting her to drink it...but honestly I'm starting to feel it's very forced and more for their own validation.  (God that sounds awful...I just don't want her shouted awake to be force fed).  Anyway, I have noticed the last few days she holds liquid or food in her mouth longer before swallowing.  I've also noted more coughing (nothing major) spells while drinking.  One of the nurses mentioned that the next step would likely be thickened liquids.  I'm trying to understand the benefit.  Does it help prevent aspiration pneumonia?  Obviously I don't want that...but really struggle lately with what I feel is "all of us" cajoling her more and more to drink or eat, and to what means?  I know it's not going to change the outcome.  She's been in a nursing home 6 years, non-verbal for 2.  Generally a happy woman but has become very disengaged and when she does open her eyes it's often blankness or her extending her arms out for whatever it is she must "see", and then closing them again back to sleep.  I'm sorry to ramble.
TessC
Posted: Tuesday, February 6, 2018 4:14 PM
Joined: 4/1/2014
Posts: 4430


It sounds like my mother is in the same stage as your mother-she won't eat very much and can only drink from a straw, non-verbal and sleeps most of the time. If she has her eyes open-it doesn't look like she is really looking at anything. 

 I thicken some of her food only to make it easier for me to hand feed her. I do not thicken her liquids. I back off if she won't open her mouth and so she has lost 10 pounds in 2 months, She is down to 90 pounds now. My thought is I rather have her stop eating on her own than for me to feed a wisp of a contracted body who cannot see or understand a word, and whose only respite from confusion or mindlessness is to be asleep and dream.

We all will die-and I want my mother to die with dignity- but I will never stop feeding her as long as she opens her mouth to eat. I make sure everything she eats is tasty and something I would eat, too. But when she doesn't want to eat-I stop.



tellas33
Posted: Tuesday, February 6, 2018 5:13 PM
Joined: 5/9/2016
Posts: 21


Thank you so much - and yes it sounds like right now we are leading parallel lives.  I'll keep you and your mother in my thoughts and prayers.

 


citydock2000
Posted: Tuesday, February 6, 2018 6:33 PM
Joined: 9/7/2017
Posts: 571


I'm sorry you're having to deal with this - this is definitely the part where decisions get cloudy and difficult. 
They are most likely recommending thickened liquids bc of her risk for aspirational pneumonia. And once a patient gets aspirational pneumonia, they are likely to get it again. And it brings with it other non-hospice-compatible options like intubation/breathing tubes, and feeding tubes.  

Coughing while eating/drinking, holding on to food or drink in her mouth, using a straw - those are big risk factors. The issue with thickened liquids is - well, take a taste of thickened water. If the patient isn't enthusiastic about staying hydrated, thickened liquids will reduce that enthusiasm more. 

You might want to try the thickened liquids and see how she responds. If she is resistant or won't drink, that might be your decision. I'm not sure getting her to switch if she doesn't like it is worth fretting over - often a swallowing study would be recommended but I would assume not on hospice.  Similarly, you might just let nature take it's course.  Might be worth talking to hospice about.  

Good luck. Watching someone slow down is difficult. 


star26
Posted: Tuesday, February 6, 2018 10:08 PM
Joined: 2/6/2018
Posts: 2


Hi, I'm a speech pathologist experienced in working in nursing homes. We're the ones that do the swallow studies and recommend thickened liquids etc. What you are describing is not uncommon with dementia: it's called dysphagia. I'm dealing with it in my Dad now too. It manifests in different ways for different people.  If she coughs with thin liquids (like water), she is likely aspirating - but it's a good sign that she's coughing because she feels it and she's protecting her airway by coughing. From what you are describing, with her holding the liquids in her mouth a bit before initiating a swallow, thickened liquids could help a couple ways: when the thin liquids are in her mouth and she's delayed in starting a swallow, they are likely slipping down her throat, because she's not strong enough to control and contain it all, and they are penetrating her airway. Thickened liquids are easier for her to contain in her mouth and it also moves slower, so when it starts creeping down her throat she's got a little extra time for that swallow to start and protect her airway. The thickened liquids could give her back that little bit of time that's she's delayed. It's possible they could also help her initiate the swallow quicker just because it's a bit more tactile in her mouth - but I wouldn't count on that because it sounds like all her systems are just slowing down altogether.  Generally in hospice, most people would not use thickened liquids or other dysphagia treatments because the focus is on quality of life. But if she's coughing a lot when eating/drinking, that affects quality of life too.  A lot of people hate thickened liquids, but I've had some dementia patients who don't even notice and some that even like it. You can try with her and see. There are 2 types of thickeners: one is made of corn starch (powder) and the other is made of xanthum gum (it's a clear gel.) I don't recommend the powder because it's gritty, gross, and the liquids get thicker and thicker the longer they sit. The gel is more expensive but much better. Some liquids are naturally a bit thicker - such as tomato juice, but that might not be thick enough for her. If she likes it, you could try. You could also try having her tuck her chin (putting it down to her chest) when she takes liquid in her mouth. That would also help it from spilling prematurely into her throat - If she can follow that cue. (if you can have her look down at something on her lap, you'll accomplish the same thing.  Foods with "mixed consistencies" such a fruit cocktail or chunky soups will give her trouble too. While she's working on chewing the liquid from the item will be slipping down her throat. Same for juicy fruits.  I know that you will determine just the right course and balance for your mom's comfort. There is no right or wrong and you love her and know best.  It's a personal decision. I hope this has been helpful and not too much information.  If you do decide to use thickened liquids, keep in mind that if her mouth is clean (brushed teeth etc.) and she drinks just plain thin water and aspirates, that's okay because the water will come out of her lungs just as vapor. But if it carries down bacteria or residual food from her mouth, or she's drinking something else that ends up in her lungs, then she COULD get aspiration pneumonia which she could die from. We all aspirate sometimes but our bodies are strong enough to fight it off. Again, it's a personal decision and about quality of life. Good luck and let me know if I can answer any questions.
star26
Posted: Tuesday, February 6, 2018 10:13 PM
Joined: 2/6/2018
Posts: 2


PS. if she can drink from a cup try that instead of a straw. It's shooting the thin liquids down her throat even faster. With a thickened, a straw might be okay but it will be harder for her to suck it up. You can cut the flow with your fingernail to ensure she doesn't suck up too much at a time. And no bottles or cans (they cause her to tip her head back).  Sorry for talking too much. I'm a swallowing specialist and could talk about it all day!
Tink4495
Posted: Tuesday, February 6, 2018 11:22 PM
Joined: 5/2/2014
Posts: 713


Welcome to the boards Star26,

I am sorry you are on this journey with your father. You will receive lots of support here. I just wanted to thank you for your very informative post. Your experience as a speech pathologist/swallowing expert will be of great value to many here.


tellas33
Posted: Wednesday, February 7, 2018 10:29 AM
Joined: 5/9/2016
Posts: 21


Thank you so much for your detailed response.  It is of GREAT help.

I really tried to observe this morning at breakfast.  Mom no longer has solids ...hasn't for a couple of months.  Everything is pureed.  I sometimes find she likes those Odwalla protein drinks but then again, some days not.  Today I did get her to eat about 50% of her eggs and she drank a cup of orange juice.  She isn't doing great taking things from a cup...actually seems better with a straw...but now I get what you are are saying about it perhaps being problematic. There are one or two CNA's that I know sometimes just put all the pureed food in a cup, mix it with milk and have her drink it from the cup.  I cringe some because I feel it's somewhat forced (shouting her awake and sort of forcing her lips apart to start sipping it).  I mentioned to the hospice person today that I am noting it takes longer for her to swallow or that she holds things in her mouth.  To me her swallowing is louder or more pronounced if that makes sense at all.  Hospice says she has not observed it but will try to.  (I'll be honest, she's a very sweet aide but I'm not feeling she's of tremendous help ..yet??).  Mom gets 1 hour of hospice a day.  I think for the most part it is super early in the morning and she gets mom up, lotioned, dressed and her bed stripped and made up fresh.  Other than that I don't think there is much.  She did offer the same tip about pinching off the straw a few weeks ago when I noticed some issues.

We talked a bit this morning about thickened liquids.  Perhaps it's time to try those.  I just want to be sure that what I'm doing is for my mother's comfort/safety and not taking measures that feel forced.  As I've said before, she's 93 and I just want her to feel peace.

Thank you again so very very much.


citydock2000
Posted: Wednesday, February 7, 2018 10:55 AM
Joined: 9/7/2017
Posts: 571


I really enjoyed the explanation from the speech pathologist - very helpful! 

Tellas33, remember that you're in charge. If you don't want them waking your mom loudly up to eat, then tell them not to.  If you want them to wait until she wakes up naturally, and then bring her food, tell them that. If mornings don't work best for your mom, ask hospice to change it. 

You are the best person to plan out how your mom's transition to go.  I agree with you - she's a person, she deserves accommodation and dignity in her last days.  

Sounds like you're doing great. 


caregiving daughter
Posted: Wednesday, February 7, 2018 12:37 PM
Joined: 11/27/2012
Posts: 1903


star, what an informative post, thanks
Pam14
Posted: Wednesday, February 7, 2018 8:48 PM
Joined: 5/30/2014
Posts: 548


Welcome to Star & it's good to hear from a speech pathologist on here.

My sister needed thickened liquids long before her dementia got bad because of throat issues.  I found the "gel thickener" that Star referred to worked the best for my sister.  It is called Simply Thick.  Yes, it's more expensive than the powdered thickeners, but it does not have an after taste & once mixed into liquid, it ALWAYS stays thickened.  Powdered thickeners eventually settle to the bottom of the glass; and yes, they are gritty & don't have a pleasant taste to them.

I'd recommend using the thickener to try to avert getting aspiration pneumonia.  My sister had aspiration pneumonia many times, and not only would it be the thing that would possibly take your loved one at this stage, it's very painful for them, too.

Best of luck to you in finding the best & most comfortable way for your mom to get through to the end of her journey.


TCL1990
Posted: Thursday, February 8, 2018 6:45 PM
Joined: 10/17/2017
Posts: 56


My father lost some of his swallowing capacity and ended up with pneumonia and sepsis about 4 monthsago.  He was on life support for nearly a week. That hospitalization took away so much. He returned to the nursing home and has continued to decline.  When he first returned, he had puréed food and honey thickened liquids. He was able to go back to solid (non crunchy) foods but liquids still need to be thickened. He’s not wild about it but does okay, though he’s now in hospice and is refusing more meals as we enter this final stage.

I wish you and your mother much peace and comfort.  It’s definitely not easy to adjust to their changing physiology and condition.


citydock2000
Posted: Thursday, February 8, 2018 8:35 PM
Joined: 9/7/2017
Posts: 571


its definitely something to get clear on - aspirational pneumonia can come on FAST.  I wish we had not treated it the first time - if we had known how common it was, how much the hospitalization would take out of him and how grueling hospitalizations are for stage 6+, and how likely it was to happen again - we would have called hospice and stopped treating it much more quickly.
 
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