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Dysphagia is a serious health issue. If a person has failed every swallowing study, then they have a serious dysphagia issue. Many can tolerate solid foods or thicker liquids like milkshakes, whole milk, or peach nectar - but choke and/or aspirate on water or soda.
Most people will stop drinking or eating anything that continually makes them choke - if they are of sound mind. However, if a person is unable to consume enough liquid in a day keep them hydrated, then they will end up dehydrated and with a potential UTI.
I say that when a person passes the age of 80, they should eat/drink whatever they want. Their time on earth is limited anyway - so let's allow them their little pleasures, like coffee.
I've been thru' this first with my aunt and now for several years with my mom. First, you need a speech therapist, not an OT for this kind of issue. Second, drinking with a straw is more likely to lead to problems than taking sips. My mom has really surprised me with her willingness to comply (as she is not generally a compliant patient or even a compliant person) once she aspirated on just a tiny bit of water (taking a pill) and ended up hospitalized with pneumonia. She does find prethickened juices (which I order from amazon) more pleasant than thickening liquids on our own. The cranberry and apple juice ones are especially palatable. She has also found that hot apple cider (available in packets to make with hot water) and hot chocolate are good thickened. Mom is not a coffee drinker, however, so we haven't had to face that issue.
All that being said, people are right when they note that if she wants to die, it's up to her. :(
Mother enjoys her food. She has choking spells. They are not as frequent when I cut her meals up for her in pieces as small as I can. As to sipping coffee, having her put her chin to chest as she swallows allows her to drink coffee without chocking. She also does better drinking liquids through a straw. We are putting off thickened liquids as long as possible. She is eating and enjoying her food and drinks with minor modifications. I rub the back of her neck and shoulders if she starts choking to relax. her.
The whole food situation can get complicated! My husband, with uncontrollable lymphoma, couldn't swallow properly his last month or so, and pulled out a feeding tube immediately a few days before his passing. We would find food on his pillow, and found that there was a lump in a lung that had been there quiescent for a long time that had grown and was blocking his swallow. They were planning a hospice referral but he didn't make it long enough. There is always an end ...
You haven't got that quite right Creativone, occupational therapists deal with the mechanical means to solve problems and remove barriers, they are the ones who can assess and recommend assistive devices. I do agree though that they would not normally be the person to give advice about thickened beverages and modified diets.
Deciding what thickness fluids or food should normally be is done by a Speach therapist not an OT. Has she had a swallow study done? If not insist on one.
I've tried the pre-made nectar thick coffee it's terrible. Have you tried making coffee and using a thickening powder like "thick-it"? It does make the coffee more palatable.
Pt works lower body, OT upper body, ST works mouth, tounge, throat
My DH was prescribed Nectar Thickness too - but you have to play with it. He doesn't need it to be that thick and possibly your mother doesn't either.
I use Thick-It and I start with 1 tsp of the thick-it and stir it in. Yes, I did this with my own coffee and it wasn't too thick and felt 'comfortingly' thicker, almost like chocolate.
For DH's soda's, the Thick-It wasn't working, so I googled it and found Hormel's Thick & Easy packets @Amazon. I buy the Honey Consistency and use 1 packet to half a 16.9 ounce bottle and it works great for DH. It's thinner than Nectar but he isn't choking so it is thick enough. (actually, it was still too thick so I now make 3 bottles out of 2 sodas and use 3 packets. Working great!) If too thick, you can always add a bit more liquid! But I saved money buying the Honey Packets and then using twice the liquid.
I made the mistake when starting and followed the directions. We're all different and you have to find what Mom will drink or she will dehydrate. I let my DH drink his soda's without thickening until even he realized he was choking on them. But it's not written in stone that you must use this much for that much liquid. Experiment until you're both happy.
As several of you have posted, if your mother is capable of understanding the risks, she has a right to decline recommendations by a professional. To her, coffee is one of her pleasures, and therefore, is important for her quality of life.
Even in cases where a person may not be able to fully comprehend risks, if it comes down to a choice of the person eating/drinking what they want, or malnutrition/dehydration due to refusal, allowing preferences must be considered.
My friend that is now in skilled care memory floor also has dysphasia. He was suppose to be on puréed foods and thickened liquids last June. When we put him on this diet he stopped eating. They gave me the option of ‘pleasure eating’ which we did. He was fine until a couple weeks ago when he got pneumonia probably from aspiration, along with the RSV virus and CHF and his platelets dropped to 14. They pumped him up in the hospital with antibiotics and blood products. Now he is back to His facility and doing great. He accepted the puréed diet in the hospital and so far we have no issues. They said he could stay on thin liquids. He still aspirates the puréed food, but, it is what it is. One day at a time. I am fortunate he is a pleasant dementia patient since I visit him7 days a week from 1130-630! So bottom line, let them be happy. Why spend your last days, months, years miserable.
My Dad has failed every swallow study for 5 years (they do a new one every time he's hospitalized). He continues to eat an unmodified diet and chokes all the time. Some meals he chokes on every other bite. He's almost 97 and of sound mind. Food is one of his few remaining pleasures and he has chosen to continue to eat and drink what he wans to..
Yuck, I am on Mom's side even though it might be a bad choice. I find that taking small sips is the best way or for cold liquids using a straw makes it easier to sip. If you have to tip up a half empty glass you are more likely to take in a big mouthful which will go down "the wrong way" The advice to sit up straight and tuck your chin is excellent standard advise. Chewing well and eating very tender moist foods also reduces the risk of aspiration.
Thick-It has a ready to drink nectar grade Coffee product. Some CVS, Kroger’s & WalMarts carry the Thick It line. Maybe buy a bottle to see if it makes enough of a difference to be worthwhile. Or use it to do a 50/50 blend.
There’s also a bunch of on line vendors if so. It’s not exactly cheap but for a diehard coffee lover probably worth the cost.
The thing about dysphagia that seems to elude the notice of professionals is that there are often exceptions that can be made without any dire consequences. If your mom enjoys her coffee and is able to drink it without being thickened then let her, I'm pretty sure she will make the choice to stop if it becomes impossible to swallow without choking on every sip! As for other beverages, water was the first thing that we had trouble with, long before anything else. Many fruit and vegetable juices and smoothies of course are already slightly thickened and may not need to be modified, at least not by much, so feel free to experiment. Drinking through straws worked better for my mom as the change in texture was less noticeable. Nectar thickened hot chocolate is also a good drink that isn't objectionable, perhaps you could make it a mocha.
Is mother in her right mind? No dementia? Keep in mind that if she is, she has the right to decide to comply with advice or not.
Make sure she understands the potential risks of having a normal cup of coffee. (Might she choke? Might she aspirate?) If she decides to have her coffee unthickened, make sure she knows the ways to minimize risk, such as sitting up straight and tucking her chin -- or anything the therapist has recommended.
My husband gave a sincere effort to following the recommended "nectar consistency diet," and decided that he would rather take his chances with the risks, and we dropped the diet.
I'm not recommending that, necessarily, just telling you it is possible.
How old is your mom? What is her quality of life like? Is she fairly content in the nursing home? Or is she miserable most days?
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Most people will stop drinking or eating anything that continually makes them choke - if they are of sound mind. However, if a person is unable to consume enough liquid in a day keep them hydrated, then they will end up dehydrated and with a potential UTI.
I say that when a person passes the age of 80, they should eat/drink whatever they want. Their time on earth is limited anyway - so let's allow them their little pleasures, like coffee.
All that being said, people are right when they note that if she wants to die, it's up to her. :(
I've tried the pre-made nectar thick coffee it's terrible. Have you tried making coffee and using a thickening powder like "thick-it"? It does make the coffee more palatable.
Pt works lower body,
OT upper body,
ST works mouth, tounge, throat
I use Thick-It and I start with 1 tsp of the thick-it and stir it in. Yes, I did this with my own coffee and it wasn't too thick and felt 'comfortingly' thicker, almost like chocolate.
For DH's soda's, the Thick-It wasn't working, so I googled it and found Hormel's Thick & Easy packets @Amazon. I buy the Honey Consistency and use 1 packet to half a 16.9 ounce bottle and it works great for DH. It's thinner than Nectar but he isn't choking so it is thick enough. (actually, it was still too thick so I now make 3 bottles out of 2 sodas and use 3 packets. Working great!) If too thick, you can always add a bit more liquid! But I saved money buying the Honey Packets and then using twice the liquid.
I made the mistake when starting and followed the directions. We're all different and you have to find what Mom will drink or she will dehydrate. I let my DH drink his soda's without thickening until even he realized he was choking on them. But it's not written in stone that you must use this much for that much liquid. Experiment until you're both happy.
Even in cases where a person may not be able to fully comprehend risks, if it comes down to a choice of the person eating/drinking what they want, or malnutrition/dehydration due to refusal, allowing preferences must be considered.
I find that taking small sips is the best way or for cold liquids using a straw makes it easier to sip. If you have to tip up a half empty glass you are more likely to take in a big mouthful which will go down "the wrong way"
The advice to sit up straight and tuck your chin is excellent standard advise. Chewing well and eating very tender moist foods also reduces the risk of aspiration.
There’s also a bunch of on line vendors if so. It’s not exactly cheap but for a diehard coffee lover probably worth the cost.
As for other beverages, water was the first thing that we had trouble with, long before anything else. Many fruit and vegetable juices and smoothies of course are already slightly thickened and may not need to be modified, at least not by much, so feel free to experiment. Drinking through straws worked better for my mom as the change in texture was less noticeable. Nectar thickened hot chocolate is also a good drink that isn't objectionable, perhaps you could make it a mocha.
Make sure she understands the potential risks of having a normal cup of coffee. (Might she choke? Might she aspirate?) If she decides to have her coffee unthickened, make sure she knows the ways to minimize risk, such as sitting up straight and tucking her chin -- or anything the therapist has recommended.
My husband gave a sincere effort to following the recommended "nectar consistency diet," and decided that he would rather take his chances with the risks, and we dropped the diet.
I'm not recommending that, necessarily, just telling you it is possible.
How old is your mom? What is her quality of life like? Is she fairly content in the nursing home? Or is she miserable most days?