Good morning, I was told yesterday by the hospice nurse that my husband may not be here next year.
Ricky started holding his spit in his mouth not swallowing and then when he does swallow he chokes on it. He weighs 120 pounds , I still get him up out of bed and watch TV with me. He is still eating but chokes on his spit.
Can anyone tell me is this the beginning of the end, or has the end all ready started? As much as I love him I don’t want him to suffer.
Thank you for any advice.
Hi Penny I think they forget how to swallow the sylvia as we do it automatically so my doctor told me so what happens it all collects in the mouth Sometimes my husband dribbled a lot he still does when he’s asleep
For the daytime I researched atropine drops to dry up the salvia my husband just had 2 drops under the tongue twice a day
They are actually an eye drop but good for drying up salvia hope this helps it also helps him eat as well he’s not coughing all the time
Hope you can get some from your doctor
Who knows how long they’re going to live no one is god
just treat the symptoms don’t listen to them
Hugs xx
Thanks it was just hard to hear.
Hi, I agree with Dance1955, they do forget to do things automatically like swallow and blink.
If he is still ok to drink none thickened liquid then a sharp fizzy drink can help to clear the sticky saliva, we use chilled tonic water or bitter lemon.
Thanks I’ll try that.
Hello,
We also get my mom up and ready for the day even if it means sitting watching tv a lot, play music, the psw does the exercises with her. She doesn't walk at all anymore. Further to the choking, we have moved to pureed foods, no milk in the evenings, all liquidy foods are thickened and we have just started using an oral suction machine. This is much like a dental mouth suction hose. It's great to suck up the extra saliva, thickened saliva and phlegm. It is quick helpful, although not very pleasant, but the choking on everything from saliva to food is also very hard on them. The throat doesn't always want to swallow. Sometimes we even take a break from feeding for a bit, then the swallowing starts up again.
All the best!
Hi Penny, my husband is at this stage too. No knowing life expectancy but my husband is regarded at late stage but that can go on for some for any amount of time if he’s cared for and we’ll supported.
I would recommend Hockney or Scopade patches. They work to reduce the saliva build up. As soon as I started them in him he stopped choking on saliva completely. Some fruity juices can promote extra saliva through like citrus fruits but keep an eye on this. Help him by patting him on the back gently at the top of his back and if safe lean him forward as this will force the saliva to exit his mouth through gravity. If he gets a dry mouth the GP can also precrube a spray yo lubricate the mouth and stop extra dryness. Patches last 3 days
HiNo one can predict accurately with this vile cruel illness, however decisions need to be made and documented wether your man wants to go down the route of peg feeding, speak with your hospice they will be innvaluable. It was not an option mine wanted.
Julie x
Hi there
We used Atropine eye drops initially for excess saliver then moved onto Scolpadeine patches. In the later stages my husband was prescribed glycopyrrate which was administered in the driver.
Hope this helps, keep on keeping on.
Anne
Coughing and choking on saliva uses a lot of energy so doctor can prescribe a drug to dry the mouth, we used Scopoderm patches which is a travel sickness medication and it did work. Unfortunately this was 1 year before the end.
My husband didnt have trouble with swallowing until 3 weeks before he died then he coouldnt eat or drink, we didnt want a peg fitted and with the feeding tube he just kept pulling it out so I knew he didnt want that. My thoughts are with you.
love and hugs Julia
Hi again, please don't take a specific trait as marking what stage they are at, the disease does not always follow a set path.My wife does not have a full diagnosis yet but is considered to most likely have PSP, she has been under a consultant for just over 2 years; She has problems swallowing, choking on saliva, very quiet voice, eyes closing involuntarily and reliant on Botox injections to keep them open, all this was within the first year!
My loved one has been drooling for about a year and half. We use the drops as well but she doesn't use them enough to be beneficial. She always like to take medication as PRN instead of directions for the medication. She gets choked on saliva and food as well. So there is no telling how long this disease will continue to make one decline. Best wishes for you and your husband on this journey.
The doctor told me my wife had less than 6 months to live about 8 months ago, so any prediction is only that. Her weight is now below 100 pounds, and she can only eat or drink pureed foods and heavily thickened liquids. Even then we run into periods of choking when the situation can get very frightening. She can no longer communicate and even has problems moving her thumb up or down now for a yes or no answer. She is starting to get severe bouts of sundowner which now can occur anytime from around 3pm to 5am. As such, my ability to sleep well is affected even with full time aides due to non-stop screaming and crying. Drugs help some but the effect seems to be wearing off more and more quickly. I think the end is near but again you never know. This is a VERY cruel disease for all involved.
Thanks hope you have a good day.
Hi penny1956!These are our experiences or informations:
• Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract. Get a pulse oximeter to control. (Fever is an indication usually either pneumonia or urinay tract infection (UTI) in PSP patients).
• It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Ten minutes steam inhalation from boiling water in a bowl with a few drops of some floral essence (avoid mint plants and eucalyptus) that is pleasant to the patient, a small spoonful of marine salt and some pieces of lemon, with a towel covering head and bowl helps. (One to three times a day (*).
• Inhalation of the mentioned water steam together with abundant oral hydration are usually sufficient to improve the fluidity of phlegm.
• A steam atomizer to keep the air in the room moist helped too. (40% - 52% moist advisable.)
• Medications like "Mucosan" (Ambroxol hydrochloride) or “Fluimicil Forte-600” (Acetilcisteine) can help in some cases. Ask physician.
(*) We have observed that a steam inhalation session immediately before dinner can reduce appetite. Giving her dinner "before" the "steam inhalation" the results were better.
• In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. If not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.
• Also here, to avoid in the diet drinks that can be irritating helps: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient), chocolate, orange, lemon, grapefruit juice, etc..
Note.- It has been described that: pineapple juice breaks down the protein very well and fluidifies the mucus (phlegms). It will have to be tested if the patient tolerates pineapple juice without coughing or choking. (Red1990 indicates that: the pineapple juice enzyme complex is available as a supplement called Bromelain. For people taking anticoagulants, bromelain and melatonin have the same risks of gastrointestinal bleeding as aspirin).
There are some foods to avoid…. things like grapes, rice, couscous, lentils, peas etc anything small was problematic as were spicy foods. Foods that crumble easily, cookies, crackers, stringy foods, sticky foods, etc.
• There is a suction machine which seems to help with the very sticky phlegm. We have NOT used it.
• The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.
• Avoid dairy products, especially before bedtime, this seems to prevent the increase in phlegm viscosity.
• Raising around 15º a 35º (9” to 12”) the head of the bed also helps.
Hug and luck.
Luis
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