Dan usually doesn’t have much trouble with choking or coughing during the day as long as he uses a straw, but he is coughing several times at night. Oddly, he seems to cough more when the bed is elevated too much. I always worry that he’s getting sick, but during the day he’s been OK. I worry that perhaps he beginning to have problems with saliva . Any experience with this .
I try hard to encourage him to drink, but usually only get him to drink 24-32 ounces . He gets a little extra from the food he eats. Is that way too low.
Thanks so much for all of your help . It is so nice to have somewhere to turn. Today the hospital bed comes and he will be downstairs in the living room with a video monitor. I wish we had an alternative, but life has become such a struggle . Never a dull moment with PSP.
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Karynleitner
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However in hot conditions that should be increased.
This is an absolute minimum NAM (U.S.) recommend double that.
Don't be too sure about fluids from food. Protein uses a lot of water to digest it. For this reason sailors know not to eat protein in life rafts or when water supplies are low.
I know it is a struggle to get the fluids down. We are having that difficulty with Liz right now.
The cake icing syringe really worked for Liz. squeezing thickened fluids into the space between the cheek and teeth. In very small amounts each 'dose', otherwise choking can occur.
The SALT nurse was dead against it and said it could cause choking. I will leave to your imagination what I think of that. Dehydrate or splutter a little? She never choked - I was too careful and an icing syringe is designed to give you control.
The other thing which works well is a feeding cup with a larger opening. The fluids will pour in to quite a degree.
We use this it has an internal cone and so it does not need to be tipped up too much to get fluids to run. It is also a thermos style cup sot it keeps fluids at their temperature.
It's very difficult to keep fluid intake up, Ben either has fluids thickened to thick yogurt consistency and spoon fed or slightly thinner and I use a Kappicup, recommended by SALT and that works very well as they don't have to tip head back which opens the airways ( will drink thickened tea from this) I try every way but which to add extra fluids to food and he also enjoys semi frozen smoothies, I freeze little bags of smoothies and then part defrost and make into a slush, lovely and thirst quenching. Hope that helps
Karyn, I am glad you are getting the hospital bed. Hope it is electric. Jim always slept in a lift recliner while at home but now that he's in the nursing home he has adjusted to sleeping in the hospital bed which is much better. He sleeps at 30 degrees but that is because of the feeding tube. The straw was a no-no for us as the Speech therapist told us the straw sucked in the liquid way too fast and was not recommended. Just for your information. Hope it helps Dan. Sitting here in snowy and ICY Minnesota. Joyce
Joyce, did you use a special cup.? A this point he does OK with the straw, but I know that can change quickly . I believe he may just be beginning to have some occasional issues with swallowing. At this point he sometimes has difficulty opening his jaw wide enough to bite . I have adjusted his diet to meet this need.
I’m glad John has adjusted to his new surrounding . It’s all so hard. At this point moving and cleaning Dan is the toughest. Once he’s settled, he’s OK. My biggest fear is the choking and the need for suctioning. It’s all tough ,
Wisconsin had one nice day, now gloomy, cold and icy . Days like this I don’t mind being stuck in the house. Our best to you and John.
My husband has been downstairs in a hospital bed for almost a year. I hated it at first but it has worked well. I do have a security camera. It was fairly unproblematic until we had a power cut in the middle of the night and his pressure mattress collapsed! I contacted the electricity company and they now text me if the supply is interrupted. However, we are now in the final stages of this hideous disease and although PEG fed my husband gets very congested with saliva . I have read posts on here about suction machines and hope the local hospice will provide one for us.
Coughing is good because it means he is moving the gunk from his chest. I clean my husband’s saliva from his mouth with a small mouth brush. Oh - the things you have to learn to do with this illness. X
My husband has cbd which is slightly different but I think his coughing is due to the cbd. I think the secretions in his mouth have thickened and his brain has forgotten how to clear them regularly so they build up during the day and then he coughs at night. I make sure he sleeps in a semi upright condition wedged in by pillows and sometimes get him to try to inhale some steam if it is bad. I still worry but yes I do sleep. A friend reminded me that my son used to have croup as a baby and it was always worse at night.
This is so tough for you - it is the constant nagging anxiety that wears you down and you wonder if you are doing the right thing. My husband has had aspiration pneumonia four times now so I watch his coughing like a hawk but still cannot prevent it.
Look after yourself. You need your rest and it sounds like you are doing everything you can. Hope Wisconsin is not too chilly!! Xx
Thank you. I appreciate your reply. He also has begun Keeping his mouth open. It is sometimes tough to care for him and is wearing us all down. It is so difficult to watch, and we have not experience the bad choking yet. I agree that the anxiety is the worse. It’s is 4am and I am awake.
Are you able to move him from bed? Dan is difficult to move and quite rigid. I worry because if he got sick we would have to call 911.
Does your husband need to be sunctioned. ? I am afraid that the choking, particularly at night, may be my breaking point. Scary.
It was awful to see this vicious disease eat away at these amazing people. So sad.
My husband cannot move at all unaided- he is completely rigid. He has to be hoisted and usually that helps to clear his chest. Today we hoisted him into a chair for a couple of hours. The suction machine has arrived but I haven’t used it yet. I am still using the mouth swabs. I still work so need to be able to sleep but of course i don’t ! This morning I got up at 530 to check if he was ok. It is difficult not to worry though and easier said than done.
I have called 999 several times and he has been admitted to hospital and each time he has been treated successfully, although now we have been told to only contact the hospice. It is different in UK I think.
This is such an unpredictable illness and a tremendous roller coaster of experience but as I said before you need to look after yourself. I am sure you are doing everything possible for him.
I sometimes give my husband a couple of sips of thickened red wine in the evening and that relaxes him too! Xx
Hi, If my wife(CBD) is on her back at night she tends to choke, so I always put her on her right side and support her back with a pillow to stop her rolling onto her back, she cannot go on her left side due to the rigidity of her arm. This stops build up of saliva, which can drip out the corner of mouth freely. Because she does not move during the night rubbing in some barrier cream is essential on hip, posterior and elbow, one does not want pressure sores building up which can be VERY serious (starts with red mark on skin).
Concerning drinking straws, our SALT team do not recommend straws, but I do use a straw, withdrawing it after first suck and then allow her to swallow, I have found if the straw is just left in the mouth the patient fills the mouth and then forgets what to do and that is when the loss of control of the flaps (not correct terminology) and goes down wrong way, there have been times when the liquid has come over me! One other thing re straws, there are ones that have a small ball inside so that the liquid is held in place whilst drawing breathe, but usually I cut a straw in half. Best wishes
Do truly understand the thought of it progressing is sometimes overwhelming,ask away someone may have some tips.
When it came time with the hospital bed I gave up our bed,king then queen for a twin and have pushed them togther,also have a monitor when I need my time.
Dee, I wish I could do that, but right now our bedroom is upstairs . The hospital bed is in the living room for days when we can’t get him upstairs. He is now not able to walk at all, needs at least two people to pivot to wheelchair. We have a chair that travels upstairs, but that’s hard now too. I looked for houses to move last fall and planned on beginning again soon. Now I wonder if that’s wise.
He is difficult to change and dress. I thought maybe a hospital bed would be easier. He’s only slept in it one night, but that was not great. Are you able to get our husband out of bed.?
Thanks So much. I agree this sight is invaluable . I am so happy I found it. The people are all amazing .
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hubby - speech - fluid retention
Coughing 
Coughing and clearing throat
