Deteriorating

Mum seems to be deteriorating she is pooling  saliva in her throat and sound horrendous sometimes with the gurgling she does manage to swallow it with difficulty she has a peg feed for medication but refuses to have food n drink down the peg (which I don't blame her) she has thickened fluid and pureed diet and realises the risk of aspiration. Gp visited last week and was concerned about the pooling and the risk that comes with it either choking or aspirating they referred her to palliative care nurse. The palliative care nurse visited the next day and spoke openly to mum about end of life care and how this could be what's happening. They started mum on s syringe driver with buscopan in to try to dry up the secretions and on waiting list for admission to hospice hopefully Monday for symptom control. Mum very accepting of this her fight seems to have gone.

I'm struggling because mum doesn't seem any different to me or if I'm just in denial. Sorry for the long post just wondering if anybody had any problems with pooling and if this could be going towards end of life xx

11 Replies

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  • zso sorry  hear about your mum

    plz let us kn ow what happens.....

    ...h

    lol jill

    xx

    PSP person in |UK

  • End of life has as many definitions as there are people on the planet.  Your mothers problem, if PSP,  as you know is progressive....It is certain that those with PSP will die from symptoms caused by PSP.....However there are many on this site who can attest to living a good life; monitored and adjusted for, but still as normal as normal can get.

    Your mum maybe not experiencing negative adjustments to PSP.  You may have eased into the disease so that you do not see it.  Part of PSP is Apathy...her fight may be her severe acceptance...or in my husbands case just doesn't seem to care...(that is very hard on ME when I need my husband there emotionally) but this apathy may be one of the things that keeps many PSPrs not going crazy if they had the full emotional pain of their disease!

    My husband has a mucous sucking machine that sucks B's saliva out of his mouth...it goes into a "spitune" which is cleaned daily.  It helps B a great deal from slobering and choking. But he also cannot swallow which leads to his other machine, PEG feeding

    Both work well those spit machine (if I may be so vulgar) is VERY LOUD...so this week I went and built a soundproofing box! WOW it makes such a difference....I would love to send a video of before box after box noise level!!!!

    So you might consider these machines if your mum can no longer swallow

    All the Best

    AVB

  • How did you build the box, please, Mrs. B? The machine IS so loud, and I'd like to build one myself.  We haven't been using the machine much at all since he started the atropine, which has made a dramatic difference, thank heavens, but as we know, nothing works forever, and I'd like to be prepared. So, do tell. How did you do it?  Love, ec

  • I measured the machine into square units. The largest side was our standard.  I used two board types. One is really heavy, very dense, called particle board (this particular kind is a little more aesthetic than regular kind

    the other board is much lighter but for sound absorption....basically ceiling tile. After measuring 12 inch cube  ( door is 14 inches) {31cms squared} with the heavy board my son connected them with two inch L brackets two for each wall and either 4 or 8 brackets to the floor.   I cut tile to size and  was going to glue them in, but they were snug enough in the box that we just slid (and pounded) them in.

    The lid is the hardest thing. If your machine is like ours the only way to turn the thing on is by flipping switch on the side!!!! I tried making a remote of sorts but because it has a power pack, (a battery that goes into override when electricity is cut off) the machine will stay on until switch turns off power pack....you have to leave the switch on for remote to work.....Anyway so now I have to fit the door with a  Spring Lid hinge so that B can open it without slamming it on his arm.  We found that the exhaust vent does not need to be vented on the outside for Three reasons:

    *It gets the 02 from the suction wand not the air around it (like a generator) thus its "breathable"

    *It is not combustible (please right me if I'm wrong...all motors have heat) thus it does not heat up like a generator

    *It is used for seconds at a time not giving the motor time to heat. thus not needing more ventilation.

    When all is said and done the box turns the 3 pd motor monster into a 25lb motor maid.  It's still audible, but the dbs (decibles) are reduced by about 20 so now instead of having dbs of a lawn motor in you room, you have that of a fan!

    Please ask more questions if need be....It's not really hard, if you know what you're doing or what you need!  I went to several recording studios to ask them what they used.  One man said the secret is in the frequency.  Because sound is a combination of frequencies you must use a combination of densities to absorb all frequencies!  I think that bit of info helped me the most! oh and this...

    ...measure twice, cut once! =(

    AVB

  • Brilliant! You seem a very practical and handy person, Mrs. B! Thanks! Several recording studios? I wouldn't know where to find a single one!

     I had been trying to think of how I could rig a remote, just because he can't manage the switch, so I was hopping up and down at 5- or 10-minute intervals over the sometimes hours of use to turn it on and off. Good exercise, I suppose, but èxhausting. The problem is the internal battery.

    I do have leftover ceiling tile. I will see what I can rig up. Thanks again. Ec

  • I "hear" a soundproof box in your future!!!!! Who would a thunk it  5 /10 years ago we would become engineers today! One of the recording studios I found by accident. While driving from one guitar store to the next asking for suggestions, I took a left instead of a right and there it was.  That was the studio who enlightened me.....the owner's father has Parkinsons and needs special machines too!!! the studio man never even thought of making a box for them.....I feel like going to all the places (including an electronics place for the switch and a cabinet shop for the box [they got too busy and had to cancel my job])and showing it off...I am that proud of it's sound quality....or lack thereof!

    Be forewarned it gets heavy so be sure you can lift it if lifting is an issue!

    AVB

  • I'm thinking a wheeled cart may be the best way to go!

  • for man and his machine....In fact I wheeled B to the bathroom last night! It's getting more difficult. In fact he fell on soundproof box and ripped lid off already.  It still works just needs new hinges...that man (She says in exasperation!)

    AVB

  • Don't I know it!!!

  • try and get her to let it run out. Our dr said botox would help with the saliva but we didn't do it as when you have no saliva in your mouth you then get problems with gums and teeth. My husband has been around the world with only peg feeding of 2 cal per ml Ensure.I put a tiny bit of chocolate on his tongue and also the froth off my coffee so he gets some taste. The dr also said that you can give someone all the medicine and treatment in the world but if they want to die they will. We just went to watch the grandson play soccer yesterday and today after church went for a walk through the local park and my husband has been peg fed only since October 2014 when he nearly died from dehydration. Good luck.

  • Sorry, richmond1, that we went off on our talk about the suction machine and I didn't respond to you. I don't know anything about pooling saliva, but have found atropine has helped stem the bouts of sticky phlegm that were tormenting my guy.  He's been on it about a month now, and it has dramatically reduced the worst of the saliva problems.  That said, he's beside me right now, gagging and choking and breathing very harshly. Trying to sleep. Ha. The atropine isn't a perfect answer.  

    I sometimes think the psp apathy is not the worst thing, as it seems to blunt some of the emotional suffering. It's good that your mother was able to make her wishes known, and that the palliative care nurse was able to talk to her. It seems your mother is being well cared for. I wish you strength and comfort. Love, ec

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