Dad was placed on Hospice yesterday

Hello all, I've only posted in a reply one other time several weeks or maybe a month ago but I've been reading all of your stories and suggestions and offering suggestions to my mom during all of this CRAP 💩 and it is crap. Over the last month my dad has had a dramatic decline down to the last 3 days of no walking barely transferring or helping, my sister and I are Physical Therapist Asst so we have kept him as active as possible, he's choking on his meds, he's aspirating when he drinks and eats (which is very little at this point, only in the mornings) he's chocking and gagging on his own saliva/secretions we've tried everything to relieve it. He's already made his wishes known early NO peg tub, NO ventilator, his anxiety is through the roof!!! He answers our questions by squeezing our hands with Yes/No questions.... Good God how long can this go on 😩 In my 29 years now of being a Physical Therapist Asst. I've never ever seen anything like this. Please can someone offer any answers???

JamieO

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  • Aww Jamie I'm so so so sorry! I cannot offer answers but I can offer you my support and love at this absolutely awful time! I think your gonna need a lot of strength my darling x

  • Dear Jamie, I'm very sorry your father and you and your family are going through this. I wish I could help, and I hope the hospice nurses can offer some advice. It is awful to watch helplessly while someone chokes. I can suggest only the one thing that has helped my guy, and since you say you've tried everything this is probably useless to you, but atropine solution under the tongue has worked very well to save him choking on his own saliva, which has gotten very gluey. His doctor was originally reluctant to prescribe it, as he had only seen it used for end of life care, which is how I know it is used for that.

    Love and hugs and peace, ec

  • Thank you actually the Hospice nurse is supposed to be bringing it tomorrow, it's just so hard when he can't move, he can't talk, be he knows exactly what's going on.... it's like being trapped. And I know he's dying, it's just horrific to watch

    Thank you for kind words

  • If Atropine does not work, try glyccopyrolate

  • I AGREE J

    LOL JILLXXXXX

  • Hi JamieO

    I don't have answers, some of the more experienced folk here might.

    I just wanted to recognise your post and say that PSP is a nightmare ride for the sufferer and the carers. There is so much loss and just when we adjust to it more loss and then more. It can be hard to bear.

    Warmly

    Kevin

  • Try the drops they have worked very well for my mum. We are in the exact situation as you and it is horrendous .Hugs for you and your family x

  • I am só afraid for what is lying ahead for me!

  • Deep breaths calming prayers rest good food and drink and a couple of comedies.....set PSP aside each time in the day and concentrate on something that feels good for you......PSP will claim all near it...You must be bigger than it and you can be cuz you have us....and the Lord for those calming prayers....

    AVB

  • Hi,

    My heart goes out to you and your Dad and your family. Sending prayers for you all.

  • I am so sorry . When we were in ICU the physicians finally came back with "this is the most horrible disease", likening it to ALS....I could only agree that all neurodegenerative diseases are hell....

    I found why PSPers choke...I recently found a map if you will, of the autonomic response system. Swallowing is autonomic. We do think about it when we eat, but for the most part we swallow way more than we realize. When that response has 'deteriorated' or has been compromised the patients simply don't know how any more; there is no info getting back to the brain that they need to cough or swallow....till I guess enough nerves have been stimulated/ and then it's no longer a small cough but a full on 'save my life' sort of response....I now understand a little more what the urologist was telling me about the bladder sphincter....just not responding the to the need anymore.

    When I looked at the brain stem and spine, I noticed how problems arose in my husband disease...the occular muscle was one of the first things to go ... no downward gaze ....the is low on the brain stem high on the spinal cord...drooling the salivary is next to the eye and though I don't see anything that says lungs, I do see that the cranial X nerve delivers responses to the bronchi, Larynx and trachea...bam, bam bam all in a row were these particular loss of responses.....just as seen on the human map.

    The bathroom needs and gonads are down at the lower part of the spine though the response the urologist said and then pointed at the base of his neck(?) So though the nerves are above your hips(?) the response for PSP is up in the brain stem as well....

    Sorry to belabor you with all this info I've taken a new interest in it of late....but I do say this to say that if your dad chooses to go naturally then more power to him....you know where you stand You know that you have done the best you can for him and all there is left to do is love him.....well keep him as safe and comfortable as you can....

    You might want to use thickeners which eases the ability to pass the epi- and glotis to the gut...without leaking terribly into the lungs. of course crushing the pill putting it in stuff like pudding or apple sauce.....will help...but with my husband, his swallowing got fully compromised pretty quickly and he is on the PEG for everything,

    For the anxiety the hospice gave us Lorazapine....We have yet to use it but it may be good for your dad check with his Dr.

    Again sorry for the tome, I hope you can glean something out of it wish you and your family well.

    AVB

  • Oh my we will have to talk because I have been doing some of the same puzzle piecing together of all this.

  • Thank all of you for your kind words. My dad woke up Sunday very peaceful and said he was ready to go heaven. Keep in mind my dad just stopped walking several days ago and stopped eat on Saturday. He passed away on Monday at 3:36pm I guess when you decide it's time it's time. Thank God he's not in that horrible body any more but rejoicing with Jesus in heaven. Y'all have truly been an inspiration and have helped feel like I'm not alone. Thank you

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