Help! Need advice for late-stage care

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Help! Need advice for late-stage care

Postby Moderator » Tue May 23, 2017 12:21 pm

Note by Moderator: This post by elines75 (joined 11/12/2013) was moved from the "Palliative Care" topic below to this new one because of its fresh importance and sense of urgency for caregivers whose loved one is in late-stage of PSP, CBD, or other neuro-degenerative disease. It was posted 05/22/2017.

I feel your pain. You would think there would be a book of "how to". My Mom was diagnosed with PSP in 2012 at which point she was still driving! now she is totally wheelchair bound. We have someone come in every morning for 3 hours and pay her by the hour. Between my brother and I we cover nights and weekends. Dad is 86 years old and still insists that he can take care of mom. When we first started on this journey, I too questioned why doesn't someone tell us and guide us as to what to do and who to reach out to for help. I've since figured out that a hospital bed is covered with medicare, at least the majority of it. That was a huge help. I've also since gotten Visiting Physicians where they come to the house and check Mom at least one a month rather than us taking off from work and getting her to a doctor's appointment. I also purchased the sliding chair that goes from the toilet straight into the shower. That is a life safer. It is so sad because I know Mom understands everything and it just keeps getting tougher and tougher. One question I have, if she chokes, whether its on liquid or food, do I do the Heimlich maneuver ? I mean I know if its with food, but if its liquid, she is choking more and more. We only give her small pieces of food and much of it is mashed. Liquids always have the thickener in it. Any suggestions are appreciated.

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Re: Help! Need advice for late-stage care

Postby Robin » Tue May 23, 2017 4:20 pm

Sorry to hear about your mother. "Yes" to the Heimlich maneuver. Everyone near your mother should know how to do this. Plus, this is a good question for the speech/language pathologist as well. We asked our SLP if striking someone on the back was effective or not.
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Re: Help! Need advice for late-stage care

Postby Brutus22 » Wed May 31, 2017 5:57 am

Any help on this would be greatly appreciated. I had to call EMS because Mick was choking. He was sitting in his wheelchair and slumped to the side. I tried the Heimlich over and over but he was dead weight and I could not get any lift. I hit him on the back so hard that I left marks and the man on the phone kept telling me to get him standing but I couldn't. He is ok and no aspiration. Do you hit with open hand or fist - or does that even matter? He did not lose conscious but I notice a change in his speech. I was hoping he would rebound but it has been 4 days and he can not complete a sentence.
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Re: Help! Need advice for late-stage care

Postby grandmakcat » Thu Jun 01, 2017 1:34 pm

This is an extremely scary situation to be in! I remember it very well! And no matter what you do, the feeling of helplessness is overwhelming at times.
I had to do the Heimlich Maneuver on my husband many times along with the back strikes (using the heel of your hand). I found this YouTube video (there are more on the same page) for ways to do the Heimlich on someone in a wheelchair. The link is Notice they say to call EMS first, especially because of the complications with the situation to be on the safe side. I hope this helps.
God bless you and (((((((hugs))))))) for your caregiving for Mick. I keep you all in my prayers!
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Help! Need advice for late-stage care

Postby Brutus22 » Mon Jun 05, 2017 3:27 pm

Thank you Ronnie. The youtube videos are really helpful and hopefully I will be calmer next time it happens. It was really difficult to focus at that moment and I probably sounded like a crazy women on the phone but I am sure they are use to that.
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