Another fever. Another infection?! - PSP Association

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Another fever. Another infection?!

hubetsy
hubetsy

Visiting hospice nurse thought C. sounded "wet" when she came for the weekly visit yesterday. The groaning, humming, gurgling attempt to clear his throat (which never occurs) had been increasing for a few days. It was only after she left (about 2 hours) that I discovered he had spiked a fever when I tried to wake him from a sound sleep (102.1 F, his usual temp is in the low 97.1F). Nurse had given him Hyoscyamine Sulfate .0125 mg to "dry up secretions" and we stopped Mucinex because he can't produce anything to cough up and out, it just seems to rattle around in his chest and throat.The Hyoscyamine likely knocked him out.

He was barely able to stand for transfers, we made it upstairs (stair glide) and to bed. Tylenol and cool compresses brought the fever down 1 degree by the wee hours, continued fluids every 6 hours along with cool compresses and Tylenol suppositories (he would not have been able to swallow he was so out of it and has swallowing issues even in the best of times.) By morning his temp was down to 98.1 almost to his normal. So far he's had a sizable 28 ounce fruit/vege smoothie and apple sauce to swallow meds (he's feeling a bit better). Not interested in the high calorie smoothie but I'm about to push it. Antibiotics were started today. Z-pac. The Diarrhea will start if I don't get some Florastor but can't get to the pharmacy!

Even while acknowledging that we have lots to be grateful for, it's very difficult at times to maintain a good attitude. Watching someone struggle and being unable to help them with something as basic as breathing is anguishing.

I haven't smoked cigarettes in decades. Lately, I've considered taking it up. I won't, but, that's how long that darn addiction lingers. ha!

I needed to vent. I've edited out my usual "language" that would offend even the saltiest sailor. I'm Okay. For today.

So glad there are folks out there who get this -- the disease and the trials of caregiving. Somehow, sharing the particular disease makes the connection even stronger.

15 Replies
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Oh dear glad you got the temperature down don’t you just hate psp, george had also been coughing and choking last 3 days, gets very distressed, gave him yogurt, and cough medicine seemed to work, been calling me all day very tiring. It must of been very tiring for you, sending you a big hug xxxx

PSP is the pits!. Believe it or not, a hand full of years ago when we were going through the Parkinsonism phase (no commitment to a diagnosis until 2015 (I think it was) I recall a man saying to me when I was frustrated at not having a definitive diagnosis, "Just be glad he doesn't have PSP." Isn't that just laughable! The irony still strikes me.

Hi Hubetsy

You are an amazing carer. So informed, so on the ball.

Are you a doctor or a Nurse? Iv'e got to ask that - You are so finely tuned. +++

I'm so sorry you are having to deal with this, but you are doing so well.

I have read your post three times it is so full of good care / clinical information.

It must be grim right now - Hugs.

Hey, and I'm a sailor - Just try it - We can compete with profanities... though a carer usually wins on that one.

Yes, watching our loved one struggle so is more than gruelling, we all have to live that one. It eats away at my heart.

As an ex smoker - Yes, it never let's up... I keep some Nicorette quick Mist handy - Though I have not smoked for three years a nicotine hit now and gain does do the business.

We don't know each other, but reading your post I feel so close to your suffering and struggle. They are the path we are both on. So your post was a sharing and a lesson for me too. Thank you.

Just a lot of warmth from here.

Kevin

hubetsy
hubetsy in reply to Kevin_1

Actually, Kevin, I get lots of good advice from family, hospice nurses, other caregivers and from folks who share here on this page. I'm not in the medical profession, but this disease certainly makes pros out of all of us!

This page and the wonderful supportive posts I read are heartwarming. I am always taken by the thoughtful replies you post.

Thank you.

I am soooo sorry. I know I still have to get to where you are and it scares the shit out of me. How can I handle it? You seem to have it all in hand and in control but still linger on thoughts of that nicotine drag. I have been stopped smoking for a few years, went to vaping and reduced nicotine gradually til I stopped . I still sometimes need a nicotine fix but instead I have a drink!! Maybe I will get some nicotine gum or something. God knows if I feel like I do now only 3-4 years in what the heck am I going to be like in the future. You are so in control. And I am married to a retired sailor so I can handle the sailor curses. I do a good job of that myself. Hang in there. Love and hugs xxxx

hubetsy
hubetsy in reply to daffodil48

Thank you. Like I told Kevin, this disease makes pros out of all of us! We seem to grow into the job. Actually, now that C. is unable to get around at all without help, it's easier in some ways. I no longer jump out of bed to run and catch him before he falls. Those nightly "terrors" were the worst when I look back. I now sleep through the night for the most part, as does he. Thanks to a prostate procedure and medication to address his overactive bladder, we both sleep through the night.

Hang in there too. Squeeze in those trips while you can, take that vacation. I'm so glad I did take a few before we reached the point where we can't.

And, if I may make one suggestion, keep a list of things you can delegate to those who ask if there is anything they can do. I have had a terrible time asking for help and when someone offers I can never think of anything. THINK OF THOSE THINGS and write them down. ASK. I did tonight! and my C. can now take a probiotic that will prevent the terrible gastric effects of the antibiotic! because my friend went to the pharmacy for me and picked it up. that was my HUGE favor! --now if I can just find someone to weed my front garden....hahahaha

raincitygirl
raincitygirl in reply to hubetsy

Very good advice hubetsy (the help list) !!

Anne G.

Nanny857
Nanny857 in reply to hubetsy

Hi again Hubersy, was reading your post about nightly terrors, that's where we are at now, W was diagnosed with an overactive bladder. He's been on different tablets which haven't worked so far, so I'm hoping he gets that 'procedure' you mentioned so we can get a good night's sleep. xx

hubetsy
hubetsy in reply to Nanny857

Good luck! I hope he gets the procedure and it all goes smoothly. "Green Laser" I believe is what C. had. Our lives are the better for it!

Hidden
Hidden

I do so relate,I'm so frigging tiered this week.my guy still on a decline, usually by now he is starting to rebound.I really would like to switch out my hat for a while, caregiver,plumber, chief cook and bottle washer and not let forget the never-ending laundry duties..

Hang in,you all are doing your best that you can do.

Dee

hubetsy
hubetsy in reply to Hidden

Hope you can get some rest.

I keep hearing about respite care. I wonder if you have access to something like that. We haven't had any sort of formal respite care. Visiting certainly family members is the closest thing to that for me.

Hi hubetsy, I so admire your knowledge and the lovely way you care for C. W is constantly trying to clear what sounds like phelm in his throat but can't. Dr said his chest was clear but gave us an antibiotic to take if it didn't clear up in 2 weeks. We started that this week but no different so far.

Good on you for giving up the cigs and dealing with PSP at the same time, but stay with it. Big hugs xx

hubetsy
hubetsy in reply to Nanny857

Thank you! I've heard about some sort of device that will clear out the throat. I plan to ask his PCP about it at his next appointment. It was suggested that I cup my hands and pound his back. That will sometimes help him cough but the cough is never strong enough to clear things us. I was also told to increase fluids. --- if they only knew how difficult a time PSP patients have swallowing. Oh the challenges! But, tomorrow is another day.

hubetsy
hubetsy in reply to Nanny857

actually gave up cigs decades ago but here lately I've started thinking about cigarettes especially when the stress gets to be too much. I won't though. They've gotten too expensive! haha

I agree with you there. I gave up 26 years ago. Unfortunately when I feel stressed I have a glass of wine or there have been occasions when it's 2.

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