I think the respite people are a little panicked. I have had a call from them both days Larry has been there. I am having to reassure them.
Larry is groaning. They thought he was in pain. He told them he isn’t. Looking that up online it is a late stage symptom. Called the social worker and let her know. She was appreciative.
They had given him Ativan to calm him. I don’t know that he needed it. They also gave him morphine. That I told them to stop. It will constipate him. I don’t need that.
Last night I got eleven hours of sleep with the help of diazepam.
I remember Steve's first respite. They phoned me about two hours in, saying he had fallen, couldn't understand why I was laughing, I said I had been expecting their call at least 1 1/2 hours before !
Oh Jeff the respite experience so fresh in my mind. After the 4th phone call reporting a fall on day one I asked if I could call daily and get a daily tally of falls unless of course he needed to go to hospital!! They had looked after a patient previously with PSP but not one who was as impulsive as my husband!! He totally ruined their accident report for that week, month and prob year. They wanted to get the doctor out to prescribe additional analgesia which would have really upset the apple cart!!
Enjoy your sleep wow 11 hours you will be a new man
Congratulations on 11 hours of sleep, nice! Now if only the respite team could get a grip! Morphine, really(?), gees! It’s good that they called you though and that you notified the social worker. I hope that the rest of your True respite will be smooth sailing for the next few days. Pleasant dreams!
When verbal communication becomes impossible and even gestures of affirmation or denial with the hands, tongue, etc. represent a remarkable effort on the part of the patient and the caregiver, a remarkable range of groans and moans have appeared that the patient emits with great frequency and persistence, even in dreams during the night.
Ruling out that the patient has fever or is in a painful posture, in the vast majority of cases they do not mean that the patient is suffering from some terrible pain, they simply have a light headache, pain on a leg or an arm and the solution is a "liquid paracetamol" or a massage in the affected area with a suitable cream (Vicks Vaporub has been enough in our case). Other times there are gas in the stomach as a result of a flatulent meal or the patient try to express a desire (to go to the service, drink liquid, hungry, eye drops, too much light or just to get bored, want someone listen to them, talk to them, read them, etc.)
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Or.... to be opposed to the main caregiver taking a respite or holiday.
In the 7.5 years we traveled with PSP we have avoided from opioids in case of pain due, in our case, to unwanted side effects.
And yes, respite hours and vacations for ALL caregivers are absolutely necessary.
Lets hope things settle down and you can actually relax rather than just have a rest, though those 11 hours sleep must have done you the world of good. Mum too makes odd noises, sometimes when awake, sometimes when asleep, does take some getting used to but sounds like they have over reacted somewhat!
Hope you have got some fun planned over the next few days.......
Dad was in respite care twice. I had made up a folder of his condition, explaining what it was etc. I gave that to the head of the nursing/care staff and she read through it. I never got one call from them. I did call them a couple times just to reassure dad I was coming to get him at the end of the week.
Hi Jeff166, I haven't been on here for a while. My husband who has PSP, groans a lot and most of the time it sounds like a loud, noisy growl that goes on for hours. Although he has been doing this for some time, it surprises me at times. He sounds like he is in a lot of pain. When I ask if he is in pain, the answer is always no.
One night, he scared the life out of me. I woke up to this horrible noise coming from his chest and I thought that he had a chest infection, he had no pain, but his breathing appeared to be laboured. I took him to the GP that morning. She listened to his chest and back and said that there's no sign of an infection but it is due to his PSP and there was nothing that can be done.
This horrible disease is so sneaky you never know what to expect. Enjoy your "me time"
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End of week 1 Respite
Respite Care
