My dad was diagnosed with PSP 3 years ago. He was reasonably well, but now seems to have suddenly detiorated in the last month. He is falling more, incredible tiredness & waking up at odd hours in the night, unable to sleep. He is finding it difficult to swallow.
What is now worrying me most is whether he is delusional after waking up? He packs bags, saying he has a flight to catch & will refuse to listen otherwise. He gets ready to go to work, call his previous colleagues to meet him at office. My mother had to physically stop him from leaving the house. He would search for my sister in the house saying she was there a while ago when she had not visited. He goes to take a shower very early in the morning. Mostly some of his odd behaviour stops because he is too tired & will try & lie down on his own. I would be grateful if somebody can clarify if there is a range of cognitive impairments for people with PSP?
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Karuna
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I maybe am the wrong person to comment on your question. No one knew he had the disease until he was in the last stage. So, the stages before that, I am unfamiliar with. I can tell you my brother did have delusions. I was not sure if it was the disease or the pain killers. It seemed to happen most after his pain meds.
My brother would think he was going somewhere or exercising. Enough so that he would rip out his tubes and stuff and try to climb out of hospital bed. There were times that he swore someone came to visit, who could not have been there due to lots of reasons.
The thing is, the delusions only lasted for a bit. At the very end, he was very clear.
I know its hard and heartbreaking.
My thoughts and concern go out to you, yours, and your dad.
My granddad also had these symptoms when he was alive, I think like your father he would go back to a time in his life and make that his current reality it was very hard to deal with. Best advice i can give is just to have someone sit with him, and take him through the motions, at certain points you could challenge him on where he was at in an attempt to snap him out of it, but that can lead to more confusion, you have to time it correctly, best thing i could or anyone in my family could really do was be with him and ensure he didnt hurt himself, and after a while it would pass.
Sorry to hear of you Dad's recent deterioration. Mum has also suffered with hallucinations and nightmares. They started quite soon after she was diagnosed and have been pretty much a constant presence ever since. She takes half a clonazepam at night which seems to have stopped the nightmares (thankfully - as they were horrific!) and also takes Rivastigmine 4.5mg twice a day to try and reduce the hallucinations. Initially this seemed to help a bit but now they don't seem as effective, but she's on the highest dose so we just have to live with it. In a way it is "easier" for us to manage than it is is for you because Mum is not able to stand or walk anymore so she doesn't try to leave the house or get up and put herself at risk of falling but even so it is difficult to watch sometimes
On the subject of your dad's recent deterioration - Mum often "dips" a bit when she has an infection of some kind. You say your Dad is having trouble swallowing - it could be that he is aspirating a bit (food going into his lungs) and he may be brewing a chest infection. I would contact your GP and get him to check it out and ask for a swallowing assessment from a Speech and Language therapist.
Paranoia and delusions have -- in many ways-- been the hardest obstacle for me in coping with my husband's PSP. The physical deterioration is beyond awful, but to have to reassure, calm or deny allegations that he imagines to be real, -- is devastating. These bouts do come and go, seemingly 'out of the blue' at times. At first, since he was believed to have Parkinson's, we assumed it was a side-effect of the dopamine drugs and he was given Seroquel (anti-psychotic), Klonopin (for nightmares) and Lexapro (depression). But even after he was taken off the Parkinson's meds (Siinament and Azilect), the paranoia and occasional hallucinations would reoccur, resulting in extreme anger...especially when he would exercise his last vestige of control by refusing to take any meds at all. He has struck at caregivers, called them names and even grabbed at me in a very controlling manner. On Doctor's advice, I have had to administer the Seroquel anti-psychotic surreptitiously - (I hate doing that), and it seems to calm him down and is a low enough dose that he is not sleepy. My goal is to be able to keep him at home, as he is very much in the last stage of the disease.....completely immobilized, almost unable to speak, but still able to eat and drink thickened beverages. In spite of these manifestations of the disease, he remains 'in the moment' and is clearly following every conversation that goes on around him and gets bored easily. In a way, this makes it even sadder. Even though I know that none of this behavior would have occurred before the onset of this disease, it is still painful to watch.
This isn't very cheerful, but at least you know it happens in others with PSP. We are all on a long and bumpy road.
Thank you for writing. I am very overwhelmed with your narrations and compassion. I am a first time blogger & my dad 's new symptoms has shaken the family and I was feeling so lost and now feel held by your life stories.
jprall & Sarndeep, sorry about your loss& having to relive some of the days gone by.
Kathy, i didn't think of chest infection as he still manages to eat most of his food, will be on an alert.
Mira1 I agree that it is the hardest to deal with & you take on different roles as the disease progresses. Can the Neurologist prescribe anti-psychotic medicines?
Dad was previously diagnosed with Parkinson, the PSP diagnosis was a big shock for us. His current state is a second jolt. Somehow you can only comprehend 'degeneration' up-to a point & it hits you when you see it happening. My mother has developed high BP & diabetes in the last month. Her BP got so high that it could have been serious, but fortunately it got stable. My sister and me were suddenly seeing both parents going down hill.
Dad has all the classic textbook symptoms, PSP is considered largely a movement & communication disorder isn't it ? They often say about depression as a comorbidity. Paranoia, delusions & hallucinations are rarely elaborated. So I did not see that coming! It seems to affect people differently, could be brief, but could also be critical acts. I can't get over the fact that their thinking and awareness could be intact till the end & yet they would have bizarre expressions showing severe cognitive difficulty. Is it that the brain wiring gets mixed up?
Hi Karuna - I am so sorry that your dad has been diagnosed with PSP - anything we can do to help -just ask! My dad experienced hallucinations and odd behaviors --one time he asked me to get the "monkeys" out of his room because they were bothering him and they are dirty. This was the funny hallucinations -however - they became not so funny - I had a staff of caregivers and he thought they were trying to poison him -one caregiver used to bring his guitar and play music for my dad -but he thought he was bringing a machettie, he would want to hide because someone was going to get him - -- later on those went away and it was the battle of him wanting to get to "class" (college) -those were the easiest to diffuse with -no class today -it's the weekend - holiday and so on - -the more serious hallucinations are really tough because they are real to the person experiencing them. We noticed them mainly between asleep & awake times - -so when my dad would wake we would not approach him for a few minutes - -then we would say "Hi Dad" or his name -tell him who we were, where he was at, that he was safe at home and the day and time. We also put up a clock and calendar where he could see it. It helped but it was a tough time - we had hallucinations and really bad spasms in which he could not be still - he would do "bed gymnastics" -would need to move him from the bed, to the chair, to the couch, to the floor - you get the picture. This was the first time we introduced medication for anxiety which helped with the spasms as well. We had started with valium - but at this time we were not seeing a PSP specialist - -when we went to that doctor - he changed us to small doses of clonazepam - which really gave my dad some relief. As far as medications for spasms - don't waste your time (or money) on Baclofen or Trizandine - they don't work for PSP - they work for different areas of the brain. Also - many people (especially hospice) like to use lorazepam for anxiety - we had a terrible experience with Lorazepam -it made all of my dads symptoms worse and learned that this drug should not be given to people with nuerological disorders. In fact -at the time my dad was given this drug he was in an adult family home and had to go to the hospital because they overdosed him because they kept giving it to him because they weren't seeing the results they expected - -that was no fun! Since PSP is so rare -most don't know this -so watch out for that drug.
H Karuna, cognitive behaviour is common with psp as my dads OT informed us, he dosent have dilusions but has had a few nightmares saying he was tiling the roof and he couldnt get down (dont know why he was never a diy finatic or builder) but my dad gets gagresive and the OT said that is cognitive behaviour. speak with your OT or Gp you may be able to get some sleeping tablets to try and calm him down take care xx
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