Hi everyone, my mom is 70 and has been living with progressive (psp) Parkinson’s for about 4-5 years. It started with blank stares and stroke like symptoms and then she began losing her balance and then just falling all the time. She went from a walker to a wheelchair and now she spends most of her time in bed. Her eyes are unable to open in their own and is very sensitive to light. She has special blazers to help that and has gotten Botox to help keep her eyes open. It has helped. The crapping ( Charlie horses ) that she gets seems to be under control. The issue that I am having is the lack of reasoning or comprehending things. She has good days when I feel like I can hold a conversation with her and I see my old mom reappear but lately she has more bad days. She is always anxious and has a hard time just sitting quietly and wait for help. She will constantly call me up stairs to fix her sheet or pick up a paper that falls on the floor. I will hear her talking on the phone at Like three in the morning, once even calling the police telling them to come and get her because my dad had kicked her. Luckily I had convinced her to give me the phone so I was able to explain the situation and resolve the situation. She doesn’t even live with my dad. She will eliborate stories and sometimes make things up. So irrational and mean. Crying and screaming and the next day okay. I just don’t know what to do anymore. We will be seeing her doctor in the next couple of weeks and I hope that they will be able to give her something for her anxiety, the hallucinations and irrational behaviour. The concoction of pills just don’t seem to be keeping her at a calm state. Would anyone be able to tell me if this is normal behaviour when dealing with psp? I realize that there is no cure but I don’t want to put her into a nursing home because my fear is that she will have a nasty fall and injury herself but I am also beginning to find it so hard to deal with this condition and her mental decline. Is it possible to give her at a more relaxed state or can nothing really be done. Any advise would be so helpful. This is such a rare disease that I often feel alone and that a lot of people really don’t understand. They confuse it with typical Parkinson and it’s not. Thank you for listening and all support that is given. GOD bless. May we find a cure for this terrible disease that kills our loved ones piece by piece. Tina
Anxiety and irrational thinking/ hallucina... - PSP Association
Anxiety and irrational thinking/ hallucinations
Hi, if your mom has PSP it is not progressive Parkinson's. The PSP stands Progressive Supranuclear Palsy. The brain neurons produce Tau. It is one of six PRIME OF LIFE BRAIN DISEASES...PSP, CBD, MSA, FTD, ALS and CTE. You can google for more information. You will notice that Parkinson's is not one of those "prime of life brain diseases". Parkinson's produces "alpha-synuclein" in the neurons.....not tau.
My son died May 4, 2017 of PSP at the barely 55 years old. He had double vision, fatigue, and anxiety as his first symptoms. As he progressed he often displayed compulsive ritualistic behavior. Some of what you describe I have read on this PSP site. My son did not display hallucinations, but much of the other behavior he did. Hopefully, others will send you their experiences.
Los Angeles, CA, USA
Hi Tina, I also look after my Mum who has PSP, she is 71. She has occasionally seen things that are not there, but mostly she seems to be free of those sort of symptoms. I think her medications were charged and there has been nothing since then. As her physical symptoms progressed, she was very concerned about dementia, so we asked her neurologist, Professor James Rowe, who is one of the leading PSP experts here in the UK. He explained that dementia/irrational behaviour is a symptom of the condition but normally the symptoms show up right from the start. In my Mum's case, she is fairly steady but as Jen said others have reported similar issues. So use the search function for more info, this is such a good resource, so many helpful people who have been there and done that. I would definitely talk it over with her neurologist at the next appointment, they may be able to offer advice about how you can get some assistance if needed. In the uk, there is some state care available and there are also several different charities that will help. I am assuming you are in the US as you used the term Mom, I know that getting assistance is very different over there, there again some of the people on here have been through that battle there, so do know what options you have.
Good luck with getting something sorted, it will help to only say "a bit like Parkinson's, but not" otherwise as you say people assume it is the same.
John us under James Rowe. He us excellent isn't he x
I feel for you! My mum suffers from CBD AND her symptoms are exactly the same including her behaviour!
She is extremely demanding, keeps calling for every little thing. To pick up the papers off the floor , to straighten the bed sheets to move something from here to there etc. She can’t see us sit down and relax! It is very tiring to be around her! She is almost always complaining
She is in a nursing home for the last three weeks and even from her mobile she will call me every morning screaming at me to
Call someone to attend to her
From there there is no peace believe me!
I have asked her
Professor to give her calming tablets and they now have to
Do a psychiatrist assessment to establish exactly what she needs
We need the calming tablets ourselves believe me!!
All the best and keep strong
You have described symptoms that many others have also but as far as being normal I'd have to say no since each patient is slightly different. What symptoms manifest really depend on the area(s) of that brain that are being attacked by the disease. Since you have an appt with the doctor in 2 weeks I'd call, explain the situation and hopefully get an appt sooner. When you do see the doctor try to convince the doctor to run a complete work up checking for any signs of infection, especially UTI. It may be a dead end but there are numerous posts about UTIs and hallucinations.
My mother has CBD but has some similar manifestations of behavior as you've described. The anxiety and obsessiveness has been prevalent for my mother and though she is now in a care facility, I do get calls from the Aids asking me to have a conversation with my mom about how they can't constantly adjust her in her chair or bed (calls 10 minutes apart, ending in her screaming down the hallway as if she is dying if they don't come) - amongst many other unreasonable requests. (And she doesn't care that her requests are beyond reasonable, or that they upset other residents, and often simply can't be fully accommodated, or that there are other people to be cared for, she just frequently makes a comment like "what the hell am I paying these people for" -- in other words a very callous response). It's kind of funny and ironic that in her former life, one of her favorite Aesop's fable was the Little Boy Who Cried Wolf (and she often reminded us kids of the story when she thought we were being overly dramatic over something silly or small).
I was at my whits end about 4 months ago and posted on this site because I just didn't think I could deal with it all one moment longer. I got some good advice and though things are unchanged with mom, I've dealt with it a bit better in the past few months (but every nasty interaction I have with her sets me back a good day or two... I spend less time with her now to avoid my own burnout given these dynamics).
The personality changes have been the hardest to deal with, and because I'm pretty much the last person left in the family to deal with her care, I get the full brunt of it. Earlier this week when I brought yet another load of "emergency" items that should couldn't wait even one more day for (new pants, new shirts, vitamin C, chocolate -- I say with an eye roll here), I was told I was a Doll, but by the time I left I was told I was a Dictator - that was in a two hour time span. My old self is back a bit because I simply laughed about the double D's (Doll to Dictator) most of my drive home. Character assassination of me is a large part of mom's tool bag of tricks to manipulate people -- and that is hard - unless you can keep it in perspective (I vacillate from being able to brush it off to it wounding me deeply).
After dealing with this vexing constellation of symptoms and altered behavior for nearly five years (she has had the condition for much longer, but the personality changes didn't become significant until much later into the progress of the condition), I got to the point that I felt mom wanted me to be a proxy for her pain and her demise -- she often tells me I don't know her pain or anguish in away that implies I should try harder to or do better at it (including frequently telling me I'm signing her death warrant). It finally occurred to me, in my last post about my troubles in dealing with this aspect of the condition, that I came up with the idea to develop a mantra to help separate me from her... and it was/is that ... this is her journey, not mine -- I can't go on it with her in the way she wants me to... this is her life, not mine. I will have my own unfairnesses that I will uniquely encounter in my life, I don't and can't assume hers. So I simply tell her that this is her journey and that it is hers to travel uniquely and that I can't go on it with her. It doesn't change her, but it helps me not to slip into the black hole of unreality that this condition can generate.
*And when I tell people that I had to get my mom Vitamin C, they don't really understand the craziness of it all -- as that simply sounds like a reasonable request. What is unreasonable is the three calls a day saying the order still hasn't arrived, or that it isn't time-released, or that you got the wrong milligrams (1000) and she can only take the (500) because the other two brands dissolve in her mouth too quickly (they are all identical in terms of size and outside gelatin capsule casing -- there is NO physical difference among the varieties she has refused over the one she insists is just right). Or that she already gets a 500 milligram tablet from the aids when her meds are dispensed ("not enough milligrams" she states when I remind her of this), and then I mention she also gets vitamin C in the multi-vitamin tablet that they also give her -- still not enough. And that's just the Vitamin C....
Wow! You are a saint. I have days where I get frustrated but my father is a gentle man. Always kind and very thankful for my help. I find myself frustrated because there is nothing I can do to stop this. I am his 24/7 caregiver and it gets exhausting. After reading your post, I counted my blessings that dad is easy
My Dad died in my 20’s (I was his care taker too because my parents were divorced and he lived alone); he had brain cancer, but he was so sweet for the year and a half of care, he was so wise in the important things in life. So yes Jodi, it is a blessing to have a parent with this disposition near the end of their life. Dealing with mom has made me realize how lucky I was with his graceful attitude.
I do believe mom’s case of CBD is a bit of an outlier in that we are going on 15 years from when I first noticed symptoms (only 5 since official diagnosis though because she refused to go to a doctor for many years), and I think her personality changes and subsequent difficulties in dealing with that is not typical (though I’ve read from a few others on this site who’ve had similar experiences). I get worried that new members may come across my story and think that is what lies ahead for them - when most likely it won’t be this extreme. Everyone’s case is unique though there are commonalities for sure.
Omg I have exactly the same with my mum! You just never win and they become spoilt rotten
U must be very careful not to let yourself get sucked into their world!
Thank you so very much for sending such a supportive message my way. I can’t tell you how much of what you just explained is exactly like my mom. The shift in mood, the mean things that she might say, the constant calling, when I am in the house with her or even when im not, she too will call asking for things and expecting things right away. I can’t tell you how many times I have lost my temper. Sometimes it feels like she just doesn’t want me to rest or have a moment to myself. I do realize that this isn’t her but the disease but it is so hard. This weekend she spend it with my dad and the whole weekend she pretty much put him thru hell with the way she was acting. She kept telling him that he was hiding something in his room and that he didn’t want her to go into his room because he was hiding something from her. I actually went over there to try and help. I took her into his room and she had me check every drawer and then some and it still wasn’t enough. She woke up Sunday morning saying the same thing to him. My dad even took her into this room and showed her around again but that didn’t work. My dad is 76 years old and in remission from cancer. He has cared for my mom with all the love and patience of anyone I know but it wasn’t never good enough. The last thing on my dads mind would be to unfaithful to my mom. But she is irrational and unable to reason with. The other day when she was at my house she put herself on the floor and insisted I call the ambulance to take her to the hospital so she can go into a home. She laid in the floor until the arrived and then told them that I don’t come when she calls. I couldn’t talk to her. Then two days later she was so mean with the things she were saying and then began to scream out crying. That seems to happen a lot. I have learned that when she gets like that to just shut her door and let her go thru the emotions. Nothing I say is ever enough to comfort her or help. What was the breaking point that made you realize it was time to put her into a nursing home? I am starting to believe that this may be well beyond what I am capable of. If she was just rational and calm I would be able to manage but she isn’t. It’s just so hard. Reading her post has helped more so very much. I thank you and send all my support your way. Xo
You are welcome - I’m sorry that we have this in common, but I’m glad my story can help you, like others have helped me here with theirs.
To answer your question briefly about when mom moved to an assisted living facility, the short answer is that my younger sister, who had moved into mom’s house to care for her, died unexpectedly. Because I had my sister’s estate, her business, and mom’s business (which my sister had been managing for mom as well of taking care of her) to suddenly deal with - she had to be moved as I could not provide full care with all of the other demands. In a rare moment of agreeableness - mom conceded to go.
A more full story of how it happened is in my first post to this board 2years ago. healthunlocked.com/psp/post...
For me, it has been a lifesaver to have the facility as part of the care plan, but the tragedy of the condition still affects me even with her in care.
I also wanted to say that I think you’ve hit the nail on the head with my grief in your statement: “Nothing I say is ever enough to comfort her or help. ”. I just want to comfort my mom in her final days here, to let her know she was a great mom (prior to the personality altering disease); but I can’t — the paradox of the disease prevents this. It’s not bad enough that I’ve lost my sister and mother (and my closest and dearest friends) in one fell swoop, but that I feel I’ve also been robbed of the chance of having a good and dignified parting at the end with mom.
I do relate to this Mum definitely has bad days & better days. She sees things on & off, used to be rats in the bathroom, now tends to be dogs or cats and washing out the window - she's in a 3rd floor flat so unlikely. She also thinks my Dad sleeps on the floor next to her and she calls him in the night & he doesn't come (he died 7 years ago), which upsets her. And sometimes she thinks I'm there, when I'm not. When I am there, she definitely likes to be in control and the idea of me sitting down for a moment is just not on, she always finds a task for me to do. If I happen to leave the room she immediately starts calling, or if she is struggling to talk, she will tap until I come, then it will be to ask me to do something I was probably doing already. I try to do as many things as possible within her sight, so sorting laundry gets done in the living room as does some food prep. Sometimes she gets totally convinced about something that is not true, I have come to realise that there is no point arguing, just try to accept that it's her truth and try to get her stop fretting however I can (that she had 2 talking clocks was one, and she was unhappy with the one in the living room and wanted the one in the bedroom, having tried many a time to rationalise with her, this time I took the clock out of the room and brought it back in again, she thought I'd swapped clocks & was happy) Before I leave I make sure she has cups of water and coffee - she has a whole selection of different feeder cups and everyday she wants a different combination of cups, usually 3 cups of water will do but sometimes she wants more - 6 is the highest so far (I will run out of cups if it goes up from this) and usually it's the tall blue thermos cup for coffee, but this week it's the small thermos cone cup, which was rejected when first bought as it didn't keep the coffee hot long enough. Sometimes I can laugh about it, sometimes I cry....
Suggest you speak with your mother's neurologist about the possibility she has Lewy body dementia. The fluctuating cognition and delusions are classic LBD. These two symptoms do not appear in PSP. (Delusions are exclusionary for PSP.) First line of treatment for fluctuating cognition and delusions is reducing Sinemet (levodopa). Second line of treatment is an AChEI, such as Exelon (razadyne). Third line of treatment is something like Seroquel or Nuplazid.
Hi Tina and welcome! You have found somewhere that you will find answers to your questions from those who have been there too.
My husband suffered from CBD and only briefly at that. However, I have seen numerous posts similar to yours where the PSP sufferer has been irrational and so unruly and difficult that the carer has found it difficult to manage. I cannot give you any specific suggestions, but I think others will echo that it is part of PSP, and that it will/may pass. Someone will tell you what has helped them cope.
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