hello.
my mum has PSP and is becoming increasingly distressed. It seems to be exacerbated by new staff in her care home not following her preferred routine.
Is there medication someone has found out in this community that could help her find some calmness?
Thankyou
Yes, there are many things that can be prescribed for anxiety, but even over the counter meds and herbal teas should be discussed with a doctor, since PSP can amplify sensitivity. I do sympathize. It’s hard to watch a loved one in distress.
Thankyou…. For your information and empathy.
Hi
Below is an excert from a a document regarding drugs for use with PSP an also types to avoid
The whole document can be found here
"Psychiatric features of PSP: Given the degree of disability, depression is surprisingly uncommon in PSP. Akinesia, apathy and pseudobulbar affect (below) may be confused with depression. Patients can score highly on depression rating scales (from changes in sleep, energy, motivation, libido, etc), but the core symptom of low mood is rarely severe or persistent. A minority of patients have significant and pervasive depression and anxiety. We avoid tricyclics (eg, amitriptyline) because of the anticholinergic effects. Selective serotonin reuptake inhibitors (SSRIs), especially citalopram and sertraline, are well tolerated and effective, with potential additional benefits for impulsiveness and pseudobulbar affect. Mirtazapine can be particularly useful if night-time sedation or increased appetite is desirable. Note that 15 mg mirtazapine is paradoxically more sedating and less antidepressant than 30 mg. Venlafaxine (a noradrenaline/serotonin reuptake inhibitor SNRI/SSRI) may help where there is accompanying anxiety.
People with PSP may suddenly cry intensely, appearing very distressed and tearful. This pseudobulbar affect is upsetting to witness but does not always reflect a patient’s inner distress. If asked, between the tears, they may deny feeling upset, or be aware of a surge of emotionality. The emotional lability can be laughter but is more often crying. If it is frequent, or distressing, then consider treatment; low dose citalopram (10–20 mg) is usually very effective."
Good information!
I can confirm that Citalopram has been helpful and well tolerated by my husband. We recently got a higher dose (40 mg) and realised that it was best taken in the evening - the prescription said "take ONE every morning" but the calming effects has been much better in the evening and lasts through the night. 💜🫂
my husband takes Venlafaxine for his mood which the Neurologist prescribed. 75mg + 37.5mg every night
I have been diagnosed with PSP and straight away my consultant prescribed me wìth citalopram (20mg) which I believe has had a calming effect. Above all talk to your Mum's GP (primary care physician), but more importantly, your Mum's consultant about her feelings. Hugs and kisses.
Hi We had this problem in the latter phases as the condition tends to increase the agitation and frustrations of PSP A small dose (2ml liquid) of Lorazepam in the evening and a similar dose of Escitalopram (10 drops) in the morning. This is by no means a 'chemical cosh' it merely seems to calm my wife and does not have nasty side-effects.
I’ve not heard of a medication but could probably do with some myself at this very moment! My carer has gone on holiday for the first time. I’ve got a firm to cover and so far, out of eleven visits I’ve had five carers! I’ve difficulty with speaking and it’s rather frustrating having to explain things over and over again, so I understand your mum’s feelings entirely.
Oh dear. I’m sorry to hear this. New staff seem to appear weekly for mum ( underpaid and overworked I suspect) . They never seem to be given to correct training either….,
Good luck to you❤️
It's crazy how much you have to teach yourself to help a loved one. It really detracts from being able to just spend time together.
Sorry the home aren't accommodating your mum's needs. We're thinking about complaints for every organization we dealt with for similar reason. So if you are able to find a way out infront of it that would obvs be better but I get how challenging it is having to pick up the slack.
Can you think of a way to get the carers to follow her routine? It sounds important to her. Could you add it to the care plan or buy extra staff time? Put posters up in her room? Get them to do training with pspa? If she's not that settled there could you find a new home that is open to more person centred care?
It sounds like your mum might benefit from someone sitting with her and reassuring her. Or maybe soothing sensory activities like hand massage or soft music. Mum liked birds song and waves which we found on YouTube. But sometimes she was just overwhelmed and needed me to be in the room with her quietly. I think there's something in cbd/psp about not being able to self regulate emotion.
Not sure if it helped but mum was on lowest dose sertraline to control fainting and mood, which seemed to help, but somewhere along the line it was increased to 100mg which I think caused more problems but it's hard to say.
oh Thankyou so much for your caring, supportive advice/ tips. I’m actually in holiday at the moment but an aunt phoned me on Monday to say how distressed mum was( I had asked beforehand that she be honest with her feedback even though I was on holiday)
I’m trying to learn as much as I can before I go home tomorrow so that I can help mum in the best way possible. The care home seems to have such frequent staff turnover which does not help….
Your message made me a bit teary but in a good way….. so supportive and understanding.
PSP is such a cruel, horrid bloody disease….
Hi Girvangal, my mother sounds to be at the same stage as yours. In a care home and feeling very restless now. She giggles at random things. She said she cannot keep her eyes open and cannot walk with a walker unless assisted. Had many falls, so hard to stop her being so impulsive to get up. I only wish I knew how long she has and what stage she is at, such a wicked disease. I am going to take her to her neurologist in August and mention the low dose citalopram that has been mentioned to hopefully ease her anxiety.
My heart goes out to you and all of us dealing with this situation.
Much love sent x
Hello mumnme. Thankyou got your reply. Wicked is indeed a word for this disease!!!
Mum can no longer use a walker and is now transported around the home by wheelchair. She is helped by 2 members of staff to go to the toilet and just hates still her total lack of independence. What’s most cruel I think is that her cognitive abilities are more or less as they were. So she is well aware of what she’s lost…. So sad. The most distressing thing at the moment is her voice which is declining fast.
It turns out we have a neurological appointment on Monday so I will have the chance to discuss all the advice I’ve been given by the gorgeous people on this forum.
I agree with you as to the uncertainty around stage of the disease…… there seems so many variations with people suffering in slightly different ways…. All ugly though. My mum repeats words especially “ Thankyou!” A zillion times in conversation…. But we laugh and say that there are worse things she could be repeating!
I read about singing involving a different part of the brain than speech so we have wee car sing songs…. The ugly bug ball being a particular favourite.
Anyway, like you and countless others I try my best for her. She’s my mum and I love her dearly!
We can all just keep on keeping on.
Much love to you and your mum.
Hi.
Sorry to read that your Mum’s carers are not following her routine, how very upsetting and frustrating when this is so critical for our loved ones on so many levels, including managing anxiety.
My mum suffers terribly with anxiety (historically too) and definitely doesn’t respond well to changes in her routine or new faces. The latter becomes better once she feels safe with someone new and they understand and respond well to her specific needs.
Any additional anxiety triggers so many negatives that are far reaching and can affect how she presents in terms of behaviours, emotions, muscle stiffness, tremors, how well she eats and drinks, tries to communicate, sleeps, mobilises even toilet habits.
Medication that has helped Mum with her mental health/behaviours (prescribed by her psychiatrist) has been Sertraline and a low dose of Diazepam. Massage, music or a good sitcom from back in the day also helps cheer her up. Not to mention getting out for some fresh air when possible.
I hope that you’re able to get your Mum’s carers on board with your Mum’s specific care needs and also that her GP/specialist can advise on any medication that may help your Mum too.
Lots of love to you both x 🥰
Thankyou Milocorn.
It’s so reassuring to read your message… sometimes I feel the care workers don’t really understand the specificities of PSP, and that my mum is not just ‘being difficult’.
I have a meeting with social work soon for a care review meeting and then with neurologist . your reply ,with those of other kind people in this community , will really help me to make the case for much better care for my lovely mum.
Xxx
lack of help
How do you help someone from constantly getting up and about without supervision?
Eating is optional for my sister
CBD decline
Mum's progression of PSP
